My life with the Sullivan boys

"How are you monitoring his seizures when you're head is in that book?" I asked my husband mid-morning a few days ago... "Exactly the same way you do when you're Facebooking, online shopping and whatever else you do on your phone..." he snapped back, as if he was pulling his comeback out of his back pocket, almost relieved to have been able to finally use it. Things are getting stressful. Things are progressing faster than we imagined. Marriage is hard work. I know I've heard many people say that in the past, I've blown them of for using such a lame cliche over and over. But, marriage is HARD WORK. Staying married while having a child with severe and chronic health issues is nearly impossible work. I remember when Dermot had just turned one. About the time I started reading a ton of books on parenting kids with special needs, I read a frightening statistic. 80% of all couples with special needs children divorce . Holy shit. Those odds...

It begins with an email. An announcement. A mother has lost her child. Another mother. A freak accident, no explanation that makes any sense to anyone. The phone calls between friends begin. The tears. The "what should I do?" The "I can't imagine." The shock. The walking through the grocery store in a daze because you can't seem to comprehend why a little girl had to die. I don't pretend to be best friend's with her mother, but I do call her a friend. When I think of her face, I see a smile and a warm greeting. She always walks toward me, not away. She doesn't deserve this heartbreak. Her daughter was in my son's class two years in a row. I was disappointed when I heard she wouldn't be a classmate this year. She was the one I had picked to grow up with Ryan. I teased him occasionally to remember to be nice to her because you were going to take her to prom someday. They live around the block from us. Her mom, dad and little brother...

I'm still here. Dermot is still here. On September 9th, Dermot's leg was broken at school. We've been home bound ever since. What does home bound mean? It means Dermot's in a rented reclining wheelchair that is next to impossible to put in my van. It is equipped with four flimsy nylon tie downs that make it "safe" to ride in a car. It also requires hastily purchased manual tie downs for $114 at the mobility van store. So Dermot hasn't left the house since September 13th when we returned from Gillette Specialty Hospital. Unless you count the one time my husband took him for a walk around our neighborhood (otherwise known as "utopia") which he admits was excruciatingly difficult from a fitting in standpoint. I'm working up my courage to take him for a walk this afternoon. We'll see how that goes. My fall as planned has not gone as planned at all. One nanny just delivered her first child (hooray for her, not hooray for the Sullivans)...

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....