I’m Good at Catching Vomit {and other confessions of a special needs mom}

When it comes to parenting my son with multiple disabilities and special needs, I like to think I do a good job of staying positive. I do what needs to be done to meet his medical needs, and I spend as much time as I can just loving him and keeping him comfortable. Beneath the surface of my optimism and cheerful attitude however, there are fears, sadness, and less-than-positive experiences. These influence how I parent my son, as well as relate to the rest of the world. These are my confessions.

I feel incredible, unrelenting guilt.

Intellectually, I know most of this guilt is inappropriate. I’ve seen my son’s brain scans and have thick binders full of medical records that tell me, without question, that he is sick. His body is broken, and he will never experience the world like a typical child. It’s impossible. Still, there’s a pit in my stomach when I take my other two children to the zoo and leave him behind. But an afternoon at the zoo with too-high temperatures could land my son in the hospital.  There’s also the guilt I feel when my typical kids miss out on an activity or attention because of their brother’s needs. No matter what I do, it seems as if I’m short-changing somebody.

I need help and do what I have to do to get it.

My son is on a program for medically fragile children that provides respite hours and qualifies him for Medicaid. Whatever your thoughts are on government assistance programs, please understand that it is overwhelmingly expensive to care for a child with a chronic illness. Many families {including ours} would be in serious financial trouble without Medicaid. Just the prescription co-pays alone would eat up a chunk of our monthly income. Then there’s medical supplies and equipment, doctor visits, surgeries, therapies … the list goes on and on. Because of the severity of his needs, my son also qualifies for private nursing, so we have nurses in our home about 65 hours a week. Yes, this is a lot of assistance. No, I don’t feel an ounce of guilt about this one.

Most of the time, my special needs kid is my easiest.

True story. He doesn’t talk back, he naps a lot and goes to bed insanely early, and he is content to cuddle as long as I want. The downside to this is sometimes he doesn’t get the attention he deserves because his healthy siblings monopolize so much of my time.

There’s a lot of puke {among other things}.

I catch and clean up vomit multiple times a day. My son drools like a teething baby and will always be in diapers. He is fed continuously by a feeding tube that sometimes clogs and leaks. Every few months we have to devote a weekend to a bowel cleanout, which is as pleasant as it sounds. I’m no longer fazed or grossed out by any of it. I just carry a lot of towels and wipes, and I do a lot of laundry.

I have to think about the death of my child.

My son has a life-limiting disease, which means most likely he will die of it. I don’t know when or exactly how, but chances are he will leave this earth before me. I am forced to consider things like end of life care and what life-sustaining measures I do or do not want for my son. It’s unnatural and horrible. I hate it.

I get annoyed with moms who freak out over ear tubes.

The same goes for stomach bugs, or the fact that her 6-month-old isn’t sitting up yet. My kid is almost 6 years old and hasn’t ever sat independently. I waited and waited {and worked and worked} for many, many milestones that never came. I’ve handed him over to anesthesiologists and surgeons more times than I can count. He vomits, on average, 3-4 times a day. I try so hard to have empathy for parents of children going through typical health issues, but to be honest, it’s a challenge. And that brings me to my next dirty little secret.

I’m jealous of you.

I’m jealous that you can leave your children with a babysitter and take family vacations. I envy your excitement when your kid gets to put on a baseball uniform for the first time or learns to read. Your dreams for your child include a future that includes you, but that is independent from you. I don’t have the luxury of that dream for my little boy.

Despite all the hard, the gross, and the heartbreaking aspects of parenting my son, I feel so blessed to have a special needs child. If there was something I could do so my son could be healthy and experience life like other children, I would. But his life has profoundly changed me for the better, and for that, I am grateful.