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



Thursday, October 25, 2012

O2

It isn't good news. I wanted to suck it up and not feel it yet. But that didn't work so well last time. Last time I didn't cry for three months. Last time I told everyone I was fine. Because if you don't feel it, its not real.

Yesterday, after consciously deciding NOT to feel the news seeping out of the receiver of my phone from the sleep doctor with twenty five years of experience. I changed my mind. I called my husband. I told my parents. I shared with many of my friends. I shared my sadness and disbelief that I, as a mother have to endure with this situation. A situation so sad, frightening and slow that it requires that I feel each stage of progression. There's the "special chair", the special needs stroller, the stander, the  turny seat for my van, the wheelchair, the bath lift, the ramp in the garage, the AFO's, the feeding tube, the suction machine, the shell, the knee immobilizers and now the oxygen tank.

We discovered that Dermot has severe obstructive sleep apnea. He wakes on average 37 times per hour...because he stops breathing.

The doctor with 25 years experience provided a list of options for treatment to improve his quality of life..... To improve his quality of life....

So the first option we shall try is oxygen while he sleeps. After that we will try a CPAP machine, while we are trying those options we will visit an ENT to rule out tonsils and adenoid removal, which the doctor with 25 years experience doesn't think is the problem due to Dermot's low muscle tone throughout his body. After that the options are gross and I've decided not something I need to think about yet.

So I'm feeling this stage now. My house is spotless, I've have five cookies already today and I'll go for a long run as soon as it stops raining...

Tuesday, September 18, 2012

The bus

There's a message on the machine when I return home. "Hi Sue this is Deb from transportation, because of a scheduling issue with another student, effective immediately Dermot's new drop off time will be twelve noon."

I paced in circles in my kitchen, I'm angry. I've planned my entire school year around this school drop off time, and they changed it. Just like that. I sit on my kitchen floor and cry. I cannot be two places at once. I guess Dermot doesn't get to ride the bus. I call Deb back and leave a voicemail. "Hello Deb, this is Sue Sullivan Dermot Sullivan's mother. I will pick up Dermot from school effective immediately." With each word it becomes more obvious that I'm crying through the message so I hang up.

It seems to be a trivial occurance or a minor irritation from the outside. I tried to tell myself that. But why was I moved to tears so quickly and so intensely? Am I finally losing it? Have I lost my composure for the last time? No. These are the times when I am again reminded that my life with Dermot as his mother is hard.

Wipe the drool away. Hook up his feeding pump at Owen's soccer game, every soccer game. Wipe the spit up off his lap. Adjust his full body brace so it's not hitting his chin, while carrying on a conversation with another mom. Scrub the spit up off the straps to his stander. Lift his slippery wet 44 pound body from the shower chair in the bathroom to the changing table in his room without dropping him or throwing out my back. Advocate for his standing needs at his new school. Remember to order formula to get us thru the weekend. Schedule a sleep study to make sure he's breathing okay at night. Call the neurologist's office to discuss a different seizure medication because the three that he's on right now aren't working well enough. Wiggle his tooth here and there so that I can be the one that pulls it and not the dentist. Create a new teacher communication folder to last the whole school year. Stop calling is new para from school Erin! Allow his new PCA a chance to bring him to therapy to learn the program. Let the teachers know he has a doctor's appointment in the morning to check his spine and hips and hopefully delay any necessary surgeries for another few years. Consider being a room parent for his typical Kindergarten class. Schedule speech therapy, or at least call to get on the waiting list. Give him a well deserved massage.

My life is hard. I won't tell you that when I see you because I don't think it's hard most of the time. I'm blessed in many ways. I help others so I don't focus on myself. I keep moving all day long so I don't stop and think. But when Deb called, she reminded me, it is.

There must have been a little angel helping me out that day last week because Deb called back, she had a solution, and Dermot still rides the bus. Thanks.

Tuesday, September 4, 2012

Couch

God dam nit! God Damn it! I shouted as loud as my lungs would let me. My cute adorable little beagle had done it again. God damn it! I couldn't stop shouting. My four year old looked at me as if I was a crazy person.

"Mom, that hurts my ears." he informed me. "
"I'm sorry honey, mommy's really angry. I'll try to stop yelling so loud." I told him as I was feverishly removing the slipcover on my white canvas couch.

