My son can dress himself… most days.
Archive for the ‘Memories’ Category
Friday was the day we went to pick apples to make our favorite fall gallettes.
My beautiful baby got big!!!!!!
Although it’s rarely easy, I work to give my kids age appropriate experiences. Today we packed up oxygen, suction, cooling vests and the wagon to head off to the blueberry patch. Tav picked nearly a half hour before needing the cooling vest & to sit in the wagon. The girls fared better, Keva sat to pick but moved between rows pretty well considering. Adrien even handled being buzzed by a bee.
Tav needed suction a few times and an oxygen increase to 1.5Lpm to keep going (seated) but he ate more than the girls while there in the bushes. Lunch was delicious with the fresh blueberries in our homemade yogurt. Enjoy the photos.
What a fun family first!
My kids’ genetic material is being sequenced to try to determine which type of metabolic disease they carry that may ravage their body and take them before they experience their 40s… or 30s… or 20s. One 7 year old and my 5.5 year old are affected in some way, the SAME way, a RARE way, as 1 other child at our local children’s hospital and 2 known adults “AT the NIH”- not a location for the healthy.
If we choose “best case scenario”, 7 is just under the 1/3 mark of a lifetime with one of these diseases. And if it’s not…
I bought them roller skates. They’re uncoordinated; they have low stamina/exercise tolerance. And a close relative asked “Why would you buy them roller skates?” They are likely to develop seizures and regress cognitively & physically. But they don’t have them yet.
When she asked “why”, I realized again how little others understand of this life. They watch. They try to support. They have absolutely no clue whatever.
I see my 7 year old and think: if he understood, what would he want to do while still able? What “fun” would he want, should he want? If he knew what he could wish for before it’s beyond his capacity to wish, to accomplish?
When I was a kid, my Dad was in the Army reserves. 2 weeks every summer he went to a base for “active duty” & always brought back something for each of us. One summer that ‘something’ was roller skates. I still remember the feel, the fun, the risk of life & limb at the top of our treacherous driveway…
That experience is something I want for him. Sure, roller skating will be work for him, and for her. But practice will bring success and success will bring fun. And “FUN” is the bucket list of childhood.