My life with the Sullivan boys

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...

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 .

Windows down, Diet Coke in my hand, Tom Petty's "You wreck me" playing way too loud on my radio, I pop a handful of the newly purchased M & M's in my mouth. For a moment, just a brief moment, it felt as if I was sixteen again, driving my beat up Mazda GLC in the spring air. Then I drove by my reflection in an office building's windows and I saw it. The minivan. I'm thirty nine years old and I'm a mom. I got to thinking, what else am I? I'm a professional diaper changer, short order cook, personal care attendant, nurse, housekeeper, teacher, barber. All of these things I've become since being a mom. What did I used to be? An professional event planner, a pretty good cook, an avid runner, a yoga enthusiast, a huge Oasis fan, a rabid Timberwolves fan, a recovering alcoholic, a sister, a daughter, a wife. It's sad how those things just seemed to drop away slowly from my life. This week was a bit challenging, how do I entertain three kids all of...

Yesterday I was angry. I was angry that you asked me to drive you to the airport, I was angry that I did it. I was angry that your biggest problem today was your two-year old's temper tantrums. I was angry that you were agonizing over which cellular phone to purchase. I was angry when you told me how lucky I was to have a little boy who wouldn't wiggle out of my arms when I wanted to hold him. I was angry that you complained how tired you were after bringing all three kids to the zoo by yourself. I was angry that you keep telling me that in a few years things will be so much easier because my kids will be older. I was angry that you spent the winter in Arizona. I was angry when you thought your life was over because you broke up with your boyfriend. I was angry that you get to go to yoga class. I was angry that you keep telling me how sorry you are for me. I was angry that you called me a saint. I was angry that you get to take a shower EVERY day. I was angry that you didn'...

Dermot's surgery went well. Mom and dad have been learning all day how to use the tube and feed Dermot. He's been a champ through the whole process. Let's hope it's all worth it and that it will ultimately make him more comfortable. Thanks to all for your kind words and prayers. I feel truly blessed to have such great friends and family.

The Problem: Aspiration syndromes include all conditions in which foreign substances are inhaled into the lungs. Most commonly, aspiration syndromes involve oral or gastric contents associated with gastroesophageal reflux (GER) , swallowing dysfunction, neurological disorders, and structural abnormalities. Complications: Chronic lung disease may develop from repeated aspiration of refluxate. Pulmonary fibrosis may occur over time secondary to repeated aspiration of small volumes of gastric secretions, promoting a progressive fibrotic pulmonary response. Chronic bronchitis and bronchiectasis are also recognized complications. The Solution: Dear Parent/Guardian, Dermot Sullivan, has been scheduled for a procedure at Children's Minneapolis with Dr. XXXXXXX on 03/01/2010 for their PEG Insert Standard G Tube. Here are the items to be done to prepare for your child's procedure: HISTORY AND PHYSICAL EXAM: This must be completed within 7 days of your child's procedure. (This includ...

Just as I crossed the last thing off my grocery list, I heard a muffled chime from my purse. I thought to myself, I wonder if its Dermot's school. Not really believing it was, but teacher Jan was on the other end of the line. "Hi Sue, Laurie has administered the Diastat for Dermot", she said with a tinge of sadness in her voice. "Okay, I'll be right there" I said. I looked down at my full cart of much needed groceries and pushed them to the register. One part of me wanted to continue and check out as if nothing was happening, the other, wiser part said "get the hell out of here". Another abadoned cart at the grocery store. This time I call Joe, "I'll meet you there" he says. Three stoplights later and a quick jaunt on the highway and I'm there. Wiped the tears away and ask the receptionist for admittance to the special education wing of the school. I walk briskly to Dermot's classroom. The other little boys are having circle...

I'm a full glass of water. Don't tip me, don't bump me, and please don't add anything else to my glass. If you leave me alone I won't spill anything, I won't get anyone wet and I won't go anywhere. Occasionally when people ask me how I'm doing. My response is "I'm a full glass of water". I walk around my daily life functioning with a full head and a full heart. My head is full of tasks: grocery shopping, remember to send the order form in Owen's backpack, remember to set the DVR for LOST, call Jenn, Tanja, Dad, Pat, Rebecca and the Toyota service guy about some alarming recall? Get Dermot's prescription refilled, go to the hardware store for a toilet thing-a-ma-jingy, make cookies, fold the laundry, decide what's for dinner, Find a new physical therapist for Dermot, confirm his eye appointment, schedule flight to Arizona. Empty the dishwasher, fill the dishwasher, vacuum the dog hair off the living room couch... My heart is full...

Why Disability Parking? Disability parking is not a special privilege, but a necessity. The spaces are needed to give people with mobility limitations the same opportunities to use public or private facilities as people who do not have disabilities. Because some people cannot walk, or because a visible or hidden impairment makes walking difficult or hazardous, people with disabilities are at a disadvantage. This is particularly true in winter if disability parking is not provided or is left obstructed. Disability parking spaces also provide extra space for people in wheelchairs when getting in and out of a vehicle. Understand that misuse comes with consequences. Non-certified persons who park in disability parking spaces can be fined from $100-$200 Hmm, I can't even tell you a time when I've seen this law enforced. I remember driving before this mattered so much to me, it wouldn't even occur to me to use one of these spots. Unfortunately, since September 2009 I have witn...