This afternoon Danny and I are hanging out.
On the floor.
So over comes the dogs. To see what’s up…
Next thing you know, Bogey is pushing and squishing the tent…
And I hear “Bo-gey….!!!!!!”
Mr Dan was expressing his frustration with the youngest member of the family.
(For those of you that are new, Danny is completely nonverbal and I mean completely….except for the random completely appropriate to the situation words falling out of his head, he communicates with sign)
Danny has mitochondrial disease.
From Mito Action
“Mitochondrial disease is an inherited chronic illness that can be present at birth or develop later in life. It causes debilitating physical, developmental, and mental disabilities with symptoms including poor growth; loss of muscle coordination; muscle weakness and pain; seizures; vision and/or hearing loss; gastrointestinal issues; learning disabilities; and organ failure. About 1 in 2,000 people has Mito. It’s progressive and there is no cure.”
click here to learn more
It’s not a “rare disease” on Marrs.
There are some friendships that defy distance and time.
The rare and priceless connections that you only make a few times in a lifetime.
They are the people that you can go ages without seeing or speaking with but when your phone rings you both have a conversation like you just saw them last week with no awkwardness.
Who knew that when Hugh offered to help get a tv in their house forever (literally…..two children for each of us) ago….that she would still be someone that is important in my life???
It was great to take some time today and catch up.
Miss you Debbie.
From Jeffco Public Schools. We are declaring a Snow Day, today, Thursday, February 26th, 2015. All Jeffco Public Schools are closed.
Jeffco Public Schools
I see the text right before it’s time to rally the troops for the day.
I’m not sure who was more excited.
Jack, who kept asking to see the text to confirm that yes, we are having a snow day…
Kate, who said “yes” and rolled over to go back to sleep….
Danny is just thrilled to have his brother and sister home.
I’m just as bad as the kids.
I love snow days.
It’s my new favorite thing.
It’s a way to take Danny through a store without having him sit in the back of a cart….which he is getting to big for anymore.
It is amazing how much easier something is when you have the right equipment!!!!
But the walls were closing in on me.
Not so much d.
Although it wasn’t to see the fish, he was a good sport for a picnic lunch at the park. For a lap at least. Then he was ready to go home and get warm.
I get tired. Although not for the reasons you would think.
Danny? He’s easy.
Managing the systems that are here to help get him what he needs? Not so much.
Today was a not so much day as I try again to get our ducks in a row….sigh.
(Which is why I needed a few minutes out of the house)
In mom’s chair by the fire…
We started just by the fire…and yes, he is taller than his old momma…
And then he plopped on my lap…
After kicking me to the curb, he decided that right next to the fire was way warmer….
It’s 16 outside.
What else were we going to do today???
He is NOT HAPPY with his big sister at all!!!