I moved this couch down from the boys room for a fresh start. No dog drool or urine. No stains, no gross history. Just fresh crisp white couch. Until this morning. I was arranging the cute new throw pillows on my pristine couch when I noticed the puddle. God damn it!

My sense of order has been rocked. My idea of how things are isn't true. My dog peed on my couch. Again.

Dermot starts kindergarten tomorrow. He's going to be fine. He will love it. His teachers will love him. I know all of this , I do. But the thought of dropping him off to a new school with hundreds of students that don't know how amazing he is scares me. Leaving him with teachers who've met him once, para professionals that don't know what his sounds mean and what he like to play with freaks me out. Everything is going to be fine. I've been telling myself this all summer long. I've been relatively calm about. I've been telling all my friends that I'm not really worried.

But it's tomorrow and I already can't sleep. My worry manifests itself by wiping the counters clean, watering all the plants AND the trees outside, folding and refolding my sheets just so, shopping on the internet. I'm pretty sure I have enough beads to make 20 necklaces now!

But this dog, she did it again. God damn it! Just when I thought I had it covered. The old stained couch tucked away it the upstairs office so no one could see all the stains from the past year, the smells of beagles, cat and old formula spit up. She peed on my newly created pristine environment and to my surprise, underneath the clean white cover there's new stains that I will have to deal with.

So when you come to visit, please know that my couch is not brand new, but it's washed, clean as I can make it. Stains will come and go and no matter how hard I try to make things just so, someone will pee on it and I will have to clean it up.

Does any of this make any sense?

Sunday, July 8, 2012

PCA

Our nanny of three + years left in May to go to nursing school. I've missed her ever since. When I'm at the pool with the boys, I think I see her out of the corner of my eye, but its not her. She's in Arizona for at least fifteen months. When she returns she will hopefully get a job in the pediatric ward of a children's hospital. She's perfect for the job.

I found two other people right away to take over for her and watch the boys. I thought it would take some time to adjust. Two months later, I'm still adjusting. I interviewed the new people, they both have experience with special needs so I was comforted by that. I've trained them in on how to feed and change Dermot. Showed them how to administer his medications, fit his new TLSO brace around his body properly. Instructed them on how to use the various equipment, the wheelchair, the stander, the bath chair. Both caught on quickly.

But there's something missing, I remember mentioning in the interviews how important it is to us that Dermot be involved and in the action while they supervise my other boys. That he not be ignored or forgotten. For all intensive purposes they are following my instructions quite nicely. But I can't help feeling a tinge of guilt when I leave the house. I know there's something missing.

Coming in the house at the start of their shift and making sure to greet Dermot and wait patiently until he sees they're there. Explaining to him every next move of what was going to happen next and how they are going to position his body. Telling Dermot's younger brother that he's going to have to wait, because it's Dermot's turn for attention. Holding him in their arms while reading a series of books to him, because every boy likes to be read to. Running Dermot thru the sprinkler and not caring that they're all wet. Handling the countless "urp-up" messes with quick nonchalentless. And loving him, as he is, a person, a brother, a little boy.

I know that some of these things that are missing are because our nanny knew Dermot for three years and she learned by watching us, but she amazed me and motivated me to do things with Dermot that I wouldn't have before. I consider myself and my family incredibly lucky to have had her with us for so long.

As I look toward the fall and my summer help returns to college, I will hunt for someone new to help a bit. Someone for Dermot and not so much the other boys. The other boys just seem to need a referee now and again and I can handle the rest of their requests. But someone for Dermot. Someone who's seen a mic-key button before, knows the proper positioning of a TLSO brace, isn't intimidated by a little spit up now and again and can foster his ever changing special needs. But mostly I need someone to love Dermot.

I often get asked if I have a PCA for Dermot, I always say no, I didn't think we needed one until two months ago when our super nanny moved away. But now, I'm convinced that we do indeed need a PCA, more than I thought.

What does PCA stand for? Person who Cares A lot.

Saturday, June 30, 2012

Get in the game.

As I slid furiously through the dark tunnel screaming with glee, I could feel my four year old's hands gripping my legs tightly, we reached the open section of the water slide and I was still screaming. We reached the end of the slide with a sudden splash into the pool and an enormous sense of joy filled me.

