Our Boys

    

       Our oldest son Blake suffered from Congestive Heart Failure at 12 days old. Cooper, our middle son, underwent reparative stomach/esophageal surgery at 8 weeks of age and our youngest son Gavin was rushed to the Intensive Care Unit at Children’s Mercy Hospital on the very same day he was born with a collapsed lung (tension pneumo-thorax). The first few moments of each of our children’s lives were filled with uncertain calamities which were accompanied by large creeping black shadows of doubt as to whether or not each of them would survive. Gavin has been cleared by the doctors with a clean bill of health; however, his curiosity has come close to ending this streak on several occasions. Cooper is still attempting to master simple sounds of the English language as a five-year old, repeatedly butchering even his own name when responding to requests for an introduction.

“What’s your name?” A stranger inquires.

An innate innocence and eagerness to share beams from Cooper’s eyes as they grow larger and he smiles; He unashamedly mispronounces his name, “Pooper, my name is Pooper”. 

That Would Be Doctor Pooper To You...

You cannot help but laugh or at least chuckle before trying to correct him. The stranger looked at us as if this was some kind of deviant attempt by our son to engross them. We hustled to correct our speech impaired son, ‘Cooper, his name is Cooper”, I replied to the stranger with a smirk. And then there is our oldest son, Blake…our precious Blake.

          Blake was born on a hot July day in 2002. Twelve days after Blake was born, he was in Congestive Heart Failure, desperately needing a life saving surgery to correct a congenital heart defect. Blake was always ahead of the learning curve as a young child. He is extremely smart and inquisitive about most matters pertaining to life and his environment. He mastered walking; OK, maybe not mastered, but he took his first staggering steps at eight months old and quickly progressed on to walking and running soon after that. He was leaps and bounds ahead of most milestones including everything from talking, social skills and identifying concrete objects among a host of other criteria that is frequently used to gauge children’s developmental progress. He was a dreamer at an early age and quickly mastered yet another art, storytelling. He endlessly and darn near effortlessly went on and on and on and on…and on….and on, OK, I think you get my point…and on for countless minutes with imaginative stories that stretched far beyond the realm of reality. He mastered body parts, both the laymen names and their respective medical terminologies as well. He perfected his association with colors, shapes, letters and numerous numbers long before pre-school. Preschool came along and Blake seemed to surf through the curriculum with little effort. He possessed an unexplainable endurance for learning and knowledge.

Classic Blake!!!

  Blake encroached upon his first day of REAL school…Kindergarten. He performed very well at school, but was quickly identified as having issues maintaining his buttocks on the flat surface known otherwise as his seat. His teachers in both Kindergarten and first grade loved him. He was a special kid to them who had a huge personality attached to this likeable little character of his. As Blake progressed on to second and then third grade, he continued to struggle with staying in his seat while most of his fellow students conquered this menial task with relative ease. Our son’s second grade teacher recognized that while Blake was definitely not one to sit or stand still, he was excelling at the curriculum. The teacher suggested that maybe some of Blake’s inattention was possibly related to boredom with his class work. She recommended that we allow Blake to take a test for gifted children. There was an initial period of hesitation for us and several follow-up discussions which took place between Blake, my wife and I as well as members of the school staff. We decided to let Blake take the Wechsler’s Intelligence Test and his overall score was remarkable. The test was similar in nature to what I took in elementary school, but my focus was a little less stellar than what Blake’s was. I unknowingly created contemporary designs and large letters with the bubble-populated score sheet thus ruining any opportunity I had of being in a gifted program. I wanted to make sure that what we were doing and the decision we would ultimately make, had everything to do with Blake and nothing to do with my past desires to be a part of the gifted program. Intelligence is a great characteristic to have, but it is only favorable to the individual if they have the capacity to apply it to their everyday cognitive processes.  

Look At Those Cheeks!

          Sometime during Blake’s second grade year, we began noticing what sounded like a snort, yes a snort, kind of like the noise a pig would make, only reverberated. We questioned Blake repeatedly if he was alright and if his nose or throat was bothering him, to which he nonchalantly replied, “Sure”, “I guess” or “ I’m fine”. These are your typical run of the mill generic responses from the mind of a seven and eight year old child, but these half-hearted lackluster attempts at communicating didn’t provide us with any real insight as to what was going on in that little head of his. I mean, who knows, this unknowingly could have been some mysterious subconscious cry out for attention, but there was definitely more to it than that. My wife and I initially presumed that he had some sort of allergic reaction and wrote the whole thing off for a while. About six months later, we noticed something different, something very unusual to us; Blake began involuntary eye-blinking. At first these eye-blinks consisted of rapid-firing impulses, impulses that began overpowering Blake’s ability to control his own actions. Over the course of time, the eye-blinks slowed down a bit, but these involuntary movements increased with intensity. He would blink…his eyes stayed closed with a great force for several seconds and then released, only to repeat this process for however long that particular episode lasted. These motor tics, by themselves, are sometimes part of the developmental process for many children as their brains are rapidly developing and these types of involuntary movements are often considered transient and temporal, but this was just the beginning for Blake.

          Blake wasn’t personally struggling with his tics at this point in time, but we were starting to grow concerned. I honestly believe that for the most part, Blake had no idea these tics were even happening or if he did, there was no reason for him to believe this was considered abnormal. We weren’t exactly sure how Blake’s peers would respond or if his teachers would give him a fair shake in class with the presence of these involuntary movements and sounds, especially if they weren’t aware of his situation. Our minds steadily progressed like a freight train moving onto future scenarios and situations while we attempted to sift through this emotional chaos. I mean…Really? After everything else we had been through? One of our biggest challenges, among many we set on our shoulders, was how we were going to react to people in everyday life situations. You know…the kind that point and stare, make subtle comments under their breath or give you “the look” as if you need to control your child, all without saying a single word. We were guilty as charged for jumping the gun here, but then again, Can you blame us?

          Blake’s next tic secured his diagnosis. He was experiencing several motor tics, but for Tourette’s Syndrome to be diagnosed, the motor tics had to be accompanied with at least one verbal tic. Sure enough, this outward vocal expression forced him to meet the listed criteria for diagnosis and also led him down a path toward more aggressive tics. This verbal tic came in the form of throat clearing. We mistakenly thought at first that this was one of Blake’s cute attempts at getting attention, but the tic persisted and even more so when he tried to control it. These tics were followed by numerous other tics which came and went. Some of these involuntary movements include(d), but were/are not limited to; Lip biting, putting things in his mouth, head jerks, shoulder shrugs, nose twitches, throat clearing, snorting, eye blinks (rapid fire and intense) among several others.

PLEASE WATCH THE FOLLOWING VIDEO:

http://www.youtube.com/watch?v=qjWdnQZGScs&feature=player_detailpage

          Heather and I were growing very concerned about Blake’s present and future ability to adapt as the condition and his symptoms steadily progressed. We contemplated having a meeting with his teachers and fellow students to explain what was going on in Blake’s brain, but for the time being, we only communicated this with his teachers and other youth leaders.  Blake was taking this whole thing rather well. He even pretended to acquire some new, far-fetched tics to his mother and I, and then the punch line followed, “HAHA! I gotcha”. His ability to adapt in many different circumstances has been amazing, but he would experience the effects of Tourette’s Syndrome so severe that not even Blake would be able to adapt this time.

     We decided to go out for a quick dinner, something to try and appease the kids, but quick and easy at the same time. So there we were, on our way to something quick, something fast and something fun and that meant PIZZA!!! We decided to make our way to the local pizza buffet for an all-you-can-eat episode with the Harris Family. Blake’s tics were flaring with great frequency, coupled with a hand-in-hand intensity like we had never seen before. We drew nearer and nearer to our destination, hoping that a fun family outing would ease this onslaught of involuntary motions. Boy, were we wrong. Blake’s tics began shooting off in a rapid-fire format, almost extending beyond the capabilities of his physiological processes. He experienced physical pain due to not being able to control his own body. His eyes were dry and itchy, his throat hurt and I’m sure his nose was on the brink of bringing a bloody mess, but the more he tried to stop, the more the tics intensified. This isn’t a correlation that’s easy for a seven-year old to put together, especially when your body has a mind of its own.

I Got It Dad!!!

          Blake was growing weary, but he was still moderately excited to scarf down some pizza; however, this excitement was hi-jacked somewhere along the seven-mile drive from our house to the pizza joint. There was a brief moment when the tics subsided, but this momentary lapse in the electrical misfiring of his synapses allowed Blake to ask us an unprecedented question;

“Can we just go home?”, as tears welled up in his eyes.

I responded, “We can Blake, but can we at least try to eat something”.

We should have listened to him, because we hadn’t seen the likes of what was yet to come. Blake agreed to try and muster through it as we pulled into the parking lot and made our way through the front door. We paid for our meal and in the midst of other pizza patrons, we stacked our favorite pizza slices onto our plates. With a plateful of pizza and growling stomachs, we sat down and began eating our first of who knows how many slices from the buffet line. And then it started. Blake’s tics started back up with a couple of nasal clearings and then a head jerk.

Head jerk…nasal clearing (x3)…head jerk…eye blinks…nasal clearing (x3)…head jerk…head jerk…

He couldn’t even lift the pizza to his mouth, much less eat it. He placed both hands up to his face as he tried to physically overpower these movements, but with more resistance, the movements increased in frequency and intensity. He contorted his face in multiple directions using the force of his hands, but no matter how valiantly he tried, he failed each and every time. He threw his pizza onto the plate which lay motionless before him and started crying. In an effort to make Blake feel more comfortable and respected, we decided to leave without finishing our meal.

How's My Cheese?

We took our frustrations to the internet and began a feverish search, looking for journal studies that might touch on and/or provide insight into Blake’s condition. Several studies alluded to a possible deficiency of certain organic elements within the brain so we began a quest to try and treat this syndrome with supplements. This method of treatment proved to be fruitless as his tics did not improve or worsen while he was on the supplements. As parents, we do not like to medicate our children, but at some point, quality of life becomes an issue. You have to do something to see that your child will have a fair shot at the simple things in life. We turned our efforts towards the medical field and made an appointment with neurology. Due to the complex nature of Tourette’s Syndrome and the still mysterious pathology that may or may not cause it, the only known treatments available are medicinal in nature. This was not our first choice of treatment, but by this point, we felt it was our only one…it was Blake’s only one. These frustrations brought us to the realization that we could not be a part of Blake’s negative attention. He had to feel safe at home. He had to feel welcome and wanted at the one place where he is supposed to feel unconditionally loved…and this is the one place he HAD to feel loved. We had to come to another realization as well. There isn’t a so-called normal anymore; of course, there never really was a normal for us, but this was and is Blake’s normal. It does not mean there was/is something wrong with him; it just means there is something different about him.

Blake

          We reluctantly made our appointment with neurology and the doctor immediately diagnosed Blake with Tourrette’s Syndrome. The doctor provided us with blanket of comfort and absolute assurance as he also had a child with Tourette’s, a sixteen year old son to be exact. He was an Irish man, with an over-bearing Irish accent, as if he had just recently left his native Ireland. He carried an old leather bag like the doctors used to carry many years ago. It was black and worn with a small brass plate on the side of it which displayed his initials. He quickly garnered our trust and we administered the prescribed medication after having it cleared with Blake’s cardiologist. We were very fortunate in that the medication worked really well for Blake. It did not alleviate his tics altogether, but it did reduce them to a point where he can function normally…or at least what we consider to be within a normal range of functionality. The smallest dose worked which spared us from having to try a seemingly endless barrage of dosage combinations and medications while each time potentially hoping for a favorable outcome.

          The only time we really notice Blake’s tics now is when we forget to give him his medication or for whatever reason, every once in a while his tics overpower the controlling range of the medication, but this does not happen very often. Blake’s tics flare out of control under some fairly consistent conditions; Tired, when he is frustrated, over-excitement and even more so during the school year. If it could be summed up into one general state, the tics are induced by some level of stress, good and bad.  One of our biggest concerns now is the co-morbidity rate which follows Tourette’s Syndrome and involves behavioral conditions such as; Attention Deficit Disorder (ADD), Attention Deficit Hyperactivity Disorder (ADHD), Oppositional Defiant Disorder (ODD), Obsessive Compulsive Disorder (OCD) and other mental disorders. This rate hovers right around the 60 percent mark, but I will save this discussion for another post. 

          My little bit of advice, regardless of what might be influencing your child’s behavior, is acceptance. We live in a world where we are taught there is something wrong with the short bus. My generation has grown up making fun of kids who are different, whether that means retarded, deaf, dumb or blind, the epileptics, the wheelchair bound, the special education children, among a host of other diseases/disorders which affect a child’s ability to learn and interact. THERE IS NOTHING WRONG WITH YOUR CHILD!!! PEOPLE!!! THERE IS NOTHING WRONG WITH THESE CHILDREN!!! Sure, they might be different, but there is absolutely, positively, nothing wrong with different. The Bible says we are all children of God. I heard this next line at a leadership seminar and I cannot remember who said it, but I wanted to share it with you. Again…the bible says we are all children of God. We are ALL created in the image of God. Not one…Not some, but ALL. This means there is no hierarchy based on physicality or intellectuality, but that the basic foundation and fundamental being of each individual person is collectively created in the image of God. Not one…Not some, but ALL.

Blake at 8 Almost 9 Years Old

Giving it all away…

Give What?

                I met the Gibson family seven years ago in 2004. I had absolutely no idea whatsoever that this family, including their sick little boy Xavier, would impact my life, reinforcing certain future actions which up to this point had been completely ignored. Xavier was born with a severe heart condition which ultimately led to him desperately needing a heart transplant. During this same time frame, we connected with the Gibson family through a local charitable support group, CHD Families. Our previous experiences with Congenital Heart Defects (CHD’s) and our own child, led my wife and I to be a part of this support group. This connection kindled a flame of desire to help the Gibson Family, but how do you help a family with such a need, both emotionally and financially? We didn’t have much money and we weren’t real efficient with our time management so time always has and still does run thin, but again, how could we possibly help?

                I took a small first step by reaching out to the Gibson family, letting them know that we were there for them and if we could help in any way, shape or form, to please let us know. These types of calls and offers often deluge loved ones when tragedy occurs, but I meant it. Our only option now was to wait and listen. A much anticipated call came in for the Gibson family; a gift of life had been given as Xavier’s new heart had been procured. This call revealed another need as the family had traveled to Saint Louis, Missouri so that Xavier could go through heart transplant surgery.  This trip to Saint Louis provided an opportunity to help as the family would have to leave behind their home, their friends and the rest of their families so they could be with Xavier during this time frame.The family organized a massive multi-family (I think it was more multi-city to be honest with you) garage sale. We made the decision to contact family and friends to help assist the Gibson’s, collecting over two SUV’s full of used goods which went towards supporting the family’s financial needs while Xavier was hospitalized in Saint Louis recovering from his heart transplant.

