Tuesday, May 26, 2015

Alone at the party.

"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 after maneuvering thru the small well-dressed crowd on the rather slanted driveway. Joe decides we'll be more comfortable in the backyard, I agree, but getting back there is tough.

"Excuse us" Joe announces a few times. People move, but stay silent and study Dermot as his head is bobbing all directions due to the rough terrain. Okay, we've located the parents, who just happen to be the only adults we seem to know at the party. Five minutes in of standing alone as a family, the mother comes by to greet us, five minutes later she's moving on to her next task.

"Okay, I'd like to leave as soon as possible" I announce to my husband. "I get that", he relates back.

Ryan and Owen go to the neglected swing set and start swinging back and forth. Joe goes back to the inconvenient food truck to fill up on pizza. I am standing alone with Dermot in a crowd (which just happens to be the loneliest feeling ever) for what feels like an hour. The graduate's dad is close, we've only just texted a friendly banter last evening, so I'm sure he'll be by to greet us right after his current conversation. Nope. Walks the other direction. All I want to do, is leave. I don't make it a practice to put myself in vulnerable positions like this anymore. I've been here before. Hell I've written many posts about this very feeling before. I would like to leave. NOW.

Joe returns, we talk as a family when a mother comes and greets Dermot. Joe and I are skeptical and he mentions that her son has a chair that's similar to Dermot's. And he had a TLSO brace for his spine, and she misses when her son was this age because "you can still hold them when they're this small". Hmm. Okay... Joe asks where he is "oh, he's at home" she answers. She must have learned to keep him away from these situations as her son is 21 now. She points happily to her other two boys who are attending.

I wonder to myself if that's what we'll end up doing at some point. Leaving Dermot at home.

It would be a lot easier for us to leave him home. Then we wouldn't get stared at. We could drive the truck instead. we could walk thru the grass without a worry in the world. It would be easier to mingle, and for sure easier for people to introduce themselves to us. We could blend in. be like all the other people at the party.

But we aren't. We are a family who faces extraordinary challenges on a daily basis. Challenges that have made us into strong, compassionate, honest, kind people. The difference between us and them is that we wheel around our challenges, we wheel around our heartbreak, we wheel around our strength and compassion. You see our honesty sitting next to us. Feeding tube, spine brace, drool bib and all. They can hide their brokenness behind their perfect outfits and the expensive cars, we would never know about their imperfections unless they chose to share them. Lucky them. Or lucky us, I can't decide.

I do know that all of this takes courage and energy. Some days we have it and use it and it works out great, Some days we have it and use it and it works out NOT so great. The bummer is: we never know which way it will turn out until we try it. So we'll just keep trying it. Because sometimes it turns out great.




Saturday, February 21, 2015

He's a person.

"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...wait, what?!

I opened the message again. Dermot's ESY would be for three weeks towards the end of the summer for two and a half hours a day. This would add up to 30 hours for the entire summer session. Clearly this was a typo, right? How can the school just decide to cut over 50% of his summer programming without prior notice or even a formal email from the district?

Then I started the phone calls and emails. His teacher, seemed like her fault. Nope. The principal? Never called me back. The director of Student Services, who had coincidentally just stood me up for a meeting? I asked him, when he called to apologize for standing me up. He stated the policy, gave me the next steps. I called the teacher back, it still wasn't her fault. I called the ESY coordinator, left a message and tried to forget about it for the time being. After an unanswered email from the director today I suddenly got a call from coordinator. Are you still following all of this?

That's when I heard about how the function of the summer program. It is to make sure the child on the Individualized Education Plan (Dermot) doesn't LOSE skills over the summer, it's not to teach them NEW skills, just maintain.,.so that makes it okay to cut the program by more than half. Insert sarcasm here: So don't teach them anything new, just go over the same lesson all summer long...

She has invited me to call another IEP meeting to discuss my issues and also wanted to make sure I read page five on Dermot's IEP "where it states....."
Super.
IEP meetings are my favorite.
Now I can have ten other special education professionals tell me the same thing all in one room while I try to convince myself I'm not overreacting.

