Friday, December 26, 2014

So this is Christmas.

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 full.
The candy dish full of ribbon and pillow shaped candies.

My brother calling at the last minute to say he's in Vegas instead.
Road trip to Fond du Lac.
Watching Owen share stockings with the cousins.
Grandma's Christmas crowns and crackers.
The ice storm brings everyone to us.
The last Christmas with Grandma before Arizona.
Another Christmas without my brother.
Another Christmas without my dad.
Another Christmas without my mom.
Complaints about gifts.
No gifts.
No phone calls.
My family.
My in-laws.
My children.
My husband.
My new Christmas.

Each Christmas brings back old memories, old expectations, old disappointments, old joys.
Each Christmas brings new memories, new expectations, new disappointments, new joys.

My struggle is to put all of these together, make sense of them all. To be grateful for all of it. For the old to stay in the past, to realize that is where I came from. Not where I am today.

To make the new Christmas memories matter just as much as the past. Know that the people I celebrate with today are my family, to not feel apart from or different. To be myself and enjoy the here and now.

Here's to trying!

Merry Christmas.

Wednesday, November 5, 2014

Feel Better

"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. 

Tonight in fact.

The cat peed on my couch (I've been neglecting her litter box)
The contractors left the house with a coat of dust on everything (second day of demo for the building of Dermot's new "care suite")
Half the lights in the main level aren't functioning (same contractors)
The wireless signal went down (same contractors)
Dermot was exhibiting strange behavior that may or may not have been a seizure so we gave him rectal Valium, just in case.
and the PTO event I've been working on is only 5 days away.

I excused myself, went and sat on my bed and did my hyperventilating, deep sighs and tears. Then I felt a bit more grounded. 

I apologized to my husband for acting like a freak show. I apologized to my six year old for sharing so many swear words that are not okay for him to hear or say. I thanked my ten year old for being such a big help to me and always supplying me with a hug.

Then, I returned to the status quo.

I keep waiting for things to get easier so I'll feel better. But things won’t get easier, just more difficult. 

The choices I'm forced to make are monumental. I can't breathe sometimes. So many decisions about Dermot and his quality of life. Our quality of life.

G-J Tube vs. G-tube
TLSO Brace vs. spinal fusion surgery
High-Flow Oxygen vs. blow by O2
Seizures vs. five seizure meds at once
And the dreaded DNR order (not in the immediate future) that the social worker keeps mentioning quietly...

So at this point, in all of this, it’s all about letting it happen. Because it will happen.

And I will feel better.

Saturday, September 20, 2014


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 come to a halt. Or if it's been longer than two weeks, perhaps this IS my new routine?

Wake up in the morning, see Owen and Ryan off to school and drink my coffee and wait for Dermot to wake up. Make my green smoothie from kale, avocado and many other healthy ingredients, check on Dermot. Give him his morning meds while he is still sleeping. Finish my smoothie, drink my second cup of coffee, change out of my pajamas and into my running clothes. Tend to Dermot, who has just woken at ten a.m.. Let him cough out his 3/4 cup of morning mucus, change his diaper, put on clean loose fitting clothes and start the new daily routine of constant suctioning, nebulizing, using the respiratory vest, and changing his position every 30 minutes to ensure the mucus doesn't settle and his O2 level doesn't drop below 90. All this while watching for seizures...

Joe arrives home for lunch, I escape to my friend's house to collect her Vizsla for my therapy session, a 3-5 mile sprint around the neighborhood. Eminem and Busta Rhymes have kept my pace strong and angry, when I finish I'm calm and sweaty. Ready to return to my son, the machines and the new routine.

I've decided there isn't much value in planning his return to school. I learned long ago that expectations only cause trouble. "This too shall pass" is my motto. "Be Still" is my mantra.

The absurdity of this horrible illness is that we are getting used to it. We are beginning to think that an 88 O2 is pretty good. Only having to suction every 30 minutes is "better" than yesterday. This is how we roll. We have to, or we'll fall apart. I'll save that for later. Probably when I'm not expecting it at some wildly inappropriate time.

For now, I will try my best not to spend too much money while online shopping. I'll be out there running my troubles away with my new favorite running buddy.

Hoping my best for an end to this new routine. Hoping.

