Category: Family Synapse

1

Are You Smarter Than a Fifth Grader?

Last year when we rennovated our house, I painted one of the hallway walls with white board paint. I thought it would be fun to quote song lyrics and lines of poetry and various bits of inspiration. It’s mostly been empty but this is what’s taking up space right now: So I may be smarter than a fifth grader but only by a little bit when it comes to science. With the results of Aidan’s...

0

Hard Hats and Tall Tales

Every now and then I ask my Facebook friends to have some fun with photo captions. If you friend us on Facebook you could join us too! Here’s the picture I posted a few weeks ago:   First place for an excellent Top Gun reference goes to Brandi:   I feel the need…the need for speed! First place for yes, this is absolutely going to happen goes to Amanda: Mom, you’re going to make Liam wear...

3

Waterless ALS Awareness

I believe that everyone has something to give and every gift matters. If you’ve been hanging around this blog for awhile, you know that our community built us an accessible home addition. It took financers and builders, cleaners and cooks, painters and designers and everyone in between. Our volunteers were aged between four and eighty. So this week’s Ice Bucket Challenge left me both very excited and a teeny tiny bit frustrated. First, if you...

5

A Day at the Museum

Last week Garreth and I decided to have a fun, memory making time just with Aidan. These activities can be difficult to plan. What will he really enjoy? What is nearby and accessible? What would be consider a special activity, outside the norm? We decided to go to our local children’s museum, and since we thought it best that he not run over the local children, we put him in his manual chair. Aidan was able to wheel around...

8

Run Like The Wind

We are a family that appreciates small accomplishments. We know what it really means to put one foot in front of the other, to bear weight, to shift weight, to stay balanced, and to keep moving. Bones working with muscle, body working with brain. We bear witness to that every day. We are also a family that knows how to celebrate big accomplishments. Like me getting up at 5 am. No joke, me and morning...

12

Independence Day

This time last year we were just finishing up our amazing home remodel. Our community came together to build us an accessible addition that would allow Aidan to roll around easily and us to shower him safely. To see that people really do want to help, that sometimes we all just need a way into each other’s lives, was truly life changing. The work days, conversations and shared meals, the asking and receiving – all...

7

What Waiting Looks Like

Garreth got kicked and pinned in the ribs yesterday. I got smacked in the face, a fairly regular occurance. Liam took it in the leg and Aidan’s finger was bitten until it bled. Family snuggle time in this house has its recreational hazards when seizures are involved. Aidan’s seizures are changing again. He drops his head now frequently when he drives, taking away his greatest skill. He tremors and stares quite a bit making meal...

4

Another Year Gone

It occured to me as I walked up to the school building with a batch of cookies for the teachers, that this would be my very last time here. Aidan is moving up to the next school. Eighth grade is housed at our district high school. Aidan is my youngest so there will be no more elementary school or middle school for me. It’s another milestone of moving on. I’m not quite sure I’m ready....

4

Medical Update

Aidan is coming down to his last two weeks on the Ketogenic diet. We have an appointment with his neuro doctor at the twelve week mark which is how long they ask you to give the diet for a trial period. Unfortunately, it has not worked to reduce his seizures. If anything, Aidan’s seizures are getting worse again in the sense that there is more variety and he cries at the end of them. I...

3

Tight vests and tall tales

I posted a picture again on Facebook and asked people to comment. This is me at the  Special Olympics and this is what people had to say about it: First place for turning me into a beer swilling runway model goes to Melissa: Our next model is styling the newest in Olympic fashions. The electric green Mom alert and always lovely mini vest – all to make you seem so much more together… and check...