Xavier

                This family taught me so much more through their hope and courage in the days leading up to and after their son’s heart transplant. This little boy’s family fostered a desire to embrace and actively promote organ donation, making this topic their calling, ensuring that people are empowered with the knowledge and awareness of donating the organs of their own body and/or those of loved ones who have passed away. In the midst of their own tragedy, they were trying to help others avoid this very same thing.  Xavier was very sick by the time a donor heart became available and the thought will always be there that if he had received one sooner, he might still be alive today. The Gibson family will never know the answer to their question, but everyone can help. We can all play our part and ensure that organ donation is something we have taken into consideration and make a firm commitment to. Xavier was ultimately too sick and did not survive through the recovery process of the transplant, but his mother and father, along with other family members, will carry on his legacy through their lives and the act of organ donation. Will you join this family in making a decision regarding organ donation?

It’s My Turn

                The doctors and nurses were buzzing in and out of the hospital room after my mother had passed away. She had been dead for several hours. Her body was cold and all signs of life had withered away, much like a dying flower in a field or a plant which has suffered the consequences of dehydration. A member of the medical staff would present me with a question which initially hit me as a mere cold and uncalculated approach to the topic, but nevertheless, a topic which needed approached. I could hear footsteps in the hospital hall as a doctor hesitantly approached our hospital room and lightly rapped his knuckles against the cherry stained door which was already partially opened.

 Knock, knock, knock.

     The door hinges breathed out a light squeal as the force of the knock slowly pushed the door open even further. The small ray of flourescent light which previously lined the wall slowly widened, providing more light to the dimly lit room. His voice was quiet which engaged my concentration as I tried to focus on what he was saying and then he asked me about the concept of organ donation. He asked me if I was willing to donate any of my mother’s organs. I shrugged the doctor’s question off at first needing some time to filter through this barrage of emotions which were consuming me. I mean, this seemed absurd to me at first, mostly due to her physical health, but several minutes later, I sought further explanation as to what exactly could be donated.  

                My mother and I never talked about organ donation. I immediately began fumbling through her purse, looking for a driver’s license or some other documentation in hopes that she may have indicated something…nothing. I thought if the license indicated such an action, I would be off the hook. I will share what was donated in just a few minutes which will bring these next few thoughts full circle. I thought about precious little Xavier as his picture and his family flashed through my thoughts. I thought about my mother-in-law, who had just received the gift of sight again through an act of organ donation. I thought about these people and wondered, how could I possibly keep this gift from someone? How selfish would that be? So without discussing it any further and without mentioning it to anyone except my father (they were divorced for 33 years so it was more of a reassurance conversation for my own purposes), I made the decision to donate everything possible. I mean, if the doctors can use my mother’s organs, bone and connective tissues for the benefit of another individual…Who am I to say no?

                I felt good after that, not good as in I had done something good, but good in that my mother would be able to help someone, even in her passing. The night proceeded on as time seemed to stand still, even though time is the one constant which always passes by at the same rate. I hesitantly departed the hospital around 10:30pm, approximately three hours after my mother passed away and 13 hours since I first arrived that very same day. I received a call from an organization called Midwest Transplant Network at which time I went through a grueling medical interview over the phone regarding my mother’s medical history. I was expecting the call and I knew it was coming…I just kept thinking and hoping that maybe it wouldn’t. My mind was everywhere except for that conversation. I repeatedly paced the halls of my mother’s apartment, room to room and back and forth, over and over, again and again. I apologized repeatedly for making the interviewer repeat multiple questions and even asking the person on the other end of the phone if we were done yet. I was losing my patience with this individual and I didn’t even know why. I even abruptly interrupted the interviewer to ask, “I’m really sorry, but are we almost done yet”? The interview/questionnaire went on for approximately 90 plus minutes and I was asked questions about my mother that no son should ever have to be asked, but I would surprisingly find out later on that this 90 minutes was actually time very well invested.

                You couldn’t tell the transplant medical team had removed a thing from my mother’s body at the funeral, unless you were me of course and/or you knew what you were looking for. The organs which had been donated were either covered up by her garments or replaced with replicas so you couldn’t notice any distinct or immediate differences by sight alone. I haven’t really given much thought about the donation since that very moment I actually made the commitment to donate her organs, but that changed recently when I received a packet in the mail from the Midwest Transplant Network. I would like to first share a poem which accompanied the donor letter and then I will share the impact of her donation following the poem.

To Remember Me – I will live forever

Robert N. Test

 

The day will come when my body will lie upon a white sheet neatly tucked under four corners of a mattress located in a hospital; busily occupied with the living and the dying. At a certain moment a doctor will determine that my brain has ceased to function and that, for all intents and purposes, my life has stopped. 

When that happens, do not attempt to instill artificial life into my body by the use of a machine. And don’t call this my deathbed. Let it be called the bed of life, and let my body be taken from it to help others lead fuller lives. 

Give my sight to the man who has never seen a sunrise, a baby’s face or love in the eyes of a woman. 

Give my heart to a person whose own heart has caused nothing but endless days of pain. 

Give my blood to the teenager who was pulled from the wreckage of his car, so that he might live to see his grandchildren play. 

Give my kidneys to the one who depends on a machine to exist from week to week. 

Take my bones, every muscle, every fiber and nerve in my body and find a way to make a crippled child walk. 

Explore every corner of my brain. 

Take my cells, if necessary, and let them grow so that, someday a speechless boy will shout at the crack of a bat and a deaf girl will hear the sound of rain against her window. 

Burn what is left of me and scatter the ashes to the winds to help the flowers grow. 

If you must bury something, let it be my faults, my weakness and all prejudice against my fellow man. 

Give my sins to the devil. 

Give my soul to God.

If, by chance, you wish to remember me, do it with a kind deed or word to someone who needs you. If you do all I have asked, I will live forever. 

Robert N. Test

The Impact

                On January 26th, 2011, my mother passed away from complications due to smoking related causes, COPD and an incident which took place when my mother tried smoking with her oxygen on. These are the major factors which heavily contributed to me, her only son, having to make this decision of gifting her organs at her young age of 57. Three weeks later, I received a packet in the mail which contained a letter from the Midwest Transplant Network. This letter disclosed the recovery of my mother’s tissues and organs. They were as follows;

     They were able to recover bone and connective tissues which are going to be transplanted into injured transplant patients who need surgery to heal. These procedures can include orthopedic, neurosurgical and reconstructive applications.

                The bone grafts they recovered are used to replace diseased bone in individuals suffering from bone cancer. As many as 50 people may benefit from this gift. My mother would have liked this as cancer took the lives of both of her parents.

     Here is the important part to me that really hit home and this was one of my main reasons for gifting my mother’s corneas. I watched and stood by helplessly as my mother-in-law began losing her eyesight through a hereditary condition of the eyes which progressively deteriorates her eyesight. She received a transplanted cornea which has allowed her to partially see again, but she has one more cornea transplant to go. How could I keep someone from experiencing such treasures as watching their grandchildren grow old? How could I sit back and allow someone to watch the love of their life for the last 50 years slowly fade away in the haze of their own eyesight. I couldn’t and I didn’t.

     My mother’s corneas were successfully transplanted into a 61 year old male and a 60 year old female, both on the East coast. Both of these individuals were given the gift of sight.

     Please consider donation, both for you and your family members. Make the decision easier by indicating your wishes on the back of your driver’s license or indicate such in your will. You can give life in the midst of death. My mother’s options were limited due to her health condition, but I gave all that I could and I can only hope that for one person…that all was enough. So, will you join the Gibson Family in making a firm and committed decision regarding organ donation? Will you join me in making a decision regarding organ donation. Please…please….please…Join someone in this cause.

                  The American Dream has been dramatically distorted over the course of history. Our founding fathers gave up everything for their religious freedoms. They sacrificed all, placing everything they had on the line, including their lives, for the betterment of their families and their country. The American Dream is not finding the next Microsoft or the acquisition of wealth and material possessions. The American Dream cannot be found in the broadcast of frequency waves which air shows like The Next Top Model and American Idol. This dream does not begin with an end in sight for the American Dream knows no limits and has no end. The American Dream begins where we as individual Americans end. The actualization of this dream is only realized and lived out when we set aside ourselves and begin living our lives for those around us. Our enemy happens to be not that of an actual army as was the case with our forefathers, but one of narcissistic tendencies and what we believe to be inherent rights granted from men and among men.

                I struggled to make it through several different stages of life, suffered many trials throughout and fell to my own selfish and destructive behaviors time and time again. When I face-planted at the bottom of rock-bottom, I realized that I only had one true dream. As cliché as this may sound, my dream was to have a modest home with a white picket fence in the front yard and a family to share this home with and that was it. Now the white picket fence wasn’t a deal breaker because the Home Owners Association would surely have some kind of rule forbidding white picket fences in the front yard, but anyways, my dream is real and I am living it out, but the American Dream didn’t begin until I began living for my family… until I began living for God.

                I am living out a dream in which my children will never wonder where their mommy or daddy is or why they seemingly don’t want them. They will not bear witness to a home with alcohol and/or drugs, pornography and other things that children’s eyes should never see and/or experience. The hands of their loved ones will not harm them or shame them. Words of hate and discontent will not fall upon their innocent ears. My children will have a choice. They will not be destined for destruction as I once was. The American Dream takes place when we become subservient to our future… our children’s future, and to most of all…God.

Please take a moment to watch the video below as it tells the rest of the story. I want to thank the mastermind behind this project for listening to my story and taking time away from their precious families to make this happen; Alan Stolfus and everyone else involved in this project;

 Cast: Hayden Loughery, Joshua Harris, Mike Searle, Tony Dougherty, Sarah Shumacher, Alicia Ewing, Jay O’Brien, Erin Stolfus. Crew: Corey Crossen, Jay O’Brien, Mike Humphrey, Kynan Marshall, Eric Salzman, Aaron Sitts,

This is my dream…my American Dream. Except for me…It is VERY REAL.

Cooper gets his way with Grandpa!!!

          So every once in a while, I thought I could share some of the crazy things my kids say and/or do from time to time, especially since I have three boys. If you dare follow these posts over the lifetime of my children, I am almost certain you will be left praying and begging for a little girl, especially once my three Martians (maybe four if you include me) are full-grown and off on their own. I’m sure the accumulation of their stories will haunt you into wanting to purchase that vibrant pink Barbie mansion with the letter jacket Ken doll. OK, maybe not any of the above, but I hope it puts a smile on your face and one on theirs as they read this sometime in the distant future 

           I wish I would have done this more with Blake as his creative mind concocted and still does concoct some of the most outlandish sayings, producing classical comedic moments which left/leave us gasping for our breath on numerous occasions. I have a few of them which I will share in a later post, but for now, let’s check out some of our middle boy’s moments, also known as Cooperism’s. These are obviously much funnier to us when they happen in real-time and in person, but I wanted to start capturing some of these moments so we can share them with our boys later on in life and of course show them to their girlfriends when they are teenagers.

Cooperism #1

          Cooper’s Grandma and Grandpa Harris (my dad and step-mom) stopped in for a quick visit to look at an idea I had. My step-mom was going to look into finishing a project for me that my late mother had started and we wanted to take a look at it together. Cooper went missing in action as he sometimes does which usually means he is either hiding somewhere very discreet where no one would find him anyways or he is far away in some make-believe world which was created by none other than Cooper himself. OK, OK, he is typically down in the playroom playing make-believe something.  Even apart from these two activities, there are several rooms which could occupy his time, but it became very clear as to where he was when we heard the echoing sound reverberating from the restroom walls. Cooper made it to the restroom without telling a soul and then the echoing sounds bellowed from the wide open restroom door which Cooper purposefully left to ensure someone would hear him once he finally yelled for help. The time came and an unexpected request sailed past Cooper’s lips traveling from the restroom to the kitchen, falling upon deaf ears at first. “Danpah!” Cooper yelled. The joint interactive discussion we were engaged in muffled his first attempt and everyone seemingly shrugged it off. “DAAANPAAAH!!!” Cooper yelled. My wife looked at my dad and said, “I think he wants you”. My dad quickly responded, “Yes son”. “I went doop danpa”, Cooper replied in the most serious manner. We chuckled as my wife and I knew what was coming next. Grandpa Harris hesitantly glanced at us with a, what am I supposed to do or say to that look. Cooper was growing impatient by this point. “Danpa, I WENT DOOP!”, he uttered again with restlessness getting the better part of him. My wife looked around at all of us and said that Cooper wanted Grandpa Harris to wipe his bottom. My dad started walking towards the restroom, briefly looking back at us before resuming his slow pace down the rest of the hallway. Grandpa Harris peered around the corner and into the restroom as uncertainty overcame him.Cooper had indeed gone “doop” (Cooper’s pronunciation) and Grandpa said, “Good job buddy!”, still trying to avoid the impending outcome. My wife was correct the entire time. She knew Cooper was luring grandpa down the hallway and into the restroom so someone and that someone being grandpa, could wipe his bottom. And yes, Grandpa Harris wiped Cooper’s bottom.

Cooperism #2

                Cooper was at his Grandma Coulter’s house and decided to take his shirt off. He ran around most of the day refusing to put his shirt back on and when grandma thought he might be getting cold, she pleaded with Cooper to put the missing garment back on. Cooper wouldn’t budge though. At first he claimed he was hot; however, this excuse went to the wayside before long. The temperature outside was freezing, but inside it was bearable, as long as you had some clothing on. It was only a matter of time before his little lips started shivering and his teeth commenced to chattering, but Cooper held his ground. Grandma asked Cooper once again to put his shirt back on at which time he revealed the real reason behind his attempt at manliness in the midst of a cold house. Cooper informed his grandma that his dad was a worker and never wore his shirt in the house so Cooper said he was a worker too and didn’t need to wear a shirt either. What else is this kid going to pick up from me?

Cooperism #3

                It was getting close to Cooper’s bedtime and out of nowhere Cooper started saying his stomach hurt. My wife and I looked at each other with skepticism written all over our faces as we thought this must be some conniving ploy to avoid bedtime. Cooper said it a few more times in his little high-pitched voice while placing both hands over his stomach, “My tummy hurt”. His eyes gave a brief look of desperation as his tone and volume changed very quickly. His next line gave every indication as to why his stomach was hurting, “OH MY DOSH, I HAVE TO DOE TO DA WESTROOM! OH MY DOSH!” He briefly placed his hands over his private area and then moved them quickly to hold his bottom. Knowing that Cooper waits till the last-minute anyways, we loudly encouraged him to “GO AND GO NOW” and then he rushed down the hallway in a valiant effort to make it to the toilet.

What are some of your children’s Ism’s that have touched your heart?

Are you capturing these moments to share with your children down the road?

P.S. Cooper did indeed make it to the restroom, just in case you were wondering.

NOTE: I apologize for the delay on getting this out, but I am dealing with the death of my mother and have been preparing for her funeral. The last paragraph of this post rings that much stronger with her passing. Please read and remember that it is the choices we make now which ultimately lead to the person we are to become in the future.               

  If you followed along with parts one, two and three, you can take an educated guess and probably be correct in your assumption that I will NOT be dropping a bombshell announcement in this blog that we are expecting our fourth child. You guessed it! We have definitely tucked our baby-making hats away up in the attic and will not be having any more children, at least not through natural means. Over the course of the last eight years, we have experienced too much pain and shed way too many tears of sorrow (even if these tears of sorrow were followed by tears of joy) throughout the days and weeks following the birth of each of our children. We were absolutely certain that things could get much worse should we choose to have a fourth child. We no longer cautiously weigh the odds or sift through the statistics; this is a chance we are adamant on NOT taking. We tight-roped this line one too many times before and our thoughts are that this chance is much too risky to take and there is way too much at stake should something go wrong.