Monday, September 15, 2014

Thank you notes

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 left
Thank you for checking in with me everyday since, to see how we are
Thank you for letting me run with your dog
Thank you for buying dinner at Snuffy's while my husband took a shift in the hospital
Thank you for sending me pictures of my boys at the parade that I missed
Thank you for driving Owen home from baseball
Thank you for stopping me mid-run in the parking lot and giving me a hug
Thank you for explaining the intricacies of the pulmonary system
Thank you for shaking my hand each morning on rounds
Thank you for not waking me up in the middle of the night while you were checking his vitals
Thank you for offering to fly up from Texas to help our family get through this
Thank you for well wishes on Facebook
Thank you for for your prayers
Thank you for offering whatever we needed
Thank you for not pretending everything was okay
Thank you for laughing with me
Thank you for the hilarious texting banter while we were waiting in the ER
Thank you for reminding me how loved our family is
Thank you for going to Target to buy your 8 year old grandson more diapers
Thank you for the amazing chili and all fixings
Thank you for offering to take the boys with your boys
Thank you for bringing the boys to the corn maze ALL-DAY
Thank you for finding a replacement for my PTO post
Thank you for checking in with me after I abruptly left your house because of Dermot's seizures
Thank you for not fighting me when I requested a round of antibiotics
Thank you for picking up the phone on the first ring
Thank you for having Dermot's entire class sing a get well song, video taping it and then posting it on YouTube so Dermot could watch it while he was laying in bed
Thank you for being my village.

Each time we have a crisis I am reminded how loved we are. I am reminded that we are not alone in this journey with Dermot. We have family in town, even if they are not related. It's more than okay to ask for help. To be specific. Because in doing so, I am helping you be of service. Because then you can feel less powerless. You can step up and make a difference. However big or small your deed. You helped us. You will be called upon again as we go on this road with Dermot. You are valued, appreciated and loved by us. You share our pain, our heavy load, our joy, our uncertain future.

Thank you.

Monday, July 21, 2014


"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 neurologist (who's just as clueless as we are as to what is going on...)

Today we had a great session with Dermot's speech therapist and expelled tons of mucus after some draining techniques. Unfortunately, his breathing grew more shallow and his O2 levels dropped to between 87 and 92. I started his blow-by oxygen and called the pulmonologist. Antibiotics for the mucus and fingers crossed that the infection is somehow causing his excessive seizures.

I'm exhausted. I'm resigned. I'm numb.I'm tired of being a nurse without any formal training. So many of the decisions I'm forced to make are completely over my head, I make them and hope that I've done the right thing.

Do we take Dermot to the hospital or not? Do I call the doctor or not? Do I give him another shot of valium or not? Mother's instinct? Who knows. Blind luck? Probably.

This is the part where I start writing about how sad I am about all the things I can't do with my family because of Dermot's condition. Or perhaps how I've become a better person because of my experiences and that Dermot is a gift to our family. Really?

Maybe my other boys will gain a level of compassion from their brother that they wouldn't have otherwise.

Maybe I have more friends and lasting relationships that I ever did before.

Maybe there's some great value in this entire experience that has nothing to do with me.

But what I know tonight, is that this special needs motherhood thing is more difficult than anything I've ever imagined.

There's no possible way to predict what my life looks like in five or even ten years. I live day to day.
Will I be grieving the loss of my son? Will I be living with Dermot as a 100+ pound teenager armed with a deeper level of acceptance than I have now? Will I be in the nut house after suffering my third nervous breakdown?

Who knows.

I write so that you'll understand what all of this is like for the otherwise average family. What sacrifices we make everyday. The pain I feel at different degrees, depending on the health of my beloved Dermot. How badly I want to be like the average mom. The one who's oblivious to struggle, the one with three healthy kids who complains about being too busy driving them all around to their numerous activities.

I am not that average person, maybe I never was.

So, every once in a while, I let my boys swear because I think it's funny.

And funny is worth it.

Sunday, June 22, 2014

What matters.

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, but it feels real. If you don't know me, are you going to walk up and introduce yourself while I'm wiping drool off my son's chin?

If it were me, ten years ago, I wouldn't have gotten near me and Dermot now. Too different, too scary.

