Monday, December 6, 2010

Gift

My neck is sore. Somehow the giant stuffed frog that I'm using as a pillow just isn't cutting it. I'm lodged between the safety rail of Dermot's bed and the foam wedge that Dermot sleeps on to keep his head elevated. I'm listening to the soft cello of Yo Yo Ma playing the Bach concerto, a slight snore from Dermot's breath and my cat purring next to me.

I received a gift tonight, I felt Dermot fall asleep. We were laying together, he was playing with my fingers, a few delicate whines later and he drifts off while holding my hands in his. My tears fall softly, tears of love and contentment. A few moments later, my cat appears on the bed and finds her spot in the crux of my side and begins to purr. She's predictable like that. I believe she smells the salt in the tears and knows where she's needed. Perhaps a servant of the man upstairs sent to comfort me.

I felt that ache in my gut today, the one that never truly goes away. The one that tells me things are different. Through the years of dealing with this ache I've tried many ways to make it go away. Therapy, running, eating, spending money, cleaning until there's nothing else to clean, baking lots and lots of cookies. All of these are temporary fixes because I know this ache will always be with me. I remember describing it to my friends a few years ago, they looked puzzled by my explanation.The only thing I can do is accept it and keep going.

Dermot has given me many gifts in his short life so far. Patience, tolerance, compassion, selflessness and a degree of love I didn't know I could possess. He gives me these gifts in his own way. When he's sick he needs me to be there for him, drop everything. When he's happy, he teaches me to find joy in tiny instances. When he's sad he proves to me that he indeed knows when I'm holding him over anyone else.

So tonight, I walked into his room to see why he was whining. He'd thrown up a bit on his pajama shirt, I proceeded to change his shirt and while I was doing it, he was smiling and purred in his own sort of way. He knows when I'm with him. I threw his pajama top in his laundry basket and climbed into bed with him. That was my gift. He knew it was me, I needed that today. I comforted him while he comforted me. And the cat, she's still sleeping with Dermot, keeping him warm.

Thanks, thanks for the gift and thanks for the cat.

Wednesday, November 24, 2010

Adversity.

Things are fine, things are routine. I watch two of my boys grow and develop at a lightening fast pace. The two year old is remarkable. I think to myself, are all two year-olds this amazing? Or am I just paying more attention? My six year old is growing into his own person. Full of joy and compassion, frustration and determination. Are all six year-olds like this? Or am I just paying more attention?

I watch Dermot stay the same each day. Days filled with stretching, meds, equipment, lifting, drooling, and all the other minor irritants that eat at my sense of well being each day. I'm angry that these things don't allow me the patience for the everyday occurrences of life. Everything seems amplified and dampened all at once. Things that used to matter so much don't and things that shouldn't matter do.

We took a trip down to Mayo Clinic a few weeks ago. We had a few tests done (EEG, Blood draw), saw a few doctors (metabolic/geneticist, a neurologist/epilepsy specialist) We answer all of their questions about Dermot. "Was your pregnancy normal?" When was his first seizure?" "What drugs has he been on?" "Can he roll over, sit up, crawl?" "Is he developing new skills?"

Sometimes I drive alone in my car with the music way too loud and I am overcome by grief. Sometimes I'm out running and begin to cry spontaneously. Sometimes I watch my other boys hug each other goodnight and get teary eyed. Sometimes it just too much to bear. Sometimes.

There's no way to describe the feeling of watching your son grow, but not develop. Wishing he'd stop growing so I'll always be able to hold and carry him. Knowing that the day will come soon when I will not be able to lift and carry him. Helpless. Preparing for the next stage of Dermot's life is beyond difficult. Each day I try to move towards it. I leave him in his chair longer than I want to because he's too heavy to lift and my back is already telling me enough. I order the wheelchair from the medical supply company. I consider ripping the carpet out of the hallway so his chair rolls smoothly to his room.

I have to catch my breath before the silent panic inside me takes over. I have believe that Dermot is making me a better person for everyone in my life. "Adversity introduces man to himself" a poet once wrote. I do believe that. I try not to judge, I try not to gossip, I help others whenever I am needed. I forgive myself for not being perfect and I allow myself to feel my feelings. Most of the time, I don't question it.

That's me, up past midnight, that's what I wanted to say.

Tuesday, October 5, 2010

Strolling along

So I did it. I took Dermot on a bike ride today. He smiled and I smiled too.

