My life with the Sullivan boys

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...

My mom requested I write about Ryan. I don't normally take "requests" but I thought about it. I don't write about Ryan because I don't ever worry about Ryan. Ryan gives me almost nothing but pure joy and gratitude. He has reached or exceeded every milestone. He walks, he talks, he runs, he smiles, he laughs, he kisses his brothers good night, he occasionally eats dirt, he eats his vegetables and sleeps through the night. I believe Ryan is a gift. We planned to have him, but that's all I had to do with it. He came out of me after I giggled (literally). I've been giggling ever since. Ryan makes me remember what normal is. Ryan makes me remember I don't have control over the outcome. He makes me remember that it's not all up to Owen to achieve everything, to stay healthy or be there for Dermot when they all grow up. Ryan loves his brothers and wants to be like them. I remember the first time I saw Ryan climb into Dermot's stander I cringed, but t...

So it's May 19th. I signed up for the Minneapolis Half Marathon on June 6th. I'm not running. I'm done shaming myself. But truth be told, life gets in the way. That's why none of my plans are ever concrete. I've driven myself crazy trying to control the events and circumstances in my life, anything to hold on to. It doesn't work. Someone gets sick, I don't sleep for a week. Someone else gets sick, I don't sleep. Try running after four hours of interrupted sleep. It's not fun. I have been downplaying the emotional toll of a few recent occurrences in my life. Dermot got a feeding tube, every night I hook Dermot up to a pump that feeds him in his sleep so he gets adequate nutrition throughout a 24 hour period. Dermot is having trouble clearing his secretions, so tomorrow another machine will be delivered to my house to assist him in clearing his secretions. Dermot was in jeopardy of losing physical therapy time at school, I met with the school staff t...

Here I am, days before I become a mother for the first time. Here's Owen, I'm terrified and have no idea what I'm doing! I'm better now. Owen is a great kid. I'd just had a miscarriage a week prior to this picture being taken. This next photo shows Dermot only two months away.... Here's Dermot. Beautiful, I'm excited about my new guy. I knew how to take care a of a baby now. I can sit back and enjoy him. Life changes fast. Life changes in an instant. You sit down for dinner and life as you know it ends. The question of self-pity. Joan Didion Dermot's first seizure November 17, 2006 .