The Grief You Don’t See

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Like most moms, I celebrate everything our daughter accomplishes. I celebrate it with every ounce of my being. She has autism, so watching her branch out and do new things is a big deal in our house. April is Autism Awareness month, and each year since we received her diagnosis, I have sought to use whatever platforms I can to educate our friends and family, and even complete strangers, about what it’s like to raise a child with unique challenges. I want to use whatever voice I have to try to make the world a better place for her as she grows up and seeks to find her place in it. She is kind, empathetic, and unbelievably crazy smart, and it’s so much fun to watch her grow into her own little self. I love celebrating her. 

Confession time: I grieve constantly. 

I grieved two weeks ago when she got to participate in her school’s 2nd grade musical – the only student from her special education classroom – and they left her name off the program. I wanted to cry. I grieved watching her struggle to stay focused on stage, while other kids beamed through cameos and solos. She got it done, but it took some help from her amazing teachers. I was so proud of her for participating, staying on stage, avoiding a meltdown, and controlling her responses to all the stimuli involved in being on stage, but it’s still a sharp reminder that her experience is far different than everyone else’s.

I grieved last week when, after much anticipation, we watched her celebrate her 1st place finish in the standing long jump at her first Special Olympics track meet. We celebrated with her, of course, but I grieved the life of neurotypical sports competitions I planned out for her in my head long ago. 

I grieve seeing my friends posting their kids’ sports videos, pictures from the science fair, or dance recital portraits… because I wanted those things, too. I bought her a tee, glove, softball bat, and whiffle balls for her fourth birthday, in hopes that she’d grow to love the sport I bled for 20 years. She couldn’t care less. We tried gymnastics once, but she wasn’t ready to wait her turn or follow group instructions from the coach. 

You see, as a parent of child with special challenges, I am constantly pulled in two directions: one side is celebrating everything she can do, everything she learns, every new word she says, every new food she tries, and every single win she records… while the other side is constantly flooded with reminders of all the things she may never do.

When you get pregnant, you start a mental list of all the things you want for your children, and all the things you want to be as a parent. When you find out the gender, you start another mental list of all the fun things you’ll do together, whether or not you’ll be a “bow” mom or a “baseball” mom, a “Barbie” mom or a “robotics” mom, or maybe all of the above. Then, you hold that tiny baby for the first time, and every single thing that could ever go wrong both floods your mind and escapes it completely in one sniff of their sweet hair. 

I never dreamed we’d have a child with autism. No one does. But here we are.

If you’re raising an amazing kiddo with extra challenges, whether it’s physical or developmental, maybe ADD or ADHD, autism, OCD, maybe they have a limb difference, maybe they have Down syndrome, a heart condition, leg braces, dyslexia, an eyesight or hearing impairment, or anything else that makes them a little different, or anything else that makes your lives different than the way you thought it would be, I see you and I feel your grief. And that grief is okay. Feel your feelings, mama. 

Our daughter is everything I ever wanted and nothing I ever expected all wrapped up in the most beautiful package you’ve ever seen. I’m monumentally proud of everything she’s accomplished and everything she will do in her life. But… I catch myself having those selfish, grief-stricken moments of focusing on the things she might never do, and believe me, that rabbit hole is a lonely one. Please remember to take care of your people raising kids who are a little different – please celebrate with them the way they celebrate with you. It means absolutely everything.

 

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