I held a garage sale to raise funds for this $1000 bike trailer, I came within $80 and I smiled.

Ever since Dermot was born I've been buying strollers.

First was the Graco Duoglider, too long and hard to steer.

Then there's the Dreamer Design jogger, too big!

Then, a Joovy Double. Way too heavy, plus Dermot was already too big for it.

An Inglesina Zippy, worked for a while, but didn't support Dermot's body enough.

Then the BOB Double, loved it! Dermot's too big for it now.

Now we use a Dreamer Design Double that I procured from ebay because they stopped making them in 2008. I'm guessing we'll be done with that one by next spring because Dermot's getting so big.

Then, an Otto Bock Kimba. We still have this one, he uses it for school and getting around, but he's maxed out the growth in this one.

What's next? A wheelchair. A real wheelchair. Gulp. 50+ lbs. of metal and foam. We're shopping for one now. It's a process that I'm not looking forward  to.

But for now, I get to take my son on bike rides. Like any other mom and any other kid.

Today that was enough. It was more than enough.

Saturday, August 21, 2010

Why?

"Why is he in that?" the delicate voice asked.

All around me are children. Whizzing pass in all directions. One year olds plotting out their first steps with Grandma following their every move, toddlers running just because they can, and dozens of preschoolers replicating the motions of a beehive, all dressed in over sized bright colored t-shirts that loudly display which group they belong to.

The delicate voice belongs to one of these preschoolers. Her t-shirt is green, as green as green can get. Standing next to her with a blank almost rude (if he wasn't three) stare on his face was another green t-shirt named Connor.

First I tried to ignore this voice, with all the chaos at the museum I decided to plant myself and Dermot on a bench inside the exhibit room so I could still watch my other boys enjoy their play.
She asked again, "why is he in that?" I summoned up some of my mommy sweetness and answered her.
"He can't walk, this is how he gets around," I said politely.
"Why can't he walk?"
"Well, God made his brain different than you and me. He can't make his legs work the right way."
"That's too bad, how old is he?"
"He's four."
"How old are you?" I ask, hoping to distract her from any more of the difficult questions.
"I'm three, does he go to school?"
"yes, he does, do you?"
"Yes, I'm with my school, this is Connor" she gestures to the short blond boy who's been staring, with this mouth hung open, at Dermot for the last five minutes.
"Hi Connor" I say cheerfully, hoping to break his glance from my son.
Nothing, still staring...
The delicate voice asks me if  Dermot has any baby brothers or sisters, I go on to mention Ryan and Owen. Connor finally gets distracted enough to stop his staring.
I tell them his name they tell me theirs and ask them if they'd like to say hi to him. They do.
"Have fun the on the rest of your field trip" I say while I round up the boys to move on to another exhibit at the children's museum.

I can handle a delicate voice asking questions. Actually I appreciate a delicate voice asking questions. They are honest, unfiltered by social graces and motivated by simple curiosity. It's the stares that get me. From the moms, the older kids, the grandparents. All tinged with a level of pity that brings up my insecurities if I I'm not prepared.

On this day, at the Children's Museum I was in no mood for the countless stares and the "non-stares" where they look, but when I make eye contact with them they look away fast and pretend they weren't just trying to figure out what's wrong with Dermot. I just wanted to take ALL of my kids to a place they hadn't been for a while and spend a few hours exploring.

By the end of the visit to the museum I found myself hiding in a corner of the hallway, sitting on a bench holding Dermot, as almost to protect him. My other boys, laughing and running with the babysitter in the anthill exhibit. I was pleasantly surprised to have a young mother with an infant sit down to feed her 4-month old. We exchanged pleasantries and were chatting a bit. Then Dermot, as he often does nowadays, threw up in the burp cloth I was holding in my hand. The young mom left almost immediately, I was still wiping off Dermot.

"That's IT." I said out loud to myself, "We're out of here". I loaded Dermot into his wheelchair and rolled him into the crowded anthill exhibit to collect Owen and Ryan and Jess. Too many children...
I was close to a meltdown when I noticed one little girl standing still in the chaos, looking straight at me. She smiled and waved. As I smiled back to her my anxiety lifted, I took a deep breath and watched the children play until Owen arrived at my feet. "Ready to go honey?" "Okay mommy, Ryan's coming too"

As we drove home from the museum that afternoon I remembered something about that delicate voice and our conversation. I remembered her name.

Her name was Grace.

