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As a Parent of a Child With a Disability, Some Nights Are Hard

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Tonight is one of those nights.

If you parent a child with a disability, then you know the night. The night when you need a minute to wallow so you can process.

But you can’t process because there are a million things that need done. Fights that still need to be had, and a child that still needs you to be 100 percent present. But you can’t shake that emptiness inside as you feel like you are falling apart.

Tonight is not the first night, and it won’t be the last night you feel like this, but it is unique to you right now.

The thing about these nights, is it is usually something inconsequential that can set you off. For me, it was seeing the addition of an AFRID (avoidant/restrictive food intake disorder) on my daughter’s diagnosis list at the allergists yesterday.

There is nothing shocking about that diagnosis, and it sits neatly next to a handful of other diagnoses that relate to her feeding. But somehow, seeing it makes my fears come out and makes the last four years real.

I don’t want to see it staring at me for the next few years. I don’t want to see any more medical papers and any more new diagnoses. Preferably, I’d like to eat chips and dip the rest of my life and just exist.

That’s not a feasible option. I have spent the past week arguing with medical professionals, dealing with my daughter’s active chronic conditions, negotiating with my insurance, writing care letters to my daughter’s doctors, actively fighting with school administrators over her IEP, and apparently now, adding new diagnoses to my daughter’s list. Oh yea, and we went to appointments and therapies. I’m tired. But I know I am not alone.

Tomorrow, I will drag myself out of bed with a smile on my face and deal with another day of life. I will complete my to-do list and take my daughter to feeding therapy, where I will listen intently and ignore how I feel. I will focus on my daughter and I will move forward.

I am not alone. Tomorrow every other mom who has a child with a disability out there will do the same. We are an army, and we feel alone at times, but we can be united in the trials we face. I will meet with two other moms battling the same battles I am. And that will give me some relief. Power in numbers.

Tomorrow I will go back to campaigning for my daughter and living my life and stop wallowing in the pain I feel right now. Because tonight is just that… tonight.

Tonight is my night to find some release and admit I can be weak for a moment. But tomorrow is my reminder that it’s time to move on and keep moving forward. I have the power to keep powering on. That is in my control, and that is exactly what I will do.

It’s OK to have that night now and then, but the trick to finding happiness amidst the struggle is to realize that night has a time limit. Don’t turn that night into your life. Turn your life into tomorrow instead, because the future is never guaranteed, and it’s not written yet. Keep fighting forward, because you never know what you will find.

Getty image by nadia_bormotova

Originally published: March 29, 2018
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