So you are reading this. Imagine if this was your child. Imagine if you were told that your "gifted and talented" young reader's program was being cut by half. Imagine if your child swimming teacher said her job was just to make sure the kid doesn't drown, but the swimming part could wait until the fall. Or perhaps the hockey association was only willing to teach your child to shoot the puck, but the skating could wait until next session. Outrage? Is that too strong of a word?

Here's the struggle that I, as a special needs parent, goes through. Someone tells me they are cutting a service for my "Severely Multiply Impaired" son. It's happened a few times.
I never get asked.
No one ever calls me up to discuss a solution.
There isn't an outline of who to call if you don't like your answer.
My instinct is to go right to the top.

I spend countless hours advocating for my son. Doctors appointments, therapy sessions, health insurance questions, medical equipment repairs, ensuring proper care for him when I cannot be with him. So when I get an email telling me yet ANOTHER thing I need to advocate for, I go to that place in my mind that tells me that they've given up on my son, He's a number, a calculation of service hours and state requirements.

He's not a number.

He's a person.

He's not a six page document with twelve signatures.

He's a person.

He's not a schedule you can manipulate to make the district more cohesive.

He's a person.

I'm getting tired of reminding people of that.







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.
Kenny.
Merlin.

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

Routine

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

Bitches.

"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 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

Menu

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

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

Monday, December 30, 2013

Complaints of the day.

Waiting for the doctor to call back so I can beg for stronger antibiotics.
Suction machine by my feet, on phone with clueless nurse.
PTO members coming later today. Event eleven days away.
Hockey practice this afternoon, not accessible.
Therapy for Dermot and Ryan this morning.
Back ache is increasing with every day of winter break that goes by.
-12 degree air temperature outside.
No warm weather vacation in sight.
Gift Certificate to spa for Christmas, but no time to use it.
Baby sitter's last day approaching fast.
Haven't spoke to my brother is over three years.
Yelled at my boys this morning for singing.
And I miss my mom.

Trying to stay positive, trying to stay sane.

My friend shared a quote with me a few weeks ago that really pissed me off. I went on Oprah's website to see if I could find it again so I could share it with all of you. I couldn't find it. But apparently the answer to all of my problems is Gratitude.

The quote was something like: "Everyone's life is as difficult as yours" or at least that's what I heard.

Pardon me while I suction the mucus from my kids throat.

I get what it was trying to say, but I'm having a hard time believing that the women across the street in the two million dollar house is having a hard time about life. Maybe she is. Maybe her parents aren't living anymore. Maybe her baby is the first one after a long string of miscarriages. Maybe she her brother died when she was younger. Maybe she's lonely because her doctor husband is never around. Maybe her friends are shallow and she's insecure about her appearance. Maybe she just spilled her oatmeal all over her exotic wood floor in her massive dining room. I'll never know.

What I know is my reality. My troubles. My pain. I'm not going to punish myself for complaining anymore. When things are tough they are really tough. They might even get worse. I know where the joy is. I have it and am able to find it in the least opportune times.

I watch for birds-Eagles, Pileated woodpeckers, Cooper's Hawks, House finches, Brown Creepers and even little Chickadees. I find beauty in these creatures. I look for beauty. I search out eye contact from strangers and smile. I watch little kids play in the snow. I'm good with the gratitude stuff.

I just needed to complain today...





Monday, November 18, 2013

Stunned

It's nearly eleven o'clock and I just finished working out. I dusted off the elliptical machine and went back and forth for 35 minutes.

I feel a little better. Seventy-two minutes ago I was leaving my therapist a message, asking her to remind me of this moment. Sitting on the edge of Dermot's bed, holding him on his side while I pat his back so the mucus he just coughed up can escape before he aspirates it. While holding him I was monitoring his O2 level and heart rate with the handy pulse oxcimeter we're renting from the medical supply company. I also had to make sure the snot that was coming out of his nose wasn't clogging the nasal cannula that pumps a 1/2 liter of oxygen into his lungs while he sleeps. Then he seizes, body stiff, eyes wide open, his gaze is forced upward.