            The flipside to this is that we didn’t necessarily want to stop having children or if we did, we wanted this choice to feel like it was our decision and not a choice we were seemingly forced to make. This made us feel like our decision to have another child was stripped away from us. I know, we always have a choice, but considering the circumstances, the choice was heavily weighted towards not having a fourth child. There was another choice though. We had thought about a second option, discussing it nonchalantly in the past should the opportunity ever arise. We knew this option was a huge commitment and that this experience would both challenge and change our family as we knew it forever, but again, it was a commitment we thought worthy of making. The commitment was and is adoption.

          My wife and I had discussed the idea of adopting in the past, but it was always someday, sometime in the future. Honestly, it was more of a fleeting thought which we often experienced together and one that we would possibly come to consider some day in the future…someday, but not these particular days. The topic of adoption usually came up as a side bar discussion when we became emotionally moved after seeing a commercial or after attending an event where adoption was a point of discussion. This topic also came up when discussing abortion, but like I said, they were always side bar discussions which usually ended with hypothetical maybes.  We weren’t really forced to think about this as a reality until we were seemingly forced to make a choice of not having any more children via natural childbirth.

                We were social networking one day…OK…we were actually stalking old friends on Facebook and the status updates of some friends we used to go to church with caught our attention. It was a brief glance at first and then a double take; we saw that our old friends were adopting not one, but two children from Ethiopia. Did I mention that they already had three children of their own? We seriously thought they were crazy at first, you know, raving lunatics (just kidding here as they may actually read this ;)), but we knew their hearts and crazy only related to the fact that their hearts were crazy for these children. We decided to have our old friends over for dinner so we could reacquaint and discuss both the whys and the hows of their adoption experience. After having mutual heart-pouring discussions about our desires to adopt, my wife and I came to the conclusion that we should adopt internationally. We could have chosen to adopt locally within the United States, but these children would be taken care of one way or another. The children of other countries were literally dying of starvation, along with other treatable medical conditions. We had the available room, we could raise the money and most of all, we had the desire and love to provide an environment which would give life and hope to a child that otherwise would not get to experience this side of life or for that matter, life in general. And most of all, we had the heart.  

                It was an epiphany of sorts, but it wasn’t the statistics which captured our hearts. Don’t get me wrong here; the statistics are indeed staggering as 24,000 children die each day…EACH DAY. These children are boys and girls who could be adopted and placed into the loving homes and arms of parents who can provide them with nourishment, love and hope. This is the equivalent to 60, count them 60 of my oldest son’s elementary schools. Can you imagine losing 60 elementary schools here in America…PER DAY? This was a shocking factor, but it wasn’t the deciding factor for us. We knew that we were only going to be able to help just one of those 24,000 children. Don’t get me wrong here because one child does make a difference, but not necessarily in terms of the overall numbers. We began to see and come to the realization that there was a child out there who was going to be our daughter. Yes, I said daughter, because this was obviously the only way we were going to have the presence of a little princess in the Harris household. We got three the hard way, the boys that is, but back to our daughter, she was out there … somewhere … in some other country…and she was suffering.

                We jumped in the adoption process head first and began researching adoption agencies so we could make the initial commitment to embark on this lengthy and drawn out process.  There was only one potential setback which might interfere with or prolong our ability to follow through with the adoption.  One of our pasts would literally come back to haunt us. Juvenile delinquencies and misdemeanor crimes of a trouble-filled past just might be a mountain that is too high to climb. This might very well be one mountain which we are not able to crest which also means there would be no summit to reach either. As a matter of fact, we wouldn’t even put our gear on. The journey would end much sooner than we could have ever imagined. In all actuality, this journey would come crashing to an end much, much faster than it began.

                One of the earlier items on the list for international adoptions is finger printing. Obviously, the authorities of both countries involved want to make sure you have not been arrested for, or have any convictions for violent crimes or other crimes against people which may show up on a police record; however, this isn’t the only thing they look at. Your entire record is looked at, both arrest record and convictions, whether you were found guilty or not and regardless of your plea. Even if the arrest was fabricated or a hapless law enforcement mistake had been made, it still shows up on your record during this process. You see, like many people, I made a lot and I mean A LOT of careless and imprudent mistakes when I was between the ages of 17-19 years old and every single one of these mistakes littered the pages of my record. There were 15 events which stringed one after another, page after page, throughout the report and even though some of them showed up as non-convictions or that I was found innocent, the events still showed up as strikes against me, therefore lending evidence and so-called credibility to a pattern of maladaptive behavior, deserved or not. There were certain events within this report which completely evaded my memory, but after a brief period of introspection, my memories soon sailed back to those exact moments in time. The biggest offense turned out to be a resisting arrest charge and disobeying a lawful order from a police officer. I won’t go into details here, but the charges were inflated as I was left with no choice but to try and defend myself from excessive police force. The only witness to this incident was under the influence of alcohol and the two police officers had also arrested this person’s father that same night so it wouldn’t prove to be all that difficult to discredit this individual’s eyewitness testimony. I had to accept the charge or face time in jail should I be found guilty as an officer’s testimony almost always trumps the witness in a court of law, so I hesitantly accepted the prosecution’s plea bargain.

                We still went through with the adoption process, selected an agency and began coordinating our efforts with a social worker at the agency. I was very open and honest with the adoption agency about my past. I didn’t want to come across as if I was hiding anything from them. This type of conniving would surely look worse should something come to the surface much later on in the process. I thought absolute honesty will prevail. I know in my heart it will. I wrote out and then meticulously typed up a six-page report on my past arrest record and provided reasoning as to why I was arrested, an explanation of the events leading up to the arrest and what I had learned from each of these experiences. The adoption agency was gracious enough to accept the report from me at no cost and they hadn’t requested an application fee either up to this point in time. The social worker forwarded the report to the agency’s legal representative in Ethiopia for review, who then forwarded the report to the proper court authority in Ethiopia for review as well. The adoption agency could have lured us deep into the adoption process with application fees, home studies and fingerprinting charges, but they didn’t. They were very helpful and understanding of our circumstances throughout this entire ordeal. We waited … and waited … and waited. I anxiously checked my inbox each and every day in anticipation of an email from the adoption agency. I had an immense amount of hope that the authorities involved would see past my historic transgressions and grant our family the gift of adoption. I quickly grew into a complacent mechanical like state, systematically checking my inbox with very little hopes that I would ever see any sort of response again and then one day, I opened my inbox and there it was; the black bold font jumped out from the screen, indicating a new email and guess what, the email was from the social worker at WACAP which was the adoption agency we chose to work with from the beginning of this process. My heart began racing several beats higher. The anticipation kicked in and I really thought that this was it. We actually have a chance at becoming the adoptive parents of a needy child from Ethiopia and that our daughter was out there somewhere, just waiting and hoping that her parents were seeking her out. This child would not suffer for much longer; a child of God would finally experience the love, warmth and nourishment of a family which she most certainly deserved.

                I paused, just staring at the screen; this was the moment of truth for us and our hopes of adoption. I double-clicked on the email and as the bold, black font faded to a normal font, a new window popped up displaying the contents of the email. Our flat screen monitor non-discriminately displayed the following words;

“Dear Josh and family,

Thank you so much for your honesty and for the time you have taken to present this information.

It is with a heavy heart that I must inform you that our staff in Ethiopia indicated that they did not think that your case would receive a positive approval in an Ethiopian court.

Where it is understood that you have overcome a significant amount of adversity, this many infractions (although justifiable) makes the Ethiopian Federal Court unable to approve an adoption for your family.

Again, I am very sorry to deliver this news…”

I stopped reading as a tear slowly fell from my eye down to the corner of my mouth. I stared off aimlessly; I didn’t need to see any more of the email. The very thing we tried to avoid with having a natural child was cast upon us as potential adoptive parents. My hearts rapid pace almost died as it slowed to a mere idle, a deathly sunken state which landed somewhere in the vicinity of my stomach. I mean, really,” I’m a good person”, I thought. I have changed my life 180 degrees from where it was back then and I meant it. I was frustrated and I saw this as the Ethiopian authorities were willing to let this child die. My sadness and frustration transformed into anger. I thought I can fix this; I can send character reference letters and letters of recommendation from pastors, police officers, college professors, FBI agents, co-workers, church friends and past bosses. I’ll do whatever it takes! I’ll write my congressman! I’ll write the Ethiopian officials; however, none of this would suffice. There would be no international adoption, as a matter of fact; there would be no adoption at all.

                My wife and I are still open to the idea of adoption, but it came and went full circle, from a maybe someday, to a reality, back to one of those maybes; maybe someday…some day in the future. It will require a very unique set of circumstances for us to be able to adopt as we will have to find an individual or couple who either doesn’t want their child before the baby is born or a couple that wishes to give their child up for adoption after the birth or some other stage of life and we happen to somehow be chosen as the desired adoptive parents. This door has been temporarily closed to us for now, so we have decided to continue our focus toward our three boys.

                I guess the worst part of this for me is that when 24,000 children are dying per day, give me and my family a chance. Give me a chance to love this child as my own. If anyone has been proven to be redeemed in this life, it is I, and not through anything I have done, but by the grace of a loving God. I myself was adopted. My parents, like many other parents in the past, made some very poor choices in their lives. I became a ward of the state at just two years old. I first ended up at a grandparent’s house who ultimately couldn’t handle the extra work which came with raising a fourth child living in an already cluttered mobile home. After suffering my way through the foster care system for a very brief period of time, another grandmother took me in when no one else would or could. I presented that exact question to her one day, “Mom (because this is what I called her), Why did you take me in?” She responded in the most calm and monotone manner stating, “Because no one else would”. She saved me from a life of not knowing my family, from a life of being raised by strangers, but not all children are this fortunate. I just wanted the opportunity to save or try to save one, just one of those 24,000 children who are going to die today.

                The foster system is riddled with unworthy parents. There are parents who become part of this process just for the additional income and others for selfish, horrid reasons which not even the foster parents themselves can possibly comprehend. Meanwhile, others take this route with an open heart, willing and waiting to love a desperate child in need. The children of Africa and other countries are literally starving to death and dying from treatable diseases and disorders. The majority aren’t waiting for adoption…they are waiting to die. Me, I am most certainly alive and well, a changed man living for a purpose higher than my own, a man who just wanted to make a difference in this world, in this child’s world. The choices of my past came back to haunt me when I least expected it and now, a child is trapped in poverty, destined to certain death because of my sins.

Honey,

I am sorry. I am sorry that I let you down. I am sorry that you won’t be coming home. I made some very bad choices many years ago and these choices are keeping you from us. Please forgive me. I love you!         

Love Dad

     I know this sounds horrible and it sounds as if I am sensationalizing the event, but I want to really drive the reality of this point home. God doesn’t will this. I made bad choices which had nothing to do with God, and now I have to live within the parameters of these choices which I have made. I want you to know that the choices you make now can and will affect your life in years to come. They won’t ultimately affect your relationship with God should you choose to follow Him, but there are certain consequences for our actions here on earth. Let’s look at a few examples other than my adoption experience or should I say non-adoption experience. Take smoking for example. Should you choose to smoke throughout your life, you will incur much damage to your body’s physiological processes, therefore shortening your life, a life in which you could have been fully engaged in God’s work here on earth, a life that is cut short. I can say the same thing in regards to eating poorly or drinking alcohol, lack of exercise, drug use and criminal behavior among a host of other maladaptive behaviors. PLEASE!!! I beg of you to take this point and this plea, recognizing the potential for disruption and dysfunction in your own life. If you are not caught up in any of these or other maladaptive behaviors, please share this with someone who is struggling in these areas. And if you have the opportunity to change a life, DO IT! DO NOT WAIT!!! A child is waiting to call you mom or dad, just as God once waited for you to call Him Father. The child’s life which needs changing might not even be in Africa or some other remote foreign country; they might very well be under the roof of your own home. This child or person just might be you as you are also a child of God. Did you hear that? Listen! You are a child of God!

Links

http://savetheorphan.blogspot.com/?spref=fb

http://itcouldnotbebetter.blogspot.com/2011/01/snapshots-of-sweeties.html?spref=fb

http://www.kissesfromkatie.blogspot.com/

“If people bring so much courage to this world the world has to kill them to break them, so of course it kills them. The world breaks every one and afterward many are strong at the broken places. But those that will not break it kills. It kills the very good, and the very gentle, and the very brave impartially. If you are none of these you can be sure it will kill you too, but there will be no special hurry.”

Ernest Hemingway

Introduction

          Some people will look at a name and think nothing of it. There may be a brief comment or thought as to the social status of the name, but beyond that, not much thought is given. There are parents who carelessly name their children almost as randomly as the next drawing of pick five lottery numbers, while others embed deep, spiritual meaning into the names of their offspring. Have you ever asked someone why they bestowed a certain name upon their child or children? I bet this question alone would draw some very interesting and colorful dialogue.

          There are other people who look at a name and they want to know why. There is an element of intrigue and inquisitiveness which grasps their inner soul and they manifest an extreme thirst for knowledge which can only be quenched by the answer. OK, OK, maybe this is a bit too dramatized, but I think you get the point. Corporate America believes that names are important to you as they spend billions of dollars on marketing and promotion to develop “name” brands and household “names”. Do you know who Thomas Mapother IV is? You should Google it because this person thought they needed to drop their last name in order to achieve notoriety.

          I don’t really care which one you are because I’m going to tell you either way, like it or not. I’m just kidding here, but I do believe it is important for me to disclose my reasoning behind the name BrokenTogether before going any further in my blog. This post shares the insight behind the name; however, it does not go into the specific details of why I was broken. I will now share with you what Brokentogether is and what the name means to me.

BrokenTogether Defined

(Courtesy of http://www.dictionary.com)

broken

[broh-kuh n]

–verb

1.   pp. of break.

–adjective

2.   Reduced to fragments; fragmented.

3.   Ruptured; torn; fractured.

4.   Not functioning properly; out of working order.

7.  Fragmentary or incomplete

8. Infringed or violated 

9. Interrupted, disrupted, or disconnected

10. Weakened in strength, spirit, etc.: His broken health was due to alcoholism.

11. Tamed, trained, or reduced to submission

12. Imperfectly spoken, as language

13. Spoken in a halting or fragmentary manner, as under emotional strain

14. Disunited or divided

15. Not smooth; rough or irregular

16. Ruined; bankrupt 

together

[tuhgeth-er]

–adverb

1.   Into or in one gathering, company, mass, place, or body 

2.   Into or in union, proximity, contact, or collision, as two or more things

3.   Into or in relationship, association, business, or agreement, etc.

4.   Taken or considered collectively or conjointly

5.   (of a single thing) into or in a condition of unity, compactness, or coherence

6.    at the same time; simultaneously

7.   Without intermission or interruption; continuously; uninterruptedly

8.   In cooperation; with united action; conjointly

9.   With mutual action; mutually; reciprocally

–adjective

10.       Slang . mentally and emotionally stable and well-organized

Brokentogether

[broh-kuh n-tuh-geth-er]

-noun

1. Slang, Me

adjective

2. Generally relating to an individual who has been broken mentally, physically or spiritually, but through some sort of restorative process, is in a literal sense restored to their original state prior to being broken; generally related to the Christian religion and the message of salvation through Jesus Christ.

