I believe I speak for Mommies everywhere when I say that from the moment we find out we are pregnant, we immediately begin to envision our child. Girl or boy? Blue eyes or brown? Towhead or a head full of dark hair? And then, if we choose to find out the gender, our imagination goes into overdrive! Prom dresses and wedding dresses or maybe football uniforms and baseball uniforms. Ballet slippers and tutus or shotguns and fishing poles. Skinned knees, braces, first dates, first broken hearts. As we waddle around and rub our ever growing bellies, we dream and we plan. We picture the first day of school, high school graduation, and going off to college. As we feel those first tiny little kicks, we are imagining all the places those little feet will go. All the adventures those little feet will run to. Oh yes, we see our child as we want him or her to be: perfect, beautiful, healthy, happy, talented, successful...So what happens when your reality doesn't quite match all those hopes and dreams? What do you do when the child you have will never be the child you believed he or she would be? What then?
As Cooper recovered from his surgery and his physical issues stabilized, it became all the more apparent that his cognitive function was no where near where it ought to be. We had hoped that as he got stronger physically, he would catch up on his milestones: sitting up, learning to stand and walk, speaking. None of that happened. He would not walk at all, not even with assistance. His eye contact was all but gone. He seemed not really to know who we were. He showed no recognition of anyone, not even me and Scott. He had little to no facial expressions. It was frightening and disturbing to say the least.
We were concerned he might be deaf. On the 4th of July right before his 1st birthday, we were preparing to set off fireworks. I had Cooper in my arms and had stepped back from the crowd, prepared to take him inside. I was afraid all the loud noise would upset him. When the first big bang sounded, Cooper did not react at all. He didn't cry, he didn't even startle. One after another, the fireworks went off and still no reaction from Cooper. We shouted his name, clapped our hands, blew whistles right behind him. Nothing. Unless he could see you, he gave no indication that he could hear you. Alarmed, I contacted his pediatrician who quickly got us set up to see an ear, nose, and throat specialist. Cooper was seen and the first test in the office was inconclusive. His cognitive function was so low that he could not respond consistently to the sounds they were making. A sedated ABR (auditory brainstem response) test was done and found to be completely normal. I was thankful but confused. How could that be? He was too little to willfully ignore people and sounds. It just didn't make any sense.
Cooper had repeatedly suffered with ear infections. By the time he was 14 months old he had been treated for four. That was more than enough to make him a candidate for pressure equalization tube placement. So, for the fifth time, our tiny little guy was sedated for a procedure. It was, without a doubt, the worst! I remember the nurse asking us if we had ever seen Cooper have a "come apart".
"Oh no," I told him. "Cooper never cries." The nurse had tried to warn me, but I was not prepared to see my sweet little boy hysterical and inconsolable. He cried for hours, until the hospital staff gently suggested we take him home. Maybe he would do better once he was in familiar surroundings? We were afraid to put him in the car! We had over an hour drive and we could not calm him down. We finally got through that day, but something nagged at me. We couldn't soothe him. They said it was the quick sedation, but I thought it was more than that. Very soon I would realize just how right I was.
After the incident in the hospital, we began to see Cooper have these terrible screaming fits. When it happened, it would seem as if he were in severe pain. On Thanksgiving that year, we had to take turns walking around with him in the front yard while everyone else enjoyed their turkey dinner-thank goodness it was unseasonably warm! Christmas at my sister's house turned into a nightmare when Cooper began to scream so loud and so hard, I was convinced something was horribly wrong and we would be making a trip to the ER. After what seemed like hours of everyone in the house trying to calm him down, we rushed him to the car, buckled him in his car seat, and within minutes he was completely calm and promptly went sound asleep. I was flabbergasted. We soon realized that there were only three places Cooper was comfortable: our house, my mother's house (he had been kept by her since he was 6 weeks old, so her house was like a second home), and his car seat. Anywhere else and he would scream like he was dying. I remember so clearly taking him to see his pediatrician during that time. Within minutes after getting him out of the car and entering the doctor's office, Cooper started howling. Neither Scott nor I could do anything to calm him down. By the time Dr. Greg walked into the examining room I was in tears. I told him, "I just want to be able to help him, but it's like he doesn't know who I am. You have just as much of a chance of calming him down as we do." Dr. Greg didn't know what to tell me. Eventually this would all stop, almost as quickly as it started. But during that time, I would begin to feel a deep sense of hopelessness. This wasn't right, a mother not being able to console her child. He didn't want me. I had always been able to sing to Cole and calm him right down, but my voice was just noise to Cooper. No one could help me understand, so I believed it had to be my fault.
