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...

Monday, February 11, 2013

Grief in a 41 year old

It's eleven o'clock. I don't want to go to sleep. Or even try. I put my head on the pillow and the thoughts come rushing in. Thirty five days ago someone else's little boy died. Thirty five days ago my husband and I wept on our knees in the hallway of our home and tried to explain why to our four year old boy.

I immediately made lasagna and M & M cookies and a CD of my favorite songs to cry to. I drove it over to their house the next morning. We went to the visitation, then the funeral. I made more food and delivered it with a note. And then more food and more cookies. More notes. More cookies.

Every night since the death, I can't seem to sleep. The first two weeks I spent late night hours in my dark living room drinking sleepy time tea, watching a rabbit at the bird feeder outside the window.
Images of the funeral and details of the tragedy keep my mind racing. Complete sorrow for the family, complete.

I know this is grief, I've felt this before. I've stayed awake too many nights to count. But it's not my child, right?

I've been invited to remember how it used to be. I remember the gut wrenching pain. Pain that has been dulled by five years of life experiences and a hell of a lot of acceptance. I know my grief is different, it's ongoing. It looks at me in the face every morning, it smiles when I say "Good Morning!". It makes my back spasm at the most inconvenient times, it reminds me how different my life is from yours. My grief changed me into a better person in the most painful way imaginable. My grief continues.

Their grief is the aftermath of a horrendous car accident. My grief is watching the car accident happen in slow motion.

So I lay awake at night thinking of the family and what they will have to endure in the coming months and years. They have to learn to live again, without him. How? Why? What for?

I cry for them because it is a place only they can navigate. Grief is personal, private and painful.

All we can do as friends is show up. Answer the call. Meet them for breakfast. Send them an email. Bring them food. Make them cookies. Pray with them and for them.

It's ok to lay awake and not be able to sleep. It's grief.


Sunday, January 27, 2013

Wings Gala speech, Jan. 25th 2013

I wanted to tell you that before I came to the Family Center I had two friends. Two friends in which to share the monotony of new motherhood. Two friends to plan play dates and tumbling classes and swimming lessons and movies for moms, anything to get through the days while our husbands went off to work. Let me tell you it got awfully lonely if one of my friends was out of town and the other had sick children.
I was Home. Alone. With my child. For eight hours…

Then I had my second boy, Dermot. In the beginning he had, what I like to call now, some “minor” health issues and my two friends tried to support me. Three months after he was born we moved to Edina, to a house that had more than two bedrooms. I decided to keep my oldest son in preschool in St. Louis Park in order to stay connected to my two friends.

Then, at four months old, Dermot had his first seizure, and that changed everything.
You see when a child has a seizure and goes to the ER and stays in the PICU for three nights, he is automatically referred to an agency called “Help me Grow” for an assessment to check his general development. Through a series of appointments and assessments with the fine ladies of Edina’s Early Childhood Special education it was decided that Dermot needed extra help to meet his developmental milestones. Dermot’s teachers came to the house every week and spoke very highly of the family center for Owen. And I listened.

I had missed the ever so important registration deadline so most classes were filled. We managed to get a spot in a hand-in hand class for three year olds, and so began my journey at the Edina Family Center.

I continued the next year with Teacher Sue Ellen’s class and started my first parenting class. By that time, I’d had ANOTHER baby boy and my second son was receiving the maximum services from the school district. We had been told by his doctors that he would never walk or talk, he would be different. What I heard was: I WOULD BE DIFFERENT.

So at start of my first parenting class, it was me, Kris and eighteen other moms. Moms, whom I thought, were very different than me. They could not know what I was going thru. I told myself they wouldn’t understand. I spent most of that class feeling apart from everyone else.

Now, four years later, I am in Kris’ class again, and there isn’t even a moment of feeling different. I share my story openly and honestly. I credit the fact that I can do that because of the moms in this community, we call THE FAMILY CENTER. So KIND, so ACCEPTING, so eager to help.