BrokenTogether Explained

          Broken can be anything. It can be as little as one experience or a collection of experiences. Brokenness can be induced and initiated by fear or immersed in the passions of the pleasure principle. This state of brokenness can be mentally, physically or spiritually, and experienced as your passing through the innocence of childhood or gauging the world from your front porch as an aging adult. Pain is relative to the individual which means that our greatest personal pain is equal to that of another person’s greatest pain, regardless of the specific event. We can only feel or relate to the pain we have experienced. Just as Hemingway stated, some will break easier than others, he indicated a threshold which also indicates a relative nature to what I am calling brokenness. Brokenness can manifest itself in many ways. The pathology of brokenness can be traced back to many of the following traumas; physical abuse, child abuse, bullying, sexual abuse, drug, gambling and alcohol addiction (often preceded by a previous state of brokenness), pornography, divorce, infidelity, health (mental and physical) and many other specific traumas which are too many to account for all of them here. These traumas are things which break our spirit and can often lead to the following; cutting, lack of self-worth, suicidal ideation and attempts, suicide, guilt, shame, physical harm, incarceration, loss of family and friends, addictions (new and continued), separation from God and many other courses of destructive, abnormal and maladaptive behavior. Broken is the hurt, Broken is pain.

          It is my belief that we are all broken to begin with. This is due to the corrupt nature of man and his inability to fix him or herself. With that being said, together means the pieces have been collected up, sorted out and we are in the process of being put back in order.  We don’t look or act the same as we did before. Our lives have been changed, but it wasn’t our broken state that put us back together. A truly broken thing never fixes itself. The broken thing needs intervention. Broken things do not fix other broken things either. They only lend to the company of brokenness which gives the perception of normality. This is also why misery loves company; People just want to feel normal and accepted. There is only one who is worthy of fixing the broken and only true restoration and acceptance comes from Him and that is God. Together is the healing, together is hope.

Q: So what exactly is Brokentogether?

A: Brokentogether is me; Brokentogether is YOU!

Let us all be strong in and at the broken places!!!

If you would, share with us what is in a name to you. It could be anything; your name, your child’s name or any other name that you draw meaning from.

Cooper 2007

               This post is by far one of the hardest things I have ever written up to this point in time. There are several reasons for this, but I will focus mainly on just a couple of the major ones. Our first son needed a life saving surgery to repair a broken heart and our second son needed surgery in order to correct a defect in his stomach.  The collective results of these experiences on us were emotionally draining and these events culminated and concluded with Gavin’s story. The rest of what makes this hard to write will bear itself throughout the paragraphs of this post. The ability to vividly remember snapshot images and the emotional trauma associated with them is a joy and a curse. I am ecstatic that Gavin miraculously pulled through all of this, but I took his illness and near death extremely hard. The events leading up to the birth of our third child were carefully weighed and cautiously accepted. I mean, third time is a charm, Right?

Blake 2007

               After Blake’s heart condition and Cooper’s stomach defect, my wife and I hung up our baby-making hats. We made a tentative unwanted realization that maybe we shouldn’t have any more children. My wife seemed adamant on this position while I reluctantly went along in hopes of waiting out this stronghold position of hers. Other people made hapless comments about us having more children and my wife automatically snapped back and shot their innocent inquiries down before any more words could fly from their mouths. She quickly answered “WE’RE DONE!” and I almost always followed this up with a quick and quirky comment, “She may be done, but I’m not done yet”. I played this off as a joke, turning my head towards her direction and shelling out a half-hearted smirk. I really wanted us to have more children. We had two children with medical problems at birth already and the chances of a third child having issues had to be slim, Right? I mean, there was no indication of any genetic defect involved so the odds had to be on our side. They had to be! Regardless of the odds or statistics, my wife was not comfortable having a third child.

                My wife and I came to the realization that we were going to be a two child family. Blake was a toddler at this point and Cooper had fattened up like a Thanksgiving bird. You never would have guessed that this kid had an eating problem. The only eating problem he had now was eating too much. We honored and cherished making many memories with the boys during this time period. Blake started Kindergarten and my wife and I were just beginning to notice Cooper’s delays. There really wasn’t anything to notice, but more of what was missing which grabbed our attention. Cooper lacked a vocabulary and we only knew what he was saying or indicating because we were used to his half-hearted attempts at communication. Cooper also began displaying behaviors which were abnormal to us and at first seemed to be autistic in nature. He wasn’t a social baby, and enjoyed many activities which were classic and indicative of a child much younger than he was. He was behind in what the educational assessors/evaluators considered normal play, normal speech and normal language comprehension. This situation presented many challenges and a struggle all of its own, but that struggle is for another story. We had a difficult time getting Cooper evaluated, but we stuck with this process and he became eligible for treatment/therapy as a part of the Missouri First Steps program, as he was more than 50% deficient in all the above mentioned areas. This meant that at 18 months, Cooper was essentially functioning at a level consistent with or below that of a nine month old baby.

Blake and Cooper 2007

               After countless times of Heather telling people no and me following up with my typical line rebutting her comment, I estimated that these subtle relentless tactics would pay off, but my wife held her ground like a fortress, with unbreechable walls. She wasn’t budging on this decision. On multiple occasions I hung my head, almost as if I was retreating in defeat and beginning to accept this unwanted realization. Maybe this was it, maybe I need to accept the number of children we have and be grateful for the opportunity to raise them. This steadfast, strong approach by my wife was secretly growing weary. Her defenses were falling and she didn’t even know it just yet and neither did I, but Heather was sub-consciously thinking about retreating from her earlier position on not having a third child.

               Cooper was climbing stairs and even ladders by this point. He didn’t have a fear in the world when it came to climbing. His face had fattened up to chubby round and his mid-section and thighs were on the brink of bulging with fat rolls. He had these large adorable eyes which mesmerized you, capturing your heart with just one look and cheeks that screamed out pinch me. You could even see the beginning of some reddish-blonde hairs budding up from Cooper’s once bald head. There was just one problem for Heather though, Cooper was beginning to lose his baby look and the Harris family loves their little babies. The fact that Cooper was beginning to grow up brought home the reality that he might very well be the last child to grow up in the Harris household.

Cooper 2008

               It was Labor Day weekend 2008, Heather and I made our traditional trip to Independence, Missouri for the once a year Santa-Cali-Gon Days Festival. This time of year is very unpredictable in terms of weather so we dressed the boys appropriately and off we went. Upon arriving at the festival we went through our typical motions and followed the usual routine of hitting a few street vendors’ booths and grabbing a hot dog or two from the local Boy Scout group. The crowd was still sparse at this point and you could hear all the street vendors pitching their products; “Turkey Legs, Turkey Legs, Get your fresh hot Turkey legs”, just two booths down a timid high school aged youth was passing out samples of assorted roasted cinnamon nuts and the sweet smell of kettle corn hovered in the air, long before you ever saw the smoke rising from the big black kettle.

               After spending a little time on the street, we made our way to the craft area. We enjoy looking at people’s crafty work and artistic approaches to every day goods, but we rarely buy anything. This has mostly to do with the fact that when we do buy something, we rarely put it to use. We trudged through each tent which was swarming with people and vendors. Some vendors were out and about their displays, hurriedly exchanging goods for money and change with veteran patrons while other vendors seemed to sit back and wait, almost looking as if they wished to be someplace else.

               We tracked our way up one side of the craft tent and down the other, commenting back and forth about different products. We shelled out both positive and negative comments of praise and critique towards whatever it was the vendors were selling. We were forced to look at some displays longer than others as we maneuvered the baby stroller throughout the crowd, weaving in and out of gawking patrons. As we pushed Cooper along in the stroller, we were armed with apologies ready to be delivered as we nicked at the heels of the people walking before us. The booths ranged from decorative goods to artwork, pictures, frames, even picture frames and all sorts of other unique items for patrons to purchase. This was just like all of our traditional trips from years before with the exception of one tiny little phrase which escaped Heather’s lips. These spoken words required an oncore performance before it would sink into my psyche. We approached several different vendors selling baby clothes and with each passing, we realized we no longer had a need to look at any of these clothes, except for how cute and adorable some of the items were. The realization of us not having any more children must have been weighing on Heather’s heart because that trip to the festival became an iconic moment forever etched on our family timeline. I did a double take, looking back at Heather and said “WHAT!!??”  As calmly and nonchalantly as she said it the first time, she repeated herself, “Let’s have another baby.” I replied, “Seriously! What caused you to change your mind?” She wasn’t really sure at this point, but she knew we weren’t done having babies just yet. Something inside of her just kept tugging and pulling at her subconscious. She just felt like our family wasn’t complete yet.

Blake and Cooper

               We had taken a considerable amount of time, at least to us, to have Blake and Cooper. It took us longer to conceive than we originally anticipated with each of them and we expected nothing to be different this time around. Two weeks later, Heather was pregnant. We wouldn’t know it at the time for several more weeks, but in hindsight, it all happened so amazingly fast. Heather later stated that it probably was a good thing that she conceived so fast because if the attempt at getting pregnant would have dragged out, she probably would have changed her mind.

               The pregnancy started off great, well, as great as a pregnancy can start off. This was the continuation of the Harris family’s journey which was headed down yet another road, to yet another adventure. Everything went really well during this pregnancy, but one thing was different from any of our previous pregnancies; Heather was diagnosed with an auto-immune deficiency disorder, much like Lupus and as the pregnancy progressed, she needed to receive extensive monitoring to make sure her body did not attack the fetus. The side effects of this disorder morph as the pregnancy progresses; In early pregnancy, there is an increased risk for miscarriage and throughout the pregnancy, there is the potential for stunted growth and/or the baby being stillborn at birth. There are many other complications associated with the auto-immune disorders which can include risks of infection and even death which are 20 times more likely in women with these disorders (Mann, 2006). Here we are in the middle of our third pregnancy, already on guard due to our past experiences and yet we are hit with another bombshell. We looked forward to each doctor’s visit with a bittersweet disposition as we experienced bi-polar like mood swings as we rode hostage to this emotional rollercoaster. This frame of mind was mainly due to the reasons behind the visits and what we might find out during them as well. We teetered back and forth from feelings of joy to feelings of despair as we looked forward to any good news which might come about, but clinched our teeth in fearful anticipation that everything was going to be alright. We harbored much of this in silence from our family members as we didn’t want to raise their concerns and set sail to any further stress than necessary.

Blake and Cooper 2009

              This newfound knowledge about the auto-immune disorder was just that, knowledge. There were no external symptoms or immediate underlying concerns leading to further anxiety. As we approached week 32 of the pregnancy, the time spent at doctor’s offices and hospitals increased exponentially. As a precautionary measure, we had a fetal echocardiogram at 32 weeks. This procedure looks at the baby’s heart to determine if the baby has any congenital heart defects while still in the uterus.  This was yet another moment where we were on pins and needles, almost holding our breath while we tried to gauge what the doctor was looking at, attempting to interpret their reaction to what they were seeing, but even if something was wrong, most doctors have a good poker face. The test results were negative, meaning the doctor did not find any congenital heart defects present. Whew! We could wipe the sweat from our brows and breathe again as we did not have to worry about heart defects this time around, at least not those which are present in the womb. The 32 week mark also introduced us to weekly bio-physic profiling (due to Heather’s auto-immune disorder) which included a non-stress test three times a week for the next seven weeks (a whopping 21 visits for this alone).  This baby soared the summit and went through the ringer in terms of rigorous medical testing to make sure our third child was healthy and there were no looming surprises to leave the doctors scrambling once the baby finally came. Were we worried? Absolutely! The mindset for us was not one necessarily filled with vexation, but more along the following lines; there were two completely different anomalies weighing against us due to our first two birth experiences and we were thinking the odds had to be in our favor this time around, Right?

               Heather’s medical diagnosis and our first two birth experiences placed us in the midst of a unique set of circumstances. The doctors played off their immediate concerns as long shots, but they had to be prepared for anything. Due to concerns carrying over from our first two deliveries and my wife’s auto-immune disorder, the doctors scheduled Heather for an induction at 39 weeks rather than wait until week 40 which was just a week away. Here we were again; we were supposed to be filled with an overabundance of joy during this iconic moment of our lives, and we were, but doubt was forcing its way in on us. We were very excited and the suspense was hovering in the air, but the not so faint memories of a not so distant past haunted our consciousness.

               It was a beautiful June day. We dropped the boys off at my wife’s parents on the evening of June 10, 2009 and went out to eat prior to making our way to the hospital. We enjoyed a peaceful dinner with just the two of us and then made our way to the hospital that same night. We approached the admissions desk and up we went to the very floor and room that would later serve as the delivery room for our third child. We nestled in, well as best as one can nestle in a hospital room and began preparing ourselves mentally for the events which lie ahead. The doctors started Heather off on Cervidil which threw her into painful contractions almost immediately. Heather expected this process to drag out and carry on late into the night or even come to fruition sometime the next day. At My wife’s request, I reluctantly made my way home and let the dogs outside . I decided that if Heather was OK with me leaving her at the hospital for the dogs, she wouldn’t mind me working out, taking a shower, grabbing some clothes as well as some other miscellaneous objects. I did work out or at least I tried; however, the situation took a dangerous turn while I was gone.

Blake and Cooper 2009 - Parkville, MO

               Heather called me while I was at home and told me to get back to the hospital immediately. She sounded a bit uneasy on the phone, but not frantic, maybe annoyed more than anything else. She didn’t tell me anything was wrong either, just that I needed to get back to the hospital now; I hung out at the house a bit longer, gathered some clothes and other miscellaneous objects, ate and took a shower. Again, she never mentioned anything about distress. While I was gone, my wife had unplugged the monitoring equipment and made her way to the restroom. After climbing back into the bed, she plugged the monitoring equipment into the machine just as it was prior to her unplugging it. My wife thought she might have done something wrong so she hit the nurse call button and just as a nurse chimed in over the intercom, four nurses calmly entered the room and began administering care. The baby’s heart rate fell from what was an already low heart rate of 110-120 beats per minute to a heart rate that constituted a medical emergency at around 50 beats per minute. The nurses came in and placed Heather on her side and gave her an oxygen mask to place over her nose and mouth. The staff continued positioning her in a multitude of positions trying and get the baby’s heart rate back to normal, but this first attempt wasn’t working. The nurses had to make the call to remove the Cervidil without the doctor’s order so that Heather’s body would stop contracting. These early and painful contractions were putting too much stress on the fetus. Once the Cervidil was removed, the baby’s heart rate gradually accelerated back up to the original baseline. I was impervious to this situation the entire time as I wasn’t even there for my wife; all because originally, the dogs had to be taken out to the restroom. That’s my story and I’m sticking to it.

