Monday, February 27, 2017


Anxiety attacks present themselves in different ways.

Mine appear to come out of nowhere. Seemingly I'm doing "fine" and then something happens and I'm running to the public restroom trying to hold myself together, while at my sons hockey game.

A few saturday nights ago, I was the first of the parents to arrive for the third game in four game tournament. The lights go out, the players are being introduced, and I'm alone on the bleachers. The opposing team's parents give me a puzzled glance and I shrug my shoulders.

The rest of the parents arrive early into the first period. I would say half were holding the drinks they brought along on the shuttle bus. No one was out of hand, but as  recovering alcoholic, I was quick to notice that a good majority had a subtle shift in their inhibitions. They quickly surrounded me apologetically on the bleachers. The volume was higher, the outrage for blown calls was greater, my heart started to beat louder.

To my left, was a mom who had been collecting information on me and my son, not the son that was there, but the son that was home, with my husband. The son that would not be able to thrive in a hockey tournament setting. The questions had been steady all weekend. Where's Dermot? Is it hard when you have to leave Dermot at home? How does Joe do with your son Dermot? Is he able to care for him by himself, or do you have a nurse to help? How does he communicate? How do you know what he needs?

And to my right was a self confessed tea totaller who was still working on her first beer. Her son seems to get called for too many penalties due to his size and she was getting sick of it.

The moms I usually sit with were in front of me and were unaware of my mounting anxiety. If it was just the team parents that were there I would have been fine. But three separate occasions from across the ice, we had all witnessed the coach of our team, scream at a few of our children. I mean turn red, then purple because he was so worked up. These twelve year old boys had been told "time and time again", not to do what they were doing and choose to do it anyway. One crossed the blue line at an inopportune time, the other didn't come out of the game when his replacement was ready to get on the ice. And the other, my kid, got a roughing penalty called on him while he was defending his goalie.

Shame came to these twelve year old boys. It was swift and loud and completely inappropriate. "That's the problem with youth sports these days" I could hear my husband's voice say in my head.

That was it, all I wanted to do was run to the bench and punch the coach in the throat. I stood up and ran to the bathroom. Locked in a stall and began to silently hyperventilate. I looked up trying to quell the tears for coming and destroying the white in my eyes. I couldn't do it tonight. This wasn't the time, I told myself. Keep it together, find a safer place.

I walked directly back to my spot and my purse was waiting for me, I grabbed it and ran up to the other side where a dad was up there with a few of the younger siblings. This dad was safe. This dad had been where I was. He wasn't afraid of crazy. I didn't need to talk, I just needed to be next to someone who's struggled too. I'm sure he was completing unaware of his calming presence for me, but I appreciated it.

This story doesn't seem like much on its own. but after I returned home from the three night tournament I was struck and how immensely sad I was. For a day I couldn't figure it out. I stood a few nights in a row crying to myself while watching Dermot sleep before I went off to bed at nearly one a.m.

This is what acute grief looks like:
It looks normal,
it looks like the perfect house
the perfect outfit
too many packages purchased in the wee hours of the night arriving via UPS
a stack of unread books on my night stand
ramen noodle cups in the pantry because I don't want to cook
hundreds of dollars worth of jewelry making materials and no creative juices flowing for over a year
explosive anger directed at my puppy for eating the pizza on the counter
the empty bag of peanut butter M&M's in the trash and the second empty bag in the floor of my car.
It looks like everything is going to be okay but it isn't.

My son is dying. Bit by miniscule bit, a piece of him disappears each day. His voice, his smile, his arm movements, his flexibility, his "normal looking" hands and feet. It crushes me. Most days I keep swimming along doing the day to day tasks, not thinking too much about the future. I can't even answer you when you ask if we have any spring break plans, But every so often, when I switch back and forth from "Typical" mom and "special needs" mom the transition throws me for a loop and I end up wondering why I just ate an entire 20 oz. bag of M&M's.

My family's journey is up and down, better and worse, yin and yang. I need to remember that. I need to have compassion for myself and my feelings. Let myself be sad, allow the happiness to take over every once and a while. Most of all, I need to remember to talk about it, so I don't end up in the restroom stall hyperventilating, alone.

