I hear my 13-month-old son stirring in his bedroom and know it is time for rounds. I prepare a bottle, get supplies for a tube feeding as well as an oral feeding of baby food, and head to his room. His eyes are red and gunky and he coughs hard enough to turn his whole face red several times as I change his diaper and check his temperature. No fever. Whew. I vent him through his feeding tube as I change the diaper and go through some PT exercises for his feet and legs, and I get up to wash out the syringe. When my special needs child is sick, I feel sick.

He looks so pitiful I decide to just snuggle for a while. I lift his limp, floppy, hypotonic body up, trying to ensure that I’m not sitting on his oxygen tubes as his oxygen monitor beeps loudly, indicating the sensor has been pulled off in the transition. I curse at the machine as I turn it off and try to position him comfortably on me, with his legs straddling mine, his arms and hands placed on my chest and under his chin to try to support his head. I worry, as always, about his hips being splayed out in this position, as our PT has constantly warned us against. His head is also turned to the left, his favorite side, which I constantly worry about as well. I hook his monitor back up to his foot and listen to his wheezy breathing as I wonder what to do next.

When My Special Needs Child is Sick :

I feel so angry.

I’m angry that he is sick again, that things with him are so complicated. I envy the ease other mothers take for granted when they can simply pick up and feed their children without it being a worrisome, time-consuming ordeal. When my special needs child is sick I’m angry that we are not out picking out our Christmas tree, like we had planned for the day. It seems every single time we try to go out as a family, our son gets sick, despite doctors, therapists, and friends encouraging us to “lead a normal life” and reminding me that we “can’t keep him in a bubble.”

I’m angry that when we do go out as a family, I am often left sitting on the sidelines holding, caring for, and monitoring Walt instead of participating in festivities (though there is nowhere I would rather be at a get together than watching over my son, and I gladly choose this duty). I fear that the two of us will forever be sitting on the sidelines as life goes on.

I’m angry with myself, for feeling this way despite the millions of things I have to be thankful for, the knowledge of the many ways things could be worse, and the knowledge that everyone struggles with things. At this moment, when my special needs child is sick, I’m having a hard time focusing on the positive, yet I still feel guilty for having this pity party for myself. Last year at this time, Walt was still in the NICU.

I’ve been working in my new social work position with older adults in very difficult situations – no heat, absolutely no family or support system, and many illnesses. Some are struggling with caring for their own aging parents or disabled adult children, living in unsuitable housing situations in “dangerous” neighborhoods. I don’t have these problems, yet here I sit, sad, frustrated, angry, and envious of others out enjoying the holiday weekend or experiencing “normal” problems, as I snuggle my sweet, sick, lethargic, coughing baby.

I’m angry that though I’ve taken on this job in my field, which I am glad to be back into, I am still the one who has to juggle my career with going to all of Walt’s therapy and doctor appointments, working around our nurse’s schedule, attempting to get our twins to preschool on time, managing our kindergartner’s homework and school events schedule (heaven forbid we forget fifty cents on popcorn day!), dealing with insurance denials, prescription refills, medical equipment repairs, and experiencing how difficult and unkind people can be.

I’m angry that our house is a disastrous mess, but I have absolutely no energy to clean or organize it, let alone try to eat healthy, exercise, or “make time for myself,” as so many advise to do.

I’m angry that no one can watch our son for us so that my husband and I can have some time alone together, without our other three children literally climbing on top of us and interrupting us. Instead of looking forward to holiday parties coming up, I’m dreading declining them all, or one of us going alone.

When my special needs child is sick I’m angry with the male relative (who does not have a uterus, has never carried a child, and has one healthy adult child and depression) who tells me that even though others may say they know how I feel when I am sad and grieving the future we’d pictured for our child, he really knows how I feel and that I need to adjust my medication.

I’m angry that if my son were “normal,” and we didn’t have all of this equipment in our home already for his issues, he would probably be in the hospital with this pneumonia and I would not be here alone trying to decide what to do. For the ten millionth time as I try to make up my mind about what my son needs now, I think to myself, “I’m not a fucking nurse!”

I lay him back down on his play mat, careful not to disturb any tubes or monitor wires. I get a washcloth to wipe the gunk out of his eyes. I offer him a clean corner of the washcloth to suck or chomp on, as his speech therapist has suggested we do to help him work on the muscles in his mouth.

Though he is nearly asleep, I offer him his bottle, but my poor sick baby is not interested. It will have to go through the tube. And forget about the baby food, or story time, or work on any of his other therapies. The breathing treatment can wait, I decide, as I rock my sweet baby to sleep and lie him back down, covering him loosely with a light blanket, hoping for no more fever. I turn off the light and leave his room.

Until the next round.

When my special needs child is sick, these are all the thoughts going through my brain. What do you do on the rounds for your child?

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Category: Special Needs

Tags: Sarah