               The situation subsided and the rest of the night was spent in anticipation of what was yet to come. Heather was undergoing these false painful contractions while I passed out cold on the hospital provided foldout bed. She always dogs on me for falling asleep when she had to suffer through this moment, but I had a really good excuse. Really, I did! She is an extremely tough woman and either hides or fails to reveal her true level of pain and discomfort and me, well, I have a sleep disorder. I am often falling asleep whether you like it or not as I am a borderline narcoleptic. The night came and went and morning was upon us and still no baby; however, this changed almost instantaneously, at least in the baby-bearing world, when the doctor broke her water. One hour later, we had a baby boy. Gavin Isaiah Harris was born on June 11, 2009 at 11:45am. He weighed in at just over the average birth weight at 7 pounds and 13 ounces.

Heather and Gavin just Before He left to go to NICU

Gavin - June 11, 2009

               I had this feeling of almost ownership this time around. I was becoming a pro at this delivery room routine. Gavin was born and then the delivering doctor handed him over to Heather. His cry came late which for me was the moment at which I could finally let go of the breath I was holding and begin to breathe normally. This moment was always a pivotal yet terrifying moment for me in the delivery room with all three children. Gavin was blue for an extended amount of time compared to our other children’s deliveries, but this particular detail didn’t seem to bother the medical staff. I proudly walked back and forth from Heather to Gavin, back to Heather, back to Gavin, then back to my awesome wife conveying descriptive details to her in regards to what they were doing with Gavin. Something wasn’t right though. All of a sudden, there was an uneasy buzz in the air and this conspiratorial process filled the room as I felt we weren’t being told everything just yet. There was some intermingling taking place amongst a multitude of healthcare professionals who had crowded their way into our room. There were more people in the room than I was previously accustomed to and that particular detail was not sitting well with me. My curiosity churned and my uneasiness morphed into anxiety, as I said to myself and then repeated it out loud to my wife, “Oh no, not again!!!” These feelings of uneasiness, anxiety and angst were solidified when the nurse told us they needed to take Gavin to the Neonatal Intensive Care Unit (NICU) for monitoring. They told us everything would probably be just fine and that he was more than likely having some transitional issues, but they had no idea what kind of fear and strife lay in our past experiences with our children or what was going through our minds at that very moment. Gavin was having some minor difficulty with breathing and they needed to monitor his oxygen levels. We spent most of our time back in the NICU with Gavin as the NICU staff began administering oxygen to him via blow-by.

Gavin at North Kansas City Hospital 6-11-2009

               Gavin’s situation gradually became more and more alarming as the NICU had to keep increasing his oxygen rate and in the meanwhile, his O2 stats were dropping and the percentage of carbon dioxide in his Arterial Blood Gas tests were rising. He moved on to an oxygen mask very quickly and was soon under an oxygen tent. His oxygen levels were at 35 percent supplemental oxygen at this point and we were growing very concerned. I should place some emphasis on that “very” above because we were pretty close to freaking out at this point. We didn’t have anything against North Kansas City Hospital, but we wanted and requested our son to be in the hands of the tried, tested and true experts at Children’s Mercy Hospital. The staff at North Kansas City Hospital called in their on-call pediatrician, the on-call doctor and the on-call neonatologist from Children’s Mercy Hospital to evaluate Gavin’s condition. They took a chest X-ray at which time the doctors noticed some fluid in Gavin’s lungs and attributed this to possible pneumonia.  The possibility of pneumonia meant that they needed to administer antibiotics and they did so as soon as the order for the meds arrived. The doctors also told us that Gavin’s current respiratory distress could be related to transitional issues as well, but once again, Heather had a bad feeling and she desperately wanted us to transfer to Children’s Mercy Hospital.  Heather and I had intense discussions in the hospital room amongst ourselves trying to decide the best way to get our son to Children’s Mercy Hospital. After speaking with the on-call pediatrician, she agreed that if and/or when Gavin reached 50 percent supplemental oxygen, she would request a transfer and he would be transported immediately to Children’s Mercy Hospital.

Gavin North Kansas City Hospital NICU 6-11-2009

                We spent a great deal of time in that small NICU room by Gavin’s side as our situation grew more and more frightening. Each tick upward in supplemental oxygen felt as if we were taking a step closer to the edge of a cliff and we didnt know exactly where that edge was. Gavin was breathing at a very rapid rate and his chest was sinking in at least an inch with every labored breath he gasped for. It was painful to watch. I cringed each and every time I looked at his chest, trying to imagine his pain and wishing I could make it mine. Once again, we found ourselves in yet another medical predicament with one of our children and we couldn’t even comfort him during this time. At first he was enclosed in a dome-shaped cover that went over his head and then an oxygen tent. This tent was a lightweight, yet rigid plastic which was formed around his head and draped down over the top half of his body so that the supplemental oxygen could be directed to his face without interfering with his breathing. Gavin was then placed in a see-through case and we were fortunate if we could even caress his hand or foot with one of our fingers through one of two small access ports. After we made the agreement with the on-call pediatrician, we were a little more at ease as we had an objective point in time to which he would be transferred, but by the time we made this agreement, our son was hovering around 40-45 percent supplemental oxygen. At approximately 1:30AM, the on-call pediatrician came into our room and told us that she no longer felt comfortable providing care for Gavin at the North Kansas City Hospital NICU. The Children’s Mercy Hospital transport team followed in right behind her and Heather woke me from my deep slumber explaining that I needed to get up and go…NOW!!! I kissed and hugged my wife goodbye and then followed the paramedics to Gavin’s NICU room where I watched and waited as they prepared him for transport. “My wife”, I thought, “I can’t leave her”, but she was just 12 hours out of delivery, she wasn’t going anywhere and no doctor in their right mind would release her.Gavin in NICU – June 2009

               I reluctantly watched as the paramedics loaded Gavin into the ambulance during this surreal moment. I didn’t know what to do. I was lost without my wife in this situation and I didn’t know the condition of my son’s health either. How long would I be at the hospital without her? What if she needed me to be there for her? I know I need her, but she was miles apart from her son and I, and she couldn’t even get out of the hospital. The ride from North Kansas City to Children’s Mercy Hospital seemed like an eternity. As we pulled away from the hospital, I felt an unwanted and undeserved sense of betrayal as I left my wife. My eyes were fixated on the passenger side mirror until I could no longer see the hospital’s exterior structure and then…only then did I start to turn my focus on what lie ahead.

Gavin-Children

               The paramedic driving the ambulance was great. He was skilled to the highest degree at diversion and kept my mind in the here and now. He helped keep my spirits high as my mind raced from thought to thought; speeding from conclusion to conclusion, from my wife, to my sick child in the back, knowing the only thing that was separating us was the metal interior wall of the ambulance. He was back there and he was hurting. I kept turning around expecting to see him, but nothing…I…saw…nothing. We arrived at the hospital emergency room area and something had changed during the short trip between the two hospitals. Something was wrong…really, really wrong. The paramedics had picked up their speed from the original pace and were moving swiftly with a sense of purpose. “What’s wrong?” I thought. How in the world did we get to this point? What’s happening? “SOMEBODY PLEASE TELL ME WHAT”S GOING ON!!!” I thought. The paramedics allowed me to have a brief moment with Gavin and off they went, to where, I didn’t know, and if or when I would see my son again, that I didn’t know either. I stood there in silence, in shockand in disbelief that this was happening.

               One of the paramedics took me to the NICU waiting room area and asked me to wait there and someone would be out shortly to speak with me. It was approximately 2:00AM in the morning. I had no one to call and my best friend was miles away, stuck in a lonely hospital room by herself. The hospital staff showed me to the NICU family room which was a small room among a plethora of doors which lined the NICU hallways. The room was pitch-black as I entered into it. I turned on the light and the room consisted of; a chair, loveseat, computer and desk, refrigerator, a shelf with an assortment of books and magazines, cabinet space, a small dining table with four chairs and a coffee table with a phone placed directly in the center of the glass top. The room was crowded for a single person, much less introducing multiple families to this area, but it was definitely homely. I was lost, lonely and afraid. I don’t like sitting and waiting in normal circumstances, but I couldn’t pace very far in this room and I couldn’t roam the halls as I was waiting on a report regarding Gavin’s health. I paced the room as far as I could, and then back and forth, back and forth and around the table; I paced for I don’t know how long. I nearly collapsed onto the loveseat, assuming a fetal position as I began to sob uncontrollably. After gaining my composure for a brief period of time, I placed my earphones tightly into my ears, selected Tenth Avenue North’s By Your Side and hit repeat on my MP3 player. I laid down on that loveseat, soaking it with tears of desperation and sorrow and began slowly falling away from God. I was angry and upset; I wanted to tear this little room apart in frustration. It took everything I had to not dismantle that room. It wasn’t about a single event though, but the onslaught of three separate tragedies, three separate children and three totally different medical emergencies.

 

Tenth Avenue North’s By Your Side

Why are you striving these days
Why are you trying to earn grace
Why are you crying
Let me lift up your face
Just don’t turn away

Why are you looking for love
Why are you still searching as if I’m not enough
To where will you go child
Tell me where will you run
To where will you run

And I’ll be by your side
Wherever you fall
In the dead of night
Whenever you call
And please don’t fight
These hands that are holding you
My hands are holding you

Look at these hands and my side
They swallowed the grave on that night
When I drank the world’s sin
So I could carry you in
And give you life
I want to give you life

(Chorus 2x)

Cause I, I love you
I want you to know
That I, I love you
I’ll never let you go

(Chorus 2x)

 
 
 
 
 
 
 
 
 

Gavin - Children

 

               I want to say that someone came for me around 3:00AM, but I had lost all consciousness of time and my surroundings; I was in a state of shock. A member of the hospital staff called out my last name. At first I thought I was dreaming, but I looked up from the loveseat to see a silhouette of a man standing in the doorway. “Am I dreaming? Are you talking to me?” I questioned, or so I thought. He seemed to ignore my self-spoken rhetorical questions and said, “Mr. Harris, I need you to come with me”. I reluctantly followed him as my mind began to clear from the groggily haze I was caught up in and I immediately began thinking the worst. What is he going to tell me? Where is he taking me? How am I going to tell my wife? I followed the man down the hall and into a room at which time he pulled up an x-ray on the computer screen. He explained to me that Gavin was experiencing severe respiratory distress and that he was in respiratory failure secondary to Pneumonia and tension pneumothorax along with a pulmonary hypertension component. This meant that Gavin had a hole in his right lung and it was leaking air out to his chest cavity. This outward force of air could not escape his body thus creating the tension pneumothorax which meant the lung was being forced into the heart causing the heart to become distressed as well. Sometime during or immediately following transport, Gavin’s right lung collapsed and immediate life-saving action had to be taken. The course of the following actions would determine if Gavin would take another breath or not.

Gavin - CMH NICU - June 2009

         

      The doctors had to do something to get this air out of Gavin’s chest cavity in order to release the pressure off of his right lung and heart and if they didn’t do it or do it quickly enough, he would die. The resident doctor plunged an air-evacuating 18 gauge needle in between Gavin’s second and third rib trying to clear the air…and…nothing. The resident plunged the needle a second time trying to evacuate the air and this time, 85mL of air from Gavin’s chest cavity was evacuated. The resident doctor plunged the needle into Gavin’s rib cage one more time and the attending doctor one more time as well, evacuating an additional 90mL of air which was pressing against his lungs and his heart. All in all, the doctors removed almost a cup of air from Gavin’s chest cavity. Imagine adding a measuring cup, one cup, in between an infant’s rib cage and their lungs. The doctors removed the immediate concern for now, but the pneumothorax kept recurring and a chest tube was inserted into his ribcage and sutured to hold it in place. I actually saw an image of the chest tube in the x-ray I was looking at as it punctured its way through his skin and ribs and into his chest cavity. The particular x-ray I was looking at had been used to make sure the chest tube was properly placed.

          

Gavin-Children

     I sat there motionless, expressionless and without words to say. My posture was slouched and my gaze stared empty at the x-ray before me. I guess the gentleman was expecting a different reaction, a different response, but I was growing numb. I had nothing; no words, no reaction, no response and no feeling. Attempting not to look cold-hearted, and especially because I wasn’t, I concocted a story, a true story nevertheless and explained it to him. I told him about my previous experiences with our other two children and chalked up my ostensible calmness to experience. The fact of the matter is that I was clueless, emotionless and shared the likes of the walking dead. I was a man who had abandoned his shell, the shell which sat empty before this gentleman. I was terrified, afraid, and lonely. All I wanted was to be with my wife. Did I mention I was terrified? I wasn’t supposed to be hearing any of this without her. I went back to the family room after this, laid down on the loveseat, reassuming a fetal position; as a matter of fact it was the exact same position as an hour earlier. I continued building a wall, brick by brick, layer by layer, a wall that would prove difficult to tear down. I built this wall to protect myself from the emotional trauma of the situation. My natural human instincts were kicking in, trying to protect my psyche and preserve my mind from further trauma. I knew Gavin’s situation was bad, but I would not have an idea of just how severe it was until my wife and I were reunited. Our reunion would come less than 12 hours after my departure from North Kansas City Hospital and this would be one of the longest 12 hours of my life.

               The family room was dark and as I laid down on the loveseat, once again I inserted the earphones tightly into my ears and pressed repeat on the MP3 player. I picked up right where I left off listening to Tenth Avenue North’s By Your Side. I grasped at anything and everything trying desperately to bring myself closer to God. I needed a strength and hope that went beyond the moment, beyond the situation and most of all, beyond me. I needed a strength that came from God. I had already called Heather prior to laying down, keeping her apprised of the situation as she was still at North Kansas City Hospital and I was at Children’s Mercy Hospital with Gavin. The one thing I didn’t know just yet was that when they placed Gavin’s chest tube, he was also intubated and placed on the ventilator. Prior to the ventilator, Gavin was on 100 percent oxygen and his O2 stats were still dropping below 80 percent. If you remember from Blake’s story, this prolonged exposure to low levels of oxygen can lead to permanent brain damage in infants. We also had no idea that at this point in time, Gavin was the top priority in the NICU and would be so for several nights. He was still in critical condition.

Peek-a-boo...He put that on there himself...Really.

               I floundered into some kind of somber mental state and all I wanted to do was sleep. I just wanted to close my eyes and sleep. This way I wouldn’t have to think about things. The charge nurse came in the family room and said that she could probably get me a bed in the Ronald McDonald House. She had already come in the family room several times informing me that I couldn’t sleep in there. So around 4:00AM I stumbled my way through the hospital halls to the Ronald McDonald House. I wearily punched in the access code she gave me and found the way to my assigned room. I was afraid to go to sleep because I knew I would have problems getting up. I set the alarm on my mobile phone, but I didn’t have a charger and my battery was nearing the end of a charge. I finally fell asleep, but I didn’t regain a conscious awareness until sometime around 10:00AM. Apparently, Heather was trying to reach me that next morning and the charge nurse didn’t leave any sort of note or indication as to where I was. I was missing in action to everyone else. Since the staff couldn’t locate me, they told Heather I wasn’t there. I finally woke up and spoke to my wife only to find out that Gavin’s condition had worsened and the medical staff was contemplating what to do next.