I give people the benefit of the doubt most times because I remember who I was a few years back before I entered the land of disabilities. But at some point I'm going to need to decide that what I think other people might think of Dermot and or my family just doesn't matter. What I think of my family is what matters.

I love my family.
I love that my boys hold Dermot hand while he's having a seizure.
I love that my kids point out Dermot's past classmate with Down syndrome and go talk to her.
I love that they dared me to go off the high dive at the pool and I did.
I love that my oldest wells up in tears when he talks about his brother.
I love that my youngest showed a friend how to turn off Dermot's feeding pump when it's beeping.
I love when Dermot's classmates come and say hi to him when we're out in public.
I love that we all hold hands when we say grace.
I love when we dance. All of us. Together.

That's what matters.

Sunday, May 4, 2014

Happy Place

"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 a new happy place. 

I was blessed with the privilege of going away on a girls weekend last week. Something I've NEVER done. My friends and I agreed on this "experiential spa" in Austin Texas. I picked it because it had horses. The spa treatments and warm weather were an added plus. It had horses, and with the horses came REAL cowboys. Not kidding. Spurs that jingle and jingled, Stetson hats worn perfectly straight and  a Texas knowhow of all things equine.

I was sure to schedule a trail ride a few weeks in advance and insisted that my friends join me on the ride. Cowboy Matt drove us down to the stable where we met the horses we would ride. Mine was Hydro. A cross between an english draft horse and a quarter horse. 1500 lbs. of horse! He was quiet and kind, except, when he bit the horse in front of him to tell him to hurry up. After the ride I was stroking his mane and scratching his ears. He seemed to relax into a series of yawns and stretches. Cowboy Matt told me Hydro liked me...that was a good sign.

The next day I was to have my equine encounter. Not a trial ride this time. This was like a date with a horse. Get to know him, see what he's like, how far you could get with him...Turns out I after a last minute cancellation, I was the only guest registered for this experience. It was me, Hydro and a couple of cowboys teaching me about horses. 

We went out to the pasture where the horses were eating, led a saddleless Hydro to the hitching post. The cowboy handed me a brush and I began to groom my new friend. Careful to brush with the grain, I brushed all the dust and dirt I could off of him. I talked to him as I brushed him. I looked into his enormous brown eyes. After the brushing I lead him to the ring and watched the younger cowboy as he demonstrated what I would be doing next. He showed me the orange stick with the tiny flag on the end of it. He informed me where I was going to stand. How my posture would be. He told me confidence was the key. If I was confident, he said, Hydro would listen to me. My turn now.

So excited to be in the ring, I focused on Hydro's eyes, I wanted him to like me. The cowboy kept reminding me to watch his tail, not his eyes. Walk with my head high, and full of purpose. He asked me to have Hydro turn the other direction. I asked, he complied. Then I realized the cowboy had left the ring. It was just me and Hydro. Me and my 1500 pound friend. I asked him to walk faster, he trotted gracefully around the ring. I asked him to slow down, he slowed. Then, after a few more times of fast and slow, the cowboy told me to drop the orange stick and walk to the center of the ring. "Keep your back to Hydro", he demanded. "Ignore him", As I was trying not to pay attention to this beautiful creature, he slowly walked towards me and nudged his nose to my shoulder. 

That was it, this was my new happy place. This powerful creature became my friend. Trust and confidence brought him to my shoulder. Kindness and a scratch under his chin kept him by my side.

After sharing a few stories with the cowboys about wildlife encounters and a hilarious story about a donkey, I returned to the spa. Feeling blessed and calm.

I'm a week past my weekend away and my high is diminishing. Dermot has the mucus once again. I was feeling a bit like Peach today. Trapped in the fish bowl watching the people walk by on a beautiful day. Suctioning Dermot every few minutes, I was feeling defeated by reality. But my saving grace is that Hydro is real.. And I have a Happy Place to go back to whenever I'm trapped in the fishbowl.

Sunday, March 30, 2014


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 Dermot's future." he answered. I made a conscious note to tuck that comment far away in the back of my thoughts.

Time has passed, another round of antibiotics have been needed to ward off a recurring bout of mucus.As I was on the phone with his nurse six weeks after the visit she reminded me of the "menu" the doctor gave us. She suggested the antibiotics were only a bandaid for a larger problem, I agreed but wasn't allowing any conversation of the next item on the menu.

