My life with the Sullivan boys

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/

My neck is sore. Somehow the giant stuffed frog that I'm using as a pillow just isn't cutting it. I'm lodged between the safety rail of Dermot's bed and the foam wedge that Dermot sleeps on to keep his head elevated. I'm listening to the soft cello of Yo Yo Ma playing the Bach concerto, a slight snore from Dermot's breath and my cat purring next to me. I received a gift tonight, I felt Dermot fall asleep. We were laying together, he was playing with my fingers, a few delicate whines later and he drifts off while holding my hands in his. My tears fall softly, tears of love and contentment. A few moments later, my cat appears on the bed and finds her spot in the crux of my side and begins to purr. She's predictable like that. I believe she smells the salt in the tears and knows where she's needed. Perhaps a servant of the man upstairs sent to comfort me. I felt that ache in my gut today, the one that never truly goes away. The one that tells me things ar...

Things are fine, things are routine. I watch two of my boys grow and develop at a lightening fast pace. The two year old is remarkable. I think to myself, are all two year-olds this amazing? Or am I just paying more attention? My six year old is growing into his own person. Full of joy and compassion, frustration and determination. Are all six year-olds like this? Or am I just paying more attention? I watch Dermot stay the same each day. Days filled with stretching, meds, equipment, lifting, drooling, and all the other minor irritants that eat at my sense of well being each day. I'm angry that these things don't allow me the patience for the everyday occurrences of life. Everything seems amplified and dampened all at once. Things that used to matter so much don't and things that shouldn't matter do. We took a trip down to Mayo Clinic a few weeks ago. We had a few tests done (EEG, Blood draw), saw a few doctors (metabolic/geneticist, a neurologist/epilepsy specialis...

So I did it. I took Dermot on a bike ride today. He smiled and I smiled too. I held a garage sale to raise funds for this $1000 bike trailer, I came within $80 and I smiled. Ever since Dermot was born I've been buying strollers. First was the Graco Duoglider, too long and hard to steer. Then there's the Dreamer Design jogger, too big! Then, a Joovy Double. Way too heavy, plus Dermot was already too big for it. An Inglesina Zippy, worked for a while, but didn't support Dermot's body enough. Then the BOB Double, loved it! Dermot's too big for it now. Now we use a Dreamer Design Double that I procured from ebay because they stopped making them in 2008. I'm guessing we'll be done with that one by next spring because Dermot's getting so big. Then, an Otto Bock Kimba. We still have this one, he uses it for school and getting around, but he's maxed out the growth in this one. What's next? A wheelchair. A real wheelchair. Gulp. 50+ lb...

"Why is he in that?" the delicate voice asked. All around me are children. Whizzing pass in all directions. One year olds plotting out their first steps with Grandma following their every move, toddlers running just because they can, and dozens of preschoolers replicating the motions of a beehive, all dressed in over sized bright colored t-shirts that loudly display which group they belong to. The delicate voice belongs to one of these preschoolers. Her t-shirt is green, as green as green can get. Standing next to her with a blank almost rude (if he wasn't three) stare on his face was another green t-shirt named Connor. First I tried to ignore this voice, with all the chaos at the museum I decided to plant myself and Dermot on a bench inside the exhibit room so I could still watch my other boys enjoy their play. She asked again, "why is he in that?" I summoned up some of my mommy sweetness and answered her. "He can't walk, this is how he gets ar...

There's a giant deer fly circling my head as I walk gingerly through the sunlight field that leads to the lake. I'm dressed in my beat up old flip flops and a ten year old bikini. Dermot lets out a small burp while we travel down to the beach, then unfortunately, he throws up on my chest. Oh well, we can rinse off in the lake. It's at least 50 more feet and my biceps are burning from carrying his 36 pound body all the way from my mom's deck. I'm overcome by fear. It sweeps over me like a wave. I stop to collect myself, as I continue on three or four other flies have joined the other in efforts to drive me completely insane. I stop at the incline. Twenty steps to the water. Fifteen of them are at a steep, dirt filled incline. "I hate this!" I say to myself. I look down in the water to see my husband playing joyfully with my six-year old. My step-dad is guiding my two-year old through the murky water. Smiles so big I can see all of their teeth. It's fu...