I'm stunned. No other way to describe that moment. I just completed day five of staying home with a sick Dermot. Today I haven't left the house, yesterday I left for an hour to go to Target, same with the day before that. I am beyond frustrated. I'm stunned.

It all started a six weeks ago when we decided to switch seizure medications. We'd been on the same protocol for over a year and his seizures were getting more frequent. 10-20 a day were evolving into 30-40. We changed the medication, added one while slowly going off another. The other two he's on stayed the same. The seizures began to diminish, his muscle tone was better. Then the mucus. The coughing, the suctioning...

We've been suctioning him multiple times a day for weeks, we send the machine to school so the nurse can suction the mucus out of Dermot too. I decided it was not worth it. I'd rather have more seizures than ALL this mucus. We tried tapering off the new medication, the mucus continues, the seizures return.

Dermot and I visit the pediatrician. I go to the visit with a long list of concerns and requests. I got to the second item on my list before I started to cry. Again, this doctor has seen my tears countless times. Handed tissues to me, tries to help Dermot. This visit, he tells me he's been doing us a disservice. Never before was a Care Conference mentioned, never before has he spoke of a DNR order for Dermot, never before had he talked about Dermot's quality of life vs. medical procedures, surgeries or medications. Finally I felt like someone heard me.

I feel as if I've been sitting in the back of the classroom with my hand raised, but no one is calling on me. Pick me! Pick me!

So we left that appointment with a plan of action. Chest X-ray, nebulizer every four hours, mild anti-biotic every other day for 30 days.

Now, I have been at home with by boy for five days. He's vomiting, listless, sleepy and still coughing. Plus, I missed the doctor's call this afternoon and didn't get the message until it was too late to call.

So back to being stunned. this happens more lately. I cannot believe this is the life I live. I cannot believe I cope with this on a daily basis and am still sane. I get glimpses of me in the hallway mirror carrying Dermot, and I stop in my tracks. Stunned. THIS is my life. There's no denying it.

Drool, vomit, seizures, mucus, feeding pumps, oxygen tanks, wheelchairs, medications, syringes, nebulizers, ramp vans, insomnia, sore back.

Fuck.

Friday, September 20, 2013

As we were.

My kids are in school all day now so I've had time to relax a bit, reflect, organize. Pictures, school work, scrapbooks, old music.

The Lion and the Cobra. I do know Mandinka. That song, that song I remember. Before everything else. Before sobriety, before adulthood, before marriage and motherhood. Before Dermot.

I was sixteen, really drunk and dancing by myself, by choice at First Avenue. I was the shit. Wearing the borrowed white jeans that had made the circuit with the trendy girls in my click. Pinned at the ankle, cinched at the waist. Mandinka blasting in the enormous speakers. Nothing could touch me, nothing could hurt me. I was in the zone. Thirty minutes earlier I had thrown up most of the vodka I had slammed in the parking lot and decided I needed more from my boyfriend's stash because I wasn't drunk anymore. He agreed and I downed a bit more before entering the legendary club. Sunday's were sixteen and up and we were there every Sunday. Most nights like this ended in crisis. A sentence of two weeks grounded from my dad for being out after curfew was the usual fare.

Still sixteen, Brass Monkey. Indeed, this was another night of drunkenness. My brother sent to collect me from a neighborhood party. He pulled up in the hatchback that was due to be mine in two months, his best friend riding shotgun. Beastie Boys in full effect, and much to my delight a half full bottle of Jack Daniels behind the drivers seat. My brother's friend was bolting out the lyrics to this infamous song while I was taking healthy swigs of the bottle of Jack. This is the life I thought. I was the shit. Nothing could touch me. Nothing could hurt me. I was in the zone.

