Monday, February 3, 2014

Ignorance is Bliss

Three weeks ago I was in a doctor's office with my son, waiting to receive results from an MRI that he had done the previous week. I never saw it coming, the "punch in the gut" news that fell on my ears. The news that told me my son's hip bones were dying due to a lack of blood supply that is a result of 29 years of steroid use. These same steroids helped save my son's life 29  years ago, as they are a mandatory drug that he has to take to keep the kidney that was transplanted into his body when he was 16 months old. Ironic, wouldn't you say?

Derek was the youngest kidney transplant recipient that the University of Miami had performed back in 1985. I was an almost perfect match for him, so they removed my right kidney and put it into his tiny body. He came to life that day, and has never looked back.

Derek is a force to be reckoned with. He is full of life, full of love, and the happiest person I have ever known. He loves with every bit of his being, and experiences life like someone who knows what it's like to be given a second chance at living. He just turned 30 in November, but he will always be my special needs "eternal toddler", acting like a 4 year old most of the time.

Derek is also deaf, and I grieved when he was diagnosed at 2 years old. Grieved because he would never hear my voice. Because he would never hear beautiful things like the birds singing, music, laughter, and a gazillion other things. But I believe one of the main reasons Derek has lived these 30 years is BECAUSE he never heard the negativity associated with his condition. He didn't hear the doctors say he was not expected to live, not expected to walk, not expected to....countless other things. God had bigger plans for Derek, and the doctors were proved wrong.

I have given this much thought since hearing the current diagnosis. Derek doesn't  know what's coming. I wish I didn't. Ignorance IS bliss. He just knows he is in pain, but doesn't know why. Doesn't know that at some point his hips will just disintegrate. Doesn't know he isn't a candidate for a hip replacement. Doesn't know the only thing we can do is treat the symptoms, treat the pain. Doesn't know, at some point, he will not be ambulatory any more. Derek just keeps plowing through the pain. Living life the only way he knows how. How thankful I am for his not knowing.

I know so many things after living with Derek these 30 years. I know how precious life is. I know no one knows the future. I know God has a plan. I also know I need to trust God. I know I shouldn't be looking at all the "what if's". I know I need the strength only He can provide because I certainly can't do this on my own. I know all these things.....but getting from here to there, well, I haven't done that yet. It's a journey, another storm to weather; and of all the storms I've made it through, I'm finding this one pretty tough.What I DON'T know is how to face this diagnosis with just a plan of treating the symptoms. I don't know how to face watching my son suffer so much pain. This mother's heart might surely break into pieces watching this happen, watching the life that he knows fade away.

God doesn't spare us from the storms; but He does promise He will be with us in and through them. He has never let me down, nor will He. I'm trying to move forward, to get stronger.  I'm diving into my Bible, into my daily devotion book that has helped me through countless other impossible situations by leading me to the source of strength, God. The tears come without a moment's notice, lots of them; sometimes I feel like I can't even breathe.

Just yesterday, I asked my dear sweet husband, "and what do you do when you just can't stand another minute?" His answer: "Fall to your knees."

I think I may need to get some knee pads.