Most of you probably know me either as Chelsey or just Cole’s Mom. Some of you also know that I’m a writer, though I typically freelance or ghostwrite for others. I rarely write anything about my own life except for lengthy Facebook posts.
After some not-so-gentle nudging from several people, this blog was born which chronicles my journey of raising a medically complex special needs child. The ultimate goal is to write a book, but the thought of all those pages to write is just terrifying. So how about let’s start with just writing little chunks of the adventure and ease into the novel? That sounds more tolerable to me.
So let’s just do a quick rundown of like, I don’t know, maybe 10 facts about Cole and me to get everybody caught up.
- Cole was born 3 months early. He weighed just over 3 lbs at birth and spent 90 days in the NICU at USA Children’s & Women’s Hospital.
- I am a US Army National Guard Veteran. I spent about 7 years in the service and was very lucky. I was blessed to only work through disasters local to Alabama and never had to deploy overseas.
- Cole has a very rare genetic condition known as SET-D2 or Luscan-Lumish Syndrome. It is so rare, there are only about 500 cases worldwide including 1 in all of Korea. It’s a genetic anomaly he didn’t receive from either parent; he is literally 1 in 14 Million.
- I have 3 beautiful sisters that range from 42- 22 years old. I am 34 years old. But after years in the service, I often wake up feeling 70.
- Cole just turned 8 in December 2023. He had a massive growth spurt last year; in May he wore 5T clothes and he ended the year in 10/12s.
- We live in South Alabama with Cole’s Dad and Grampy who I also care for. We have 4 dogs, many cats, and 3 massive aquariums with dozens of fish! Oh, I almost forgot Franklin the turtle.
- Cole and I both love to read! I also like to doodle and write (obviously) and Cole, like most kids, enjoys watching YouTube, singing, coloring, and playing with fidgets and other sensory toys.
- Cole participates in Speech, Physical, Occupational, and Behavioral Therapy. It’s a lot, especially for a kiddo, but he loves all of his therapists and always puts forth his best effort. We’ll talk more about this later.
That’s it. It’s hard to think about short and sweet facts that are interesting. Now, don’t get me wrong, we lead incredibly interesting lives. But it’s the kind of interesting that requires a bit more descriptive information than can be said rapid-fire style in a Top 10 List.
Anyway, please consider this your official invite to buckle up and join the ride of a lifetime. It’s guaranteed to be interesting, inspirational, entertaining, and perhaps a little somber or melancholy at times. But we’ll live and love and laugh a lot along the way and it’s possible we all just may learn a little something too.
Don’t forget to give yourself some grace today, you’re doing a great job!
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