I’ve taken three other parenting classes between my Kris S. classes and each experience has taught me more. I cherish my time with Kelly, Sandy and Kris a great deal. This “MOM NETWORK” is like nothing I’ve ever experienced before. These moms offer kind words, no judgement and help other moms however they can.

They’ve taught me that yes; I am a special needs mom. But I am also a hockey mom, a soccer mom, a minivan driving mom, a running mom. I am a mother just like all of you. I’ve tackled some very extraordinary circumstances, just like you would if your child needed you.

I still struggle to get my picky eater to eat something, ANYTHING!  I cheer when my son scores a goal at hockey. I complain when my little one keeps waking up in the middle of the night.

All of you remind me that I belong here; with ALL the other moms and that everyone has their own struggles and triumphs to experience. The best part about the Family Center is that we do all of these remarkable things TOGETHER.

So because this is my last year at the Family Center I’d like to close by thanking all of the teachers, staff and parents that have made an impact on me and my family.

Thank you to:
Kris
Angie
Kelly                       
Sandy
Mary
Dawna
Shelly
Brenda
Lisa
Heather
Molly
Leslie
Julia
Barb
Karen
Cathy
Sue Ellen
Linda
Celeste
Amy
Annie
Carla
Danni
Jane
Laurie
Kristin
Deb
Priya
Jen
Rebecca
Alison
Winnie
Carrie
Christina
Jason
Leslie
Carrie
Krista
Paola
Kristie
Sue
Amy
Erica
Kristi
Noelle
Kristin
Jesse
Aron
Becca
Varenie
Beth
Ophelia
Amy
Kate
Kelly
Beth
Rachel
Kristi
Kara
Julie
Tanja
Kelly
Rob
Caroline
Padma
Michelle
Cintia
Annie
Kim 

AND of course the fabulous women from Early Childhood Special Education:
Jan, Kate, Jamie, Anne, Katherine, Joan, Megan and Sarah.

Thank you, I carry all of you with me wherever I go and I no longer feel APART from you….

Monday, January 21, 2013

Young grief

Grief in an eight year old:

Two days after the funeral he had rubbed most of the ink off of the wristband he received at the funeral.
Got almost frantic when I told him I couldn't fix the wristband, then calmed down when I agreed to give him the one I got.
Gave me several unasked for hugs when he noticed me crying at the dinner table, at church on Sunday and while reading him a book.
Asked to read his obituary in the paper, again.
Asked why his heart stopped beating.
Read the article about his friend in the neighborhood newspaper and was comforted by the fact that his favorite team was Notre Dame.
Listened while his friends at swim practice talked about "the boy who died", didn't share with us what they'd said.
Spent a few nights out of sorts, almost crying, almost yelling.
Made sure that the green #7 sticker was placed correctly on his hockey helmet.
Wanted to know if he'd been to any other funerals when he was younger.
Seems to be hugging his brother Dermot an awful lot lately.

Two weeks so far.


Friday, January 11, 2013

An explanation


Cathartic: producing a feeling of being purified emotionally, spiritually, or psychologically as a result of an intense emotional experience or therapeutic technique.

That is why I write.

I’ll admit when I first started writing it was to inform family and friends about Dermot’s health and hospital stays so I didn’t have to repeat painful information over and over, but at some point my blog morphed into a vehicle to process my thought and feelings.

Yesterday I went to the funeral of a friend’s eight year old boy. He died suddenly and quite tragically. Yesterday I posted my heartfelt experience of his funeral and the happenings that occurred at the funeral. As with most people this was the most difficult event I’ve ever experienced. First because he’s eight years old and we knew him. We saw him often and our families have a connection. I know I don’t need to explain the relationship we have with the family, but because of some criticism I received over yesterday’s post I feel that I must. Secondly, I know with some certainty that I will be in the same position as my friend someday. Because my son has profound disabilities, I am glaringly aware that I will most likely out live my son.

