My life with the Sullivan boys

Three and a half years ago, I was alone. Alone with my anxiety and fear, alone with unanswered questions, alone with what to do next. Countless hours of surfing the Internet for others, others like me, mothers like me. I knew if I stayed alone with all of this, I wouldn't survive. I found one "special needs parenting" chat group that proved to be quite worthless. I called local organizations that advocate for kids with disabilities, there was a support group for Down Syndrome parents, quite a few groups for parents with kids on the Autism spectrum, another for ADHD. I called the local chapter for epilepsy, nothing, except a group for adults that had epilepsy. Alone I was. I asked Dermot's therapists if they knew of any place for someone like me, puzzled looks were my answer most of the time. I asked Dermot's teacher, she promised to connect me, if she found a match. I kept going. Talking to anyone I knew with "special kids". I met with my friend...

I just bought a wheelchair ramp. And I cried. I looked at this ramp several times online. I looked at my friend's ramp that's just like it. I looked at this ramp at a mobility store. It's heavy, 28 pounds heavy. I'll have to slide it in and out of my van, attach it to my bumper, unfold it, roll Dermot's wheelchair down it, then fold it back up and slide it back inside. I'll do this at least four times a day. I had to decide when I'd had enough, I had to decide when my back had had enough, and most alarmingly I had to decide when my bladder had had enough. Lifting a 68 pound awkward wheelchair up into my van while pressing it up against my bladder to get some leverage is unpleasant. There's hurdles in this journey as a special needs mom and I've discovered they come and go. Some are easy and I don't give them much thought and some I have to sit with for a while, let them fester or grow. Then I overcome. The ramp means more people will look, th...

I want you to notice everything. I want you to notice how your child smiles. I want you to notice how your child bends down to pick something up, watch him as his knees bend perfectly, aligning with his hips, pay close attention while his hand reaches for the object, focus in on how his fingers come together quite effortlessly to grab the object, then he's up. Notice every time he looks into your eyes and really sees you. I want you to notice whenever he calls you "mom" or "mama" or "mommy". I want you to feel every hug, every kiss. I want you to notice how he eats the cookie you just gave him, crumbs all over the floor, gone in two bites. I want you to get teary eyed when he runs away giggling his head off because he thinks you're going to chase him. Hear the footsteps? I want you to. I want you to notice when he says a word you've never heard him say before, even if that word is "poopy". I want you to notice how easily he ca...

I've written many essays in my head. There's the one about being embarrassed by Dermot throwing up in the hospital cafeteria, or the one about friends and how they've changed over the years, or the story about the man I met at the hospital with the nineteen year old son with Dermot-like disabilities or my favorite, the way I use chocolate chip cookies as therapy. I sit in waiting rooms and write in my head, by the time I get home the details are lost or the energy has left me. I sit awake in bed staring at the ceiling knowing what I want to write, then I get out of bed, start up the computer and my words have left my head. I've been struck by how profoundly sad I am. I am really sad. The challenges keep coming, changing. I've learned many coping mechanisms, I've found a higher power to run the show, I seek out help from support groups and therapists, I volunteer to help others. All of these things make me feel better, but to my bitter disappointment, they do...

A few days ago I listed that I was counting seizures in my status update on my facebook page. I got a outpouring of concern and kind words. I wondered what would happen if I said that I was counting seizures in my status update everyday. Would the same people give me the same comments everyday? Would I get new comments from new friends each day? Would people just assume there was a bug in the system and ignore it? I remember with glaring clarity Dermot's first seizure, it lasted for over two and a half hours and ended in a trip to a the ER and multiple drugs to stop it. My heart was racing, I was shaking uncontrollably while huddled in the corner holding his onesie in my hands while the doctors and nurses worked on him. Now, nearly three and a half years later I watch Dermot every day. I watch a seizure rudely interrupt a beautiful smile. I watch a seizure destroy his concentration while he plays with a new toy. I watch a seizure intrude his sleep. I watch a seizure jolt his e...

I'd seen it a few times before. We used to go on summer camping trips, he'd cook breakfast on it. Mostly hash browns, breakfast sausage, scrambled eggs coated with the remains of the sausage. Toast made with the wire stand. But this time we weren't camping, we were in our kitchen. I wondered why it was on top of the gas stove that he usually cooked on. He made it sound like we were camping inside, like it was fun. At 10 years old, I didn't figure out that the gas bill hadn't been paid. A few years later as a teenager I would become ashamed of things in my life. My clothes weren't the right brand, my car was a rusty beater, my parents weren't together. I would remember the camp stove in the kitchen and look down upon my father for not providing for us. I would wish for things to be like my best friend Jenny's family. Parents still together, dad brought home a lot of money, mom was home when she'd return from school. Back then, I wanted all of those ...

We left Mayo clinic today. We will go back next week. Muscle biopsy will confirm. A mitochondrial disorder. Rare. Not surprised. Not happy. Not sad. Not much left to say tonight. http://www.umdf.org/