Sunday, September 21, 2014
One of "those days"...
As I have begun the process of obtaining a lawyer and filing for guardianship for David, as a medically fragile adult (with a 3 year old mind), a lot of emotions have surfaced. That moment that you realize instead of helping your child apply for colleges, you're applying for guardianship from the state. These are emotions us mommy’s tuck far away so we can survive. Emotions I feel guilty for even feeling in the first place, but they are real emotions none the less. The emotions are intense, my thoughts are deep, and often times I feel like only a mother in my same shoes can understand what "those days" feel like. Emotions that I believe would offer the world a better understanding of special needs community, if only more of us enduring the struggle could find the strength to share our perspective. This is what the world looks like from my end some days.
Our world is changing and I don't know how to communicate what the pressure of these changes is doing to me. My anxiety is high and my emotions are rampant, as I try to understand how I can embrace a new world of raising an adult child with disabilities. The system I've spent 18 years mastering will now be an entirely different system, different insurance companies, billing, new doctors, and educational plans. I am now faced with the daunting task of finding new providers and fighting for services while treading on unfamiliar territory. Replacing the doctors who know my child inside and out and treated him his whole life, doctors who know my son’s potential, his needs, and his brain.
Most days I embrace our life, but some days getting through it's rough. 362 days a year I feel so honored and fortunate for the life God chose us for, but even then it does not eliminate those couple days every year, those days that you know another year has gone by am still your child can not walk, he still in diapers, and he's 10 pounds heavier than the year before. When I look at him my heart breaks because as I mother it is my job to fix things and something I just can’t fix. I am helpless and those are the moments I have to cast my care upon the lord because my strength, even David’s strength is not enough.
Yesterday as I watched David struggle to adjust his lifeless legs so that he could move, and my heart immediately began to ache. I spend my days working with special little people. Believing in them and teaching them the tools they need to be successful in a world that is not made for people who are “different”. As I look at David I wonder if I am failing my own child. If I would have worked a little harder, just maybe things would be different. If only I would have known then what I know now, maybe I could have had a greater impact on his life. As David reaches adulthood I realize that, that small glimpse of hope, that little dream still inside of me that he might walk must die.
I cannot fix him, I cannot make him better, and I can't make his legs work. Most days I am able understand that this is all part of God’s perfect plan for our lives and I am assured that one day beyond this earth, God will grant me perfect understanding, but there are still those few days that I just can't help to wonder how things could have been, would have been different. As David turns 18 I realize that there are some dreams I have had for us that need to be put to rest, so that God can revive new dreams, bigger and better dreams, but this still requires me to grieve. It's not that I don't believe that God is able to make David’s body whole; it is just that he has already told me that's not part of his plan for us, and I trust God wholeheartedly. God’s plan for us, is to teach us how to love life anyway. God continues to teach us how to rise to the challenge, how to be strong and courageous and how to smile our way through things. God is teaching us how to teach the world how real he is, because without God’s mercy and grace this journey would be too difficult to endure!!!
So although I am struggling through “one of those days” that I must grieve what will never be, I know that I would not trade David just how he is for ANYTHING in this world!