I’ve been in the ambulance with my son, rushing to Children’s hospital. I’ve run through the automatic doors close behind the EMT’s while they rolled Dermot into the ER. I watched helpless in the corner holding his clothes while at least ten medical professionals tried different options to try and stop his two and a half hour seizure. I’ve looked into the eyes of a trained professional while listening to him tell me that they are doing everything they can to help my son. I know that terror; I live with that every day. But the big difference being, I got to bring my baby boy home, alive.

 So I don’t know the terror of watching the life slip away from my son’s body. I don’t know the gut wrenching pain of sitting next to his coffin while every single person he and I have ever known comes to say good bye to him forever.

But I imagine it. I imagine what music will be played. I imagine who will be at his funeral. I imagine the numbness of the days and weeks after. I pray that I’ll have the strength to get out of bed each morning for my other boys. I worry about how it will affect their lives. I wonder who will show up to support me and my family, because I know it will likely be people I never expected.

That is why yesterday, I was watching every detail. I had my eight year old count every green balloon on the way to the church. I watched how the oldest brother’s hockey team showed up and stood tall. I watched all the little children cry one minute and play with their friends the next. I watched the all the parents touch one another and talk. I took note of the beautiful creative program that the little boy contributed to without even knowing it. I wondered if the musicians were professionals or friends of the family. But most importantly I watched my friend, the mom. I watched her walk thru all of her pain, sometimes composed, sometimes not. The beauty of falling to pieces was not lost on me.

I admire her grace from now on. I pray for her and her amazing husband and sons. I will continue to watch them as they go thru the journey of grief and emptiness. I will learn from them. I know with God’s grace they will learn to live again. I know they are changed forever.
##

As a footnote: I have removed the post (An Eight Year Old's Funeral) from yesterday with fear that it may have been too personal for the family. I've saved it, and will keep it because I found it very cathartic to write.

Monday, December 17, 2012

Too much.

"I have been driven many times to my knees by the overwhelming conviction that I had nowhere else to go." Abraham Lincoln

Driving to Target last Friday afternoon, I switched on MPR radio as per usual and heard mid sentence a mention of 26 dead, 20 of whom are children......elementary school shooting....lone gunman....teachers dead....

I took a gasping breath, almost cried and switched immediately to a Maroon 5 song talking about how his body keeps on telling him yes.

"Not today, not now." I said out loud, to myself. It was too much. I have two boys in elementary school and one in a very public preschool. This happened to them, far away. This won't happen here. To me.

The illusion of safety is a dangerous one. I used to think that tragedy happens to other people, people I don't know. Not me. Or I thought that I'd paid my dues in life already and not another bad thing could possibly go wrong. Until I had Dermot. Until I felt the grief, over and over again.

There's a certain awareness after you've lost someone, or the idea of someone. Grief is often times more powerful than love. It pulls you away from people that love you, people that need you and yourself. It transforms you into someone else. Someone who knows.

Someone who knows bad things do happen to good people. A mother of two beautiful daughters gets a brain tumor, a strong young hockey player gets paralyzed by one stupid play, a young mother caring for her ailing mother gets the news that not one, but both of her sons have autism. These unimaginable tragedies happen every day to people we know and to ourselves.

So all weekend, I decided not to listen to the news, not to watch the ongoing coverage of the horrific event that destroyed so many innocent lives. I know that it happened. I feel sorrow for the families that lost love ones. But sometimes it's too much.

So I return to the quote by Abraham Lincoln. When all is lost, I pray. I don't have a formal practice or even a memorized prayer when things gets overwhelming. I get quiet and I look for signs. Signs of grace. "Look for the helpers" Mister Rogers' mother told him. Look for the first grade teacher who saved her students lives while losing her own. Look for the smile on the face of the young Jack Jablonski as he wakes up everyday with hope of rehabilitation. Look for the outpouring of support for the young mother with too much on her plate. I look for the messages in everyday occurrences. I know that I am being cared for in a way I don't quite understand. It relieves me from worry and fear. It keeps me going when there's too much.

And most times that's enough.

