Childhood Dementia is a demon.. 🔥

As your mama, most days flow by quicker than I can grasp, but sometimes, I sit still and wonder…

Do you smile through a pain I can’t fathom?
Do you frustrate easily because you can’t communicate your wants and needs as easily as you used to be able to?
Do you continue to climb over things despite the pain in your joints?
Do you want to sleep no matter how hard your body fights you?
Do you realize you how strong you are physically?
Do you wish to understand why your body keeps becoming more difficult to understand with each passing day?
Do you wonder what’s happening?
Do you question why things keep getting harder?
Or do you continue to smile or at least try, no matter how destructive your body can be?

As your mama, I look at you, and how beautiful you are. You are big, strong, resilient, energetic, hulk-like, joyful, sleepless, fidgety, lost at times, withering in many ways, but absolutely precious.

You shouldn’t have to struggle.
You don’t deserve to try and grasp on to your speech, physical activity, muscle strength, eating without choking and running without pain.
You shouldn’t have to fight your own body for more time.
You shouldn’t have to wonder what’s happening… and I wish I couldn’t wonder if these thoughts cross your innocent, infant-like mind… but they do.

I love you.
Jesus loves you.
I wish I could grasp the reasons in His plan… but I have yet to do so.
The only thing I can seemingly try to process with my feeble mind is that you are far to beautiful for this earth and maybe He knows that.

You are my bestie, forever.
If I could pick up your broken pieces and take them on myself, I would, but for some reason it just isn’t that simple.

Rare disease stinks.
Genetically inherited disease stinks.
Children suffering stinks.
But suffering without a cure, is rotten to the core.

Even if it isn’t in your lifetime, we will fight until the end of ours for a cure.

I promise. I love you, Haidyn Grace.🔥

#curesanfilipposyndrome

Indescribable Strength

The world deserves more of YOU.

Despite the pain, you smile.
Despite your tears, you are easily humored.
Despite your lack of understanding, you find joy.
Despite your anxieties, you love so much.
Despite your uncomfort, you long for touch.
Despite your body fighting against you every day, you keep living to your fullest ability.
Despite your clumsiness increasing, you continue to run.
Despite how often you fall, you always get back up and try again.
Despite your loss of many words, you continue to talk as much as you can.
Despite your inability to sing your favorite songs, you still listen, smile and mumble a few words of your favorite lyrics.
Despite your sensitive tummy, you love food more than anyone I know.
Despite your lack of safety awareness, you see no danger and only beauty around you.
Despite your fatal diagnosis, every day is a new day for you to give it your all.
Despite our broken hearts, you know nothing but love.

You are the strongest girl I know, Haidyn Grace. 💜