Eleven years later and eight years of sobriety under my belt, it was Lauren Hill, Doo Woop (That Thing) blasting privately into my head phones as I ran around Lake Calhoun on a perfect summer afternoon. Accidentally singing out loud as I ran, I garnered a few stares. I was the shit. Nothing could touch me. Nothing could hurt me. I was in the zone. I lived alone, had a boyfriend who smoked pot more than occasionally and I worked three jobs. My cat was there for me every night when I returned home. Most nights she'd suddenly attack me after being locked in a tiny one bedroom apartment all day without anyone else.

Joan Didion writes in her book The Year of Magical Thinking: "so wired that when we mourn our losses we also mourn, for better of worse, ourselves. As we were. As we are no longer, as we will one day not be at all."

I get it. Though these times in my life weren't perfect and at best were mediocre. They were times before the pain came, before the life as I know it now came to be. Before I had a child with daily seizures and travels in wheelchair who forces me out of my comfort zone and demands that I fight for him.

Before Quinn died suddenly and rocked a community that believed all of their kids were safe and sound.

Before our beloved Bill and Max fell out of the sky and left our lives forever.

So as I sort through and organize the clutter of my old life, I'm grateful for the music the brings those moments back and I can remember the better parts of before and reflect on how far I've come. I realize now I wouldn't do anything different.

"I do know Mandinka, still I can give you my heart..."

Sunday, August 18, 2013

The Cousins

At the reception the air was heavy and thick with grief, my boys were thankfully distracted by their Ipods and only looked up to sip from their lemonade or take a bite from their brownie. Finally the battery life drained to 0% and they looked around.

"Where is he?" they inquired.
"He's around, go look for him" I pleaded.

They found their cousin and continued the paper airplane making from the night prior, but it didn't seem to hold their attention long enough.

They returned to the ballroom to find their cousin's cousin from the other side of the family, standing with his dad and his girlfriend. It took only a moment and the three of them were wrestling on the floor of the country club ballroom, in their Sunday bests. This continued for another twenty minutes and as it did the other cousins started to gather on a nearby bench. I'd look over every few minutes while staring endlessly at the memoriam on the screen to find all three boys hiding behind the buffet, playing tag while trying desperately not to run, or dodging one of the ever so patient banquet employees.

I glanced over again after hearing clapping. Clapping like I'd imagine a Russian jig would sound, I saw him taking a break on the floor with all the other cousins while my boys danced for them; not just swaying back in forth dancing, but pelvic grinds, hands in the air, little hips wiggling back and forth dancing. Every time a new dance would start the rhythmic clapping would accompany the routine. But the best thing I heard, was laughter.

With the reception nearly over, mostly family members remained. My boys kept dancing and the cousins kept laughing. Sweaty and dizzy, they didn't stop. Even the sisters were laughing at the site of their strange little redheaded cousins entertaining the other side of their family.

The after party continued at the house, most of the young adults had changed into t-shirts and shorts and were ready to play. All of the seven cousins and their companions were engaging and friendly, my boys were included and most likely organized the activities for the rest of the evening. I was happy not to have to keep track of them, as I was managing my grief by making a batch of cookies while the party went on around me.

It all culminated, long after the five minute bedtime warning was issued. They sat together, close, hip to hip, engulfing the coffee table in the family room as if it was a magnetic force holding them all together. Not just the "cousins" as the aunts and uncles called them, but my boys too. They were included, they almost seemed necessary. A distraction so they wouldn't notice HE wasn't there anymore.

A game of Apples to Apples was getting very competitive when we announced it was bedtime. My boys protested and a deal was made to play one more hand. He lifted Ryan up onto his lap and gave him a hug and I cried. I cried for so many reasons. That's what HIS cousin would have done, HIS cousin should be here, what a blessing it is that the sisters have such a great network of love and how great that this other young man could help fill the void for my boys, if only for last night.

I composed myself out on the front porch and returned in to say goodbye to all of these amazing young adults they call "the cousins". Thank you for being there for each other and thank you for including my boys in your circle, they'll cherish their night being part of "the cousins".

