My life with the Sullivan boys

November is Epilepsy Awareness Month. I'd like to post this link to the 60 minutes profile that aired within the last month. I found it useful to watch. I also thought it was my responsibility to do my part to inform the masses. Enjoy!

Thanks to TEFRA and the CADI Waiver , here's the benefits... Van modification: With the push of a button the seat pivots and lowers down to the same level as Dermot's stroller, saves my back a ton of wear and tear. Home modifications: Instead of ramps in the garage, that require a foot of length for every inch, we opted for short steps to get Dermot's chair in and out of the house, works great! Bath lift This one was a bit hard to stomach. It meant that I was relying on a machine to lift my son in and out of the tub. That's my job, right? Well I tried it for the second time tonight and it works just fine. Dermot was able to float and kick around for the first time in months. We've had to give him showers in his bath chair for a while now. Little boys need baths. Dermot can have them again, hooray! Feeding chair A few months ago Dermot was still eating his meals in an old Fisher Price high chair, he wasn't supported enough and he was way too tall for it. This cha...

"i can't imagine having a child with disabilites" I get that a lot. So do my other special needs mamas. The truth is I can't imagine it either. Never in my lifetime had I even thought that it would be a possibilty. If you've ever read the poem "Road Map To Holland" ( google it ), it describes the reality of having a child with disabilites like going to a country other than the one you planned on. I personally hate that poem. I think the author wrote it to make the people who don't have kids with disabilties feel better, comforted. Believe me, it's not at all like going to Holland instead of Italy. I've been to both of those places. They are not that different. Just the language and the food. My worries before special needs: Owen only slept for ten hours last night Owen has a runny nose Owen started throwing toys at other kids This stroller doesn't fit in the back of my Mercedes Benz Don't give him peanut butter before age three! I hop...

It's 3:14 p.m., I'm walking feverishly down Edina Blvd. with Dermot and Ryan stuffed into the double jogger, the beagles leashes wrapped around my last two fingers of my left hand. I've got 12 minutes to get to the bus stop to pick up my 5 year old from the temporary bus stop. My phone rings loudly from the stroller's storage pocket, I check the caller ID, MN Epilepsy Group....I answer it quickly. As I answer one of the beagles decides to poop. "hi Sue it's Vicki from Dr. Ritter's office. We have the results of Dermot's EEG last week." "that's great" I say. I've been waiting eight days to find out what kind of seizures Dermot is now having. You see, this past summer he was seizure free for about 2-1/2 months. It was glorious, to say the least. Then, as it has happened before, the seizures started to come back. The first few days he'd have just one or two, the week after that we were up to around ten and now, unfortunately we...

So Dermot started his first day of ECSE preschool today. Monday thru Thursday mornings he'll be there. Weird. His first day went great, he's got four other little boys with varying degrees of abilities in his class. He thrives on all of the activity and loves his teacher.

Grandpa Kessler made a custom bed just for Dermot! It's almost like big brother Owen's. But this one is higher, to save my back and it includes a removable railing for safety. I'm very grateful I have an accomplished carpenter for a father. Check out his website Franz GT Kessler Designs . Dermot loves it, I swear he's sleeping better too!