Noah had one of those nights again where we were up every few hours crying and screaming. On the average I think Chris and I survive on three to four hours of a sleep. I'm sure we have premature bags under our eyes and always look like a train hit us. I think around 4:30 I just decided to have a good cry in my pillow with Noah screaming next to me in bed. It's so frustrating when you can't soothe your own child. Sometimes you feel like you're failing at a parent, but then I keep trying to remember this is all part of brain damage, nothing is the same after your brain is changed. You don't sleep like everyone else, you don't move like everyone else, you won't think like everyone else, or sound like them. It alters every aspect of your entire life. Not only for the child but for the parents. Life as I knew it will never be back. I will never get off this road, my detour will never end.
Whether Noah naps or doesn't nap it doesn't make a difference in his sleep patterns. I noticed today when he was napping with me that his arms moved frequently like a startle reflex in his sleep, maybe that's what keeps waking him up is movement. I thought about using a weighted blanket had one picked out was going to place the super expensive order, but his therapists tell me not to do it becuase Noah cannot move things away from his face and a weighted blanket could suffocate him if he gets it over his head. So that idea seems to be out. Last night he was up every one to two hours, he didn't want to sleep in bed with us, so Chris slept on the floor with him, but nothing we did really worked. Sometimes it all is a very discouraging feeling. Since Noah's ER visit and ambulance ride in December things have been even more difficult for him than they were before. I feel like we lost ground somehow, that we went backwards.
Today we attempted pool therapy, but when we got there the pool wasn't working so we attempted to do occupational therapy things like the platform swing and such. Things that usually Noah really loves to do. But he had a hysterical breakdown, and nothing I or the therapist did could soothe him. She's trying to teach me all these touching techniques to make it better, yet she reminds me every child has a different trigger and we don't know what will or what won't work for Noah. We just finally had to leave, Noah was still distraught in the car, something that is dangerous to travel with an upset Noah. I almost thought I'd have to pull over and try to give him a break so he didn't get sick, but then he finally started to calm down enough that I was able to keep going.
His pool therapist recommended respite help for Noah, knowing that we're just simply exhausted. Unfortunately we don't qualify for most programs because Noah is not G-tube fed or on oxygen. Even if we did, it would take a really special person to adapt to Noah. I worry that a stranger would become so overly frustrated with him that they'd injure him in some way. He is difficult. And I wouldn't want someone to hurt him or shake him just because they couldn't calm him down and they were frustrated. You have to love Noah through all the tough times, if you raise your voice or he detects in any way that you're frustrated he cries harder. I'm sure most respite care providers are used to dealing with children that lack the ability to get upset, those that are so medically fragile that they require very little maintenance. Noah unfortunately is very high maintenance and is very needy.
I passed a mom that today leaving that said if I can't soothe my child there is always medication. I wanted to react and tell her exactly what I thought of her two cents, maybe I should have but I didn't. I'd like to think she was joking but I don't think she was. Sometimes you have to forgive people for their ignorance on what they say. They see two minutes of a picture of your entire life and think they have the right to criticize and offer an opinion. She has no idea what Noah suffers from. No idea about our life or Noah. It's easy for an outsider looking in to say I'm sure lots of things. Walk just minutes in my shoes and you'd think differently. This life is not cupcakes and icing. I'm not living a fairytale. God I wish I was. Lately I think I've even bit a bit annoyed with God, shame on me I know. That certainly will get me nowhere fast. I want to know why he's not helping healing Noah, certainly the only miracle can't be that he survived his birth. There has to be more. I want there to be more. A mother can't help but ache for a child that is struggling. I'd gladly take his place, take the burden he must carry of being so physically impaired.
"God didn't promise days without pain, laughter without sorrow, sun without rain, but He did promise strength for the day, comfort for the tears, and light for the way."
Unknown
Love,
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
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