Sunday, July 11, 2010

I don't want to

There's a giant deer fly circling my head as I walk gingerly through the sunlight field that leads to the lake. I'm dressed in my beat up old flip flops and a ten year old bikini. Dermot lets out a small burp while we travel down to the beach, then unfortunately, he throws up on my chest. Oh well, we can rinse off in the lake. It's at least 50 more feet and my biceps are burning from carrying his 36 pound body all the way from my mom's deck. I'm overcome by fear. It sweeps over me like a wave. I stop to collect myself, as I continue on three or four other flies have joined the other in efforts to drive me completely insane.

I stop at the incline. Twenty steps to the water. Fifteen of them are at a steep, dirt filled incline. "I hate this!" I say to myself. I look down in the water to see my husband playing joyfully with my six-year old. My step-dad is guiding my two-year old through the murky water. Smiles so big I can see all of their teeth. It's funny the flies circling them don't seem to be bothersome. My mom stands in ankle deep water and asks "do you need any help honey?" "No, I'm fine" I say. I am clearly not fine. I've got puke flowing down my chest, my arms are struggling to keep Dermot up and I'm praying to God that I don't wipe out on the hill that separates me and Dermot from the rest of my family.

I made it. I'm still really shaky. I don't mind one bit sitting in the city wading pool with Dermot. But the idea of sitting on the bottom of the lake with the weeds and leeches freaks me out. I want to go back to the cabin, bring Dermot back up there, take his swimsuit off and wrap him up in a warm towel and sit inside where it's safe. I don't. My husband offers to take Dermot, I quickly agree and hand him over. I decide to keep my flip flops on in the lake and I walk out to where my two year old is wading. I take him out to the deeper water with me and rinse the puke from my suit. then he goes back to grandpa and I start kicking out away from the weeds, away from the leeches, away from the flies. I feel it start to lift, I'm coming back. Sue. Here I am. Right here.

I don't want to run, I don't want to eat, I don't want to talk about it, I don't want to read, I don't want to weed the garden, I don't want to write. These are the things I KNOW make me feel better.

I don't want to pour one more drop of formula in that syringe, or wipe one more drip of spit up or suction up one more ounce of secretions or wash one more puke filled t-shirt. These are the things I KNOW I have to do everyday.

I've been holding it all in. The longer it stays in, the easier a moment like swimming in the lake destroys my sanity. Things start to fall apart, I stop caring for myself, I start expect too much from others and I lose perspective. Oh how easy my life would be if Dermot was typical. We could go anywhere and do most anything as a family and not even think twice about it. But then I wouldn't have Ryan, I wouldn't have all the friends that are in my life, I wouldn't truly know who I am and what I'm capable of doing. I can't take any of it back, but I do need to talk about it occasionally. I can't pretend I'm fine all the time. I can't worry about what you'll think of me if you see me crying again. The truth is, I cry a lot. But it's way worse when I don't.

Saturday, May 22, 2010

Number three

My mom requested I write about Ryan. I don't normally take "requests" but I thought about it. I don't write about Ryan because I don't ever worry about Ryan. Ryan gives me almost nothing but pure joy and gratitude. He has reached or exceeded every milestone. He walks, he talks, he runs, he smiles, he laughs, he kisses his brothers good night, he occasionally eats dirt, he eats his vegetables and sleeps through the night.

I believe Ryan is a gift. We planned to have him, but that's all I had to do with it. He came out of me after I giggled (literally). I've been giggling ever since. Ryan makes me remember what normal is. Ryan makes me remember I don't have control over the outcome. He makes me remember that it's not all up to Owen to achieve everything, to stay healthy or be there for Dermot when they all grow up.

Ryan loves his brothers and wants to be like them. I remember the first time I saw Ryan climb into Dermot's stander I cringed, but then I realized he wants to do what both of his big brothers do. I love watching Ryan try to play knee hockey with Owen. At two years old he's not that bad.

At two years old, Ryan has taught Owen how to be a big brother to both of his brothers, he has taught his parents to marvel at every single detail of his development, he's taught me how to laugh again and most importantly he's taught me that joy still exists in our family, it was there the whole time, I just didn't see it.

Thank you Ryan.
Thank you God.

Wednesday, May 19, 2010

Life gets in the way

So it's May 19th. I signed up for the Minneapolis Half Marathon on June 6th.