        

Gavin - CMH NICU 2009

       Heather made it to the hospital a little later that same morning just 18 hours after having a baby. I’m not really sure how she connived her way out of the hospital, but she did nevertheless. It felt awkward and weird going through all this experience and not being able to hold and bond with your own child. Gavin’s condition continued to worsen and the doctors had one last option as the tension pneumothorax kept recurring. We weren’t sure if we would ever get to hold our precious little child again. The doctors were even beginning to sound skeptical at this point. The hope that once protruded from their voices was diminishing from their spirits. Heather even asked the doctor about breastfeeding since she was pumping all this milk and investing all this time. At one point she had such a surplus of breast milk that we began throwing it away. When she asked the doctor about stopping (knowing that Gavin may never feed from it) he said she should keep pumping and maybe it would give her some sort of purpose, making her feel like she was contributing to the effort. She pressed the matter further and the doctor told us that everything was hour by hour at this point in time and they were doing absolutely everything they could; every resource and every tool they had at their disposal was being used, well almost every resource. The doctors had one last eleventh-hour effort before we had to realistically consider our options ; just how long do we allow this to go on? At what point have the doctors done all they can do and Gavin has taken all the stress that his feeble little body can take? Would we have to make the choice to pull the plug on our own son? Would we have to end life support? We began having these discussions with the doctors as our fears became closer and closer to reality.

               The doctors had to place Gavin on their eleventh-hour effort which happened to be the oscillator. This machine allows the lungs to function differently which limits the impact of trauma on the affected area. The doctor asked my wife if she knew what an oscillator was and he wasn’t ready for her answer. Her response back to the doctor was, “I know that I have hardly seen anyone come off of one”. The doctor was taken aback with a surprised look on his face as if he didn’t know how to respond. He was able to come back with some reassurance, but how reassuring can you be after not only having, but engaging such a discussion. Even though the situation had worsened, I was relieved and my emotional state had improved since my love and life partner, my wife was once again by my side. We truly are a unit, WE ARE ONE!

               Respiratory failure takes on a unique pathology in infants. There are many conditions which doctors can do amazing things with the body and keep it functioning while they fight on for answers. Respiratory issues can often be a different story. The child can work so hard at maintaining their breath and life until they come to a point when they are no longer able to sustain this effort. At this point, they will simply give up and stop breathing altogether. There are no life-saving measures or CPR that can be done at this point. When they give up, they give up. While this is not necessarily  a medical definition or a professional explanation, this is exactly how our doctor explained it to me after I asked him at what point do we think Gavin has had enough. I was beginning to accept the reality of and what could ultimately happen should Gavin’s body give up.

      

Someone loves their Teddy Bear

         I never thought I would be in this place. Even with the previous two medical conditions of our first two children, I never contemplated ending life support functions. Thank goodness that while this was becoming a reality, it was more of a fleeting thought in our minds and the doctors had yet more work to do. The oscillator actually seemed to be just what Gavin’s lungs needed. The ventilator allowed his lungs to deflate too much causing undue stress on his pneumothorax. The oscillator kept his lungs inflated so they didn’t have to work as hard, giving the pneumothorax a chance to heal and this was just what his body needed. The pneumothorax was decreasing which meant his lung was healing. The true test would come when it was time to remove the chest tube and start weaning him off the oscillator. Gavin had to have blood drawn from his heels for Arterial Blood Gas tests multiple times per day, every four hours to be exact. These tests were performed so the doctors could check the carbon dioxide to oxygen levels in Gavin’s blood stream. It is one thing to have low O2 stats, but when the body cannot exchange the CO2 for oxygen, things begin getting ugly real quick. His poor little heals had been poked so many times that they literally were starting to look like hamburger meat. The resident doctor and even an attendee made three separate attempts at starting a central line to try and give Gavin’s heels a break. Starting a central line is a very painful procedure because the blood has to come from an artery and not a vein, but all three attempts failed miserably. We anxiously awaited 10-15 minutes for the procedure to be completed as this was how long the doctors told us it would take. We sat with immediate family members in the waiting area and went from relieved, that Gavin was getting a central line to give his heals a break, to frustrated and mad that our child was being used as a guinea pig for the resident to learn on. After an hour of poking and prodding, the medical staff finally determined that they were doing more harm than good and ceased trying.

        

Somebody

       We went to the hospital to give birth on a Thursday and by Friday, our son was on life support and that first night and second day he needed further intervention to save his life. He was placed on the oscillator on Saturday and for the next five days, we questioned whether or not we would be taking our child home, just as we had taken our other two children home after their experiences. The only true way to see if Gavin was getting better was for the medical team to put him to the test. The doctors clamped the chest tube and began monitoring Gavin’s pneumothorax at which time there was minimal recurrence. My wife and I were reluctant about the procedure and insisted the doctors take another chest x-ray and continue to do so until they were 100 percent certain there would be no relapse. They insisted this was normal and that everything was going according to protocol at this point. Gavin’s pneumothorax DID NOT progress any further and the doctors began to decrease his reliance on the oscillator. This is always a scary moment as this is the moment you are waiting for, but dread at the same time; however, this dread would be short-lived.

               When Gavin came off the oscillator, he did so with a fierce resiliency. He bounced back tough and within 24 hours he went from an oscillator to a nasal canula, just as fast as he declined, he bounced back just as strong. The doctors were amazed at this display of defiance that Gavin was demonstrating. We were ecstatic and joyful that he not only recovered, but did so with such tenacity. On Father’s Day 2009, I received the best Father’s Day gift up to this point and probably ever, as we were moved out of the NICU and into a regular room on the fourth floor. We were almost home. After almost two weeks in the hospital, we headed home with our not-so-new infant so we could begin integrating him with the rest of our family.

Almost out of the NICU

               The emotional wall I built while in the hospital was tall and strong. I approached God from a distance for a long time, a year and a half to be exact (If you’re wondering, that is the present day). Until now in this moment that I write this blog, I have begun tearing these bricks down one by one. I am destroying the façade which was built on that family room loveseat the night that Gavin was born. I had spent many days in a children’s hospital up to this point, but this experience would impact me the most. This was the collective end to three separate medical traumas. The experiences are like snapshots in my mind. The images and memories are embedded deep within the electrical circuitry of my brain, but one particular experience stained my mental imagery and is embedded in my mind like a scar on the flesh to this day. The several weeks I had spent in a children’s hospital setting over the last several years brought about many experiences before me, but this time introduced me to an entirely new experience altogether and a new perspective to my way of thinking. I had never heard the wailing cries of a grieving mother, at least not until Gavin was born and hospitalized. This mother’s cries poured out from the hospital walls and the door of a private room that all of a sudden wasn’t so private anymore. I imagined her tears hitting the carpet as I know mine would have been and all I wanted to do was hug her. Family members lined the hall of the NICU, presumably to have one last moment with their child, grandchild or some other relative and to console one another.  Everything was suddenly put into perspective. The one thing I hope I never hear again is that sad and painful cry deep from within a mother’s soul. I cannot even begin to adequately explain how it tears at your heart.

 

Nothing Like the Bond Between Mother and Child

              No matter how bad things are or seem to be, they can always be worse. Gavin’s health was poor, but this family had lost their hope. Their hope was now in another world while we still had our hope in this world to cling on to. Gavin was still fighting and this ultimately forced us to fight right there along with him. We never gave up or lost hope, even when all hope seemed to be lost. Even if at times we were hanging on to hope by a thread, this grieving mother had lost even that; no rope…no string…no thread…no hope. She would eventually leave that hospital with empty arms and without the joy of her life.

               Gavin is now 18 months old. He is by far the most active of our three children and is into any and everything he can get his grubby little hands onto. His smile never fades and for having two older brothers, Gavin holds his ground pretty well. The one thing we really struggled with again during this time frame was how to meet the needs of not one additional child, but two additional children. We had one child who could somewhat understand the critical nature of the situation and the other who was still clinging to his ego-centric principles. Most of our visits with the boys were spent in the hospital waiting room as they played with community toys and managed to annoy other families waiting for time with their loved ones. I was able to sneak away to one of Blake’s baseball games, but you could tell this time that the thought of mom and dad being gone all the time with little brother was visibly weighing on their minds, regardless of the circumstances.

               So, third time is a charm…right? This is kind of what we thought as well. Then again, it is just a saying, a saying that concludes not in a specific number, even though it does use the numerical value of three, but a saying that concludes with perseverance. It’s kind of like the saying if at first you don’t succeed try again. What it is really saying is to keep going, never give up. It doesn’t matter if it relates to your parents, your children or your relationship with God. The only thing that matters is that you never give up. Don’t lose hope in yourself or others, for when you do, that is the moment you lose yourself, just as I did that lonely night on the family room loveseat. God is all about first, second and third chances. How about you? Are you ready for a second or third chance at life? Maybe the third time is a charm, then again it could be the first or second time, but you may never know what could be missing from your life until you try.

 

Blake, Heather & Josh - May 2006 Colorado Springs - Heather is pregnant with Cooper here.

“There is no greater test to faith and marriage than the very thing that shares the flesh of both husband and wife and the thought of it being ripped away from you.” (Joshua Harris, Testimony, 2006).

                My wife and I learned so much from our experience with Blake. We learned much about who we were as individuals, as people, as a couple and most of all we learned a great deal about our own characters. The quote above represents the stress which is born from heart-wrenching experiences such as ours and how this stress impacts our most important and meaningful relationships, both negatively and positively. We experienced one of the most traumatic moments of our lives up to this point and we experienced it together. I cannot imagine going through something like this alone. I cannot imagine living these moments without my wife. We had already developed a strong foundation prior to our experience with Blake, but this moment set the concrete to form. It strengthened us as individuals, as a mom, a dad, a husband and a wife.

                We were always on the same page when it came to having children. She agreed to more than one and I agreed to less than five. Actually, I think she just went along with me on this one and figured we’ll cross that bridge when we get there. We decided to wait at least a year after Blake was born before trying to have another child. This year turned into three as my wife pursued nursing school and the demands of the curriculum proved to be exhausting and not conducive to lend patience or time to a child-bearing/raising environment which was beyond our current means.

                Heather’s rigorous school schedule and part-time employment proved to be a challenge all on its own, not to mention trying to add another child into the mix of things. The slam dunk goal for us not having a child as I previously alluded to was ultimately Heather’s school requirements as the amount of time needed off school for the pregnancy would interfere with and only prolong her being able to graduate. We even tried to be slick and time the pregnancy for her Christmas break, but that mathematical equation just didn’t work out for us. So we waited…and waited… and waited. We waited until my wife was almost out of school and sure enough, SLAM DUNK!!! She was pregnant!

                We were very cautious as to not tell anyone about the pregnancy until our window of comfort had passed, but this was nothing different from the first time we were expecting. Blake was just over three years old and managed to keep this entrusted secret until we were ready to unleash the news. We let Blake tell the rest of the family the good news. He managed to harbor this secret for three long months. He was itching to tell someone, but he kept his composure and stuck it out. This pregnancy, much like the first was very stereotypical, even up to the end. As we neared the end of the pregnancy, Heather’s blood pressure started rising again and with her history of pre-clampsia, the doctors did not hesitate, they went ahead and scheduled her for an induction. There would be no failed induction this time and Heather delivered herself a birthday present. Cooper was born on his mother’s birth date, November 12, 2006, just over four years after the birth of our first child.

Cooper Elijah Harris

                I was a little more at ease this time in the delivery room. We chose not to tell family and friends about the induction so we had the delivery room to ourselves with no one anxiously awaiting our announcement in the waiting area. We purposefully didn’t invite anyone so we could share in some peace and quiet among this new edition to our family. The commotion and chaos of the birth experience the first time around was overwhelming. My wife and I just wanted to share an intimate environment where we could take everything in without any additional stimuli. With Blake, I felt as if we catered to everyone elses needs and for that brief while, my wife and son were overlooked. I cut Cooper’s umbilical cord, just as I had done with Blake and watched the bonding moment which is supposed to take place once a mother and her child are united together for the first time. I anxiously traversed back and forth, back and forth from Cooper to my wife, to Cooper, back to my wife and so on. A sense of calmness overcame me throughout this situation, but the skeptic was still looming within. Everything was going just as we had wished and prayed for and by all external indications, we had ourselves a healthy little boy named Cooper Elijah Harris.

                We had a few setbacks while in the hospital, and our total visit time crested over the typical 48 hour mark and topped off somewhere around 72 hours. Each issue was magnified to us as our senses were on high alert and the watchdog in each of us was prowling around looking for and preying upon the slightest inconsistencies in our son’s health as we were hypersensitive to everything happening around us. There were several issues which coupled together to warrant our three-day stay, the first of which was Cooper not being able to urinate after his circumcision. The next step was for Cooper to have a bowel movement which was delayed as well. For a baby to leave the hospital there are essentially three things which have to take place; they have to eat, pee and poop (I know, extremely complicated stuff here). Cooper was already having difficulty with two out of the three, but as you will soon find out, the third item on the menu proved difficult as well.

Cooper - November 12, 2006

                The last and probably most significant issue, looking back in hindsight, was Cooper’s inability to suck. Cooper was born without a sucking reflex which is innate to most infants, but nope, our son had to go and prove to be difficult. Cooper had to be hand fed with a syringe and even then he was throwing up a lot of his feedings, all while in the lovely comfort and security of the hospital. Cooper needed to be monitored by the NICU so they could measure every drop in and every drop out. We were already commenting frantically between each other with dead-end guesses as to what was going on with our son and what the next steps would look like. Was our hypersensitivity skewing our ability to reason on behalf of our child, thus causing us to overreact?

                Heather was going to make an attempt to breast feed this time whereas with Blake it wasn’t even an option she would consider, but Cooper’s sucking reflex, or lack thereof, proved this task to be quite difficult. Not to mention Cooper was throwing up on a regular basis, but the full extent of his vomiting wouldn’t reach a climax during our stay at the hospital. In the meanwhile, Blake was excited to have a little brother and the “big” responsibilities which come with such a title, but this excitement faded as Blake began to realize that Cooper wasn’t some sort of ready-made playmate. There we were, cautious and reserved due to our previous experiences, but nevertheless, we went home as a family.

Blake's Ready Made Playmate - Sort of

                It wasn’t long before Cooper’s symptoms progressed and wreaked havoc on every blanket, rug, towel, carpet, clothing and any other household item within reach of his mouth. Heather’s mom made special bibs out of hand towels which we still have to this day to try and cut down on the amount of laundry we were mowing through. How can one baby cause so much laundry? Cooper threw up on multiple occasions throughout any given day, sometimes upwards of 25 times or more per day. Within 10-14 days of Cooper coming home, it was back to the doctor’s office to investigate this abnormal activity which was culminating within our second child.

                The doctor suggested maybe there was a conflict with the breast milk and decided to have us try regular formula. Two more weeks dragged by and so had several gallons of vomit. We made our way back to the doctor only to have them tell us to try a soy-based formula. We were becoming extremely frustrated, but we both acknowledged there were certain steps which had to be taken before jumping to any conclusions, even though in the end, Heather turned out to be right the entire time. No matter how right she was, she was not the professional doctor making these medical decisions about our child’s health. She was a self-admitted basket case, questioning every move, every word, including her own. She spent countless hours pecking away at the keyboard, constantly clicking the mouse as she surfed from site to site, looking for anything and everything that might be meaningful or remotely related to Cooper’s situation. Sleep deprivation became the norm. All in all, we were both frustrated, and very pessimistic about the soy-based formula and everything else, but as previously mentioned, we needed to go through these steps first.