Tuesday, August 13, 2013

Nephew

I awoke in a strange bed walked out to the room out from the guest room to find everyone preparing for breakfast. In the corner of the room stood a tired old desk holding an ancient desktop computer, sitting at the desk was a five year old boy.

Eyes as bright and blue as the summer sky, and voice scratching and new. The scratchy voice spoke to me after prompting from his mother. Explaining the game he was working on, I could only nod and give a kind smile. Not being a mother myself yet, I studied this boy with amazement. Curious, calm and cute as a button, that scratchy voice and the boy that it accompanied and I began to become acquainted. He sat next to me at meals that weekend and I tried to figure out how to talk to this little human.

The following summer I was even more a part of the family, but not officially. The scratchy voice was still with him, but he was growing. At least two inches taller and mildly more coordinated, my soon- to-be husband and I secretly giggled while we watched his oversized head steer his body around the makeshift kickball field in the backyard at Grandma’s house. So determined for his team to win, he’d run as fast as his little legs would take him. It seemed to me that the rest of the family members were taking it easy on him when it was his turn, all except his sisters. There was plenty of squabbling between all of them while they huddled in the corner of grandma’s living room where she kept the hand me down toys. Legos were his thing, always building, concentrating.

Every summer we saw him and every other Christmas or Thanksgiving. I looked forward to seeing him and his sisters; they brought energy and life to the otherwise quiet family gatherings.

At six years old he started to call me Aunt Sue. He was the obvious choice for the ring bearer in our wedding and took his job very seriously. He walked down the aisle as slowly as we had asked him to do the previous night at the rehearsal and enjoyed wearing the tiny tuxedo. His gentle nature came through even then.

A few summers after I became a mother for the first time we ventured out west again. The shack where we had stayed previously had been replaced by a grand beach house where we brought our two boys, they were one and three. My oldest and he shared the same birthday, separated by eight years. My three year old had been enamored by him from the start. He played with my oldest non- stop and was curious about my youngest. I was reeling from the news that my one year old would be disabled and have special needs as he matured and I was very protective. I remember waking one morning after everyone else to find my nephew holding my one year old. I was alarmed until I saw the gleam in my nephew’s eyes. Proud to hold his new cousin, he was able to feed him a bottle as he held him.

That week also showed me his patience and kindness; at eleven years old he came to town to be our tour guide. He showed us the sites and the amusement park. My three year old begged to go on this toy train ride but was too frightened to go alone. My nephew volunteered to ride it with him. He gathered his already long legs in the small train car and faced my son while they did three laps around the flat sunny parking lot. I remember being impressed that he didn’t once complain and we rewarded him with a half hours’ worth of videos games at the arcade. He was grateful.

As he grew older his scratchy voice disappeared, but his interest in my boys never feigned. Always enthusiastic, patient and entertaining, he picked up where they had left off from the last time they saw each other. Of course, when my third son came to be, he was right there ready to play and be his instant favorite.

My third son looked forward to Thanksgiving almost as much as Christmas because it he could finally play with his favorite cousin again whom he hadn’t seen in months!

As an observer I admired the young man he was becoming. While we were visiting their home two summers ago, we had returned from a family outing to the aquarium, he came from another car and carried my wheelchair bound son with ease into the house. I didn’t ask him to, he just did it. I was moved by his thoughtfulness. He took a few more breaks from playtime than he had in years prior, but I understood. It’s hard to be in demand and popular with the little guys. He started relating more to his older cousins, seemed as though he wanted to be grown up. He was on his way.

Each time we’d see him I’d love to marvel at how tall he was getting. First as tall as his mom, then almost as tall as his dad, finally surpassing both parents and then some! His voice was deep and matured; thankfully, his eyes were still that of the boy I remember holding my one year old years ago.

The last time I saw him was Thanksgiving 2012. He was a handsome young man. He ran the Turkey Trot on Thanksgiving morning and ran faster than his mother, which is a big deal. I couldn’t get over how fast he’d grown up. I suppose when you only see someone every six months they seem to grow faster.

