Caydence's Journey with CDKL5

Nancye shared this on Caydence's Facebook page:

https://www.facebook.com/Caydences-CDKL5-Journey-185700519048986/

I don’t know how you do it.

I get that all the time.

I often wonder why, because it seems like anyone in my position would do it.

The funny thing about this comment is that no one, at least outside of your immediate family or medical team, knows what it is you do.

I’ve also taken on the role of a caregiver, advocate, nurse, therapist. So I guess “I don’t know how you do it” is an understandable comment, but most of the time I just answer as anyone else would.

But maybe now it’s time to answer it more detail.

Yes, I’m tired. I’m stressed, and some days, ultimately, I’m just 100 percent drained.

But how I feel and what I do is nothing compared to what my daughter goes through.

Yes, I go to all the doctor’s appointments and therapies, but I’m not the one doing all the work or getting poked with needles and such. My daughter is the one who has it rough.

As a parent, you would go to the ends of the earth to protect your children; hopefully you never have to, but I do it every day.

I fight for her to have a better life — and if that means I don’t sleep, I stress too much or I seem distant, then so be it.

I see life differently now, because of her. I’ve witnessed true fight, passion, and unconditional and never-ending love.

I’ve also seen prejudice and ignorance.

Some people only see her disease, but I see her. I see the innocence and love of life from a child. Yes, she’s just a child, one who fights a battle most adults couldn’t.

I’ve seen her accomplish things they said she would never do. And the joy in her eyes is nothing short of amazing.

It’s hard to put into words what it feels like when you finally accept your child’s diagnosis, and change your thoughts on what their life will be.

You still never give up in hoping that they will live longer and have a happy life, but you come to terms with the worst case scenario as well.

What keeps me going is even the smallest “win.”

You were told your child would never achieve something, then they do. It’s a miracle, a memorable moment both you and your child will never forget. It’s a glimmer of hope that makes you believe that anything is possible if you just fight for it.

This life is about her, giving her the best quality of life possible. Letting her experience things other children do, while watching the joy in her eyes.

There is no time for self-pity or rest. The clock isn’t on our side, there is lots to do and lots of joyous and memorable moments to be had.

She needs me and I need her, it’s that simple.

So, to sum up “how do I do it” — I do it because I love her.

❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