I will never forget the day the seizures started. Cooper was 21 months old. I was out of town for work, about 2 hours drive from home. I received a call from my house. My mother was hysterical: Cooper had had a seizure. 911 had been called. I drove like a crazy person to get to him. Both my brother and I had febrile seizures when we were little, so I thought maybe he was sick and had spiked a fever. Cooper didn't have a fever, he didn't even have a cold. The ER doctor at Children's didn't seem too concerned. Cooper was fine by the time we got there. They did a CT scan, which was normal, scheduled us for a follow up appointment with the neurologist and an EEG. The EEG would show a "true seizure disorder". Bilateral, severe seizure activity. He would have his second major seizure just 4 days later. His first of several seizure medications was started. I was stunned and scared. He would be on seizure medicine for the rest of his life.
We were then sent back to the geneticist for more testing. Cooper's seizures were another clue. They now would test him for all the different genetic disorders that included seizures. All came back normal. Next they would try a microarray analysis. This was new: it tested the actual DNA instead of individual chromosomes. We were sure that if Cooper really had a genetic disorder, this test would find the cause. The process was long and expensive. We waited weeks to get the results. They came back normal. I was soooo frustrated. Why could no one tell me what was wrong with my child?!? After we received these results, I was told that 30% of children like Cooper were never diagnosed. There are literally hundreds of different known genetic syndrome and innumerable unknown. I was told that it didn't matter what the "name" of the syndrome was since there is no cure for such things. Cooper's treatment and care would be the same with or without an official diagnosis. I absolutely could not accept that. If my son did in fact have something wrong with him that would prevent him from ever growing up to be a normal functioning person, I wanted to know exactly what it was. I wanted to know how and why. I needed to know. Because deep down, I believed it was my fault. That somehow, I had caused it. Nothing but an actual medical diagnosis along with the cause and a positive prognosis was going to resolve my feelings of guilt.
Ironically, the day when I really came apart was after, of all things, an eye exam. Cooper was holding his head straight back all the time. One of his eyes sometimes turned in and we had noticed that his eyes sometimes rapidly jerked back and forth. We learned that this is called Nystagmus and the eye crossing is called Strabismus. He could not tell us why exactly Cooper was holding his head back, whether for balance issues or vision. What the doctor did tell us that day, after a long and thorough examination, was that Cooper was legally blind. He did show signs of some vision, but very little. He could give him glasses to help correct the farsightedness that he had, but the majority of Cooper's issue was neurological and could not be treated. Just one more thing to add to the growing list of things that was wrong with our child. And still no answers why.
I would like to be able to tell you that I handled it with grace and poise. That I walked out of that office and turned immediately to my faith, to scripture, to prayer. What I did was exactly the opposite. I got in the car without a word. I turned my face to look out the window as hot, angry tears ran down my cheeks. Scott said something like, "We've just got to pray..." I turned on him, cut him off mid sentence and said, "You pray! I'm done praying! God did this! He's BLIND!" All I could think was "WHY?!? Why would you give me this child?!? I am not equipped to take care of this child! I cannot handle this! Why are you doing this to me?!?"
It would be many long months before I could let go of my anger towards God. I am so ashamed to admit it, but that is the truth. I rebelled against him, doubted his love, his very existence during that time. A lesser god would have struck me dead. I raged at him, refused to speak to him, gritted my teeth at the mere mention of his name. I was angry that my dreams for my son would never come true: He would never play baseball or hunt with his dad. He would never go to school like normal children. He would never go to prom, drive a car, get a job, go to college. He would never get married. One by one, my mind explored all the things he would never get to do, that I would never get to see him do. My dreams did not match my reality. I was mourning the loss of the son that I thought I had given birth to but now realized I never had.
I am thankful that we serve a long suffering, patient, merciful God. I did not deserve it, but he never left me. Not for one minute. Even as I railed against him, he was giving me the strength each day to endure. As I refused to pray to him, others were praying on my behalf. I can't explain the ways of the Lord. His ways are not our ways and his thoughts are not our thoughts. Isaiah 30:18 says, "Yet the LORD longs to be gracious to you; therefore he will rise up to show you compassion". Our God is not a mean, cruel, manipulative God. And in time I would realize that my Cooper was and is the greatest gift God has ever given me.
Cooper at 12 to 24 months:
This one is Christmas 2005. Cooper is 16 months old here. You can see him combat crawling and his eyes are slightly crossed. But still the absolute cutest little guy ever!!
2nd birthday
Hello! I'm Heather and I have a question about your blog! My email is LifesABanquet1(at)gmail.com
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