Some Days

Every once in a while I hear that doctor’s voice echoing in my head. “You can choose to continue treatment, but life isn’t going to be easy with him. There’s been too much damage.”

Today is one of those days. He’s tired but he won’t fall asleep. It’s been a week of him being up all day and well into the night. 4 am bed times and 8 am wake up times can really start to wear on a person. He’s crying and I can’t figure out what has him upset. He’s tightening his muscles and making everything short of lying him on the couch difficult. Everything. Including feeding him.

I sat him down to color with Erynn for a minute and he threw up. I put him on the couch and he stressed himself into a sweaty mess. I rocked him and he opened his eyes and smiled at me like he wasn’t the least bit tired. I put him in his bed. Surely he will put himself to sleep, right? He’s exhausted. Nope. I’m not sure why I even try that technique any more. It never, ever works. Instead, 10 minutes later I’m in there snatching him out of a pool of vomit, dripping it all over me and the floor so that I can get to the chair and help him clear his lungs.

And there I am, with Matthew propped up in the rocking chair (doing his best to fall out of the chair) and trying to strip the crib and his pillow of linens when I hear it. I hear that voice. And I think, “He didn’t say it would be this hard. Is this really it? Is this what the rest of our lives will be like? Never getting enough rest. Never getting a break. Always worrying. Always cleaning up one mess in time for the next one. Is this really it?”

I hate those thoughts. I hate them  because I love my son. I would have made the same decision even if the doctor had said exactly how hard things would be. I hate them because they are weakness. Yes our days are truly like this, but Matthew has brought immeasurable love and joy to our lives. He has changed us all for the better. I hate them because I don’t believe that this is it. I know things will change. I have seen them changing (albeit at slower than a snail’s pace). I know things will get better.

But goodness, kid! How about a break from the insanity?



4 thoughts on “Some Days

  1. God Bless you honey. I pray that things get better for you. I would help you if I could in any way. My son has CP (although there is no comparison). He is going to be 44 in a few weeks. He is on his own but lives month to month. He gets SSI and has to live on that. He has no children and is divorced. I worry about him when I die. I will be 70 next week and it is always a concern. But like you, I wouldn’t trade him. He is funny and fun to be around and has a great smile. He has many depressed days and they are bad days. Love to little Matthew and your little family. I have been following your story. May your days ( and Matthew’s) get better and better.

  2. We are praying for your precious family….love you very much. Words don’t adequately convey all that we wish for you, but most of all, we wish His peace & His joy for you in each day. His strength for your weakness, His faith for your doubt, His hope for your discouragement….His very presence in your every moment.

    God bless you for sharing so honestly…Life is wonderful, but it is also very hard sometimes. Deb for all the Rudds

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