I'm not Sorry About My Child with FOXg1 syndrome - My article In The Mighty!
The original title was: Sorry, Not Sorry.
The Mighty is an incredible site with the tagline: We face disability, disease and mental illness together.
It's user generated content, generated by people who are faced with the aforementioned challenges. I feel very lucky to have a platform to talk about Josie and Foxg1 syndrome, all while raising awareness and potentially spreading some positivity to other parents of special needs children.
Or read the text here:
When I Hear These 3 Words as a Special Needs Parent
Is it possible, for what kids with FoxG1 syndrome lack in cognitive and physical ability, they make up for in cuteness and sweetness?
You might be reading this and thinking, how is there anything cute about a severe, rare, neurological condition that hinders the ability for children to do most things?
Well, let me tell you about my FoxG1 girl, Josie.
She was born with this doozy of a genetic disorder. She is four-and-a-half-years old and cannot sit up unassisted. She can’t talk, nor can she take care of her most basic needs. Her brain just won’t tell the rest of her body what to do.
People often say to this, “I’m so sorry.”
And I admit, as a mother, I am sometimes sorry for her, too. She would love to do all the things four-year-old girls do. She’d love to run and play, and make Musical.ly videos (the app) with her brother. She sees what’s going on all around her. She wants in.
And sometimes, only sometimes, I’m sorry for us, too.
Of course there are times when her brother, father, and I all wish we could do things with her she’s not able to do.
But, don’t be sorry for us.
Sorry, we’re not sorry.
For all that we don’t have, we have something else.
I always say “it’s just different.”
Josie wakes up with the biggest smile on her face. And she’s got that kind of smile that just grows and grows. You know when the sunset turns the sky all beautiful shades of pink and yellow and orange, and you think it can’t possibly get more beautiful… and then it does? That’s what Josie’s smile is like. And she smiles all day. And she laughs. It’s contagious. You simply cannot be unhappy around this little ray of light.
OK, well, she doesn’t smile while she is having a seizure or when she is tired. But most of the time, she is the happiest little girl in the world. And this is one common characteristics of most kids with FOXG1 syndrome.
Watching the will this little girl has puts life into perspective. She doesn’t give up. She will try to move her little tushie forward to get to her toy all day long. Her will is tremendous, and it is my constant reminder that I should never give up either.
She’s also given us something beyond value; she gives us something to teach others. Life doesn’t always turn out the way we planned. Sometimes children aren’t born with all the abilities most others have. Some things are harder and some things are easier. When that ridiculously adorable face is smiling at me as she tries over and over to bring her hand to her toy, all I think is, this is just different and we are so lucky for our “different.”
We’re not sorry.