Category: Family Synapse

15

Special Powers

Thanks to Max’s Mom for this brilliant idea.  Having to answer the question, “What’s wrong with your kid?” can evoke lots of different emotions.  For the most part, I enjoy the opportunity to educate people.  The words disability or special needs are at the forefront of conversation.  On a snarky day I may have inside thoughts such as, “Nothing.  What’s wrong with yours?”  Aidan’s disability is clearly visible.  Max’s Mom came up with the great...

1

People First Language – Part One

You are not cancer.  You are the mother of boys who sometimes blow things up.  You are a sailor, an athlete with a cause. He is not that Downs boy and she is not that Epileptic.  Aidan is a drummer, biker, and horseback rider.  He is a boy who was born with a significant developmental disability.  All kinds of people have disabilities but they don’t need to be defined by nor limited by their disability....

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Congratulations!!

Congratulations to our raffle winners!!! They are: Ashley A., MaryBeth R., Sandy W., Lorraine D., Leslie S., Joe K., Mike F., Michelle D., and Karen B. Thanks for your support!!  And thank-you to the restaurants that have supported us: Dolphin Striker, Fogarty’s, Friendly Toast, Radicis, Strafford Farms, River House, Boathouse, Pepperland Cafe, Furys.

1

The Notebook – A Hospital Treasure

Since Aidan was in the hospital for 3 months and I had a toddler at the time, we were not able to be with Aidan all the time. There were friends who wanted to do something, and it seemed at that moment, the most wonderful thing they could do is hold Aidan and talk to him when I couldn’t be there. We put a notebook by his bed for people to record whatever they wanted....

2

My YaYa Hospital Moment

Yes, I have my YaYa sisterhood.  These are 6 fabulous women brought together 11 years ago by my sister.  Some of us knew each other and some of us didn’t.  Now we vow to spend at least 1 weekend a year together, no significant others nor children. The relationships outside of that weekend vary a great deal but when we come together, it’s really amazing.  So we planned a YaYa weekend for 2 weeks after...

7

Another Hospital Moment

I have been singing with Voices from the Heart for 11 years. It’s a chorus made up of 200 women singing songs from all over the world. I was singing with them when Aidan was born and spent 3 months in the hospital. We had been learning a song by Charles Tindley: Courage my soul and let me journey on, though the night is dark and I am far from home. Praise be to God,...

3

Hospital Moments

When Aidan was born he was in the hospital for 3 months. This was obviously a time of crisis for our family. It was a time full of fear, drama, and even humor. This is the drama story. Aidan had been put on a ventilator to breathe. I couldn’t hold him during this time because tubes were everywhere. One evening at the change of shift Aidan started to extubate himself. He wiggled his tube free....

3

209 miles, 209 steps, 209 tears and $3365!!!!

I’m humbled, amazed, and grateful for what the Powerthirst runners have done for us as a family.  When I made our need for an accessible van known to our family and friends, I never imagined this level of support.  The amount of encouragement from the runners has been incredible.  Every time Aidan climbed his steps at home we cheered for a runner as we knew they’d be running for us.  We had a moment at...

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THEY’RE COOOMMMMINGGG!!!!!

Yeah Team Powerthirst!!!  The runners are coming in!!!!!  Meet us at Hampton Beach State Park (take 101 and turn left at end, go for about 1.5 miles) around 3:30 today.  Runners will be in btw 3:30-4 and there is lots of fun chaos.  Join us!!!!  We’ll have balloons!!!!

10

She’s My Tribe

I had a great meeting yesterday with a friend, family leader, and fellow parent of children with special needs.  It was absolutely wonderful to speak without translation.  I can’t share much of what we said because it would come off as seemingly inappropriate dark humor.  The truth is, if we don’t laugh, we’ll cry.  If I had a dime for every time I said, “No way!! They said that?”  I will share this.  My friend...