I'm not running. I'm done shaming myself. But truth be told, life gets in the way. That's why none of my plans are ever concrete. I've driven myself crazy trying to control the events and circumstances in my life, anything to hold on to. It doesn't work.


Someone gets sick, I don't sleep for a week. Someone else gets sick, I don't sleep. Try running after four hours of interrupted sleep. It's not fun.


I have been downplaying the emotional toll of a few recent occurrences in my life.


Dermot got a feeding tube, every night I hook Dermot up to a pump that feeds him in his sleep so he gets adequate nutrition throughout a 24 hour period.


Dermot is having trouble clearing his secretions, so tomorrow another machine will be delivered to my house to assist him in clearing his secretions.


Dermot was in jeopardy of losing physical therapy time at school, I met with the school staff to resolve the issue.


Dermot needs additional physical therapy, I found yet another physical therapist to try. I make the appointment, hoping to God I like this one.


I lost it a little last night, I spilled a little water from my glass. It felt good. These things I deal with on a day to day basis are incredibly difficult. They are emotionally draining. No parent should have to make the choices I make. I need to remember that.


I wake up, I conquer the tasks of the day, I get an hour or two to myself after everyone is in bed and I walk throughout the day with my head up, eyes forward and I am always willing to help someone in need. If I lose the desire to help others I know that something is wrong. I know I've lost my focus. None of this is about me anymore. It's about being the best person I can be and play the best game I can with the cards I've been dealt.


So right now, a half marathon isn't a realistic goal for me. Signing up for it did get me moving again. I'm still running four days a week, just not 9 miles at a time. Although the jury is still out on wearing the bikini this summer...

Tuesday, May 18, 2010

History












Here I am, days before I become a mother for the first time.





Here's Owen, I'm terrified and have no idea what I'm doing!




I'm better now. Owen is a great kid. I'd just had a miscarriage a week prior to this picture being taken.


This next photo shows Dermot only two months away....









Here's Dermot. Beautiful, I'm excited about my new guy. I knew how to take care a of a baby now. I can sit back and enjoy him.



Life changes fast. Life changes in an instant. You sit down for dinner and life as you know it ends. The question of self-pity.

Joan Didion


Dermot's first seizure November 17, 2006.









Saturday, April 3, 2010

Sixteen again?


Windows down, Diet Coke in my hand, Tom Petty's "You wreck me" playing way too loud on my radio, I pop a handful of the newly purchased M & M's in my mouth. For a moment, just a brief moment, it felt as if I was sixteen again, driving my beat up Mazda GLC in the spring air. Then I drove by my reflection in an office building's windows and I saw it. The minivan. I'm thirty nine years old and I'm a mom.


I got to thinking, what else am I? I'm a professional diaper changer, short order cook, personal care attendant, nurse, housekeeper, teacher, barber. All of these things I've become since being a mom.


What did I used to be? An professional event planner, a pretty good cook, an avid runner, a yoga enthusiast, a huge Oasis fan, a rabid Timberwolves fan, a recovering alcoholic, a sister, a daughter, a wife.


It's sad how those things just seemed to drop away slowly from my life. This week was a bit challenging, how do I entertain three kids all off from school and take care of my own interests and needs? I found out this morning that I didn't. I'm trying to become an avid runner again, but of course that takes time. I haven't run regularly since last fall and it's been an awakening to try again. My legs are sore, my lungs burn a bit and my motivation is lacking. Then having to negotiate time on the weekends with my husband, or decide what comes first, grocery shopping or a run. you know which one wins out. Then I find out that Oasis really did break up, are you kidding me? And don't even get me started on the Timberwolves.....haven't spoken with my brother in weeks, so not much of a sister, at least I'm still sober and still married.


My sister-in-law lives in town and visits frequently. She's single, has a great job and a cute house. She mentioned today that she's planning to run a half-marathon this summer, I felt a twinge in my gut. Oh how I envy her. I used to run a half-marathon every June, I really miss it. Training for it means at least, a guaranteed hour to myself every day, a feeling of accomplishment, not to mention a reason to try that bikini again. As I write this, I wonder what's stopping me? Is it just me? I just purchased a new double jogger that Dermot fits into, the weather is getting nicer every day, the boys mostly sleep through the night so I'm more rested and the sun is out later and later. Could it be that I'm the one taking these things that I used to be, away? Could I just be sitting in my house feeling paralyzed by my grief?