"I wanna go again!" I hollered, my two typical boys were glad to oblige me. I felt as though they were enjoying my very rare sense of free spiritedness. You see most days I forget how fun it is to be a mother.

Tonight, my husband and my oldest son are off at the race car speedway. I'm here with the other boys, again. I wanted to go to the track. I'd gone last year and enjoyed myself throughly. The people watching, monster trucks so loud you can feel them in your chest, three specific kinds of stock cars racing in a quarter mile track and let's not forget the endless display of mullets. But I'm not there. I'm home. I just got my two little ones to bed and I'm sitting watching a NASCAR race on television. My mind's brewing with the unfairness of it all.

So often, under the guise of keeping my typical kids lives "normal" my husband takes them on trips to the beach, to the waterpark, to the race track, out of the boat for a day of tubing with their buddies, and the list goes on. I stay home with Dermot. Dermot cannot do most of the activities listed so it's decided that I stay with him. Sometimes I relish a few exclusive hours of alone time with Dermot, and sometimes I countdown how long until my husband gets back with my other boys so I can hear about the fun they've had.

But tonight, as I brewed all evening about how it's not fair that I'm the one who always has to stay home and my husband gets to go have fun, I thought about last night on the water slide. I thought about the joy I felt doing regular mom activities with my typical kids. I need more of that, I need to allow myself more joy. It's funny the sense of martyrdom I tend to have, I have signed myself up to be completely responsible for Dermot's companionship.

But what if I went to the race track? What if I went out on the boat? What if I was the one who took my other boys on these fabulous adventures? Maybe I'd be a more satisfied mother. Maybe I'd stop thinking I was the only one who should care for Dermot. Maybe my husband's perspective would change too. Dermot's almost six, I've been sitting on the sidelines far too long, I need to get in the game.

Sunday, June 17, 2012

Ordinary

I am not different, I am ordinary. My son Dermot is an ordinary boy. There are a lot of children like Dermot. Our family's situation is not special or remarkable. I know that now. 

At ten thirty this morning I didn't feel that way at all. I was full of apprehension because of our second unpredictable social situation this weekend.  First was the neighborhood block party. I get all tensed up, make sure my boys look presentable and bring an extra special dessert.

The party was great. We met several new neighbors, chatted with familiar ones and watched our boys enjoy the deejay and dance their little behinds off. Worried for nothing!

One down, one to go I told myself as we were walking home Saturday evening. 

The other would be on Sunday morning. A graduation open house for a friend of the family. We would know only the family and ALL the others would be watching us and staring at Dermot, I told myself. 

We set out a bit late. I made sure the boys were dressed appropriately and armed myself with my biggest "I'm ok" smile. After a forty five minute drive out to a country suburb, complete with farmland and horse ranches we arrived. Overwhelmed by the amount of cars parked up and down the dirt road I started to freak out a bit. The only thing worse that a few people staring at Dermot, was a ton of people staring at him. With no obvious place to park, Joe dropped the ramp and I rolled Dermot out and brought the other boys with me to join the party. I immediately saw our host and his daughter, the graduate. To my surprise she remembered me, seeing us almost ten years prior. We chatted with her and her father until Joe arrived. 

As we sat eating our delicious meal, we chatted with a grown woman with Down syndrome, an older gentleman who was blind and a few other women. Dermot was almost immediately greeted by a teenage girl with Down syndrome and wanted to know all about him. As I sat and observed my surroundings, my anxiety vanished.

Then they walked up the driveway. Two young girls, probably late teens, early twenties. I took a double take. I'd never before seen girls such as these two. They walked together, sisters. Same hair style, same facial features. They shared something remarkable and quite stunning. They shared their legs, they shared their arms. Two heads, two torsos, but only two legs and two arms. Huh. 

Friends greeted them, they fixed plates of food for themselves and they sat and ate. 

I glanced at them periodically being very careful not to stare. I knew then that my family's situation was ordinary compared to these girls. I imagined what they have experienced in their lifetimes and what they go thru on a daily basis put any right I had of feeling different and special to rest. 

I was glad to feel ordinary and glad to be in the presence of two extraordinary girls. I wish them well.

