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What I Worry About as the Parent of a Child With a Disability

I worry all day. I worry about my family. I worry about my child with disabilities. I worry I forgot medical equipment or supplies. I worry I will forget an appointment or therapy. The worry eats me up. The worry gives me knots in my stomach. The worry gives me headaches. It piles up. There are days when it is completely overwhelming. And I cry.

I worry about school

I worry they aren’t presuming competence. I worry they won’t realize how smart my child is. I worry about whether my child is safe. I worry what happens if my child has behaviors, and who will help. I worry about other kids being mean to him and bullying him. I worry about a lockdown or emergency. I worry if he’s making enough strides academically. I worry about whether or not we should get an outside tutor. I worry if I’m strong enough to be my child’s voice when he needs me to be. I worry about being thought of as that parent. And I cry.

I worry about doctors

I worry about keeping my child healthy. I worry about not doing enough vitamins and supplements. I worry about the doctors not understanding my child’s diagnosis. I worry about asking the right questions and getting the correct medications. I worry about forgetting to mention symptoms or issues. I worry about not asking for a specialist or some new possible treatments I may not be aware of. I worry about the big medical terms I may not have understood but was afraid to ask. And I cry.

I worry about being in public

I worry about how other people look at my child and may judge him. I worry people don’t see beyond my child’s appearance. I worry that people don’t see beyond the physical traits of my child’s disability. I worry about people saying mean things to my child. I worry my child will have a meltdown and people will stare and judge. I worry about how the world will judge my child when he’s an adult. I worry if he will be able to find a job. I worry about how he will interact with the police. And I cry.

I worry about my family

I worry about spending enough time with my child. I worry about spending enough time with my other children. I worry about spending enough quiet time with my husband. I worry about meal planning and making sure we are eating healthy meals. I worry about money. I worry about deductibles and therapies and schedules. And I cry.

I worry about my friends

I worry my friends won’t understand.  I worry my friends will stop calling. I worry that my happy face isn’t happy enough. I worry my friends won’t forgive me for missing moms’ night out again. And I cry.

I worry about the back up plan that I have for the back up plan. I worry that I worry too much.

So, if I look like I was just crying? I probably was. It may have just a few tears. It may have been a big ugly sobbing meltdown. I was probably wiping my tears after hanging up from the phone call, though I said I wasn’t. I may have just completely lost it in the parking lot before I came into that meeting.

So yes, please give me a smile. Please give me a hug. I would love a kind word. I would love a kind touch on the shoulder. I would love a joke or a giggle. I would love a sweet text or funny picture. I would love some positive thoughts and ideas. I would love your prayers for grace.

Mostly, I would love for you to simply say how cute my child is. Tell me how amazing he is. Tell me how worthy he is. That would make my day. That would make me cry tears of joy.

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