You have a child that looks healthy as can be, and for the most part they are. At least in our case they are. Olivia has outgrown most of her major medical hurdles. She has survived Laryngomalacia, battled dysphagia, lives with pulmonary valve stenosis. She has conquered speech, food, physical, developmental and occupational therapy!
The battle however is far from over. She also struggles with sensory deficits. In some situations she seeks sensory activities, in others she avoids them at all cost. Usually the avoidance comes at a high cost -my sanity-, in that moment it is hard for me to remember that what ever she is avoiding is a real fear/problem for her.
The extra 30 seconds it takes her to walk to the car, because she refuses to walk on the grass, can seem like an eternity when we are running late. Often times I find myself asking in an exasperated voice to “just walk on the grass” or “hurry up”. Only to hear the words “mommy, I am walking fast” or “mommy, I just can’t walk on the grass”. The guilt afterwards is unimaginable.
Mostly our battle demon is bath time. Bath time is a terrible time anyway if your child doesn’t have a sensory deficit. First, they don’t want in the bath, then you can’t get them out. We also struggle with those simple bath time woes. Then it gets even more complicated.
You see, Olivia CANNOT stand to have water on her face. Not even a tiny drop. We must stop everything we are doing to dry it off. She can’t have water in her ears. God forbid there be a speck of dirt or hair in the tub and it might as well be giant spider as far as she concerned. It must be taken out of the bath before it gets with in 3 feet of her. Literally, she will jump up and climb out of the bath to avoid a speck of dirt. She cries if she sees hair in the bath.
It’s exhausting.
It seems silly.
It seems small.
To her it’s a very big deal.
We live in an old house so the tub has some stains, currently there is a black dot on the bottom of the shower that I cannot get clean. At 37 weeks pregnant bending over to scrub and scrub the bottom of the tub is just something that isn’t happening. Olivia is convinced this is dirt, so the night before last after 10 minutes of hysterical sobbing in the bath -she never sat down- we switched to a shower and everything was fine. Tonight, we skipped the bath all together and went straight for the shower. Except tonight, everything was not fine. Tonight she wouldn’t even step on the black dot. Wouldn’t step in the water. My patience was already wearing thin and I just couldn’t deal with it. Not Tonight.
Hurriedly, I threw a towel on her face to cover her face (remember, no water can touch her face). I stood her in the water with impatience in my voice and movements that were quick, and hasty. I washed her hair quickly, removed her from the water and hung the towel up. Time to wash her body. I soaped her up and asked her to rinse off in the water. She wouldn’t do it. Could not step on that little black dot. Again, with impatience and haste I stood her in the water, avoiding her face, and quickly rinsed her off. The tears came and came as I quickly wrapped her up in a towel and carried her to her room. My heart full of guilt and sadness.
In my mind, I knew to be patient. I knew she was struggling. I could see the torment of wanting to take a shower by herself, but being plagued by the little black dot. Her mind would not let her get over it. It wasn’t her fault. She didn’t know mommy was tired and exhausted. That mommy was struggling to make it through the day (I’m currently on modified best rest for the next 18 days).
What they don’t tell you about having a child with a sensory deficit is that it is impossible to watch your child struggle with their inner demons. They don’t tell you how quickly you will lose your patience because your just tired of dealing with the silly stuff. They don’t tell you how guilty you will feel after yelling -which only made the situation worse. They don’t tell you that your four year old will look at you, and tell you that when your yelling they just can’t do it. They don’t tell you, your heart will break time and time again as you constantly fail your child.
They don’t tell you about the times when you get it right and your four year olds face lights up with pride. They don’t tell you about the little victories when your daughter put her head down in the tub and got her ears wet and thought it was the coolest thing ever. They don’t tell you about the unimaginable joy you feel when you watch your child overcome their inner demons. They don’t tell you that cuddles after you apologize for yelling are the best cuddles in the world.
Tonight, I lost the battle. Tomorrow is another day.
Tonight, I will hold my baby a little longer and promise to do better tomorrow.
Tonight, I will rest in the peace that grace gives even when I fail to give grace.
Grace Lives Here 
Leave a Reply