I wouldn't read this if you're looking for something uplifting. But I just feel like it needs to be shared.
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Keeping an I-Cell child alive is a lot of work.
Fear of oxygen cords popping off. Chronically checking the tank regulator's dial to ensure it hasn't been nudged ... landing between two settings that shuts the valve off... shutting off our daughter's air supply.
Did we bring enough O2 for the trip?
Lying in bed, dead tired, almost asleep, and hearing your daughter cough, hoping it's not a bad plug. The cough turning into an abrupt silence. 5 seconds pass. An eternity. The sat machine goes off. Levels dropping. Jumping out of bed. Lift her up. Suction machine. Crank up dial on 3-foot-high O2 tank that takes up a good portion of her room.
Feeding her mushed up food knowing that every cell of nourishment won't be stored by her body properly. Every bite progressing the disease. The work of it all. Both for her and for the parent.
The brittle bones. The scoliosis. The kyphosis. Other kids running around and jumping. Wincing and hoping that they don't land on her and crush her. One wrong step. Oh god.
The hands that don't work properly. Those beautiful hands that hold the entire world within them. The ones that need braces put on them when she sleeps so she doesn't lose her range of motion due to the disease contracting them permanently.
The deafness. The near-sited partial blindness. The dislocated hips. The rib-cage and sternum that breaks your heart every time you look at it. Wondering how much pain is she in? Any? Is she just used to it?
Turning the sat machine off some nights at 4:45 in the morning b/c you just want to sleep for a couple hours. Hoping that she'll be okay when you wake up. But the guilt you feel when you see her lips a pale blue in the morning.
The fear of flus and fevers and other people's colds. Knowing that your daughter is a bad cold away from passing has become normal. A crazy normal. But not wanting to bubble your family away in protective fear forces you to come to peace with this reality. Someone's bad sniffle could take your baby girl's life. The worrying becomes normal. A normal not many can understand.
The cries. The bone-chilling, heart-breaking cries that make you want to give your life to take the disease away from her. Cries that – as much as you try not to – make you want to cry with her.
The sadness. The long goodbye that you don't want to end but know has to.
The life lessons you didn't think you would learn until your 70's or 80's, if at all. Seeing the finality of everything by coming to grips with your child's mortality.
The distance in perspective that grows between you and what seems to be everyone else ... except for other parents who've endured the chronic sadness of slowly losing their child to something beyond their control.
Keeping an I-Cell child alive is a lot of work. It makes me appreciate my own health. The good health of my other family members. It's a phenomenal gift so many of us take for granted. I wish I could give it to my daughter.