Tuesday, November 29, 2016


I was sitting in my weekly twelve step meeting. I was to speak about the holidays.

I read page 420 out loud to the group: "Perhaps the best thing of all for me is to remember that my serenity is inversely proportional to my expectations...."

I sighed deeply after my reading was over...

I want to be in this place. I want to have this level of acceptance. But I'm tired y'all.

It's been ten years of constant life adjustments and grief. The list is long.
There's no end in sight. Nor would I want there to be.
I experience a sense of loss each and every day and right now the scale is tipped too far one way.

I've been collecting people in my mind. People I know now. People I used to know. People I want to know. People who understand. People who left. People who show up. People I left.
I remember them all.

I need to stop collecting and start accepting.

In this ten year journey with my son Dermot I have worked tirelessly at making myself a better human. A kinder being. A fair parent. A good friend. A tolerable daughter. An accepting sister. A compassionate soul that runs toward pain, not away from it. I expect others to do the same, but that's not how it works. I know that in my head, but when I get to the low place where I start "collecting", my heart forgets that it doesn't work that way. People's lives go on....

The book keeps telling me that Acceptance is the key to my relationships. "I must keep my magnifying mind on my acceptance and off my expectations, for my serenity is directly proportional to my level of acceptance."

Accept I must.

Sunday, August 28, 2016

Sunday morning.

I just walked a mile home from our church that just doesn't do it for me anymore. Three priests in a year. The first one was why we went. he was transferred up to north Minneapolis because in the Catholic Church they move the guys around every ten years or so (no tasteless jokes please).

We all drove to church. Dermot was really congested, but we were confident that he'd cough it up by the time we got there. No cough. I went in and Joe stayed in the car with Dermot and the suction machine. Waiting for the cough.

The boys and I sat thru the first reading, no Joe and Dermot. Second reading, still no Joe and Dermot. I texted (yes, in church!). They were headed home. We'd walk home. Only a mile away, no big deal.

I sat thru the homily. I struggled to stay engaged in the wordy "story" that used to be my favorite part of church. Ryan on one side, whining and fidgeting. Owen on the other sitting dutifully.

In my head I wondered how it would affect the kids if we got up and left. What lesson would I be teaching? Because all I wanted to do was take off. I looked around at all the families. We hardly knew any of them. Small talk was all we gathered from our experiences lately. Then I drifted into more thoughts...

What do people see when they look at my family? Do they see me as a "saint"? Do they fear the rawness of our situation? Is it just easier to not get too close to us? Why don't we get invited places anymore? Is it just easier to admire my "strength" on Facebook? Is it difficult to be friends with us because we walk around with an open wound?  Do I push people away? Is it safer for me to retreat and not risk new situations? Are Ryan's recent behavioral outbursts just a manifestation of our family situation? Is he so starving for attention that he says things to me that would make any "regular" mom freak out and call a shrink?

Finally, the priest was done talking. Not sure what today's message was. I know my message. Keep on swimming. Keep living. Keep trying. Maybe this isn't the church for us anymore. Maybe there's another place for us. Maybe I'll ask my other catholic friends about their churches. Maybe I'll investigate them some Sunday morning without Dermot. To see if it's safe. To see if the people are kind. To see if we will be accepted. Truth is I'll never know until we try. But then we'll have to try and that takes energy.

As we walked home down a shady 51st street, I endured an onslaught of comments from Ryan. He told me how much he hated me. How mean I am to him, how badly he wants to live in a different family and how he never gets to have any fun. I agreed with him. I told him that life isn't fair. Ever. I told him that I loved him and that someday he will remember this morning and think to himself how wrong he was about me. Until then, I'm ready to be the reason for all his problems. Gladly. He's only eight and none of the bullshit that he deals with on a daily basis is his fault. I'm 45 and I know that none of the bullshit I deal with is anyone's fault. It's just bullshit.

Wednesday, July 6, 2016

July 18th.

July 18th is the date of Dermot's surgery.

His spine turns in the shape of an S.

80 degrees.

His right side of his internal organs are getting smushed.

