I get that people are well-meaning.
They want to commiserate, to show you they understand, to let you know they “get it“.
But the sad truth of the matter is: they really don’t.
9 days ago Jackson had his first grand mal seizure in over three years.
It was a- full-blown – body- shaking -drooling -get -the- rescue- meds seizure.
And then less than 12 hours later? It happened again.
In his sleep.
Thankfully, I sleep with Jackson so it didn’t go by unnoticed and we were able to follow SOP.
I related this to a coworker…..and how yeah….it sucks and I am not getting much sleep.
And Jack is still not walking even though his leg is healed and……
She TOTALLY gets it cause her 7-year-old wets the bed.
And there is sooooo much laundry to do “It’s relentless” she says.
Hmmmmmmmm fear of SUDEP versus your neurotypical kid wetting the bed…….
And I went off and pondered.
There are many of you out there that DO get it– fellow TSC moms, special needs parents, and those in our close inner circle that see what it takes to raise Jack.
WE have it easy.
Recently the world lost a beautiful soul by the name of Kreed.
Kreed was medically complicated beyond normal standards, but a shining star with two moms whose strength and devotion was beyond compare.
His story and efforts to raise funds to bring him home can be found here on his FaceBook page. I encourage you to visit if you haven’t before. Go back and read over his life and his struggle. Get to know one of the most joyous and courageous souls you’ll ever meet.
I’ve been at a loss to truly put my emotions into words the last few days.
I look around at the world and I want to scream: quit fretting about petty bullshit!
Who cares if you can’t find your LuLaRoe unicorn leggings?
Who cares if your coffee at Starbucks didn’t get the full shot of vanilla?
Who gives a good goddamn that ( fill in the blank with whatever you are worrying about at this moment that is not life threatening or has the potential to be)?
I have friends in the TSC community who’s children are in and out of ERs. Seizures. A cold that turns into pneumonia and threatens the life of the child and months of progress lost.
I have friends who have to deal with their children’s feeding tubes, complicated medical procedures, and fight the system trying to get services. And yet we as parents and caregivers and sisters and brothers get up every single day and do it all over again.
And so to you that do NOT deal with this?
Practice an attitude of gratitude.
Realize that — you know what?
Things could be a whole lot worse.
Maybe be grateful that you CAN spontaneously go to Starbucks.
Be grateful that your child who is being too loud– can TALK.
I have this standard reply I give people when they apologize for something silly:
Like the cashier in the grocery store who apologizes for a wait in line, or when a waiter apologizes for being out of a food item
“if that is the worst thing that happens to me today, then life is pretty damn good”
Be grateful today.
Find your blessings
Because I guarantee you
You have a whole lot of them.
Let your creed be LIVE.
and LIVE JOYFULLY.
Do it for Kreed. Do it for Jack.