Everyday I feel like I am constantly "on watch" with Baylor. I watch how he walks that particular day, I watch and monitor how tired he gets, I watch to see if he falls more or less than the previous day, I watch his to see if there is stiffness in his arm, I watch to see if he can take the steps of a curve or not, I watch how he eats and the list goes on. I am constantly worrying about my little guy...more than any of my other children. It is an exhausting job and one that is probably not even necessary but I can't help it. Baylor has a disability and even though it is considered mild, it affects every single aspect of his life and mine as well.
I once read an article that said even though we can be thrilled our child's disability is mild, the mildness comes with a whole new set of struggles and worries. Since the disability is somewhat masked by a normal output, people fail to realize the struggles, people fail to see the daily hardships that go along with being somewhat typical. For instance, if someone is in a wheelchair, it is obvious that their legs/muscles have a problem. The disability is right there in the open. But for someone like Baylor, he looks normal to the average eye and most people probably wouldn't even be able to tell he has Cerebral Palsy. What they don't see is the endless hours of PT that it takes to keep his legs functioning, they don't see the debilitating fatigue he faces after just an hour or two of normal activity, or the extra effort it takes just to do normal things like eating and chewing. It's difficult as his parents because we see him want to be like his siblings and at this early age he doesn't really know his limitations, but the older he gets the more the disability will separate him from his peers. The older he gets the harder it will be for his bones and muscles to keep up. He will continue to decline and face constant struggles within his own body. As scared as I am for this surgery, I am more scared of watching him struggle...no parent wants to stand by and watch their child deteriorate...and for that reason alone we will move forward with this surgery.
It will not be an easy surgery...it will be an intense shock to Baylor's little body. It will require at least 6 months to a year of extremely hard work with daily therapy and still after that a lifetime of weekly therapy to maintain his gains. He will face weakness and fatigue unlike anything he has known before. However, it is our hope that he can build real muscle and strength that will keep him mobile for the rest of his life. Something that would be in question if we just left things the way they are now. Opening his spinal cord and severing nerves is extreme. We are well aware that this seems like a lot for someone who is so functional, but the future for Baylor is what is at stake. We can't stand by and let him have to continue to fight against his own spasticity and tightness. We can't let this disease continue to wreak havoc on his muscles and joints.
In my mind I know we have to do this surgery, but in my heart I am terrified. Completely and utterly petrified to hand over my angel boy and let them perform a risky surgery. Maybe it has been done on 4000 children with CP, but this is my boy...my little guy, my barely 24 pound little baby! I am having to hand him over and allow them to work on his spinal cord for 3 hours. I picture him laying face down, exposed and vulnerable and I just can't handle it. My heart can't go there. It's just too much. The thought totally sends me into a spiral. I have had more panic attacks and breakdowns this past year than ever before. I have to stop and refocus my attention to the great things that Baylor will accomplish through this and find the good in the journey. I have to instead change my mindset and proclaim that this will only make us all stronger. I share those vulnerable moments not for sympathy, but to show that this life is not perfect and although our family puts on a brave face and we may look like we have it all together but honestly we don't....we struggle....we fight...we cry...we breakdown and we have our un-Christian like meltdowns...but we do get back up and keep going. If nothing else Baylor has taught us that we have to keep going. We have to keep putting one foot in front of the other. We put our trust in the Lord and know that ultimately...no matter what He loves Baylor and He will do what is best for him. Relinquishing control has never come easy for me and this is probably my hardest test to date.
So that is where we are...one month from today we will embark on the SDR journey and pray that we see wonderful results. Throughout all my doubts, fears and uncertainties, the one thing that I have NEVER once questioned was Baylor's ability to get through this surgery. I know without a doubt if anyone can overcome the obstacles... it will be him. He is by far the strongest little person I have ever met and I know he will work harder than anyone to see results. He will fight day in and day out with a huge smile on his face. He will charm every nurse, doctor and therapist with his positive outlook and sweet demeanor. He will make us laugh at every tough stage. He is Baylor BRAVE and I am so thankful I get to witness first hand what a true hero looks like.
"And the Lord, He is the One who goes before you. He will be with you, He will not leave you nor forsake you; do not fear nor be dismayed.”