Lungs, smushed.

Ribs, so close they almost touch.

Shoulder protrudes outward.

Head and neck automatically turns to the left.

The hump on his back grows more prominent each day.

The brace that he wears doesn't seem to fit him anymore.

This didn't happen overnight. it's been a long time coming. every six months the x-rays prove that as Dermot grows, the curve gets worse.

The brace doesn't fit him anymore.

We struggle with the decision of surgery.

Dermot is a fragile human being.

Respiratory distress is our first concern.

Pain is our second.

Length and ease of recovery is uncertain.

Dermot's spine isn't getting straighter.

Were are in the midst of multiple doctor's visits.

Dotting the i's and crossing the t's.

Doing everything we can to ensure that the surgery is a success.


Orthopedic surgeon.

Another orthopedic surgeon.

Special needs pediatrician.

Another pediatrician.


EKG, and some other heart test I can never remember the name to...

Now comes the waiting.

The anxiety attacks.

The doubt.

The prayers.

The therapy appointments.

The asking for help....

Wednesday, April 27, 2016


She's going to hate that I wrote about her. She's not going to want to talk about it.

The first time I saw her was six years ago at a Kindergarten class party. Hands on her hips, speaking uncomfortably loud to her son "Sumner Mark!".

Who's that? I wondered. Her son was friendly and talkative, he knew more about Star Wars than anyone I knew. I would find out later she knew just as much and wasn't afraid to share it.

She invited Owen over for his very first sleep over, I was worried, he was only five. She said not to worry and rattled off a detailed itinerary for the evening to sooth my insecurity. She has continued to go out of her way to sooth my insecurities. She was enthusiastic about Dermot. Few other friends took to him like she did. Her comfort around him made me at ease with her immediately. She was a safe person.

There's a certain, I don't give a hoot about what people think attitude about her. Yes, she drives the appropriate Edina car, has the appropriate Edina house and was a bit too involved in the PTO politics at the school from the get go. But that's only what you see if you don't know her.

She is kind, hilarious, unapologetic, loyal, impatient, brilliant, honest, and surprisingly vulnerable if she trusts you.

On the outside we have almost nothing in common. I love NASCAR, she loves Star Wars,  I run, she walks. I pray, she thinks. I practice yoga, she can barely touch her toes. Before I met her I was convinced that requirements for a lasting quality friendship would have to be, having the same interests. Clearly I was mistaken. While she is mocking me for having too many knick knacks in my home (she is especially fond of my collection of ceramic cats),
I am teasing her for her obsessive purchasing of designer handbags.

My panic has been at a low hum for the last few weeks. Every so often I realize that time is getting shorter. There's a date set, a plan in order and change is nearly upon us.

My friend is moving. 1000 miles away. This is the woman that I have spoken with nearly everyday for the last year and a half, not counting the days she's had off for various Star Wars conventions and Comic Book festivals. I'm not quite sure what will happen after she leaves, but I know my life will be significantly different.

No "I'm going to Sam's Club what do you need?" visits.

No impromptu visits to deliver my cookie container back to me.

No more annual neighborhood garage sale.

No dropping off my boys at her house to sleep over while I'm at the hospital with Dermot.

No showing up at Children's ER with my essentials and a hastily made ham sandwich with mayo instead of mustard.

No meeting me at Abbott to investigate the reason for my blown pupil and drive my mother back to Edina.

No hanging out at her house to watch her play with the crazy dog after her boys are asleep.

Okay, let's talk about the dog. My second best friend. My running buddy. My partner in fitness. No more running with the copper bullet tied to my waist. The dog's endearing excitement whenever I come to the door will be sorely missed. My own dogs have never been that excited about seeing me come home!

So I know that just because she is moving doesn't mean that we won't still be friends, but my person won't be close. My friend that comes over and grabs the suction wand without fear or regret and cares for my son without any reservations will be 1000 miles away. The one that walks in and tells me to get it together and encourages me to make tough decisions and loves me no matter what, will be 1000 miles away. That makes me panic quietly in my anxiety filled heart.

I am blessed to have met her. I am blessed to be able to be a true friend to her, just as she is to me.

