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. 💜

I Am Resilient 🔥

Saturday, I had a long, sleep deprived, tear filled argument with God about where I am at, right here in this moment.

Despite all of life’s imperfections, I have everything I could ever want. I have an unconditionally loving husband, a happy marriage and two beautiful girls. My heart has always longed for a stable, joy filled marriage, children to love in the midst of it all, security in myself and the ability to find compassion over judgement.

So, WHY does my dream have to shatter with a fatal diagnosis for the child I was lucky to be able to have?

I’m sure He was standing up there thinking, “She’s not going to stop yelling at me today, but I’m listening.”

This morning while the girls were still asleep my heart settled to all of those enraged feelings on Saturday and I’m so thankful that His love never fails, because without His love, I wouldn’t be remotely close to where I am today – even with the heart break we are currently facing.

This version of me wasn’t built over night. Who I am today, is standing on a mountain that formed from earthquakes in my life revolving around experiences, insecurities, pain, abuse, anxiety, depression, health issues and mistakes of all kinds. I had to go through so much to get to the level that I am on now.

Now, I am kind. I am okay with being imperfect. I am compassionate. I try my best not to judge another. I can admit to my wrongs. I am a lover but a fighter when need be. I can hold my ground with grace instead of pride. I value time over materials. I find happiness in the simple things. I forgive easily. I embrace the smallest moments that most take for granted. I am open about my anxiety and depression, but never use it as an excuse. I am blunt, honest, and realistic – and I am okay without the approval of others. I find money to be necessary but also the root of all evil. I strive to be a better version of me, every day. I am an imperfect yet powerful mama (patting myself on the back). I will give my all to move mountains for my husband and my girls. My relationship with Jesus is the best it has ever been due to His unfailing love for me and willingness to listen to my attitude far more than usual in recent weeks.

I have been through so much.
Why does He think I’m so strong?
Maybe because He built me for this. Instead of choosing to wallow in self pity, I continued to get back up. I am 100% a “bring the fire,” type of spirit and I’m only a quitter on things that no longer serve me in a healthy manner.

Maybe, just maybe, He chose me for this path because •I AM RESILIENT•

My dream didn’t shatter because of a fatal diagnosis. My vision, heart and mind were adjusted accordingly for a fight He has been preparing me for.

•About six months ago, I promised to find out what was going on with my girl, despite everyone saying it was “normal,” or “would be okay.” I did that.

Now, I promise that the world will know about my girl and others like her. 🔥🌪🌩🌈