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To the People Who Don’t Understand My Life as a Special Needs Mom

If I could tell you just one thing, it would be this: I get it.

You have no idea what to say to me. You’ve never raised a child who has special needs, so you couldn’t possibly ask the right questions or give appropriate advice. You don’t have monthly doctor’s appointments or endless therapy sessions. You don’t have to argue with insurance companies or the school district.

I get it.

You’ve never had to repeat your child’s endless list of complications to the point you sound like a robot. You’ve probably never had to say, “I hate shoe shopping for my child.” Because you know buying those cute shoes for your child can be part of the fun. That is, unless your child wears leg braces to help them walk. Then you would know shoe shopping can be hard.

You can probably understand every word and funny story your child is telling you. You might’ve blown off my child’s lack of communication skills like it’s no big deal, not knowing she may not just wake up one day and be able to speak. You probably can’t even begin to imagine what it’s like to speak and know what you want, but no one can understand you. You probably don’t know she will only achieve her communication skills through many speech therapy sessions and expensive therapy sessions.

I get it.

author's child

You might even mistake my complete and utter self-isolation as something personal. You might take my lack of interest to socialize like it’s directed toward you, not knowing that instead of meeting for coffee, I’m probably in a waiting room somewhere. Or possibly stuck in traffic coming home from taking my daughter for more blood work. You’re probably unaware I was up most of the night recording videos of my child sleeping for one of her doctors so we can better understand what kind of night seizures she’s having.

But again, I get it!

You might think since I’m a stay-at-home mom that I have lots of time. What you probably don’t know is my husband works two jobs to pay for our tall, endless stack of medical bills. Not to mention if I didn’t stay home from work, no one could take my daughter to her therapy. So while yes, staying at home is something I’m proud and happy to do, it’s also medically necessary. Since there is no medical cure for my daughter’s conditions, there are only interventions and treatments that can be done for her. As much as I wish science would speed up time and find ways to rewire the brain after damage, no such miracle yet exists. I’m sure with all that being said, you still don’t understand what we’re up against.

It’s OK, I get it.

I don’t hold you solely responsible for the lack of awareness you have about my life. There are some things you have to experience to understand. There are many things I have trouble finding the right words to explain. I’m aware at times I might seem a little emotionally on edge or a little spaced out, or I may forget to ask about all the good and bad things happening in your life, too. I wish I could somehow tell you that for the past three years, I’ve been living in fight mode for my daughter. Most days I’m pushing through my exhaustion. I’ve been given more medical diagnoses for her (without explanations about why they’re happening) than I can wrap my head around. I’ve had doctors run some of the scariest tests on her, looking for fatal and incurable diseases.

It never gets easier. I hold my breath longer and longer after each round of testing. I would almost give anything at this point for the tests to stop. For a doctor to tell me they can actually cure just half the health issues she has. I would give anything for a doctor not to schedule a follow-up appointment every four months.

It would be nice, somehow, even though we live in different worlds, if our lives could relate. Or even if we had a thing or two in common. I would greatly accept any type of distraction from my constant state of worry. If for whatever reason this never happens, please know from the bottom of my heart…

I get it.

Follow this journey on Specialparent1’s Blog.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.