Friday, April 27, 2012

Accessibilty


Father Tasto,

Last Sunday my family and I decided to come back to church. We were members of St. Thomas for at least 3 years and attended regularly until the birth of my third son. Life got in the way and went hadn’t been back on a regular basis for a good three years. Occasionally my husband and my oldest son, who’s eight would attend mass. After having a pleasurable experience at our in-laws church in Fond du Lac Wisconsin, we decided it was time to get the family back to church on a regular basis. 

We loaded everyone into the van and drove to the 11 a.m. mass. We arrived and unloaded from the van. When we got to the entrance, we headed straight to the elevator, as our 6 year old is profoundly disabled and requires a wheelchair for mobility. My husband waited in front of the elevator while I escorted my four and eight year old to the main level. My boys were actually very excited to go to church, we waited for my husband and other son by the elevator. After a few minutes, a boy handing out programs informed me that the elevator was broken. My boys and I went to the front entrance because I thought surely there was a ramp entrance. Out of all the many doors to enter the church, none of these was accessible without the elevator. By that time my husband had met us on the front walkway where we were faced with about fourteen steps to climb.

Unfortunately I am not strong enough to help my husband lift the chair up the steps.

The thing that struck me the most that morning was the fact that as I stood with my family, I watched as my fellow parishioners walked by us. No one gave us a second glance. I would normally go inside and ask for help lifting the wheelchair. But because others were not concerned with our plight I was very discouraged. I started to cry on the front walkway as people continued to walk by us. My tears turned to many; this was not the first time my son in the wheelchair had been left out. My eight year old held my hand and told me it would be okay.

No one offered help, or even inquired what was wrong.  

We walked back to our van and went home.

I write this not to inform you of a problem with the building’s accessibility issues, but more to inform you of your parishioners lack of compassion. I am not one to judge others nor do I expect too much from anyone else. But I would hope that if I was on my way to church and I saw a mother crying with a son in a wheelchair at the base of the stairs, someone would stop and offer some kind of assistance. Surely not getting to church on time can be forgiven if you are helping someone get there too.

Thank you for your time.

Sincerely yours,

Sue Sullivan

Sunday, April 22, 2012

How Come?

"Why is Dermot here?", he asked, and for a nano second,       I was offended. But then I remembered, he's eight.
"Why wouldn't he be here, he's Owen's brother." I answered.
"But he can't play basketball" he continued.
"I know, but do you know what Dermot's favorite thing to do is?"
He shook his head.
"He loves being around lots of kids and listening to them play."
That satisfied him for a while and off he went to play basketball with all the other eight year olds attending Owen's birthday party.

Not being a great basketball player, he returned while I was preparing the tables for the influx of Pizza Hut that was on it's way.

What does Dermot do?, does Dermot go to school?, does Dermot have a bed?, does Dermot have other friends that are in wheelchairs?, how much did his wheelchair cost?

After answering many questions about Dermot I stopped what I was doing, rolled Dermot closer to the curious one and sat down on the bench next to him.

"Do you know anyone else who uses a wheelchair?" I asked.
"No."
"It's different, huh?"
"Yeah."

I decided this wasn't one of those moments I dreaded, being peppered with uncomfortable questions about Dermot.

I went around to the back of Dermot's wheelchair and began to set up Dermot's feeding pump.

"Do you want to see how Dermot eats?"
"Yeah."
"He has a button connected in his tummy and I hook this tube up to it, then the food goes right into his tummy."
Why can't he eat regular?"
"When he was little he used to eat from his mouth, but then he started choking on his food a lot and that made him really sick. He used to have to go to the hospital a lot"
"Oh, (long pause, I could almost see the wheels turning in his head) that's not good."
"Nope, it isn't."

As the party continued, this boy stayed close to Dermot and I. He asked questions as they popped up and I tried to answer them the way I'd answered them with other curious children. While the other boys were coming out of the gym to sit down for pizza I heard another question, but before I could answer it, another friend of Owen's already had. Then another boy told him something about Dermot.

The Q & A sessions I have about Dermot are difficult for me sometimes, but as I watched the other two boys answering for me, I realized. These moments are important. Every question needs to be answered, every "why?" every "how come?" needs to be answered. Because I might not be there the next time someone asks, but hopefully the other little boys will be and they can handle the new guy...




Sunday, March 18, 2012

A Shell.

Neuromuscular scoliosis occurs with some types of neurological disorders, including spina bifida, cerebral palsy or muscular dystrophy. In these instances, the children’s trunks are not strong enough to support themselves fully, and the spine curves into a long C-shape.

