My life with the Sullivan boys

I follow my eager five year old to the entrance of the unfamiliar building, "in here mama" he says. A flurry of activity is all around. Young fathers, toddlers all bundled up in winter gear and five and six year old boys sweaty and cold at the same time. "Daddy always goes to number 4 mommy", we push open the heavy metal door and find a section of the bench that isn't wet or blocked off by a little ones duffel bag. "Okay Owen, where do we begin?" I ask, completely overwhelmed. "This first mommy, then my knee pads." Ok, got it. I struggle for the next ten minutes to properly equip my son for his favorite activity. "Whew, we did it bud!" I cheer. "let's go mama", he commands as we walk thru the crowd of other young termites. I've suddenly become a hockey mom, I thought to myself. I wasn't prepared. Owen gets on to the ice and listens intently to his coach. I'm greatly impressed by his ability. Those skating l...

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!

There's a faint thud and then a loud cry from behind where I'm standing. Owen had lodged himself between the bathtub and the toilet, he slipped and out came the blood from right below his right eyebrow, his pure baby face was no longer pure. At ten months I thought to myself, it was to early for him so have a scar! As I began to chastise myself for being a bad mom, her car pulled up. I was running late and she and her son were already here. I ran out to the driveway to meet her, showed her what happened and started to cry. She tenderly reassured me that I was in fact not a bad mom and that he just needed a bandage. Okay, I can do that. She held Owen as I applied the virgin bandage to his eyebrow, and we were on our way. It was a Friday, we were on our way to "Movies for Moms" at the downtown theatre. It was a big deal for us when the boys were babies. We had an activity for the day, plus we could see a "grown-up" movie without the expense of a sitter. I look...

"Doctor, what's the worst case scenario for Dermot?" Joe asked as we were sitting in the epilepsy ward, January 2007. "worst case, your son will be wheelchair bound for the rest of his life", said the doctor. I've been filling out a lot of paper work lately for Dermot. We've started with a new physical therapist and I'm attempting to apply for TEFRA thru the county. It's a supplemental healthcare that we'd pay a premium based on our income, then we'd receive the benefits that kids on Medical Assistance receive. It pays for things like home modifications, van modifications, durable medical equipment, and ton of other things. The problem is that every form I fill out, every piece of equipment we purchase takes us another step away from normalcy. I'm usually okay with that, but today I'm sad about it. I've seen a lot of three year old's today. A typical three year old talks in complete sentences. A typical three year old is a...

insurance companies....Topamax...where did I park? where's the $ coming from? smile and try to remember that woman's name...I hate Jon and Kate plus 8...my arm is getting tired from holding this basket I should have gotten a cart, but then I would have spent too much money, I curse you Target!!!! check the visa bill...we haven't sold the casco house yet...my stomach hurts...I'm doubting my program because of my codependency...write this down before I forget...when does the childcare end? why is Dermot still sick? why does his body jerk and tremble when he has a fever? what is the Topamax doing to him? why is there not just one doctor instead of six in charge of Dermot's health? Is Dermot going to die before me? I'm calling the insurance company now.

I'm writing on a piece of paper in a plane on my way home from a weekend away in Chicago with my mom. Last night I was awoken by Joe calling at 4 a.m. Dermot had been having seizures every thirty seconds for the last half hour. I'm always amazed how I function in a crisis. No time to freak out. I know that the maximum time the doctor wants a seizure episode to last is 10 minutes, then we're supposed to take action. Joe was alone with the three kids. Two of them sleeping, as typical kids do at four o'clock in the morning, the other's brain, short circuiting every half minute. One: what's going on?!? Two: Focus Joe Three: time to administer the Diastat (rectal Valium), this step was hard. You see the whole time Dermot has had his disorder, we've never had to use this emergency medication. It's about two tablespoons of creamy medication packaged in a syringe that is inserted into Dermot's rectum. Four: call aunt Katy on the other phone, get her over to ...

So there's this other blog from a mom I read. She's got a daughter with a seizure disorder, she's wonderful about keeping you updated in the nuks and crannys of their lives and updates her blog frequently. I seem to be avoiding this blog. I have an excuse I suppose. We moved two weeks ago, five blocks away from where we were before. It seems like that should have made it easier, not so. Managing the three kids and the mayhem was a nearly impossible task. Moving day included two trips to the emergency vet for our youngest beagle, who decided to see if she could eat an entire bag of cat food, she only got through two pounds of a four pound bag, yuk. A VERY cranky, teething 10 month old also added to the mix, hurray! The saving grace was Owen was having a blast ALL-DAY at the Sayles household, what a great day for him! Two days before the big move was Dermot's quarterly neurologist appointment. At this appointment we discovered that Dermot had officially gained ten pounds ...

"Letter to Dermot" Dermot, I’ve been trying to put off this letter for quite some time. I just gave birth to your little brother and have realized how heartbroken I am over you. I look at pictures of you and get a tinge of sadness where I should get joy. I see the things you cannot do and the things you won’t be able to do. I’m so sad about it. I feel responsible, so much more than anyone else knows. I look back on the day you had your first seizure and I’m so angry with myself that I didn’t know what was happening. I feel like the length of time was my fault and that it caused more damage to your brain than was necessary. I’m so sorry. I know that you deserve the best in everything for your life and my regrets run deep. God has a plan for our family, I know. All of the challenges that you go through help make us stronger, but I wish more than anything that I could take all the pain away, all of the drugs, all of the therapy. I sometimes imagine you as a normal little guy get...

Am I doing enough? I ask that question to myself on a daily basis. You see I have help with the kids now. It makes a tremendous difference in our family's lives. I am no longer completely wiped out at the end of the day and I no longer dread the next day. I cross things off my "to-do" list every day and boy is that satisfying. I make dinner almost every night for the family and I get to take a shower every day! If your a mom you'll completely understand that one. But there's a nagging feeling I've had for the last month or so. Am I doing enough? Joe is in the second month of Dermot's Hyperbaric Oxygen treatment, that means he takes Dermot out of the house from noon to 3 p.m. everyday. It's weird, not hearing his singing or having to wonder when he's going to wake up from his nap. Is the therapy working? Do we notice any differences? Not really. If anything, I've noticed his seizure activity has increased and he seems more out of it. I can't...

Ryan and I are taking swimming lessons together and he's having a blast! Puts his face in the water himself and splashes like crazy. He also got his very first ear infection, and he made it a double! He's recovering from it, let's hope the sleeping habits will improve. Joe and I are walking zombies from being up with him all night! Babies are great, right?

So Owen and I just went to visit his new school for next fall. I can't believe they make you register so early! He loved his classroom, he's excited to ride the bus and eat lunch at school! He's growing up so fast. What a blessing he is.

Dermot's third day of school is tomorrow. He goes to a new transition class every Friday morning until the end of the school year. I think when they say transition, it's a transition for the parents. It was very strange to drop him off for the first time and just leave. I was worried about if he started to cry, or get upset. Would the teachers know how to calm him down? Would they hold him like I do? It's one of those moments when I have to Let go and Let God... He's doing really well. There's at least one adult per child, he gets a morning stretch, a workout, book time and a song of the day. What more could you ask for?

Dermot started his hyperbaric oxygen therapy this past Monday. He'll go Monday thru Friday for the next eight weeks. We're not hoping for a miracle, but we are wishing for more alertness and better cognitive ability. We'll see. See link for more information: www.lifeforcetherapiesusa.com I'll keep you posted on his progress.