This is the ongoing story of our five year old son's battle with stage 3 Rhabdomyosarcoma in his abdomen. He recently earned his wings and entered the kingdom of heaven. He is full and surrounded by God's glory. He is our little hero and an amazing example of the adversity that children can overcome. God is our Healer, now that medicine is done, GOD will begin. All the glory belongs..
I stopped writing. I am not %100 sure why. But I think perhaps it is because nothing changed, or maybe things got worse. And instead of writing being cathartic I became aware of how my insides sounded to others. I never did start writing for others, but it morphed into that and then somehow, I could not write for myself anymore. So here we are, close to six years later and it still could have been this evening. I can still smell the hospital, see the tears running down our nurse’s face. I can hear the music playing on Chris phone and I remember the sweatshirt my brother was wearing while I watched him take the Star Wars decals off the hospital wall for the last time. I see the tear roll down his face and his voice catch when he asked me if he could keep one of Christian’s toys. I see the darkness of the hallway and the morgue gurney waiting to take Christian away. I can feel how tight his hand was around mine when Chris picked him up from me for the last time. I can see Nanny and Papa hug and shed tears together, I remember the look of pity on the nurse’s face when I said good bye for the last time. I see the metal hospital carts full of Christians things being pushed out to the car and I can still smell the indoor parking lot and the sound the overhead doors make when they open. Everything about that day, and many before it, are burned in my brain. They will never go away. I am haunted by these days and no amount of therapy, sleeping pills, or distraction makes quiet.
The reality of life that we live now is sad because it’s a secret. We don’t tell because we know most people would not understand. I mean come on. Six years?! The most dreaded question in mine and Chris’ day, “how are you doing?” Do we tell the truth? Do you have time to sit here and I will cry for a bit?
Grief morphed into depression and depression morphed into something I can’t explain. And now, just now, we begin the task of pulling ourselves out of this hole. I read a study that was conducted by researchers on marriage after the death of a child. They likened it to our family being like a ball of string. And when a child dies, the whole ball must be unraveled, and that string removed. Then somehow, if possible, the ball of string must be wound back up again. The trouble is it was never meant to be unwound. There are no directions as to how to put it back together and somehow no matter how you do it, it just doesn’t seem right. The ball is never the same without that string. It still functions as a ball of string, it looks like a ball of string, but each strand that used to come into contact with that missing string feels unbalanced and out of sync. They may not even know why they don’t feel right, but something is missing. And the strings can only be wound back together if they ready. For many families the strings are never able to be a ball again. When Christian left our ball of string the depth and complexity of each maneuver his string took touched so many different parts of our family that I know it will take a lifetime to repair. But this I am sure of. Our strings will become a ball again. Even if it means we have to unravel time after time to get it right. Each string must do their own work to discoverer how they fit in the ball, how they will function when they can no longer depending on that missing string.
This is the new journey to make our family complete again. I have no idea what it looks like. I have no idea where it will take us. I know that hearts can be mended and even in our grief God orchestrates our days. He knows what is coming and His plans are great. This blog is going to morph like our family. I have no new pictures of Christian to post. I have no updates on hospital, chemo, counts, blood transfusions, surgeries, recovery and NG tubes. But we still have a whole family. A beautiful family. Like a caterpillar we will transform and become something beautiful after the struggle. Welcome to our messy ball of string.