My life with the Sullivan boys

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...