Some people may know, some people may not. My daughter has a complex medical history and she has Down Syndrome.
As a parent with a medically complex child, I can stay calm with doctors rushing in & out of a room. I can stay calm in the moments that would make most panic. But in those moments, I can promise you- I’m the most scared. I know I’m not alone with that either… it’s what we do as mom’s. We stay strong, even when our world feels like it’s falling. I can absolutely promise you that in the moment after everything has calmed down, I usually am trying to hide the tears coming down my face. I have a constant fear of losing my child every single time she gets sick. When she's healthy, I soak in the moments. But the second a sniffle comes on, I swear I turn into a nurse and am doing everything I can possibly think of to keep her healthy.
I’ll be the first to say, my daughter is so much stronger than I. She always has been. She’s made me stronger. She has made her brother stronger. The resilience of a child is one of the most beautiful things.
As a special needs mom, I was constantly worried about how people would treat my daughter. I have encountered some of the shittiest people, but I’ve encountered some of the best people. I was so worried for the longest time that people wouldn’t accept her. I was worried that her peers would be mean to her at school. I wish y’all could witness the love my child receives at school from her peers. The acceptance my child receives. It truly makes me cry. Not in a bad way, it brings me tears of joy.
I’m also a working mom. I know there are more mamas out there that are working too! Being a working and a special needs mom, seems to be so much harder. How do you balance both? I’m not sure you ever figure it out. How are you supposed to leave your home life at home and your work life at work when you can’t find a balance? I think all the time at work “is my daughter okay?” or “I wonder how my son is doing since my daughter is sick.” (My son is neurotypical) I feel like a bad mom when I’m at work, like I’m missing such important things. When my daughter is sick, I’m worried that something is going to happen when I’m not there. I worry that I’m missing time with both of my children. I get home and I constantly wonder what I could’ve done better at work. “Am I being a good employee?” I know I’m not the only one who thinks that… When my child has appointments or is sick, I always feel awful not being at work. It’s just a bad balance that you cannot find. If someone finds it, please let me know. I’m begging, y’all!
I really hope just reading this, someone out there feels a little less alone.
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