Category: Family Synapse

12

Drum Roll Please

Last week I told you I would have some good news to share and today is the day. Remember the saga of Aidan’s bed and how insurance decided it wasn’t medically necessary and that they would much rather pay for trips to the Emergency Department when he falls out of bed? Remember how I wrote letters to the Governor and Senators’ offices and used words and phrases such as “reprehensible fiscal decision” and “unconscionable?” Check...

3

A Game of Guess What!

Let’s play a game of Guess What, as in guess what happened at my house today. I’ll give you two sets of hints. First, I’m completely bonkers with excitement. Second, these…   NO CHEATERS! Some of you already know the answer so don’t guess. The rest of you…take your best shot and I promise I’ll tell you tomorrow.

7

A Letter to My Husband

I’m posting this letter I wrote to Garreth for our 18th anniversary for two reasons. First, my sister loves when I write about my marriage. Second, I believe that it will help change the narrative about raising a child with a disability and getting divorced. I’ve written before about how My Husband is not Romantic but that he Pinky Swears that he loves me. *************** Luv, You asked me one night as we locked fingers...

4

Wonder Wheels

Welcome new readers. Thank-you for joining us on this journey. Here you’ll learn about including a child with a significant disability in everyday life. I write about wheelchairs and seizures and family and school and all sorts of things in between. Please take a moment to check out our About Us page for my favorite posts and say hello in the comments section. *********** If you saw the amazing video about our accessible home remodel...

5

Thank-You

What do you say when someone builds you a house? It’s seems preposterously small to just say thank-you. I suppose I could write it in the sky in billows of airplane smoke to show the magnitude of our gratitude; or I could cry big sloppy tears to express the depth of this  feeling; I could tattoo my arm to show you this isn’t a passing thought. Would you hear me better if I wrote an...

3

Vacation

We went on vacation last week and it was wonderful. There were so many places for Aidan to drive around. He was pretty convinced that everyone else was taking vacation at the same time just to see him. I love watching him drive. This happened to be in the snake house of the zoo (ok there was just one little snake) so he had to go in by himself.  There was no way I was...

4

Community Support

Warning – I’m writing angry and off the cuff which probably breaks a lot of rules and is not very wise. A few weeks ago my sister sent me this Tampa Bay Times article about warehousing children with disabilities, or cutting  support so drastically that medically complex kids end up living with the elderly in nursing homes. It’s an absolutely terrifying article and made me more than a little nauseous and I really encourage you...

2

Take A Load Off

No, really, Aidan, take a load off… Aidan spent FIVE HOURS in the pool yesterday, mostly snoring, not snorkeling, but snoring. We took good care of him… Which was clearly a sacrifice….. After all of that hard work, there’s not much energy for anything else….

4

Saving Prouty Garden

Dear Boston Children’s Hospital, I’m a small town girl who grew up to be a small town woman who then became the mom of a child who needs big city doctors. My son Aidan has complex medical needs and sees several doctors at Boston Children’s Hospital. We have faith in their expertise and have been impressed with their commitment to the whole family. Aidan had surgery at Children’s this winter. This event brought with it...

2

Thankful Thursday

Today I’m thankful it’s just a sprain. Yes, Aidan fell out of his bed and, of course, it could have been so much worse. I’m also frustrated that after weeks of recovering from major orthopedic surgery Aidan is off of his feet again. We had just been adding all sorts of regular walking to his routine. But I’m thankful it will be for a short while. And I’m thankful that Aidan is motivated to walk....