My life with the Sullivan boys

It's late on Christmas night. All are sleeping. I'm thinking of Christmases past. Wrapping presents with my mom. Coming home to my dad's after Christmas Eve at with my mom's family, my dad has midnight mass on the television, and my brother and I convince my dad to open presents before Christmas morning. The cat playing inside the tree and having it come crashing down. My brother and I finding the hiding spot in the front closet for all the presents. Avoiding my drunk uncle on Christmas eve. Faint memories of a Santa showing up for a visit at grandma's apartment. My aunt's beautiful joy filled smile, hugging me and always calling me honey. My cousins matching Christmas sweaters. My brother sick on the couch on Christmas eve. My dad's side of the family filling up the twenty foot table set up in the basement. My uncle teasing my dad as he walks in the door. My grandma taking the turkey out of the oven in the basement, because the oven upstairs is...

"Don't try and fight it, it will only get worse" she said. "Just let it happen and you will feel better."  Her advice was taken, and used at least seven times in the last ten days. Anxiety attacks. At 43 years old I haven't experienced one, until 10 days ago. I lay down in my bed, my husband already asleep for over two hours was resting comfortably, until my head hit the pillow. I started hyperventilating. I couldn't stop my breath or control its tempo. My husband woke and tried to wake me from my nightmare. "I'm awake" I wheezed from my rapid breathing. I stopped with a sudden sigh and three or four uncontrollable deep breaths, and then the tears started to flow. No sobbing, just tears racing down my temples and thru the crevices of my earlobes. I fell asleep surrounded by my husband, scared to death of what had just happened and hoping to God it wouldn't happen again. It has happened again, six more times.  Tonig...

I'm still waiting for the blender and the new running shoes to arrive that I ordered online last week. Children's hospital had free wi-fi and I had an ipad while I spent three days with Dermot in the hospital last weekend. He slept, I shopped. I found a fantastic deal on a new down coat in anticipation for this year's winter. Some new skinny cargo khakis and a v-neck merino wool sweater will also keep me fashionably warm this coming season. Plus the t-shirt on Etsy I ordered for a friend, (she's going to love it!) and the blender that has yet to arrive will make my morning smoothie ritual much easier. And of course the running shoes, I checked, they'll be at my house by Wednesday. I'll need those the most. I've been relying on my daily runs as therapy (along with the online shopping) to get me through this illness that Dermot is suffering through. So far he's missed two weeks of school, probably will miss a few days next week and my routine has com...

Thank you for making cookies while I was at the hospital. Thank you for rushing my other boys to your house so they didn't have to see the ambulance pick up their brother Thank you for changing your plans to stay with us Thank you for bringing me dinner at the hospital Thank you for offering to bring me lunch in the hospital Thank you for deciding that you should bring us dinner, and then doing it without asking if it was okay Thank you for rushing into my home, picking out what I needed and then driving it to me at the ER Thank you for telling me to always have a "go" bag ready for emergencies (next time) Thank you for picking my boys up and reading them stories before bed Thank you for flossing Ryan's teeth before bed Thank you for telling me you loved me while I was crying on the phone Thank you for buying me $50 worth of magazines to keep my mind occupied Thank you for calling me and leaving a voice mail Thank you for doing ALL the laundry before you ...

"Mom". "Yes, honey.." "Can we play that game where you let us say swear words and then don't get in trouble?" Ryan asked. "Ok, one word a piece. Go!" I agreed. "Bitches!" Ryan squealed. "Shit!" Owen shouted. "Oh Yeah, bitches!" I chimed in... I know I'm not winning the mother of the year award, but after a weekend like mine, I needed a laugh. Have you ever heard a six-year old shout, "Bitches!"? It's hilarious. This is day four of using Dermot's Diastat to stop his thirty minute-plus seizure episodes. Diastat is rectal valium. My husband and I have been alternating who has to shoot valium up Dermot's butt to make his seizures stop. This is absurd. In his eight years of life (his eighth birthday is tomorrow) we have had to use this medication three times. Now this weekend, we've used it four times, been to the ER once and have been in constant contact with his neurolo...

So there's always that feeling. If we bring him we'll be excluded or he'll be ignored. If we leave him at home, we'll be more approachable. But then we have the guilt of leaving him behind. We attended the annual neighborhood block party tonight. All of us. It takes a bit of gumption to roll up to the intersection that's been blocked off for the party. We go every year, this year wasn't the best. I know in my head that I shouldn't let any of my self conscious feelings bother me, I shouldn't let the stares keep me from being myself at all times, but tonight we were tired. And so was the party. Joe left early with Dermot, that made me sad. Nothing there for them. How to you shoot the shit with the neighborhood dudes while holding on to the handles of your son's wheelchair? How do you gather close together and listen to the neighborhood gossip with your mom friends while turning off Dermot's feeding pump? Much of this is being imagined by us...

"Find a happy place! Find a happy place! Find a happy place!"  One of many memorable quotes from Finding Nemo. This one sticks with me. Peach the starfish lives in a tank, she's stuck there. She watches the comings and goings of all the people in the dentist's office. When the dentist's niece, Darla, walks in and slams the door she yells "Find a happy place!" over and over. I recently found a new happy place. For years mine was at the end of the dock at my mom's lake house, laying in the sun while her german shepherd plopped her chin on my chaise lounge beside me. This place makes me feels warm and calm. But it also made me remember being free to be wherever I wanted to be. No kids or husband and I still had a decent enough figure to rock my daisy-print bikini. I'd drift off to my happy place while trying to meditate at the end of a yoga class or if I was struggling to get to sleep. Now, I found...

We heard the menu just days after his discharge from the hospital. At the pulmonologist's office, we sat with Dermot, giving the nurse any information she requested. He walked in with a calming authority that I remembered from 5 years prior while in the hospital for a nine day stint. I trusted this man. 30 years experience showed by his ability of direct eye contact, and honest opinions. This was not his first rodeo. He spent the next 45 minutes explaining the pulmonary system to us and what happens to a child when it isn't functioning properly. I heard the words limited , constricted , suffocate , aspiration and reflux . Not particularly in that order, but ten weeks later those are the words that stick out. He made a point to ask me again if I had made an appointment with palliative care. I had not. He encouraged me to do so. "I thought that was just for kids that were suffering from chronic pain?" I asked. "no, they also handle putting together a plan for ...

Yesterday I woke up and scooped a sweaty listless boy out of bed and put him in his chair. No brace today, I thought, just relax. He stayed that way for the rest of the day. Still, listless, pale. Now mind you we were coming off the eighteenth day of winter break and my other boys were going stir crazy in the sub zero weather. My husband, sick himself volunteered to stay with Dermot while I took my other boys out to the roller skating rink to meet up with some friends. We found one of the last parking spots at the rink and walked up to the old familiar steps of the fifty plus year old building. Looked exactly like it did when I went there as a child. We paid our admission and I got the boys some skates. I was nervous for my five year old. He'd only skated on ice and knew that he didn't pick it up quick, our time at the rink would be short. Owen was off in a flash, too cool to stay with mom and Ryan. He quickly found his friends and didn't look back until he wanted a s...