I have a video of him and the rest of the cousins playing Pit after the Thanksgiving feast. I’ve watched that video over and over in the last few days. Read countless articles about the legacy his amazing father left behind. Wished I hadn’t read all the details of their tragic deaths. Because it isn’t real yet, he’s not dead yet. I’m still expecting to see him at Thanksgiving.

He lives on in my memories and the family photos I searched thru before I started writing this.

The horrific ending to his life overshadows the beauty of who he was. Kind, gentle, smart as a whip, funny, strong and innocent. I will always keep his memory alive with my boys. I will remind them of who he was, talk with them about all the cool things he was able to do in his abbreviated life. I hope that my boys inherit his strength of character and his sense of self.

We will miss you sweet nephew. I pray you are watching from above with your beautiful blue eyes.

Tuesday, July 9, 2013

Not Yet

So all day I've been thinking of ways to write about my day. Or even if I should write about my day. I planned everything out last night. I packed the diapers, wipes, extra clothes, printed out his sheets for his communication folder, filled out the forms for the field trips and wrote the check.

I was ready. Dermot was ready, we thought.

As the storm approached we waited for the bus. 7:50 arrival time meant we'd need to feed Dermot faster than normal. I didn't think anything of it. As the bus arrived, Owen and Ryan came out to meet it. Owen had never seen Dermot get on his bus and was excited. We all rolled Dermot out to the bus and started to back him up onto the ramp and he spit up. Then he threw up on his shirt. We'd go change him and the bus driver would be back.

I brought him inside and laid him down to change him and wondered.
Why I was the one who always took him.
Why did I feel compelled to wipe the puke away and wash it off his TLSO brace.
Why did I think I was the only one who could care for him the right way?
His dad offered to change him. Grandmas' wanted to hold him, babysitters offered to play with him, friends asked to stay with him.

I get in the way. I monitor. I watch. I hover. I protect.

I wonder if it's because I don't want you to discover how helpless he is. Or maybe you'll find out how heavy and awkward his body is. You'll be afraid or creeped out, you'll pity him, or worse, you'll pity me.


My friend has a newborn daughter I get to see every week. I look forward to seeing her, holding her and talking to her and seeing her smile when I make a funny face. While I hold her I notice her mother seems lighter, a little more free. Perhaps its because she's been attached to her baby all day long and needs a break. Perhaps its because it makes her happy to see friends love her baby.


So I return to my need to protect Dermot, not let you know him too well. I need to let you in. Let you know how great he is. How when you hold him he purrs a bit and just might nuzzle in for a bit. I need to let you know how hard it is sometimes. He might give you a blank stare or burp up a bit. That's Dermot. Warts and all.

So Dermot stayed home today, probably will tomorrow too. Seems he's caught a bug or some sort. When he's better I promise I'll try to let you know him a little better.

But be patient with me, I'm still learning to let you get close.



Sunday, May 12, 2013

Mother's Day?

Sometimes I sit down at the computer to write, hoping to be profound, hoping to move my readers while at the same time expressing my feelings.

I just deleted three paragraphs of crap.

I started my day at church. We were late and our usual spot was taken. We sat somewhere new. I saw a different priest at the front of the room and worried that our priest, the guy I wish would give a homily to me everyday because they are THAT meaningful to me, was absent. Then our pew was too crowded and I practically had Ryan on my lap the whole time. He WAS there, I DID hear his homily. Something about saying goodbye, never seeing your loved ones again, but to look around for them in others...I didn't understand. You see most of my day was spent in self doubt, arguing with my nine year old son, to the point where he popped me in the face with his baseball mit. It's a long story, mostly about me being a control freak the whole day...

On edge all day long, I was longing for a time to be quiet, to be alone. A little secret I have, I don't want to spend Mother's Day with my kids. I want to be off somewhere else doing something else with someone else.

