I went in to work early this morning and left at noon so I could be home with Ryan for the afternoon as Travis was gone. He slept all day long. Literally all day. He hardly even changed his position on the couch. His poor little body is completely exhausted, and he obviously needs the rest. I just pray his body is healing while he sleeps. This evening, with trepidation, I gave him the bolus to clear out his bowels. After about an hour or so, he started to cramp pretty bad. It’s just too much to bear watching him in pain. I would gladly saw off my own arm, volunteer for a torture chamber and let someone beat me to a bloody pulp if I could take away the pain Ryan is going through with these flushes. It’s beyond words. My heart can hardly contain the emotion of watching my son, who understands nothing of what we have done to him, suffer because Travis and I chose to put him through this procedure. I feel betrayed and misled about how hard, how terribly hard, this would be. If I had known what I know now, I would never have done this. I realize this hard season is temporary and is supposed to get easier the more we do the flushes, but gosh darn it, the cramping Ryan is suffering is intolerable.

He wanted to stand up but I didn’t want him on the carpet we just replaced a few months ago so I took him to the bathroom and he sat on the toilet. Nothing happened except for his constant cries of pain as he grabbed on to me tightly. All I could do was say the name of Jesus over and over again because no other words would come. He didn’t have results so I carried him back to his bed and he finally fell asleep as I stood over him rubbing his leg and praying for relif from his cries of discomfort. I’m hoping the worst of it for tonight is over.

My sweet boy has just been through too much in his short life. At times like this it is so hard to trust the faithfulness of God. To really believe He has all this under control. I want to scream at God and tell Him he is failing Ryan. Tell Him he isn’t near to the brokenhearted as he promises. Yell at Him for not bearing Ryan’s burden. My emotions are crazy right now. The logical, realistic part of me says this is simply his colon trying to get through the trauma of surgery and the shock of having fluid pushed into it. It’s rebelling by contracting and cramping. I get that. The nurse side of me completely understands the process and knows with time this will be a simple, predictable procedure that will save Ryan a lot of pain and discomfort from the effects of a large intestine that doesn’t know how to work anymore. Then there is the mom in me who wants to scream and cry and protest and have a big tantrum and tell the doctors to go to hell because they are all idiots and didn’t tell us what to expect. And maybe they don’t even understand what happens because all this yucky hard happens at home. Maybe they are clueless to the effects of such a procedure. I want to punch someone in the face and make them suffer. I want to call someone awful names and be rude and nasty to compensate for the hurt and frustration I feel in my own heart over this. Yet I know that wouldn’t solve anything. I know being mean and ugly isn’t productive at all. But we parents are a protective bunch. We put our fighting gloves on and get ready to pounce on the first person who even remotely appears to harm our children.

But I know as the saying says, this too shall pass. It’s just getting through the hard to the routine. It’s getting from the volatile emotions to the place of acceptance. And maybe my emotions are not even so much just about this procedure. Maybe they are also a bit of grief over a failing body. Maybe they are simply sadness and longing for a life we weren’t given. A longing for a healthy, easy to care for body that works just as God created it to work. But that’s not what Ryan got. It’s not what the Lord handed him. His body is failing. It’s broken. It’s fragile. And I don’t like it. Not one bit. I don’t want this hard.

I just want relief from the pain. I want escape from the sorrow. I want peace instead of stress and worry. I can’t change my circumstances. I know in my heart this will be worth it in a few weeks. But getting from this hard, this unbearably difficult hard, is tearing me to pieces. Somewhere in all this is the ability to simply say his name. Jesus. Jesus. Jesus. I don’t feel him near. I don’t see his healing. I don’t get his plan. But I see the rest in my sleeping child and I know Jesus is holding Ryan in his arms. And I thank God over and over that sleep can come. The escape from the hard. The rest and healing Ryan’s body so desperately needs.

Please pray with us and for us. I look back to Ryan’s four brain surgeries and remember being so shocked he wasn’t in more pain. I thought this wouldn’t be as bad as those invasive, risky, intense procedures. But this has turned out to be far worse. So please pray for us during these difficult days. We covet your prayers and trust the Lord is listening. Ryan needs healing. Surely God already knows.