My life with the Sullivan boys

It reads: "Good and gracious God, you have chosen the little ones, the world's poor and lowly, to become rich in faith and heirs to your Kingdom. Open our eyes to see your presence everywhere and in all people Open our ears to hear the challenge of your Word. Loose our tongues to speak words of encouragement and strength to those whose hearts are fearful and sing the mighty wonders of your love." I've been carrying around the program from last Sunday's church service in my purse because of this prayer. I looked at it while emptying out my purse last night. Here's the deal. This is the part that scares me the most. The most difficult part. Creating the new normal. In my journey with Dermot, I can't count on one hand the times I've hand to adjust to the new normal. Usually just when I get used to the new normal, it changes. Second week of school in full swing. Yoga classes attended, paddle board purchased, running partner found, the ...

I awoke with a right blown pupil. It was annoying as I was walking around the yard, taking the rented paddle board off the roof of the van and trying to read my facebook page on my phone. As my mom finished getting ready for the day, my step dad looked at my eyes and didn't seem particularly alarmed. Then my husband saw it and immediately said we needed to go get it checked out. I'd like to think that I'm schooled in the ways of all things medical, but not for own health. Never had it occurred to me that I would experience any health issues. So a blown right pupil was something I'd need to google. Which in hindsight was a mistake, as I saw the words "stroke and aneurysm" in the same paragraph. With me now in tears, Joe insisted on bringing me to the hospital, which wasn't going to work because besides me and a couple of paid caretakers, Joe was the only other person with the know how to care for Dermot. My mom reluctantly agreed to drive me, as sh...

He weighs 58 pounds. I know you're asking because its quite shocking to watch me lift his large limp body out of his wheelchair. I know I'm small. But please don't ask me while I'm lifting him, Dermot is heavy. We've got that covered. He's heavy for many reasons. His wheelchair alone weighs 87+ pounds, then factor in the TLSO brace, the fact that he can't assist me while I lift him and his 58 pounds, that equals heavy. But for some reason when you ask me how much he weighs it makes me think you're going to talk about how you can't believe I can still lift him, or how you worry about when I won't be able to lift him anymore. "What will she do?" I imagine you saying to your confidant at the end of the night. Is it pity? Beats me, but it feels like it. How about "what can I do to help?" instead? Or perhaps taking action on your own. Yes he's heavy, but reminding me of it isn't helpful. It reminds me that it's...

"Well that sucked" I said, after getting into the car after attending a graduation open house for a friend's son. I only just realized how upset I was this morning, while I was pruning my crab-apple tree in the front yard while still in my pajamas. So I'm trying to give people the benefit of the doubt, as I do in most cases, but c'mon. We load up the family in the wheelchair van that is becoming increasingly irritating to me. Drive the two mile course to get to our friend's house, find a parking spot where we can unload appropriately. We've arrive. It's full, there's a food truck parked blocking the driveway (and any chance of an accessible entrance for Dermot's wheelchair), so we off-road it, as we so commonly do. The guest of honor is on the driveway surrounded by his admirers, Parents not in site. We try to get Ryan to go and give him his card with a healthy sum of money in it, He's too shy. We find the basket to drop the cards a...

"We want to be clear, this extended school year isn't a program to be used as respite for the parents." She stated on the phone this afternoon. I was listening over the chaos of three dogs, and three boys who'd just recently returned home from school. I heard phrases like "maintain, not improve", "using resources more efficiently", "most kids are fine with this". All the while taking deep breaths, making sure to remind myself that she was not the enemy, she was not the decider, but still wondering, who is? For the past seven years my son has qualified for ESY (Extended School Year) which means summer school. For the past three years he has been allotted 72 hours per summer in services. So it's only natural that I'd expect the same this year. Right? I received the email from his teacher two days ago as a heads up, so I can schedule my summer activities. I glanced at the message, closed it on my phone and checked my instagram....

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...