Motherhood is hard, it's exhausting. Motherhood makes me feel like a ridiculous person most of the time. As much as I love my boys, I miss my dignity and identity I had before motherhood sometimes. (If anyone has a secret on how to keep both, please let me know!)

I spent thirty minutes this morning insisting my son wear pants, not shorts to the baseball game. He screamed with all his might, but I won. In reality he would have been fine in shorts. But I needed to win that battle.
There are too many battles I cannot win. Can't stop the seizures, can't stop the wrinkles from forming on my face, can't stop the dog from peeing on the carpet, can't get my husband to wipe of the countertops, but I can make my nine year wear pants.

Crazy? yes.

Perhaps next Mother's Day, I'll plan a getaway...

Life returns to normal tomorrow.

Sunday, February 17, 2013

Measured.

"Happiness makes up in height for what it lacks in length."
Robert Frost

That was the quote on the spine of the Real Simple magazine when I glanced down at the stack next to the rows and rows of nail polish. I kept looking at it while I was receiving my hand massage by the Asian man assigned to paint my finger nails.

Indeed the quote was true and very fitting for today. I've been sad the last few weeks, and I've let you know about it. But there's happiness involved here too. On Wednesday the doctor told us that whatever type of therapy we're doing seems to be working with Dermot and he won't need Botox injections in his legs. Hooray! Progress for sure. Then there was a great evening out with dear friends that same evening, lots of sharing and lots of laughs.

And today, a friend ask if I'd like to join her to get our nails done. I would, I did.

Sometimes the bad stuff outweighs the good in quantity, sometimes it transforms me into a sad but comfortable recluse. But the email from a old friend, a kind comment from a new one and an invitation out pops me back into the world. The world where happiness is measured in height and there are no expectations of length.

Friends matter. Thanks Rebecca.

Saturday, February 16, 2013

Logistics

"That's how our life is, so we should probably start living it that way!" I replied defiantly to my husband. I was the driving the familiar route to the Y to swim with the whole family.

I had suggested that he take the two typical kids on a spring break trip and he balked at the idea that we wouldn't go as a whole family. How? I can't see driving twenty plus hours to Florida, let alone fly there. The last time we took Dermot on a plane we were very lucky to get first class and that his wheelchair wasn't trashed in the baggage compartment. On the way home we were in trouble. Dermot needs full support while sitting, we bring his large carseat and after that is installed in the narrow airplane seat, there's not even an inch of space left for his long, six year old legs. After we returned home from that trip I knew it would be a long time before we would travel again.

So I listen to your stories of family vacations to Steamboat or Orlando and I envy you. I envy your lifestyle that affords you the luxury of getting on a plane with your whole family and only worrying about keeping the kids occupied with iPads and coloring books. Not once do you worry if you forgot any meds or the extra feeding tube. Will the hotel have received the special delivery of formula? Does the airline have two first class seats (at no extra charge) to fit a mother and her son with low muscle tone and a giant car seat.

I sat with a sleeping Dermot in the family changing room, frustrated and defeated. There's three locker rooms at the YMCA, I tried them all and ended up here. With no proper table in which to change Dermot into this swimming apparel, a back spasm was most certainly in my future. I could kneel on the cold wet concrete floor or hunch over and let my lower back complain about it to me now, as it is doing. The ibuprofen is trying to quiet the complaints, but I've about reached my limit.

Dermot weighs nearly 50 lbs. 50 pounds, up and down nearly seventeen times a day. I weigh 130 and am 5'4" tall. I fear that my body is failing. I fear that I may need to rely on others to lift and carry my baby boy. I'm angry about it.

Most times I'm okay with our daily life and the routines that complete it. But the back pain has been getting to me this week. An inordinate amount of ibuprofen hasn't made it go away. The elaborate foam roller and massage ball I bought yesterday will only partially relieve the syptoms. I know there's a transition time coming that means I won't lift and carry my son myself.

Logistics will get more challenging. Trips with the family will be segmented. Swimming at the Y becomes a pain in the ass...