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Dear Parent of a Child With a Disability, Stop Saying You're Not Strong!

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Yesterday, I was texting with a friend and she made the comment, “You are so strong, so loving, so awesome.” I didn’t feel any of those things. In fact, at that moment, I had my head on my daughter’s bed and I was weeping. “I’m not strong!” I wanted to scream. “Look at me!”

Then, I took my own advice. I did look. Let me tell you what I saw:

I cry a lot. My daughter is 8 and she is dying. I cry. My other children all have fairly significant needs and I get weary. But I keep going. I dry my tears and I do the next thing. I push through when I’m sick or sick at heart or dead tired. And so do you. I see it on social media all the time, “Stop calling me strong, I just do what I have to do. Anyone would.” You know what? You are wrong.

First, what does strong mean? A quick Google search reveals some interesting answers.

1. Able to perform a specified action well and powerfully.

You do this every day. I see you providing personal care for your adult child, preparing meals for a feeding tube, giving meds, changing dressings on wounds or central lines, doing breathing treatments, calming after a seizure, keeping a child safe during a meltdown, doing all of the “specified actions” your child needs every day. You may do them while smiling, crying or cussing, but you are doing them well.

2. Possessing skills and qualities that create a likelihood of success.

Your child is succeeding because of you! You have acquired the skills and qualities, through hardship and pain, necessary for your child to have the best life possible.

3. Likely to succeed because of sound reasoning or convincing evidence (synonyms: compelling, convincing).

How many hours have you spent on the phone with doctors, nurses, therapists and insurance companies? How many battles have you fought for your child because you are their advocate? You are a mighty warrior in the fight for your child’s best life.

4. Powerfully affecting the mind, senses, or emotions (synonyms: passionate, fervent).

IEP meetings, support groups, conferences, doctor appointments — no one is more passionate about your child and his diagnosis than you are. And no one is more committed to seeing changes in the system, in treatment and in people’s hearts. Every time you smile at the staring child in the store, educate the teacher at the school and sit with your screaming child in the restaurant, you are showing your strength.

5. Able to withstand great force or pressure (synonym: indestructible), not easily disturbed, upset or affected, showing determination.

I could go on. You may be thinking, “I’m so not indestructible.” You are referring to the crying, losing it, breaking down, screaming, being so utterly exhausted that your brain will not work. I know. I’ve been there. You get upset, plenty. But you get right back up, don’t you? You keep on doing what needs to be done. You stay up all night, rocking that sick baby. You drag yourself out of bed to give that medicine, to go to that appointment. You put on a smile when those eyes are looking at you to see how you are going to deal with one more thing. You, parent, are killing it.

It has been said that courage is not the absence of fear, but action in the face of fear. I think the same holds true for strength. Strength is not the absence of weakness; strength means to keep going, even while you feel weak. It is taking those moments to break down, to feel hopeless and exhausting, and then wiping your tears and doing the next thing. You think you aren’t strong because you aren’t cruising through effortlessly. This life is hard! Yet, you are doing the hard things.

Ah, yes. The next part of the phrase, I can imagine you saying it now. “I’m just a parent, I do what any parent does. I take care of my child.” Perhaps you think, “I didn’t have a choice, I had to do what I’m doing”. There are over 60,000 children with disabilities in the foster care system in the United States at any one time. These are children with parents who, for various reasons, couldn’t or wouldn’t take care of their children. That’s not counting all of the children out there being raised by grandparents or aunts and uncles. That’s definitely not counting all of the children in single parent homes whose other parent just couldn’t take it and bailed. You do have a choice. And you have chosen to step up, to do what needs doing, to love that baby with every atom of your body, whatever it takes.

You, parent, are strong. And loving. And amazing. So am I. We keep on keeping on, through all the pain and heartache and storms of life, to give our children the very best. We cry, we fall down, we fail. And we get right back up again. So the next time someone tells you “You are strong,” don’t disagree. Just say “Thank you, I appreciate that.” Because it’s the truth.

Getty image by master1305

Originally published: May 4, 2019
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