So I've been reading this book and IT IS OUR LIFE! It speaks to me on so many levels. A sweet child with an incurable disease, in out of potent treatments, with horrible side effects and numerous hospital and doctor visits all with the goal of one thing, quality of life.
Our life exactly with Camden. It touches how it affects the whole family, their jobs, their friends and the siblings. It shows how different our lives become and how differently we learn to live them while focusing on way bigger issues than the everyday norm, yet how it gives them immense joy to see their child have a normal childlike day every once in a while.
Then a tragic accident happens which results in a miracle from God. I wasn't sure when I decided to read this book how I'd take or react to that. A year ago reading this I know I'd say, Lord why this child? Why does this one get to live fully without a life of disease and pain? Why was this one spared? Why not mine? But over this two year long journey of being told this and that, being pulled here and there, hearing and experiencing things no parent should, my strength, faith and hope has reached a place I then didn't think fathomable.
Also a year ago we were for a few days given news of the possibility of Camden had not one, but TWO horrible diseases. Both incurable, one with available but harsh treatments that would consume his life. The second with nothing. It was put aside but never proved and thought for various reason to be just one.
Today, however, we are back there again and we've seen the proof. Proof of one autoimmune disease medically quieted but the MRIs showing us a different disease is continuing to waste my son away. We are now at a certainty that an unknown Muscular Dystrophy is there along with his SRP Polymyositis. It's taking his neck muscles now and eating more at his thighs and we honestly don't want to think about where else. We know it has no available treatments and there isn't anything we can do or change. A year ago, I wouldn't be taking this well, and not to say I'm not heart broken, but now I say, ok Lord, we will face this with you.
God has plans we can't begin to understand. I think he allowed Camden's second disease to be made clear to us now because he knew we were stronger as a whole. I believe God knows our hearts. I don't want this for my son but I have no doubt in my mind God is faithful to his children and loves them.
In this book, it tells of a miracle. That the precious young girl filled with disease experienced a tragic accident, saw God and he gave her back to her parents made completely new.
Do I believe that can happen? Two years ago I'd say no but today I'll say yes. If we don't get it, then I'll pray another baby does, and because someone can, then hope is restored to so many. Even when I thought hope was unattainable it presented itself to me over and over again and each time I clung to it and persevered because that is what my son deserves. I'll never let go of that hope with how ever many hurdles life throws at my son or my family.
Hope is an anchor and without it we will be lost at sea.