I have sat down to write out my feelings numerous times over the last few weeks only to have to close my computer... I just wasn't ready to acknowledge all the feelings I've had. Feelings of grief, sadness, anger, confusion, and even guilt. Mixed in with those feelings are feelings of great appreciation, relief and even joy because I realize how much worse things could have been. As the shock begins to subside a little, I am left with a fierce determination. Determination to see that my boy succeeds in all areas of life. Determination to not let despair take over or swallow me. Determination to give Baylor all the tools he needs. Let me back up a little and recap these last few weeks.
Baylor had an extremely traumatic birth. Even more traumatic than we have really acknowledged. He was struggling in my belly for a while and in those last few minutes in utero, I would even begin to say he was in peril. I hate to admit it, but I now believe he was just minutes away from death. I have no doubt if we would have waited until my appointment two days later, we would have found an unresponsive baby.
Those first few weeks in the NICU, we knew he had been in distress and that it had taken a toll on his body. His lungs, liver, heart and even brain showed signs of him struggling to breath. We breathed sighs of relief as one by one his organs began to heal and show signs of strengthening. Baylor came home after about a month in the NICU and he seemed to be doing great.
I distinctly remember when Baylor was about 6 months old, talking to my mom on the phone and telling her that Baylor was just so different from my other two. I understood that he was a preemie and preemies develop and respond differently from term babies, but it was more than that. It was a mother's intuition that something just wasn't right. I knew deep down, that something was off.
At 7 months old, I visited a friend because Baylor was barely moving. He wouldn't roll, sit up or even attempt to do much other than lay or sit up assisted. He would tire out very quickly and typically would sleep 5-6 hours a day and all night. My friend, an occupational therapist, was really the first person to agree with me that this wasn't just a preemie issue. We talked with our pediatrician and she agreed some therapy would be beneficial. At about 8 months old, Baylor began receiving Occupational and Physical Therapy. He did wonderful and really began to thrive. He began to sit up, roll to one side, and eventually even crawl. I admit, despite these progressions, I still felt that nagging in my heart that he still wasn't catching up. Baylor favors his left side greatly and it is very obvious that his right side is significantly weaker than his left. I know the worst thing you can do is "google" symptoms, but I did and I quickly became convinced Baylor had cerebral palsy. I knew it in my heart. I shared my thoughts with very few people because I never wanted to downplay his progress or be a "debby downer."
After Baylor's first birthday, we were finally able to get his vomiting and reflux under control and we had a diagnosis on his food allergies. I briefly felt like that would make a difference in his development but much to my dismay, I felt the gap just widening.
Once Baylor's PT started really emphasizing her concern for his stiffness, odd feet and toes, and arm posturing, we decided to go back to the neurologist. In the weeks leading up to the appointment, I was filled with anxiety. I wanted so bad to have an answer, but I also was terrified of what it could be. The day of his appointment, I had a peace. I felt very calm and I just knew that God had led us to this neurologist and she would provide answers for us. She was so sweet and kind. She encouraged us and gave us hope. While being very uplifting, she also got right to the point. She didn't sugar coat anything. Baylor has Cerebral Palsy. She believes he suffered a stroke right before birth or shortly after. Hearing those words...it felt like a dream. Walking out of that office, I just cried tears of sadness, but also tears of relief. It's been a year a a half of tests, doctors, therapies, and wondering. Finally an answer. But one that devastated my soul.
How do you process that your baby has a brain injury that is affecting his muscles and that he will suffer with this for the rest of his life? How do you process that he will always have to work three times as hard as every other kid to just do normal things? How do you process that your child will never be 100 percent? How do you process that you have a child with a disability? How do you process that Baylor might not achieve certain things that my other children will be able to? How? How? Put aside the hows and I was left with whys? Why God did this happen? Why didn't we get him out quicker? Why our family? Why my son? The grief hit me like a tidal wave, but with that grief there was still peace...still hope. I never felt taken under completely by the storm. Throughout Baylor's diagnosis, there were glimmers of hope...rays of sunshine.
Here we are a few weeks out from the diagnosis, and while we are still in the grieving stages, we do have such tremendous hope. Hope that our sweet Baylor Jace will walk and walk without assistance. We have hope that Baylor will speak and speak fluently. Hope that Baylor will move and move independently. We have hope that Baylor will be just as smart or smarter than his siblings. We have hope that he will use this disability as a platform to point others to amazing things. Amazing things like fierce determination, the will to never give up, proof of hard work and diligence, a spirit of joy and happiness and above all else the fact that our God is a good Father and He doesn't make mistakes.
Baylor will never know any other way. This journey is his and I have no doubt that he will walk it with dignity and grace. This is his testimony and I pray that he uses it in a mighty way. Baylor radiates joy...through pain and struggles, he never lets on that things are hard. He fights with everything in him and he does it with a huge smile on his face. There will be no limitation that Baylor can't fight through...no obstacle that he won't be able to tackle...and no skill that he won't master. I have no doubt. My boy will soar. In the process of finding his wings, he will minister and bless all those around him. He's already changed so many lives...and I firmly believe he will teach everyone around him lifelong lessons. He's such a fighter...he has been fighting to survive and thrive since before he was born and never does he let on that it's a tough road.
So where do we go from here? We pick up our grief, tuck it away in a place that is never too far away to cause us to forget where we've come from, but we move ahead. We provide Baylor with the best of the best to give him all the tools he needs to succeed. We continue to pray over him on a daily basis and bind the enemy from pulling us down. We treat Baylor like our other children and require him to obey and be disciplined in all areas of life. We laugh with him, tickle him, hug him, rock him, and savor each and every moment we have with him. We thank God everyday for his blessings of protection and the gift of giving Baylor to our family. We continue to research new procedures and techniques for dealing with Cerebral Palsy, but never doubt the healing that comes from God alone. We take one day at a time and allow Baylor to progress at his own speed. We never let his disability become a label, but rather a motivator for greatness. We love and embrace each day that we have with Baylor because we were so close to a lifetime without him. Above all we cling to hope....God has never once left our side and through it all we are stronger than before.
"My hope is built on nothing less...than Jesus' blood and righteousness,
I dare not trust the sweetest frame, but wholly trust in Jesus name.
Christ alone, Cornerstone. The weak made strong, in the Savior's love.
Through the storm, He is Lord, Lord of All."
This sweet boy reminds me each day to be thankful. We have so so much to give thanks for.
To God be the Glory...for all He has done.
