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


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.


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


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


"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


"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:
Sue Ellen

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.