You see because of Dermot's extremely low muscle tone that affects his entire body, he has reflux. His food comes up into his throat, pools there and then, he aspirates it into his already compromised lungs. Over a matter of a few weeks, an infection occurs and the coughing begins. The mucus, from the coughing, pools in his throat and he aspirates that too. I feel as if I should draw a chart...

The antibiotics clear the mucus away for a few weeks and then it starts all over again. There are other items on the menu at the pulmonologist's office that we are welcome to try, but all of them come with side effects and risks.

A G-J tube was mentioned, but then we'd have to have Dermot hooked up to his feeding tube at all times. His food would need to be administered at such a slow rate because it would bypass the stomach and go directly into the small intestine bypassing the stomach all together.

Then there's some surgical procedure where they would readjust the angle of the stomach to reduce the reflux, but that major surgery and would not offer a guaranteed fix.

The next item on the menu is too expensive and unrealistic to think of right now so we return to the antibiotics for now.

Just a few weeks after our last round, the mucus is back, again.

I tell you all of this because, since the last conversation with the nurse, I've been a bit off.
Short tempered, quick to judge myself and those around me.
Filled with fear. The fear manifests itself by trying to hold on to some sense of control.
Shopping WAY too much, indulging in the chocolate covered caramel corn almost every night. Being overly concerned with my weight. Yelling at my boys a little too loud and not taking stock of all the good things I have.

And monitoring all of you. It's day two of spring break and  I am very aware of all of you who are lucky enough to travel somewhere with your entire family. I know that isn't a luxury I have anymore and I am sad about it.

This menu sucks, I wish we could go to a different restaurant.

Thursday, January 9, 2014


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 slushy.

Ryan took to the rink nervously and held my hand for a brief lap or two around the rink and then he was off. I was overjoyed! So brave and determined, of course I followed him closely and scooped him up when he plomped to the floor. But most of the time, he was free, gliding and chasing after the first grader whom he idolized.

Of course that meant I could skate, skate like I did when I was younger. Fast, free and weaving in and out of little kids and their parents if necessary. An amazing time.

We returned home three hours later, Dermot in the same spot we left him. Sleeping, pale and feverish. Surely it can't get worse I thought.

I was off on my next adventure. The P!NK concert with some girlfriends. Joe was feeling okay so I left with only the usual guilt I feel when I leave Dermot.

Concert, astonishing. I marveled at this woman's performance and delighted in her gracefully familiar demeanor she displayed with the crowd. She flew around the stadium, ALL around the stadium, lifted up high with wires, courage and talent oozed from her with every word she sang. I wondered if in another world I'd be as brave as her.

I sat in the back of my friend's car directing her back to my house.

"Are you going to be at the meeting tomorrow night?" She asked.
"Yep" I answered, "unless something horrible happens" to which both my friend's chuckled a bit.
"What could happen?" The other one asked.
"Nothing", I replied. "Unless Dermot has to go to the hospital or something, but I'm sure he'll be better tomorrow."

I was home at quarter to midnight, I didn't hit the pillow until well after one a.m., due to a few coughing bouts with my boy. Then I proceeded to get up about every forty five minutes the rest of the night. By 4:16 a.m. Dermot was sleeping comfortably and twelve minutes after that I was awoken by Ryan's tears and barking cough.

Finally at 6:30 it was Joe's turn to take watch. I slept another two hours and awoke to the same Dermot as before, except now he was coughing up a blood stained mucus and was in desperate need of a shower due to the antibiotics reeking havoc on his system.

I couldn't do another night like last night. I was in over my head. Checking O2 levels, suctioning, and counting ounces fed, I was done. Before we left for the emergency room his O2 was 85. Let's go.

I packed an unfamiliar bag and drove to the children's ER.

Influenza, that's it. But for a little guy like Dermot it's a big deal. We were admitted. He's on several new mediations and resting somewhat comfortably. Someone ELSE is helping him tonight.

I lay on the pull out futon, crying under my covers because the respiratory therapist has woken me up and I need to sleep desperately.

My fever is 100.2 and my cough has just begun.

Yet I still think of how much fun I had yesterday, flying through the skating rink and watching a brave performer fly through the sky.

Prayers for a restful night