Monday, November 26, 2012

Without Judgment

I remember the cat jumping up on the table next to me. I felt a combination of delight and desperation when I started petting the curious tabby. With Dermot on my lap, having just carried him in from the van where I was greeted by a man resembling Uncle Jesse from Dukes of Hazzard who was busy under the hood of a piece of shit Dodge minivan from 1984.

"Are you Mr. Wood?" I asked, trying not to sound terrified that he was going to abduct Dermot and I and we would never be found again.

"Nah." the uncle Jesse look alike replied. "He's in the house. Go on up".

Gulp. I was not expecting this at all. This man had a website, all the information on his profession checked out, plus I even had two friends refer me to him. But as I turned off on to the dirt road and traveled for a mile or two while passing farms and vacated houses, my fear crept in.

I unbuckled Dermot from his car seat and lifted him on my left hip. Being only two years old he was still light enough to carry, even up a steep grassy hill to Mr. Wood's deck. The sliding glass door was open a few inches so I called "hello?" to see if he was, in fact inside.

"Hi, is this Dermot?" he asked.
I answered yes and he invited me inside. I walked carefully around the piles of old magazines and books that covered the floor, to a kitchen table only a bachelor could stand to own. On the table were around a hundred tiny brown bottles with eye droppers, labeled with masking tape.

As he asked me questions about Dermot's condition he started pulling a few specific bottles from his collection. Then he placed a couple of drops from each one on Dermot's arm and rubbed them in.

"There, you see? He took a nice deep breath. It's working" proclaimed Mr. Wood.

I was less than convinced, as the cat jumped up on the table. I wanted to exit the premises immediately. I concurred with his thoughts and politely pushed the kitty off Dermot's leg.

Mr. Wood wrote down his prescriptions for the plant extracts, three in all that were going to help the seizures and his breathing. All for $75, cash.

I couldn't have got out of there faster. No time to even say goodbye to the white haired mechanic in the front yard.

As I drove home I remember crying a bit. The feeling of desperation, of wanting to help my child any way I could was overwhelming. I was testing my distrust of Western medicine and I felt ashamed. My judgments of Mr. Wood's surroundings and business practices told me to never try anything that wasn't tried and tested ever again.

It stayed that way for almost four years. I was adamantly uninvolved when my husband brought Dermot to the hyperbaric Oxygen treatment every day for a month. We brought Dermot to the best neurologist, pulmonologist, physiatrist, cardiologist, pediatrician, ophthalmologist, orthopedic surgeon and a handful of physical and occupational therapists. But one thing I realized with all of these doctors, they are all trained to treat the symptoms.

Drugs for the seizures, braces for the malformations, glasses for the blindness, Botox for the tight muscles and oxygen for the breathing. No one was treating the Dermot as a whole person with a mitochondrial disease. No one was in charge of what was causing all of the other issues. Just me.

"

I walked Dermot into the therapy center on a dark Saturday evening a few weeks ago. The same room where he gets weekly face massages to help with his reflexive bite and drooling. The lady with the magic hands wore a bright teal sweater vest and sported a very short spiky hairdo.

"Who do we have here?" She asked joyfully in a strong Russian accent.

"This is Dermot." I answered.

"Okay, let's get to it." She said.

As she told me how things were going to work during the evaluation I was overcome. Perhaps a spiritual experience, or just gratitude. Teary eyed, I watched carefully, listened intently and witnessed as she was able to move Dermot's arms above his head with ease. Another "push of a button" and he stopped fisting his tiny little hands. Open fingers and arms above his head was huge progress for this little boy. She explained how all the problems Dermot is experiencing are interconnected and our goal now will be to retrain his brain.

"His brain is stuck in a traumatic state. We can help him out of that." She stated.

She continued for another hour and a half and sent me home with a program to practice with him. Finally something practical I could do to make a difference. I can help make Dermot more flexible, release his spasicity and calm his fears. Without hurting him or adding one more piece of equipment to his body.

Now this treatment is far from conventional, and she isn't covered by insurance but because of my disenchantment with western medicine, I'm willing to try again. But this time without judgment.


The new treatment we are using is: The Masgutova Neurosensorimotor Reflex Integration - MNRI ® Method