Tagged: parenting

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Doctor vs. Nurse

So Aidan did a face plant this weekend and knocked one tooth out and one tooth up. This all happened while I was at a speaking engagement so Garreth did the whole Emergency Department visit on his own. Here’s what we learned. We need a visible, ready to grab one page medical history for Aidan. I tend to be his walking medical record and I’m seldom away from him…but still. Aidan has been a great...

1

Wonderful Weekend

This past weekend we attended a family weekend at a camp for kids with special powers. It was amazing, wonderful, and a great escape from reality for just a little while. It’s always great to be with other parents who “get it.” There’s an instant camaraderie and so much comfort in knowing we’re not alone. We had a chance to do fun camp things: and ridiculous camp things: (That’s an Oreo stuck on his forehead...

3

Yale in Review – Part 2

My last point for the Yale nurses came directly from Team Aidan’s own Dr. John Morrison’s promo video: Be the navigator. As I was preparing this presentation, I realized we have lots of navigators on S.S.Aidan and we need them all. That’s why we also need one captain (or two people acting as a unified force). We have to take in wisdom not only from the medical world, but the school and community world as...

2

Thankful Thursday

Today I’m thankful for opinions, well, maybe just Aidan’s opinion. I’ve been asking him each morning to choose a shirt to wear. I hold two up for him and he’ll reach for one. This was the third day he reached for the shirt on the left. So, I switched sides and asked again, “Do you really want to wear the blue shirt?” I swear I got a look. “Really, Mom?” He chose the blue shirt...

1

Independence Day

Aidan’s getting some wheels this year. (Wait, haven’t we already done that?) Aidan is a walking boy and that is a huge victory. The thing is, he walks short distances and requires some assistance. Right now we use a gait belt and hold one of his hands to help him get around. He can turn his body to tell you where to go (Remind me later to tell you about the stairs fiasco). So far...

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Counting Seizures Again

How many seizures is enough and how many is too many?  The right answer is one.  One is enough and one is too many.  I don’t have the luxury of that answer anymore.  We’re on week eight of Aidan’s new diet to control his seizures.  Garreth and I agreed not to work the numbers until September and then we would evaluate.  I’m not sure what the magic number is that we’re supposed to accept. One...

8

First Day of School

Aidan did two fabulous things for me this morning before school. First, he smiled when I woke him at 5:45. While I was smiling on the outside, I assure you that’s not what I was doing on the inside. The other great thing he did was smile for Maya. Maya’s mom made a video of her speaking and signing so her teachers would know what she’s saying as she’s starting school for the first time....

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Good Enough

Do you beat yourself up for not doing enough, or not doing everything right?  I ebb and flow with this struggle.  In Aidan’s early years I worked myself into a frenzy to get the most learning in before developmental windows squeaked shut.  When I realized I was making myself crazy, I let myself off the hook and tried simply to be mom.  Truth be told, I took last year off from parenting as far as...

4

Guilty

So when it comes to whipping cream, maple syrup, and chocolate chip cookies, my parents raised me right. It’s the real thing or nothing at all. They hoodwinked us with lobster, convincing us that the legs were the best part. Real whipping cream is a staple in Aidan’s diet right now, and is in fact, medicinal. That means we have a big batch of it in our fridge at all times. Sometimes it calls out...

3

Champions

I’ve always seen myself as Aidan’s biggest champion. I have to be the one who believes in him most and fights for him hardest. That’s my job. But what about when I’m not? When Aidan was born I told his physical therapist that I wanted him to walk into kindergarten with whatever support he needed, but definitely walking. I gave her 5 years notice so I think that’s fair. We had no idea what the...