Our middle Marrtian has a Rare Disease.
It’s so rare, that the primary cause of his mitochondrial dysfunction hasn’t been nailed down after searching for eight years.
But we are getting closer to a name of his particular rare disease.
Even though it’s chilly, my mind turned to summer today. Although, no on that knows me personally would be surprised by that 😉
I started the day at the dermatologist’s office.
I spent many of my years before I turned a quarter of a century old, by the coast. I have been lucky to be able to call both of them my home at different points in my life.
But today I paid the piper for never thinking about using sunscreen.
And my thoughts turned to summers future. Because we are only a month or so from spring.
And this old body needs some work.
Why hello there old friend…
It’s been a few months, but you will see a lot of my while I make up some time.
My youngest Marrtian. And the one I used all that behavior mod that I learned because of Danny on…
“A yellow bagel with white butter and no cutting it”
When jack was three we would stop at the bagel place for breakfast Monday Wednesday and Friday the year he was three because I had driven Katie and Danny the 20 minutes from the house to shaffer where they attended elementary school and to drive home was a waste. So we would stop for breakfast three mornings a week to kill the 45 minutes until it was time to run jack to ms Chris preschool class. He always ordered a yellow bagel with white butter uncut. Which translated into a plain bagel with cream cheese spread over the top…never cut, never toasted. He still eats then the same way.
Jack was a vegetarian for 3 years from the ages of 5-8. Because “mom, I like animals”. The only meat he would eat was meatballs on his spaghetti. For three years.
He would create entire cities on the butcher clock paper I would spread out on my floor. Libraries, banks, gas stations, airport…
He would constantly create board games. Complete with dice, game cards, and rules. OMGosh the rules…
He could sing jimmy buffets’ fins at 2.5
And love and luck…
Thall shalt not ever bully is his thing….he stands up to bully’s both that try to bully him and anyone that is bullied.
He’s a remarkable young man. The way he has grown up…and still he has always been his own person.
He holds my heart. I love him. And you know what, he knows it….”because I am totally lovable.
His 6th grade language arts teacher described jack as the most creative and gifted writer he has ever taught.
He is like no one I have ever met.
In a good way!!!