I don't often go through the days thinking about the beginning of this journey with Wade. Every now and again, I'll see a picture or smell a scent that will jog my memory and make me stop for a minute. There are certain things that will immediately take me back to the hospital. The sanitizing soap they used in the NICU is a very powerful trigger. When I smell it, my stomach automatically flips. I still can't drive downtown around Cook Children's without my heart pumping just a little bit faster. But for the most part, I focus on the present and all the strides Wade has made. However, the past couple of weeks have caused me to relive some of those very terrifying and heartbreaking moments.
Some friends/neighbors of ours had a beautiful baby boy on January 19. Cooper was having some issues with feeding and twitching, so he was admitted to the NICU. The past three weeks have been a roller coaster of emotions for this family. There have been some answers, wrong answers, no answers, partial answers, and mainly just confusion. There have been tests that have come back positive, some negative, some borderline. Again, just confusion. Yes it's genetic. No it's not genetic. It might be genetic. Then, the worst news ever was delivered. The parents were told that if Cooper didn't get better soon, he would die. Although, if he did get better, his life would be short. As I read that text, I felt as if I had been punched in the gut. From what I understood to this point was that Cooper had hypotonia so severe that it would eventually make breathing too difficult. I told Curtis that I just couldn't even imagine...
Then, I stopped. Yes, I CAN imagine. We've been there, done that. We've walked in their shoes. Wade has cerebral palsy which fluctuates between high and low tone. Which is hyper and hypotonia. How can I even say that I can't imagine? The only reason I have is God. By the grace of God, He took the most tragic and horrific thing that has ever happened to me and turned it into the most wonderful blessing. In the process, He healed the pain, and He has helped me "forget" the sadness, loneliness, and fear. It took awhile, and I didn't even realize how much I had "forgotten" until I said, "I can't even imagine what they're going through."
I remember laying on the operating table wondering how I was going to go home without a baby. How was I going to tell everyone that I had been pregnant, but I didn't have a baby to show for it? I remember the sound of the resuscitator as they tried desperately to get Wade to breath. I remember the chaplain coming to talk to me, and I didn't want to see him because in the movies, when the chaplain comes, it's all over. I remember the hospital making an exception and letting the flight crew bring Wade in so I could at least see him before they boarded the helicopter. I remember the confusion in my OB's face when he told me he just didn't understand what had happened. I remember the staff not wanting to make eye contact with me. I remember my heart stopping whenever Curtis' phone would ring when we weren't at the hospital. I was so afraid it was going to be "that call"; the one where they told us he was gone. I remember being scared to enter the NICU because I was terrified that Wade wouldn't be in his bed. I remember praying that the MRI wouldn't show any brain damage but knowing in my heart that there was. I remember not being able to cry the moment the doctor told us the results because I did already know. I remember the neurologist telling us that Wade would never walk or talk and that he'd be in a wheelchair for the rest of his life. Then, one phone call changed it all. I remember vividly sitting on the ottoman in my living room, and Dr. Nedrelow called. He had been off for a few days. The first thing he said was, "I have one word for you. WOW! This is NOT the same baby I left a few days ago." In that moment, I knew that everything would be okay. Not what I had imagined, but there was finally a light at the end of the tunnel.
I've been praying for baby Cooper to have his "WOW" moment. Thank God there was an absolutely amazing update on Sunday. When Chris and Alison arrived at the hospital, Cooper was sitting in a bouncy seat awake. He had also woken during the middle of the night and seemed hungry. Some of his levels that had been high were coming down, and the sonogram of his diaphragm was normal!!!! At this point, it looks as if some of his "episodes" have been caused by aspiration from bottle feeds. The doctors are stumped. So, in my eyes, Cooper has had his "WOW" moment!!!! Please pray that Cooper continues to amaze everyone and fights to prove the doctors wrong. God is doing wondrous things with this small and fragile life. It just so happens that I came across this verse yesterday:
His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?"
"Neither this man nor his parents sinned," said Jesus, "but this happened so that the works of God might be displayed in him." John 9:2-3
None of us know the end of this story. God has a plan. But I pray with all my heart that God allows Cooper to continue healing so that he can grow up being a testament to Him. I also pray that the painful memories of this tragic situation begin to turn into blessings for this amazing and faithful family. I pray that they are able to see the light at the end of the tunnel. Please keep this family and baby Cooper in your thoughts and prayers.
The following song came on the radio on one of our trips back from Cooks. It became our theme song for our journey into the unknown with Wade. Hopefully it will offer some peace to Chris and Alison as well.
*Disclaimer: I did get permission from Alison to talk about Cooper's struggles. I didn't want to go into too much detail because it's not my story to share. But, I wanted to write about him so that others can pray for this precious baby. And of course, the story hits a little close to home. I wake up in the middle of the night thinking about Cooper so I thought this might serve as an outlet for my "forgotten" emotions as well.
Life as an adult with cerebral palsy: a guest post
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