There's no gossip or expectations. No judgments or put downs. No conditions or requirements.

Just friendship. A rare connection that has taught me to be a better person in every single area of my life.

Thank you Lisa. I will be your friend for as long as you'll have me.

Wednesday, January 13, 2016

How it is.

I hung up the phone and cried. Cried for the umpteenth time. I got what I wanted from the phone call, but I'm not happy.

She was telling me how it was. She was telling me what to do next. She was asking, yet again if I was using the respiratory vest, when he was well. I'm not an idiot. I know you were shaming me. I know you have guidelines and protocols to follow. As do I. He has mucus, that means antibiotics. Plus extra nebulizer treatments and Predisilone and suctioning and respiratory vest and frequent position changes. I know what to do. Believe me, I know what to do.

So my one comfort was taken away this morning. Dermot's pulminologist office has always been my reliable source for antibiotics when he is in respiratory distress. I call, they prescribe, we hopefully get better. But not today, today the young nurse tried to tell me, how it was going to be. She tried to tell me to go two more days before we intervened. She wasn't going to win this fight. Not today.

I told her that I've been dealing with his condition for over nine years and that he doesn't recover on his own. I reminded her that I wasn't looking for a prescription for morphine, just Augmentin. I told her that her suggestions alone weren't going to help Dermot. Because they never have. But I was crying while I told her. Dammit! I'm tired of crying to health professionals who try to tell me how it is. I know more than anyone else "how it is". I told the nurse that I just lost my one safe place to call when Dermot is ill. Never before had I had to fight for meds from them. Now that sense of safety is gone, probably left when Dermot's pulminologist left for his three week vacation...

Here's the kicker. I might be wrong. I don't know everything. His cough might be from our need to increase the dosage on his seizure meds that causes more secretions and more drowsiness. Perhaps we could decrease the dosage and his breathing would be better, but then would the cluster seizures would come back?

This is the spot that makes it almost to much to bear. When I have to decide what it is. When I have to decide which of Dermot's medical professionals I should call today to see if they can help.

The lung guy who's nurse decided to ruin my day? The brain guy who's goal is to stop Dermot's seizures? The gastro guy who's in charge of his feeding tube? The new pediatrician who he's seen a total of three times and who promised to take a lead role in his health care? The Bone guy who's main goal is to operate on Dermot to straighten his spine? So many doctors are responsible for bits and pieces, no one doctor sees ALL of Dermot. That's my job, of which I am grossly unqualified and underpaid for...

Tuesday, December 29, 2015

80 percent.

"How are you monitoring his seizures when you're head is in that book?" I asked my husband mid-morning a few days ago...

"Exactly the same way you do when you're Facebooking, online shopping and whatever else you do on your phone..." he snapped back, as if he was pulling his comeback out of his back pocket, almost relieved to have been able to finally use it.

Things are getting stressful. Things are progressing faster than we imagined.

Marriage is hard work. I know I've heard many people say that in the past, I've blown them of for using such a lame cliche over and over.

But, marriage is HARD WORK.

Staying married while having a child with severe and chronic health issues is nearly impossible work.

I remember when Dermot had just turned one. About the time I started reading a ton of books on parenting kids with special needs, I read a frightening statistic.

80% of all couples with special needs children divorce.

Holy shit. Those odds suck. They really suck.

Being a product of divorce myself I pledged to the best of my ability NOT to divorce, Now I'm reading this 80% statistic that blows me away. Granted I was only a few months into this special needs journey so there was no way to foresee what our lives would look like today.

But I can tell you that we are still married. It is not the marriage I dreamed of, It is not a story book tale of unconditional love, joy and commitment I expected it to be. But them again, whose marriage is?

My husband and I usually end up having heated "discussions" late at night after the boys are sleeping because there simply isn't a better time to "discuss" issues. Over the years these issues have changed dramatically. Gone are the days of whose turn is it to wake up with the baby or the talk about spending too much money on things we don't need. Now we weigh the pros and cons of allowing the orthopedic surgeon to insert metal rods into Dermot's spine to straighten the almost 70 degree curve, and if we decide to go through with it if we'll need to hire 24 hour nursing care for his recovery.