                Two more weeks passed by and with each new suggestion presented by our doctor, we grew more and more frustrated and less and less confident in their ability to diagnose our son. In the meanwhile, Heather’s madness was taking a toll on her and our family as she mustered all available resources to the attention of Cooper. I was able to keep my composure during this time and had to try and be the rational member of the family, even as I questioned my own rationale during this timeframe. The next suggestion led to some special formula for babies with reflux that I can’t even pronounce. I mean, really, who’s going to stroll down the formula aisle at the local grocery store and be like, “I would really like to buy that stuff I can’t even pronounce. What is it again?” Anyways, I had a little ADD moment there; now let’s get back to the story.

                During this process my wife scheduled an appointment with the Gastro-Intestinal (GI) clinic at Children’s Mercy Hospital, but we couldn’t get in until March. I’m thinking, IT”S DECEMBER!!! What do you mean we can’t be seen until March?  Needless to say we tried the formula I couldn’t pronounce and continued struggling to get much-needed answers for our son. We were growing tired and weary of all the back and forth with the doctor and the unsuccessful attempts at diagnosing Cooper’s condition. If one could be at wit’s end, we were as close as two parents could be. We decided to try and speed up this process by taking Cooper to the emergency room; however, the emergency room acknowledged there was “a” problem, but as long as Cooper was hydrated, it wasn’t an “emergency room problem”. There was nothing to technically admit Cooper for.

                In a matter of weeks, Cooper’s weight snowballed into an avalanche down the slopes of the growth charts and we began questioning our roles as parents as we couldn’t get the necessary answers for our son. We knew there was something wrong and we knew what it had to do with, but we couldn’t get the help and answers we were so desperately looking for. So after we tried the formula that I couldn’t and still can’t pronounce, we then went through the process of trying antacid medications, but none of them helped Cooper with his symptoms. We made it through Christmas and the New Year Holidays, but we had to do something, something more than what we had already done. We had to become our son’s advocate as no one else would.

Cooper - Christmas Eve - Not looking so hot 😦

                                We approached our family doctor one last time and asked them to call in and admit Cooper directly to Children’s Mercy Hospital, but the doctor’s office couldn’t do direct admissions. We departed from the doctor’s office and headed straight to the emergency room yet again, a trip which I hope we will never grow accustomed to making. We stretched the truth a little bit (OK, OK, WE LIED!!!) just to get Cooper seen, but at this point Cooper weighed the same at two months as Blake did when he was born, and over the course of these two months, Cooper gained a whopping 13 ounces. We were beginning to fear that this state of malnutrition would lead to further growth or developmental issues, especially since the first several months are critical for normal brain development.

                We told the emergency room doctor that Cooper had low urine output so we could get him admitted. Cooper’s urine output was low, but it was relative to what he was actually eating so he didn’t really have low urine output, but we were desperate at this point. Three days earlier, I sent an email to a close friend describing Cooper’s condition; I mentioned that Cooper was really struggling with eating and sleeping. His throat was burned from throwing up so much that even everyday menial tasks were becoming difficult for Cooper to manage. Cooper would get hungry and cry, then we would feed him and he cried some more because it hurt to eat and then he would go to sleep and wake up crying because he was hungry and then cry some more because he was tired and couldn’t sleep. Cooper was caught up in a vicious little cycle and it was tearing us apart as we tried every available option up to this point.

                We were admitted to Children’s Mercy Hospital on the evening of January 8, 2007. The first seven days were nothing more than trying different medications and seeing if these medications would help ease Cooper’s symptoms. The doctors had other options, but after being in the hospital for seven days, we were down to one last hope before surgery. Small doses of certain antibiotics are known to help babies with GI issues, but our conventional methods of treatment were diminishing one by one until now and this was it; this was our last stand. The medication was administered and to no avail, the antibiotic sadly did not work, having no effect on Cooper’s vomiting. This was our seventh day in the hospital and we had yet to come close to a final resolution. My wife and I even questioned going home among each other so we could administer all the different medications at home. I mean, did we really need to be in the hospital just to have someone administer medication to our son. We didn’t think so. We talked back and forth and then decided to ask the doctors to release us so we could try this sit and wait approach from the comfort of our own home.Cooper in Hospital

                My wife and I made the decision to go home that night and get some much-needed rest.  Up until this point, we provided full care to Cooper while he was in the hospital so no one ever had a good picture of just how much he was throwing up. After enjoying the confines of our own home, even though when you’re home, the only thing on your mind is wishing you were at the hospital, we were anxious to return and see Cooper again even though we essentially just left. We were early to rise that morning and hurriedly made our way back to the hospital. We made the long track from the parking garage to the hospital room to see our son. Once we reached the nurse’s station, we were surprised to see the nurse holding our son. He apparently had a rough night and the nurses were making an attempt to console him. They kept saying how adorable he was and described Cooper as this precious little gem, but we were more worried about the details of his night. Cooper had thrown up 12-15 times over the short amount of time that we were actually gone and finally, FINALLY, someone else saw what we were talking about.

                On top of everything else that was already in motion, I was enrolled in classes (12 credit hours) and had to do a great deal of study, assignments and online exams from Cooper’s hospital room. At one point during our stay, I had to beg one of the nurses to come in and comfort my crying baby as I was in the middle of a timed exam at 2:00AM in the morning. Heather was spending the night at home preparing to start a new job at the very hospital which Cooper was receiving treatment at. Orientation was bright and early (well, I’m not so sure about the bright part) the very next day and Heather had the pleasure of spending even more time at the hospital than she already was. Our normal lives already bordered a state of organized chaos and then throw in Cooper’s health problems on top of all this, the situation darn near turned frenetic.

                Where was I? Oh yes, I was talking about possibly taking Cooper home. How foolish of us! The doctor paid us a visit on January 15, 2007, seven days into our stay at Children’s Mercy Hospital, and the short amount of time that the doctor was in the room, Cooper threw up seven times. If you couple that with the night before, the nurses and doctors had seen enough to confirm our concerns; however, this entire time, the medical staff had to rule us out of the equation. There is a substantial amount of failure to thrive cases which are due to parents neglecting or abusing their children. We knew this prior to being admitted to the hospital and it was a concern of ours that the medical staff might suspect neglect or abuse. When we chose to go home for the night, this gave the nurses and doctors an opportunity to evaluate and care for Cooper without us being there. They were trying to rule out neglect and abuse and we knew it. It was killing us as parents to even think they considered it as a viable option, but at this point, I think or at least hope it was more protocol than anything else.

                Surgery looked more and more inevitable at this point; however, the side effects of surgery and having to opt our son into the surgical room weighed heavily on our shoulders as the story with Blake was much different. With Blake we didn’t have a choice, as not having surgery meant he would die. We still held a brief glimmer of hope that surgery wouldn’t be needed, but if it did, it would have to be our “choice”. Our skepticism over GI medications led to more concerns during this wait and see mode as there was potential for some very harsh side effects. The use of some of these medications for periods of longer than 12 weeks can lead to severe, long-lasting neurological effects. We were almost hoping and secretly praying that the medications wouldn’t work. The next 24 hours were filled with a multitude of tests and evaluations to rule out other medical conditions. Cooper was also placed on a high calorie formula to help with weight gain and to offset the amount he was throwing up.

                The doctors scheduled a Ph Study, a sweat test and an upper GI exam in the radiology department, but the upper GI test came last. There were a few different disorders/conditions which the doctors were probing for, one of which was Cystic Fibrosis. Just the thought of this diagnosis was heart-wrenching as we automatically began thinking what if.  The Ph test was a procedure where the doctors typically slid a probe down the nostril and into the throat to check the Ph level of the stomach acid to determine if someone had reflux or not and to what extent; however, Cooper’s nostrils were too small for the tubes and they had to go through the mouth which is less desirable for control and placement. The sweat test measures the amount of chloride in the sweat and is used to diagnose Cystic Fibrosis. This test was short and less invasive, but it had to be performed to eliminate Cystic Fibrosis as a diagnosis. The doctor told us at this time that Cooper was NOT leaving the hospital until he gained some weight. To some people, this would have been like inflicting agony and torture like treatment upon someone to stay in the hospital any longer, but my wife and I looked at each other with a sigh of relief; a glimpse of better days for Cooper looked to be in his future. Our son WAS going to get better, Right?

Cooper During Ph Test

                The one thing I really remembered during this time was just how time-consuming hospital life was. I was trying to manage my work schedule, school, my wife’s work schedule, another child and still trying to make sure we were available for morning and evening doctor rounds, not to mention any other scheduled or unscheduled events or procedures. One of our biggest struggles during this time, next to Cooper of course, was how do we meet the needs of our oldest son Blake without neglecting him emotionally or socially. To our surprise, Blake was a trooper the entire time. Blake was very understanding, especially for a four-year old and he was very concerned for his little brother, the same brother he thought was going to be his ready-made playmate. We were very candid with Blake and even though he didn’t fully understand what was happening, we told him that his brother was in trouble and right now, Cooper needed his mom and dad, but to tell you the truth, mom and dad needed Cooper just the same.

                The sweat test came back negative while the Ph test was definitely high. A small sigh of relief came from within when we were able to dismiss the Cystic Fibrosis diagnosis. The doctors then ordered an upper GI test which ultimately revealed the culprit behind this medical hi-jacking which held my wife, my son and I hostage for the last two months. The upper GI is performed by giving the patient a nasty drink (I assume it was nasty according to the scowl on Cooper’s face) to contrast with the GI system. This was a horrible experience as Cooper was strapped and locked into a device which then flipped him upside down so the radiologist could acquire an image of his esophagus and stomach. Cooper threw up the majority of the contrast almost as quickly as it was administered to him and by judging the look on his face, I don’t think this purging of liquid was involuntary (just kidding, but I wouldn’t blame him if he had). Fear and the element of the unknown for Cooper were evident in his blood-curdling screams and his unwillingness to cooperate in this procedure. Nevertheless, the radiologist technician was able to complete the procedure and review what they needed to see.

Cooper During Upper GI Test

   With each completed test and procedure, we were closer and closer to one final reality, surgery. Cooper was still dousing everything and everyone with vomit. Sometimes I think the little rascal might have vomited on a few folks intentionally, especially knowing his personality now (just kidding…maybe). In one email, My wife made the following quirky little comment trying to make light of this heavy situation which also conveyed her frustration at the same time; “…at least Cooper made it longer than Blake without surgery. Blake (2 weeks), Cooper (2 months); however, this comment would become irrelevant in a few short years. After evaluating the Upper GI, the doctors came back and informed us that surgery was scheduled for the next day. I wish I could say we were shocked and that this decision horrified us, but it didn’t. This two month avalanche which had persisted up to this point with such a path clearing, energy draining force culminated to where we were in that moment and it had suffocating us, but at least now it was more of a relief that the avalanche had subsided or was about to. The accumulation of its effects could begin to recede.

                Cooper went into surgery on January 16, 2007 at 1:00PM and by 4:45PM we received word that the surgery went exceptionally well. The doctors performed a fundoplication which means they secured his stomach around the esophagus creating a man-made sphincter. This is also the very reason we didn’t want to have the surgery because it would limit Cooper’s ability to throw up. What if he gets sick? What if he does something stupid like getting drunk and not being able to throw up as a teenager (yes, we actually thought about this)? The surgery allowed Cooper to dry heave and that was about it. Anyways, he was throwing up because the stomach had an open route right back up through the esophagus and out the mouth onto whatever was in its way, it being vomit. I know, I know, just what you wanted to hear about. I hope you already had your meal of the day prior to reading this, but don’t be too disgusted. Cooper’s vomit was definitely indiscriminate and blessed all with its presence, regardless of who you were. Cooper was now ready to begin his journey down the road to recovery.

                Cooper had five little punctures, two on each side of his abdomen and one through his belly button. The success rate at Children’s Mercy Hospital for the fundoplication surgery is 90% so we knew we were in good hands, we just had to reach out for those hands a few more times than we really wanted to. The surgeon made it to where if Cooper absolutely needed to vomit, he should be able to (even though this theory has yet to be tested) vomit if the force becomes intense enough, but it still won’t be a vomit like yours or mine.

Cooper's War Wounds - Sort of

                The feedings started out really slow. We gave him one ounce every two hours, but we had to make sure this ounce lasted for at least 30 minutes. If we fed him too fast he could wretch (dry heave), compromising his surgery. If we fed him too slow Cooper might not get the needed calories over the course of a 24 hour period thus extending our stay at Motel Mercy. We actually got to go home the next day as the feedings were going really well, but Heather’s insistence of going home instead of being monitored at the hospital also played a role. Once arriving at home, it was a feeling of déjà vu as if we had made a very similar trip through these doors before. Cooper was extremely uncomfortable the first several nights as he was hungry for more than we could feed him. He was bloated from surgery, and cried because he was gassy; crying made his stomach hurt more which made him cry even more. It didn’t matter what Cooper did, he could not win for the next several days.

My wife stated the following in an email;

“…Me and Josh may not make the healthiest babies. We are very fortunate and blessed to be able to have babies that get to have surgeries and return home as there are many, many children that never leave the hospital and their parents go home with their arms empty. Hug your kids extra tight tonight.”

                One week later, we took Cooper to his post surgery check-up. Before the surgery, Cooper was listed as failure to thrive, the vomiting caused Cooper to miss out on much-needed calories which were needed to fuel his body and begin storing much needed fat for future growth and development. He was one percentile in weight, 10 percentile in height and 15 percentile for his head circumference. In a matter of one week following surgery, Cooper gained one pound, 11 ounces. This equated out to 25 percentile for weight, get this, 90 percentile for height and 50 percentile for head circumference. This should speak volumes to the importance and critical nature of nourishment at this age. Wait a minute though, ring the alarm people…DING, DING, DING, two weeks passed by and we took Cooper to his GI follow-up appointment. We received incorrect information from our family practitioner regarding Cooper’s growth chart percentiles. We were informed at discharge that Cooper needed to gain 30 grams per day to make sure his brain was growing and developing the way it should, but Cooper had only gained 12 ounces per day. If he didn’t gain this weight within two weeks, the GI clinic was going to re-admit him. We needed Cooper to start gaining weight NOW.

                We made our way back to the GI clinic almost one month later and it was Cooper’s last dance with the clinic. This was it! He weighed in at almost 14 pounds, making substantial gains and there was no looking back or incorrect information this time. We waged war with a medical condition for almost three months in all. We hung in there and fought the best fight we could. Cooper experienced cognitive, speech, and comprehension delays which he received aggressive treatment for. He still has speech therapy once a week in which he is progressing slowly, but progressing nonetheless. Cooper is four years old today and is the most adorable and energetic boy you will meet. He drives both of his brothers absolutely nuts from the inside out (He’s the middle child). One can’t help but wonder sometimes if we had acted sooner might we have curtailed these delays? This is a question we will never know the answer to so I try not to spend too much time dwelling on this or searching for a concrete answer.

Cooper One Month After Surgery - Looks Like a New Baby

                I was completely blindsided by Blake’s medical condition. The onslaught came on so fast, but this moment taught me to place my trust in God. Cooper’s situation allowed me to place my trust and peace in God. This isn’t to say I had a complete serene feeling come over me, but God was taking control of the situation. I had an overwhelming peace for the most part of this ordeal and yes, I had negative thoughts arise, but they didn’t consume me like before. God came through like He always does, but I was in a place where I could experience God’s comfort and peace as His peace and comfort was always there before, but I wasn’t in a place where I could reach out and accept it. My comfort and peace was situationally based and not foundationally based.