Got it. Dermot has this. A 50 degree curvature in his spine. "Severe" in the words of the first orthopedic surgeon we've ever met.

He was a kind man, by just looking at him you would probably guess he was about twenty-two years old. Of Asian descent, no visible wrinkles and wearing a stylish outfit (as far as doctor's go). He carried himself in a hurried fashion as if he was late for his chemistry final. Having already been briefed by his resident, he sits down at the end of the examination table, grabs Dermot's feet and begins to maneuver Dermot's limbs in a peculiar fashion. Then he asks to have Dermot sit up, slightly offended I immediately point out the obvious fact that Dermot does not "sit up". The doctor asks that I support him, which is asking a lot, especially in the now very crowded examination room.

Dermot sits up, with a great degree of assistance from me, and attempts to lift up his head to look around. No such luck. Dermot's long nearly six-year old body curls forward, he slumps his head nearly to his lap. While he's sitting like this the doctor talks about the many faults of his posture, comments on his lack of head control and the fact that his head leans to the left side, all the while Dermot is drooling profusely on my hands as I try to support him. "Are we done yet?" I ask. "Oh, yes. You can have him lay back now, sorry" says the doctor.

Then he begins to talk about the severity of the curve in his spine, why it has happened and what they can do to slow the progression. A brace is highly suggested. "Really?" I ask. "Can't we modify his wheelchair to a more rigid seat?" Hoping I'll be able to talk him into this. I let out a heavy sigh. "I'm afraid that treatment won't be aggressive enough for him" he answers back. Then images of a turtle's shell wrapped around my little boy twenty four hours a day, pop into my head. I fight back the tears. I don't normally have an aversion to crying in the presence of doctors, but this guy, he's new and I'm still trying to talk him out of his decision. The tears seem to soften his demeanor a bit and he continues his explanations in a soft, soothing voice that calmed me. He looked me in the eye, which doesn't always happen with doctors, and I believed him.

He walked us through the X-rays, showing us the dramatic difference in Dermot's spine in the last year and I knew. The turtle shell was in our future. I guess I can be grateful that he didn't suggest surgery right now, but I know that's in our future someday. For now Dermot will have yet another custom-molded plastic piece covering another part of his body.

Imagine for a moment tucking your son into bed. Remember to place the leg immobilizers on each leg with four Velcro straps for each leg. Don't forget to plug in his feeding pump to his mic-key button so he'll be properly nourished overnight. Place his neoprene hand guard on his left hand so he doesn't chew his skin until it bleeds. And now, carefully lift his growing body inside the shell and put his jammies on.

For tonight, Dermot is free. No equipment, just the feeding tube. I'm his mom. I can give a break tonight.

Sunday, March 4, 2012

This rug.

I thought as I awoke this morning that the day would go as planned. We'd bring the whole family to hockey to watch Owen, return home for lunch and pass the day away by watching the NASCAR race. If you know us, you'll know that this is a Sunday custom in our family. Things were going off as planned. But then I went out to find a rug.

The rug we have in the mud room entrance has been stepped on far too many times to count. It was the entry way rug at our first house. I purchased it without even glancing at the price, from the Pottery Barn catalog. I was pleased with its appearance when it arrived via UPS a week later. It welcomed you into our home. Many of you stepped foot on it. Then we moved to Edina.

As I write this I am trying to recall where this rug was in our soon to be dream home. Ah, yes. I remember now. I placed it temporarily at the top of our stairs. It didn't go well there but I knew that we were planning to remodel soon and I would get a new rug. Then our plans changed and the rug stayed put. At the top of the stairs at the landing pad for the bedrooms. I remember a picture I took of Ryan sitting up on his own for the first time on that rug.



A year and a half crept by and we moved to our new house. This is house is five blocks away from our old one, it's in the same neighborhood but is much larger and more accessible for our new reality. The rug moved with us.

Because we owned two houses, we decided to move in without too much fanfare. No kitchen updates, no new tiled entryway, no remodeled guest bath, and no new rugs. We worked with what we had. To be honest I was so thrilled to be in this new house I got used to the questionable decor choices made by the previous owner. I painted a few rooms with my family's help and that was it.