I know that once Ryan gets into school, my life will get more predictable, I know that there's way more life to live after forty, I know that I won't always be in this funk. But what I really NEED to know more than anything is that it's up to me to get up and get some of my life back. Go run, start cooking again, find another band to follow around the country, another sports team to cheer for....and remember that I won't ever be able to do everything I want, but I can do some of it. So I better get busy.

Tuesday, March 9, 2010

Yesterday

Yesterday I was angry. I was angry that you asked me to drive you to the airport, I was angry that I did it. I was angry that your biggest problem today was your two-year old's temper tantrums. I was angry that you were agonizing over which cellular phone to purchase. I was angry when you told me how lucky I was to have a little boy who wouldn't wiggle out of my arms when I wanted to hold him. I was angry that you complained how tired you were after bringing all three kids to the zoo by yourself. I was angry that you keep telling me that in a few years things will be so much easier because my kids will be older. I was angry that you spent the winter in Arizona. I was angry when you thought your life was over because you broke up with your boyfriend. I was angry that you get to go to yoga class. I was angry that you keep telling me how sorry you are for me. I was angry that you called me a saint. I was angry that you get to take a shower EVERY day. I was angry that you didn't call. I was angry that you don't see how easy your life is.

Then, I slept on it. I realized that everyone faces their own reality, everyday. For some people, a smart phone purchase IS a big deal. Some people AREN'T conditioned to take three kids to the zoo. Some people NEED to believe my life will be easier in a few years. And to some people being alone is the SCARIEST thing they can imagine.

I think back to when Owen was two years old. My friend's two year old son was diagnosed with a serious neurological disorder that has potential for brain tumors, blindness and other REALLY scary conditions. I saw this friend about twice a week for at least a year and a half. When I heard about her son, I did nothing. I didn't call, I didn't tell her how sorry I was, I didn't bring her dinner, I did nothing. My reality, back then, didn't equip me with any compassion for others. I never in a million years thought anything like that could happen to my child or my family. So I did nothing. For that I am truly sorry. For that I can have compassion for others, even if they don't know the right thing to say to me, or the best advice to give. the point is they tried, they wanted to be of service in some small way.

Today I don't have to be angry.

Today I have to say thank you.

Tuesday, March 2, 2010

It's in.


Dermot's surgery went well. Mom and dad have been learning all day how to use the tube and feed Dermot. He's been a champ through the whole process. Let's hope it's all worth it and that it will ultimately make him more comfortable.
Thanks to all for your kind words and prayers. I feel truly blessed to have such great friends and family.

Thursday, February 25, 2010

G-Tube


The Problem:

Aspiration syndromes include all conditions in which foreign substances are inhaled into the lungs. Most commonly, aspiration syndromes involve oral or gastric contents associated with gastroesophageal reflux (GER), swallowing dysfunction, neurological disorders, and structural abnormalities.

Complications:

Chronic lung disease may develop from repeated aspiration of refluxate.
Pulmonary fibrosis may occur over time secondary to repeated aspiration of small volumes of gastric secretions, promoting a progressive fibrotic pulmonary response.
Chronic bronchitis and bronchiectasis are also recognized complications.

The Solution:

Dear Parent/Guardian,

Dermot Sullivan, has been scheduled for a procedure at Children's Minneapolis with Dr. XXXXXXX on 03/01/2010 for their PEG Insert Standard G Tube. Here are the items to be done to prepare for your child's procedure:

HISTORY AND PHYSICAL EXAM: This must be completed within 7 days of your child's procedure. (This includes the day of appointment.) Please arrange this between 02/23/2010 and 03/01/2010. You will need to see your child's primary physician or pediatrician for this exam. The most important piece to this step is that you HAND CARRY a complete History and Physical examination from your primary physician/pediatrician's office to check in at the above medical facility.

DIET RESTRICTIONS: You will need to carefully monitor and follow these restrictions to your child's diet.
Clear Liquids until: 8:30 AM (2 hours prior to arrival) your child may have clear liquids. Please see the Clear Liquid Diet Guidelines.
Milk products and formula until: 4:30 AM (6 hours prior to arrival)
Solids until: 2:30 AM (8 hours prior to arrival)
Special Instructions: 2/24 Office Visit okay for Pre-Op

To meet energy needs, please include liquids that both contain sugar as well as those without. If your child is a diabetic, consult your physician for a diabetic meal plan.
Please call our office if you have any questions:


Clear Liquid Diet Guidelines

Allowed Not Allowed
Water Dairy Products (milk, cheese, etc)
Broth (no noodles) Cream Soups
Coffee Meat, Fish, Fowl
Tea, regular or decaf Red or purple juices, pop
Carbonated beverages Juice with pulp (orange, tomato, etc)
Gatorade (not red or purple) Bread, pasta, rice, potatoes
Flavored Gelatin
Plain juice popsicles Cereal
Plain hard candy Vegetables, fruits
Pedialyte Desserts (cakes, cookies)
Strained fruit juices (no pulp) Soft candy (chocolate, candy bars)
Honey, sugar, salt, pepper Nuts, seeds, popcorn

Please Note:
If you have Diabetes, please ask your regular doctor for diet and medication restrictions.
Oral laxatives may cause mild cramping, bloating or nausea. Always stay near a toilet when using laxatives.
Your child may have nothing by mouth for three hours prior to the procedure. Your child may have nothing to eat or drink after on .

Morning Medications: If medication is taken in the morning, please take 3 hours prior or hold mediation until after procedure.

REGISTERING: Please arrive at the above mentioned facility at 10:30 AM, your procedure will start at 12:00 PM.

GOING HOME: Your child may require between 1 to 4 hours to recover from sedation (if sedation is required) used during the procedure, please add this to your expected time to be at Children's. After your child's physician(s) feel that he/she will be allowed to go home.

If you have any questions or need to reschedule, please feel free to call the office and press option number 1 for scheduling.

Exit Scheduler

Tuesday, February 23, 2010

Fourth time

Just as I crossed the last thing off my grocery list, I heard a muffled chime from my purse. I thought to myself, I wonder if its Dermot's school. Not really believing it was, but teacher Jan was on the other end of the line.

"Hi Sue, Laurie has administered the Diastat for Dermot", she said with a tinge of sadness in her voice. "Okay, I'll be right there" I said. I looked down at my full cart of much needed groceries and pushed them to the register. One part of me wanted to continue and check out as if nothing was happening, the other, wiser part said "get the hell out of here". Another abadoned cart at the grocery store.

This time I call Joe, "I'll meet you there" he says. Three stoplights later and a quick jaunt on the highway and I'm there. Wiped the tears away and ask the receptionist for admittance to the special education wing of the school. I walk briskly to Dermot's classroom. The other little boys are having circle time with the student teacher and look over quickly as I arrive, then they're back to their lesson. Dermot is lying limp in the school nurse's lap, separated from the other kids by a partition. He's still seizing, fifteen minutes after the Diastat is given. The nurse decides to call 911. Is this really happening? I think to myself, yep it is.

Dermot's eyes are open, mouth open, tongue stuck to the roof of his mouth. He's breathing, that's good, no response to stimulis (mom kissing him, dad calling his name over and over, etc.). A police officer gets there first, I think it's proctocol. EMT's are not far behind. They check his vitals, glucose, all are within normal range. Finally Dermot starts moving his hand, he searches for my hand. He's still not all there. Then I feel his stomach muscles contract. He wants to sit up. Absolutely Dermot! Let me help you up. Joe decides we don't need to go to the hospital, I didn't know what to do. Maybe that's why I asked Joe to meet me there this time. Thanks Joe, thank you for being there.

As I write this, Dermot and Joe are at the hospital lab getting blood drawn to make sure his drug levels are all in therapeutic range. Then we'll call the neurologist again. They'll tell us to wait and see, then give us a different drug to add to the growing list.

Tomorrow we're off to the gastroenterologist to talk about getting Dermot a feeding tube, but that's tomorrow. I'll write about that tomorrow...

Tuesday, February 2, 2010

Full glass of water


I'm a full glass of water. Don't tip me, don't bump me, and please don't add anything else to my glass. If you leave me alone I won't spill anything, I won't get anyone wet and I won't go anywhere.

Occasionally when people ask me how I'm doing. My response is "I'm a full glass of water". I walk around my daily life functioning with a full head and a full heart.

My head is full of tasks: grocery shopping, remember to send the order form in Owen's backpack, remember to set the DVR for LOST, call Jenn, Tanja, Dad, Pat, Rebecca and the Toyota service guy about some alarming recall? Get Dermot's prescription refilled, go to the hardware store for a toilet thing-a-ma-jingy, make cookies, fold the laundry, decide what's for dinner, Find a new physical therapist for Dermot, confirm his eye appointment, schedule flight to Arizona. Empty the dishwasher, fill the dishwasher, vacuum the dog hair off the living room couch...

