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Why I Don't Say I'm 'Just a Mom' Anymore After Managing My Child's Health

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Do you ever find yourself saying, “I’m just a mom?”

Even if you are not the mother of a child with a disability and stay home with your children, you are still not “just a mom.” You do so much to keep your family together. You are behind the scenes, and it can be isolating, but you keep going regardless. For three years I have been everything to my Kabuki kid and have done everything for him. I’m his mom, advocate, therapist, teacher and in some ways, his doctor. I stay at home with him instead of having a job outside of the home. I have heard others say it about me, and I’ve even caught myself saying it, when asked what I do. “I’m just a mom.” But I’ve realized, I’m not “just a mom.” I am so much more than that.

1) I’m the coordinator of his medical care.
My child’s health requires a lot of effort to manage. That’s a fact. It is constant. He needs attention. He needs sensory input. He needs the iPad. He needs a follow-up appointment. He needs a high-calorie diet. He needs his “Linus” blanket. Sometimes he needs his G-tube changed or needs to be “hooked up.” I have to help him learn boundaries and discipline. He needs occupational, physical and speech therapy. He needs to be enrolled in school. He needs special benefits and grants, which means more paperwork.

But once I take a break, or even think about it, I don’t trust anyone else — maybe only close relatives who know him better. I have a hard time trusting a stranger who doesn’t have a medical background. In my mind, no one will ever be as reliable as me, his mom, when it comes to his day-to-day care. Putting him in school caused me separation anxiety. All of a sudden, we had to follow someone else’s schedule. I felt in the dark about what was going in his day. I had to learn to let go. It’s not easy.

2) I’m his advocate.
I’m always on hold with an insurance company to make sure my son has coverage, or the doctor’s office to schedule another appointment. Or I’m joining some online group to find out what grants and benefits I need to apply for and in what order. Then, I’m gathering mounds of paperwork to go along with these applications that he may or may not qualify for. With my child’s complex diagnosis, insurance would cover everything except for speech therapy. He’s 3 years old and still severely delayed in speech. Yes, possibly because of his sub-mucous cleft palate, but maybe also because he never had speech therapy. We’ll never know if he would be farther along in speech unless we had the opportunity to have him seen on a regular basis. If I’m not on the phone, I’m sitting in a waiting area to try and see someone who can answer the millions of questions I have. I know my child better than anyone on this planet and have disagreed with plenty of doctors and nurses about his care. It’s an exhausting journey that never ends. There will always be a phone call to make and an appointment to book. There will always be something to learn and teach others about your child.

3) I’m the expert on his rare disease.
In one month, we had no less than 12 appointments. We saw pediatrics, neurology, ear nose and throat doctor, gastroenterologist, cardiologist, a feeding therapist, nutritionist, orthopedic surgeon, occupational therapist, craniofacial specialist, and at one point, urology. I would try to schedule multiple ones on the same day so that would give us some “lazy” days at home. It was hectic to have two to three appointments on one day, but at least they were over with. At least I wasn’t going to a doctor’s office every day. We filtered through at least nine different specialists.

And even when the follow-ups get farther in between, we still have a heavy appointment month every three months. Our lives revolve around his schedule. We are constantly checking the calendar. “Nope, Finn has an appointment that day.” And there’s work to be done at home too. In between the check-ups, I’m the one working on speech or applying feeding therapy techniques, or coming up with new sensory input ideas to keep him entertained and happy. I’m the one keeping up with his calorie intake for the day or watching the clock for the next time to “hook him up” to the feeding pump. There are a million little things I know about him that others don’t. I know how to speak and interpret his language and made-up sign language. I know which song he’s humming or requesting to listen to.

It’s my job to be an expert in my child and his diagnosis and care.

It’s hard. It’s exhausting. I never wanted to go into the medical field, but here I am.

And I do it all with love. I do it for my kid.

Follow Finn’s story here on Facebook

Originally published: September 12, 2019
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