Last week after a big snowfall I decided to run on the treadmill in my basement and watch the Nate Berkus show. I got inspired to "spruce up" my entryway. I looked around for things I already had that I could use in different places and had a plan. But this rug, this rug was not right. Is was the right size, but not the right color or style. 

I went searching today for another rug. I was convinced I'd find one at Target, nope. Tuesday Morning, nope. Marshall's, nope. JC Penney, nope. Macy's, nope. I came home defeated. Without a new rug. My whole attitude had changed. I was angry that the dishes weren't done, angry that the toys were everywhere and angry that I still had this same rug.

I know this rug looks perfectly acceptable in the mud room entry, but I'm done with it. I'm done with remembering where it used to be, who used to step on it and who doesn't step on it any longer. And I was done with it TODAY, not in a few weeks when I can afford to buy a new one from Pottery Barn or Crate and Barrel, I wanted it gone.

Now I sit on my ten year old couch and stare at that rug and I am fully aware what I am doing. This afternoon, I wanted to go out and pick exactly what I wanted and buy it, and throw away another piece of my old life. If I can't do it all at once, it will have to be a piece at a time. Things around me that remind me of how things were, are hard these days. 

I'm taking delivery of a wheelchair van this month to replace my other minivan, Dermot's wheelchair is getting an "upgrade" to a rigid shell rather than a soft molded seat, and my boy is getting too big. Too big for me to carry, almost too big for me to hold and too big for me to lift. All of this overwhelms me sometimes and I look for little things I can control or change, like the rug in the entryway. 

Grief visits me often and then it leaves. Hopefully the rug will leave soon too.

Friday, February 17, 2012

Perspective

As she rolled into the waiting room I recognized the wheels right away. The curve in the metal tubing was almost identical. Although larger and purple, it was most certainly the same wheelchair as Dermot's. I felt a strange kinship with the owner of this chair and I hadn't even looked up yet.

She had to be about 12 years old, her body was stiff, limbs twisted, her face quite gaunt. Her medium length blond hair was pulled back and looked as though it hadn't had a proper washing in weeks. I was set aback. Feeling quite awkward, I tried to make eye contact with the girl's mom. Eager to give her a knowing smile to let her know that I know what she's going through. I did not succeed with my eye contact so I resumed my focus on Dermot while we continued our never ending wait in the doctor's lobby.

I couldn't help sneaking glances of this severely disabled girl. A respirator hose protruded from her throat, I could see the machine that was breathing for her carefully placed behind the same wheelchair I push around daily. Then I glanced at her AFO's that covered the entire lower part of her legs. I thought about Dermot's tiny SMO's that he only wears when he's standing. I looked at her hair once again, I tried to imagine the huge task of bathing her. It was obvious she didn't receive a bath everyday or even every other day like Dermot. I wondered if she had a bath lift or a shower chair that her mother placed her in to clean her. Did she have to be hooked up to the respirator at all times? Did she even get showers? Perhaps she was only allowed sponge baths. I thought about how much Dermot enjoyed his baths and felt a tinge of gratitude.
I noticed the spasticity in her limbs and wondered if she was here to for a follow up visit after hip surgery, I thought of Dermot's upcoming Botox injections and wondering when we would wind up on the road to hip and/or spine surgery.

Then she vocalized. A very faint "ahhh" and I watched as Dermot perked up. She "talked" again, this time louder, Dermot smiled. Another "ahhh", with his grin going strong, Dermot answered back with his own brand of "AHH!". This went on for a minute or two, then I got it. Eye contact. Her mom and I smiled at each other.

It was an exhausting three hour and fifteen minute visit at the physiatrist that morning. A few x-rays, a preliminary conversation with the nurse, a long conversation with the doctor that ended with an explanation about proper hip development, an appointment for next Wednesday for Botox injections in each hamstring, an appointment to meet an orthopedic surgeon, an appointment for a wheelchair upgrade, a prescription for something to stop Dermot's drooling and a SMO fitting. It was only natural that I was feeling overwhelmed and sad, but going back out to the waiting room to wait for the ortho guy to fix Dermot's braces was a reminder.

No matter how hard I think my life is, and it is pretty hard at times, it could always be worse. I could be the mom that wheels her child into the waiting room, with the respirator, the unwashed hair and the full leg braces.

Perspective. It's a powerful thing.