Last week we talked rather calmly about how tired we both were. How we feel as if we are on our own with our situation with Dermot. Most of our family are living their lives away from us, immersed in their own joys and struggles. We wondered to each other if we had communicated enough to our families how meaningful their time and visits are to us. We don't know.

I don't know.

I do know that in the last 13 years I have grown up in ways I could not have imagined. I'm still bossy, but now, I don't apologize for it. My intentions are clearer, I say what I mean. I get angry, but I know not to say too much until I think for a bit and almost always end up back in front of my husband explaining that I'm just so scared or worried or tired. And almost always, my husband receives me with acknowledging acceptance. Reminding me that we are in this together.

We are coming up on some hard decisions for Dermot's health that I don't want to make. We are living in our ninth year of having a helpless infant that needs 24-7 attention and care from at least one of us and we are worn out. We are sad, discouraged and resigned.

But we are still together.

Fuck that 80%...

Monday, October 12, 2015


It begins with an email. An announcement. A mother has lost her child. Another mother. A freak accident, no explanation that makes any sense to anyone.

The phone calls between friends begin. The tears. The "what should I do?" The "I can't imagine." The shock. The walking through the grocery store in a daze because you can't seem to comprehend why a little girl had to die.

I don't pretend to be best friend's with her mother, but I do call her a friend. When I think of her face, I see a smile and a warm greeting. She always walks toward me, not away. She doesn't deserve this heartbreak.

Her daughter was in my son's class two years in a row. I was disappointed when I heard she wouldn't be a classmate this year. She was the one I had picked to grow up with Ryan. I teased him occasionally to remember to be nice to her because you were going to take her to prom someday.

They live around the block from us. Her mom, dad and little brother. She had an infectious smile and a comfortable sense around adults. Her eyes as bright and smiley as her mother's, her golden disheveled curls revealed her inner tomboy and she could definitely hold her own while playing with the boys. She was adored by so many.

As I write, I have a feeling of disbelief. This feeling will continue for months to come. My heart sank and my tears are flowing. Knowing that her parents and brother's lives are forever altered breaks my heart. They will be followed by a dark cloud. Joy will be impossible for the coming days and months. Pain and grief will come into their lives uninvited. They will have to discover a way thru it all and carve out a new existence. A new way to live. Because they'll never go back to who they were before they lost her. You turn into someone else.

I hope that smile doesn't disappear completely. I hope that warm greeting can be returned by me and others in her life.

She will need everything we can give to her now. This grief is a terrifying thing. This pain is easier to look away from, but we need to go towards the pain, look it straight in the eye and be in it with her.

Bring them food, send them cards, attend memorials. but most of all keep showing up, remember her daughter, talk about her and miss her. Even after all the ceremonies are done and the food runs out and the relatives go home. Show up. Stop by. Share a hug. Anything to know she's not alone with her grief. That's what we can do.

We will miss you sweet Sophia.

Saturday, October 3, 2015

Home bound

I'm still here. Dermot is still here.

On September 9th, Dermot's leg was broken at school. We've been home bound ever since.

What does home bound mean? It means Dermot's in a rented reclining wheelchair that is next to impossible to put in my van. It is equipped with four flimsy nylon tie downs that make it "safe" to ride in a car. It also requires hastily purchased manual tie downs for $114 at the mobility van store.

So Dermot hasn't left the house since September 13th when we returned from Gillette Specialty Hospital. Unless you count the one time my husband took him for a walk around our neighborhood (otherwise known as "utopia") which he admits was excruciatingly difficult from a fitting in standpoint. I'm working up my courage to take him for a walk this afternoon. We'll see how that goes.

My fall as planned has not gone as planned at all. One nanny just delivered her first child (hooray for her, not hooray for the Sullivans), next nanny is only available on Thursdays, but not last Thursday. (Sorry!), Next one suffered a death in the family and needed to be with her own family. Then finally, the interview went great, the references all checked out, and the hopefully next nanny, declined my offer. So, my self-employed husband or my sister-in-law have been able to come home for 90 minutes a day for me to get my run in or my yoga class attended.

