It was one year ago tomorrow that Brady's saga really all began. December 23, 2008 was the day we were told that there was something wrong with our sweet boy. I thought it important to tell the story of that day. Mostly because I didn't start blogging until January 14, so I never wrote it all down. I want Brady to know about that day, how our hearts were broken, and to understand how God was working out the details each step of the way.
December 23, 2008
It was 2 days before Christmas and our house was busy! The triplets were 1 1/2 and Allison was just 6 weeks old. It also happened to be my 30th birthday. We had made an appointment 2 months prior to see a developmental pediatrician at Strong Hospital. Despite being told my 2 physical therapists and even our own pediatrician that Brady was probably just "behind", we both knew something was wrong.
Brady had done everything first. He was the first to come home from the NICU, first to sleep through the night, first to sit up and to crawl...but then the firsts stopped. Eli and Cara caught up to him and then surpassed him. At 18 months of age he wasn't walking, and in fact seemed to be regressing. We had sought out early intervention for him 2 times, and he finally qualified when he reached an age at which the gap between his age and his motor skills was big enough. Physical therapy wasn't going well. Brady was unhappy and just seemed to be falling further behind. Our boy that used to pull to stand rather quickly began to struggle to get his legs under his body.
I don't remember too much about what I was thinking on our way to the appointment. Looking back I was totally oblivious to what "could" be wrong. I thoroughly thought the doctor would just tell us that Brady was a low tone kid, maybe because he was born 6 weeks early. The doctor listened to us describe Brady's history, and then began evaluating his reflexes. This is something Matt had done several times and had detected an irregular reflex. The doctor asked to see him walk, Brady reluctantly held our arms and attempted walking. I remember the doctor asking Matt and I what thoughts came to mind when we heard the term, "Cerebral palsy." I instantly remember that horrible flushed, hot, sick feeling you get when you hear words that will change your life forever. I remember answering him by saying, "It's a life long condition, you don't get better, you can't physically do everything a typical person can." He shook his head in agreement and then went on to tell us that Brady had spastic diplegia, a form of cerebral palsy that affects both legs. The next few minutes were a blur for me, I remember hearing that this problem probably occurred at birth, due to prematurity and small brain bleeds that often accompany being born early.
I hated that he was telling me that this was because Brady was a triplet born early. In my head, I argued with him, "No, I carried those babies to 34 weeks. All the doctors told us that we were out of the woods for those types of things." I was devastated that this had to do with my pregnancy and carried a lot of guilt out of that office.
He told us that Brady would need to have an MRI of the brain to confirm evidence of a brain bleed. The scan wouldn't be for another month. I think at some point I interrupted him and blurted out, "So, will Brady ever play t-ball?" It sounded like a stupid question, t-ball? My son was just diagnosed with a permanent, life long condition and all I could think about was t-ball? I asked this question because I knew at the moment, in that room, my husband's heart was breaking. This was his Brady boy, his little clone. I knew that all of Matt's hopes and dreams for Brady were now in limbo and that with a little bit of hope from this doctor that yes, he would play t-ball, that Matt would be okay. I'll never forget when the doctor looked at me and answered, "He won't be able to do everything, but he will find plenty he can do." After that heart-breaking response, he went on to tell us that he was confident Brady would walk, but when and how well would remain to be seen.
Matt and I didn't talk much on the way home. We cried and cried, we sat in silence. I was overwhelmed to think that I had triplets, a newborn, and now a disabled child. How would God give me the strength to handle this all? Why was God piling this all on me? Didn't He remember that I was the kind of person who could find herself depressed and anxious when life handed out too much?
He knew all of that. He also knew that He was preparing me for the biggest battle of my life. This terrible day really brought Matt and I together. In the month that followed, leading up to the scan, Matt and I scoured the internet during every waking moment. Every night he would be on the computer upstairs, while I was on the laptop downstairs, reading every article, journal, and blog we could about CP. We read, we took notes, we discussed, and a seed of doubt started to grow. We both started to question this doctor's diagnosis, the pieces just didn't fit. CP is a condition from birth, Brady had developed normally until about 13 months. A regression of skills led us to believe that Brady wasn't born with this, something had happened at some point. We didn't know what it was, but I started to really believe that the doctor should scan Brady's back just to check things out. I even remember saying to Matt, "Honey, people have all sorts of tumors in weird places that can cause all kind of problems." We frequently watched Mystery Diagnosis, and I was a bit of a hypochondriac after learning about all of the diseases out there! I told him I was going to call the doctor and insist on a spinal scan.
When I did call, the receptionist questioned me and said, "What makes you think this needs to be done? You aren't the doctor!" I called again and again. She finally told me that if our insurance would cover it, then they would do it. Our insurance denied the scan. Luckily it was the beginning of January, and open enrollment for insurance plans was just starting. Matt had to switch plans at work, and once we did, we resubmitted our request and then scan was approved immediately. This is one of those times in my life that I know God intervened on Brady's behalf. Without this scan, we never would have known that Brady had cancer. The tumor would have paralyzed him without us even knowing it was there, and most likely the Neuroblastoma would have spread beyond a point of survival.
You all know the rest of the story. If perhaps you are new to our blog, you can go back and start reading at January 21, 2009.
Christmas was a very sad time last year. We had broken hearts, a crippled son, and our hope was fading.
What a different feeling this year. My sister arrives tomorrow, the Christmas season will be in full swing, and my heart is full of so much joy and hope. This isn't just because Brady is healthy this year, but because of all that God has shown me in the year 2008. He has taken my broken heart and restored it. He has taken our sorrow and shown us a greater purpose. He has taken our critically sick son and given him a hope for a full life! All of this from the God that was born in a simple manger so long ago. It is my hope that all who read our story will come to know the hope and joy that can only be found through Jesus.
Thanks for allowing me to share that story with you all tonight. I'm sure I'll be checking in with some great pictures in the next few days.
From our very merry family to yours, Merry Christmas one and all!