Category: Family Synapse

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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....

7

Dear Insurance

So Aidan fell out of bed this weekend. We knew it would happen eventually because the rails on his bed are not appropriate for him. Actually, they’re a joke. I took Aidan to the Emergency Department mostly because I wanted documentation for the insurance company. He had a bloody mouth. He was miserable and in continual pain for the day. This morning when he woke up, Aidan made it pretty clear that his foot was...

4

Thankful Thursday – City Driver

I drove to Boston this week for a follow up appointment for Aidan. ¬†I don’t drive in the city. Ever. Aidan was in Boston for a month when he was born and I never ever drove to see him. I know, I know, I’m a sucky mother. I only went with Garreth on the weekends. Most of our doctors are in Maine and I made that decision when Aidan was born specifically because I knew...

1

Thankful Thursday – Refocus

Aidan has been falling into bed exhausted at night. Recovery, learning to walk again, is hard work. He fusses and complains, until at last I mercifully snug him into his bed.   Garreth hasn’t played guitar in years, but he picked it up again this week. He’s been playing guitar to Aidan and singing about bedtime and school days and stinky toes. Aidan is completely mesmerized by Daddy’s music. He will either hold down a...

4

Sad

“What does Aidan understand?” It’s the $64,000 question; one I ask myself every day. Because Aidan doesn’t have expressive language skills, or, he can’t tell us what he understands and doesn’t understand, I’ve become a detectives of sorts. I watch Aidan’s facial expressions, follow his eyes, try to decipher his actions, look for patterns of behavior. There’s always a chance I could be wrong, that I’m assigning meaning to something that’s not there. Did he...

1

Seven Snippets

— 1 — It’s been a busy few weeks on the blog with Purple Day, Sibling-Palooza, and Undiagnosed Children’s Day. I just can’t pass up these educational opportunities as I believe telling our stories makes a difference. Thank-you all for joining us. — 2 — Aidan is still recovering from surgery. His 5 weeks follow up appointment went well. They moved his legs around quite a bit and he only winced a bit. Dr. Hip...