My heart is full of grief and apathy: Wake up, get the meds ready for Dermot-pulimcort, albuterol, prevacid, then get the milk in his cup (rice milk because we think he's lactose intolerant) add the packet of thickener (Dermot aspirates liquids so we need to thicken all his fluids), sit down and hold Dermot like an infant to feed him his milk, burp Dermot like an infant because he's not strong enough to burp without help. Bring Dermot to kitchen, place gently and correctly in his Leckey Mygo chair, secure the chest harness and waist strap. Prepare his breakfast of soy yogurt and banana that has been carefully smashed with a fork, don't forget his waterproof bib and his therapeutic "maroon" spoon. Wait you forgot his other meds: Topamax, Keppra, Carnitine and Depakote...five pills and one syringe. After breakfast, roll Dermot into the living room, put socks on, fit Dermot with his SMO ankle supports, lift him out of his chair, very carefully lower him down into the stander and begin securing him, foot pads, knees straps, hip strap, chest harness. Ready, 1, 2, 3 up! Find a toy of interest for his tray. Sit with him for 30 minutes...done. Release the straps and harness, carefully lift Dermot out of the stander, gently place him on the end of the couch, take off the shoes and SMO's. Undress Dermot, then dress Dermot in his school clothes. Comfortable shirt and sweatpants with sneakers. Don't forget his glasses. Get his jacket on, be sure to start with his left arm because otherwise his arms are too tightened up to stretch out through his sleeves. Go to the garage, open the van door, grab the remote for the mechanical seat, adjust it to the correct position, go back to living room get Dermot, take his glasses off before picking him up, bring to the van, place him in the seat, all buckled in, put his glasses back on, move the seat back into the van, close the door. Drive to school, turn into the parking lot, adjust the disability parking sign on my mirror, park the car. Get out of the van, lift the 53 pound Otto Bock Kimba stroller out of the van, prepare the straps, lower Dermot's seat down and out of the van. Lift him into the stroller, secure the straps and harness, kiss him good bye and watch the teacher roll him into the classroom. Two and a half hours of down time begins now.

So much of my day is filled with tasks, all day long. Tasks I would have never imagined ever doing, I do these tasks everyday and because I do them every day I forget sometimes to feel anything about my day. It is moments like right now, when the house is quiet and I'm up WAY too late that I can let those feelings creep in for a while, "pour out some the water" so to speak so that when I wake up tomorrow and do it all over again, it seems normal to me. I won't think about how un-normal my life with Dermot really is. I think that's why "the guy upstairs" keeps parents like me so busy for the first years of our new journey, so we don't feel all of the pain and all of the anguish too abruptly. I wouldn't be able to function and do all of the things I need to do to be Dermot's mom. I'm grateful for that, I'm also grateful for moments like right now. Quiet house, not so quiet heart.

Wednesday, January 20, 2010

Disability Parking


Why Disability Parking?
Disability parking is not a special privilege, but a necessity. The spaces are needed to give people with mobility limitations the same opportunities to use public or private facilities as people who do not have disabilities.
Because some people cannot walk, or because a visible or hidden impairment makes walking difficult or hazardous, people with disabilities are at a disadvantage. This is particularly true in winter if disability parking is not provided or is left obstructed.
Disability parking spaces also provide extra space for people in wheelchairs when getting in and out of a vehicle.

Understand that misuse comes with consequences.

Non-certified persons who park in disability parking spaces can be fined from $100-$200
Hmm, I can't even tell you a time when I've seen this law enforced. I remember driving before this mattered so much to me, it wouldn't even occur to me to use one of these spots.
Unfortunately, since September 2009 I have witnessed a least ten out right violations at the Community Center where Dermot attends school four days a week. One woman in her late forties even parked in a spot right up front, while she attended a yoga class. Most of the women I've seen are moms dropping of their toddlers in the cold and the snow. I imagine they use that as an excuse and the fact that they'll "only be a few minutes" makes it okay.
I think not. You see, having a child with disabilites affords me VERY few luxuries, but having a parking spot available to me is one "luxury" I have absolutely earned.
So the next time you see someone parking where they're not supposed to I invite you to do the non-Minnesotan thing and confront them. I do every time and do they ever feel awful after I ask them if their legs work and if their children's legs work...


Thanks for indulging my angry rant...