                Cooper’s journey felt like it took place over the course of a year, but it was over a period of three short months and we had essentially sat back, watched our child be born and then wither away to a state of failure to thrive. We went from helpless, to hopeful and then to helpful as we demanded further treatment for our child. There were several opportunities for us to question our parenting abilities, and we did. We wondered if the doctors were doing the same or if protocol was all that mattered, but all in all I think it is more of a process when something like this goes array. I don’t know a single person who would question our love or our parenting abilities toward our children.

I would like to say our experiences end here and that all was well in the Harris house moving forward, but one last tragedy would strike our family and this time it would take us to the edge of losing a child.

Do you not know? Have you not heard? The Everlasting God, the Lord, the Creator of the ends of the earth does not become weary or tired. His understanding is inscrutable. He gives strength to the weary, and to him who lacks might He increases in power. Though youths grow weary and tired, and vigorous young men stumble badly, yet those who wait for the Lord will gain new strength; They will mount up with wings like eagles, they will run and not get tired, they will walk and not become weary.

Isaiah 40:28-31

Cooper - 4 Years Old

 

…To be Continued

My wife and I on our Wedding Day

        There are instances in our lives when we are devastated by tragedy, overcome by grief or just plain overwhelmed by the circumstances of life. Every once in a while we can catch a glimpse of hope from others which fuels our desire to rise above the situations we often find ourselves in. This is a story, a family’s story of how they overcame three very unique circumstances involving the health and livelihood of their children. This is my family’s story.

     One of the most exciting moments of our marriage, next to getting married of course, was the birth of our first son. The anticipation leading up to this moment was like nothing we had ever felt or experienced before. A blitz of emotions came and went as this newfound responsibility became closer and closer to a reality. I was nervous, excited, scared and happy among a host of other emotions which are both too many and too complex to address here.

        We decided to have children very early in our marriage, but it took over a year for my wife and I to conceive. Our hurried attitudes and impatient mindsets led us to go through the process of making sure we could have children and thus began looking into the possibility of utilizing fertility drugs. We made the decision to try fertility drugs and almost as soon as my wife started taking them, we discovered she was pregnant. The first part of the pregnancy was very typical in terms of your normal status quo pregnancy; however, during the third trimester, my wife developed pre-clampsia and retained large amounts of water. Her blood pressure spiked to dangerously high levels during this timeframe as well. The safety of my wife and our first child was in jeopardy which meant this baby needed to come sooner than later.

        The doctor scheduled an induction for the eighth of July, 2002. We kept our fingers crossed for a fourth of July baby, but the date came and went without a bang. We experienced this tremendous build-up of both anxiety and a fear of the unknown going into the induction process and expected to go home with a baby; however, the induction failed. We were sent home after spending just over a day in the hospital only to come back a day later and start the process all over again. My wife’s situation became more alarming as the failed induction caused her to gain yet even more water weight. My wife’s health and the health of the baby edged towards critical as the doctor’s tried one last medical procedure before attempting a C-section delivery. The medical procedure worked and the hospital staff went into full fledge delivery mode.

        The second time around did the trick. On July 11, 2002 our oldest son Blake was born. I remember being in the hospital room and feeling as if I was torn between staying by my wife’s side, who was in distress and going to see how our new baby boy was coming along. I also remember this rush of adrenaline and emotion that overcame me. I was like this giddy little school kid who just received the coolest present on earth, except the stakes were much higher. I was still very concerned for the safety and health of my wife who through the process of delivering Blake, lost almost half of her blood supply and had the doctors considering a blood transfusion.

        Taking all things into consideration, the time immediately following the birth seemed like a stereotypical delivery. The baby was born, mom holds baby (almost stereotypical), actually I was the first to hold Blake as My wife did not feel well enough, numerous visitors came and went and two days later we were on our way home. The trip home and our walk through the door for the first time as a family was a new experience. We marched those steps and treaded through that door thousands of times before, but there we were entering a house that to us, felt like a brand new home. This house we once called home as a husband and wife was no longer just for the two of us; however, it transformed into a home for our entire family (OK, OK, the three of us).

        We were home a mere 10 days and we noticed our son was not eating well. He started throwing up the majority of his feedings which concerned us, but that alone was by no means a resounding alarm to take our son to the doctor. When I look back in hindsight we were very naïve about Blake’s breathing patterns. We even have it on videotape where we thought Blake was bobbing his head up and down (remember that he is only ten days old here), but in all reality, his heart was failing and what we thought was bobbing, was actually labored breathing due to a lack of oxygen in his red blood cells. The throwing up turned into projectile vomiting at which point we decided to take Blake to the doctor. We didn’t have a clue of the severity of Blake’s condition so we took him to our family practitioner first and with the subtle placement of our doctor’s stethoscope on Blake’s chest, he calmly instructed us to take Blake to the emergency room immediately. We now had a newfound anxiety and a different kind of fear creeping over us.

        Upon arriving at Children’s Mercy Hospital I carried my son into the waiting area of the emergency room. My wife and I approached the check-in desk and apparently our doctor’s call preceded us as the hospital staff was expecting our arrival. We were immediately taken back to a room where the medical team began checking Blake’s vitals. The oxygen level in his red blood cells was fluctuating somewhere between 78-84 percent and the medical staff informed us that they needed to start him on oxygen immediately as his current oxygen levels were dipping below 80 percent (These low oxygen levels over a given period of time can lead to permanent brain damage). I remember the feelings of helplessness which overcame me. I mean, I’m supposed to protect and fight for this little guy, but I couldn’t do a darn thing.

     The doctor informed us they needed a chest x-ray which prompted a visit from the on-call cardiologist. I remember fixating my eyes on Blake’s oxygen levels and watching them as if I was a hawk watching his prey. I watched them go up and I watched them go down and with each peak and each valley; my emotions followed this up and down rollercoaster. Once the cardiologist arrived, she sat down with us and uttered a short series of words that completely rocked both of our worlds and turned them upside down like nothing we had ever experienced before. She explained that our son had an enlarged heart and he was in congestive heart failure. A mere 12 days earlier we shed tears of joy in response to the birth of our son, but now our tears of joy were turning into a pool of sorrows and our hopes for a future with our son was diminishing quickly. We didn’t even know exactly what was wrong just yet, but this was definitely unchartered territory for us. It was at this point that my wife and I looked at each other and we both lost it. I can honestly say that I have never shed such genuine tears of desperation. We were as close as two people could possibly be on that day, in that hour and in that moment as we cried together. Our foreheads pressed together as we embraced and the tears streamed down our faces. I remember crying out to God, “YOU CANT TAKE HIM AWAY FROM US; YOU JUST GAVE HIM TO US”!!! The self-pity sank in as I questioned every move to God and I tried to make sense of this mess that we were in; however, I needed to pull it all together somehow. My wife and my son needed me to be there and to be strong for them.

        In order to diagnose exactly what was wrong with Blake’s heart, the cardiologist needed to take a closer look. She ordered an ECHO Cardiogram and shortly thereafter, the ECHO cart arrived and ultimately confirmed what the doctor had said earlier; our son was in congestive heart failure. He was diagnosed with coarctation of the aorta (COA) and a bicuspid aortic valve (this was actually diagnosed at a later date) and the COA needed immediate attention. Our son desperately needed to undergo life saving surgery or he would die. His heart would work so hard at trying to sustain life that if left untreated, the muscles would give up and stop beating altogether.

        Blake had eaten prior to our trip to the emergency room so he wasn’t able to immediately go into surgery. The hospital staff wanted to stabilize him and make sure he didn’t have anything on his stomach for at least 12 hours. This was almost as excruciating because we had to sit there in the hospital room and listen to our son cry to the point of hyperventilation because he was hungry and we couldn’t feed him. My wife couldn’t stomach the idea of listening to her son undergo this torture like treatment, but me, I couldn’t bear the thought of leaving him should something go wrong. I thought I was being valiant at the time, but I was just afraid. I was afraid that I might never see my son again.

        The next day was the big day and I didn’t get much sleep due to Blake crying almost the entire night. Blake’s surgery was early in the morning and I think I played every possible scenario out in my head, both good and bad. I remember carrying Blake down for surgery. I felt like I was in a movie as we traversed down the long restricted area corridors of the hospital. With each swipe of the nurse’s security ID badge, another door would “CLICK”, opening automatically and with each door that we passed through, we became closer and closer to the operating room. We arrived at the entrance to the operating room at which time our immediate family members were asked to part ways and head to the operating room waiting area. We went back to the prep room with Blake and waited for the nurses to provide us with further instructions. This entire area of the hospital looked like a set for a movie scene, but I think this was due to 1) the unfamiliar environment we were in and 2) my inability to fully grasp the situation in its entirety at the time so I sub-consciously kept thinking on the brink of reality. We stayed with our son as they started prepping him for surgery and then we were asked to join our immediate family members in the waiting area. I hardly took my eyes off him as we walked away. Would this be the last time we ever saw our son alive again?

Getting Ready to Give Blake to the Surgery Team

        The time we spent in the waiting room was approximately 4-5 hours. We received a couple of updates along the way which seemed like lifelines as our patience thinned and our nerves were on the verge of collapse. We were surrounded by family, friends and our pastor during this time, but I didn’t feel like doing anything. I had no interest in reading and I definitely didn’t want to talk to anyone. My mind was completely preoccupied with the thought of our son being on the operating table and his life was looming in the balance of someone else’s hands. We finally received news that our son had made it through surgery and was in stable condition.

        We moved from one waiting area to the next which was the waiting area for the Pediatric Intensive Care Unit (PICU). Once we received word that we could visit our son, we went back to the PICU and saw him for the first time since handing him off to a stranger earlier that same day. Blake was unconscious from a medically induced coma. He was starting to respond to external stimuli, but we were told to limit our interactions so as not to get him over-stimulated. The pain medication was making it difficult for Blake to wake up during this time. The one thing that really caught our attention was that Blake did not even look like the same baby prior to going into surgery. The next eight days were the eight longest days of our lives (at least up to this point). We were grateful and relieved to see our son again, but we weren’t out of the woods just yet.

Blake in the PICU

        As previously stated, Blake had a very difficult time early on  in the PICU. He retained a great deal of water which permeated every part of his body including his eyelids; He could hardly open his eyes once he began to come to. Blake was on multiple medications to help regulate his heartbeat, water retention and pain management. Gauze bandages and medical tape was everywhere and tubes protruded from multiple parts of Blake’s body. His body sprawled across an incubator bed and while he wasn’t lifeless, he sure looked lifeless to us. We placed the following verses from a song at which time we thought was an anonymous poem just above his bed;

 

 

  “Sleep sound in Jesus my baby, my dear,

Angels are watching they keep you so near.

Know for His sake you’ll be safe for the night,

Sleep sound in Jesus, I’ll turn out the light.

 

Sleep sound in Jesus, sweetheart of my heart,

The dark of the night will not keep us apart.

When I lay down in your bed for the night,

He holds you gently till morning is light.

 

Sleep sound in Jesus, the angels are here,

They’re keeping watch so there’s nothing to fear.

Against any foe they are ready to fight,

So sleep sound in Jesus, I’ll turn out the light.”   

Blake in the PICU after surgery

     The nurses started to bring Blake out of his medically induced coma and prepared to take him off the ventilator. Blake had a difficult time waking up and this part of the process took longer than normal, but at this point we were just relieved to find out he was finally going to wake up and get to see his mom and dad again. Once Blake was awake, the medication began helping with the water retention and the doctors weaned him off the ventilator. Once Blake was off the ventilator, the hospital was able to move Blake from the PICU up to a hospital room on the fourth floor.  

     Our short time in the PICU exposed us to many different situations. On first arriving to our son’s PICU room there was a couple diagonal from us who’s baby’s chest was left open, the only thing protecting the child’s chest cavity was a piece of surgical plastic draped across the child’s body. The chest cavity was left open so the doctors wouldn’t have to reopen the chest for another surgery. Another child was life flighted in from out of state to be treated for some sort of infectious disease. At that given point in time, we were more upset that this baby was roomed right next to Blake and that our nurse was subbing in to help out. We watched this same baby leave the hospital in a wooden box and to think that each of these life-saving and life-ending moments take place every day in this hospital is both uplifting and gut-wrenching at the same time. I know several people who have lost a child in very similar situations and if you have lost a child and are reading this, my heart goes out to you. Our thoughts took us to that place many times during this whole experience. My thoughts, my prayers and my love goes out to you.

     People take away different learning experiences from different circumstances and even different people take away different learning experiences from the same circumstances. All in all, every moment in life presents us with an opportunity to choose and an opportunity to learn. I learned that in this life, there are circumstances beyond our control and that I can either fall into a pit of self-pity, remorse and despair for something I have no control over to begin with or I can accept the circumstances for what they are and figure out how to get through them and overcome the adversity which lies before me .

     Blake is eight years old today and is clear to do just about any activity he likes. He still has yearly check-ups with his cardiologist at Children’s Mercy Hospital to make sure his coarctation repair is holding; however, Blake’s coarctation has begun to show signs of re-coarctation and he will more than likely require surgery again in the future, as well as a possible valve replacement in the long term future, but for now, I made two promises to Blake and myself when my son first went into congestive heart failure;

Blake and Dad at the Heartwalk 2009

1) Never ask for a day ahead of where I am right now – This means no statements like I cannot wait until you can walk or talk or when you’re 18 and can move out of the house, etc.)

2) Don’t ever take a single day for granted.

     In closing, some people, myself included, want to place the blame on God in these situations and while that was my initial reaction, we live in an imperfect world where we are sometimes the victims of chance. Matthew 5:45 says, “so that you may be sons of your Father who is in Heaven; for He causes His son to rise on the evil and the good, and sends rain on the just and the unjust” (NASB, 2000). This imperfect world does not discriminate and cannot discriminate if free will is to be maintained and even though I don’t always understand God’s plan, I accept what has happened to me. I choose to love and worship God through the most difficult of these circumstances, just as He has chosen to love us through good and evil, through our justices and injustices as Matthew 5:45 states. We must make the choice to use what is normally considered a tragedy and allow miracles to come forth in the form of triumph and healing, even if the healing is not always the healing we are asking for, sometimes the healing does not come in the form of physical healing and sometimes it does, but these moments are often superseded by a spiritual healing instead. Sometimes God has to heal our hearts.

My Wife, Blake and I on Vacation in New York 2010

 …..To Be Continued

Hello world!

Posted: November 23, 2010 in Uncategorized

     This is it! This is my adventure into the unknown. This is where I finally put the pen to the paper, or the stroke to the key in this case and share these thoughts with whoever might read them. This is a look into my mirror. This is me standing in front of the mirror and staring deep into my eyes. I have taken the time to question everything I have been and everything I wish to be. This is me sharing, questioning, calling out, raising awareness, providing testimony and so much more. This is me challenging my own thoughts and convictions and sharing my very own struggles through tragedy and triumph. This is a glimpse within my soul. So here I go, Will you follow me?