I have discovered a new grocery delivery service (thank god!). I have watched an obscene amount of television. I am thankful that I had never watched Parks and Recreation before, because it tends to be a bright spot in the early afternoon.

I have also been baking. Double chocolate chip muffins, lemon poppy seed muffins, my signature chocolate chip cookies, loaded oatmeal cookies, cake batter cookies, pumpkin cupcakes with cream cheese cupcakes, and my latest (in the oven as I write) pumpkin chocolate chip bread.

I have had a few visitors. Dermot's teacher comes for an hour each weekday, Owen and Ryan's piano teacher comes once a week. Dermot's therapists come to the house twice a week, and my parents are here now. But I'm always craving more connection. The fishbowl gets lonely when the only creatures around are a non-verbal nine year old boy, two very old beagles and a cat who insists on being pet as soon as the nebulizer machine comes on.

But I'm still home bound. Dermot's respiratory infection is almost gone, but I'm still in charge of the suction machine, diaper changes and nebulizer treatments. I'm still the person responsible.

We visit the surgeon on Monday morning for a progress report and x-ray, but then I have to wrap my head around letting him go back to school.

Will he be ok? Will he be excited or scared to go back? Will the teachers and staff know how to care for him safely? Will he be able to ride the bus in his normal wheelchair? Do I want him to?

Have I reconciled my feelings about what happened? I would hope so, but idle minds are the devil's playground. I've been idle...

Home bound. Still.

Friday, September 11, 2015


It reads:

"Good and gracious God, you have chosen the little ones,
the world's poor and lowly, to become rich in faith
and heirs to your Kingdom.

Open our eyes to see your presence everywhere and in all people
Open our ears to hear the challenge of your Word.
Loose our tongues to speak words of encouragement and strength
to those whose hearts are fearful
and sing the mighty wonders of your love."

I've been carrying around the program from last Sunday's church service in my purse because of this prayer. I looked at it while emptying out my purse last night.

Here's the deal. This is the part that scares me the most. The most difficult part.
Creating the new normal. In my journey with Dermot, I can't count on one hand the times I've hand to adjust to the new normal.
Usually just when I get used to the new normal, it changes.

Second week of school in full swing.

Yoga classes attended, paddle board purchased, running partner found, the new normal was looking awesome, until Wednesday.

The phone call from the school while I was on my run. It wasn't the first time I've received a call from the school nurse while I was running, just the latest.

I ran as fast as I could to the school to solve the situation which I was convinced was "no big deal". I arrived, calmly asked about Dermot's activities that day and lifted the blanket from his leg.

A flush of white came over me, Many "oh my God's came out in rapid succession and a few "Oh fuck's" followed.
Dermot's right thigh had a large swell and an unnecessary bend in it.


A call to 911 was made and my new normal was starting to form.

Another ambulance ride, another hospital, another doctor, another procedure.

Today I will learn to care for my son while his broken femur heals for the next couple of months.

I am grieving my free time lost, I am grieving my yoga classes gone, I am grieving my paddle board outings cancelled and I am grieving my new found freedom that I'd waited all summer to have.

I am sad.
I am angry.
I am fearful.
I am also filled with faith.
Filled with hope.


"One day some people came to the master and asked. 'How can you be happy in a world of such impermanence, where you cannot protect your loved ones from harm, illness and death?'
The master held up a glass and said, 'Someone gave me this glass, and I really like this glass.
It holds my water admirably and it glistens in the sunlight. I touch it and it rings!
One day the wind may blow it off the shelf, or my elbow may knock it from the table.
I know this glass in already broken, so I enjoy it incredibly.'

-Achaan Chah Subato

I will learn my new normal. and hope that it is only temporary.

Wednesday, September 9, 2015

Soft hands

I awoke with a right blown pupil. It was annoying as I was walking around the yard, taking the rented paddle board off the roof of the van and trying to read my facebook page on my phone. As my mom finished getting ready for the day, my step dad looked at my eyes and didn't seem particularly alarmed. Then my husband saw it and immediately said we needed to go get it checked out.

I'd like to think that I'm schooled in the ways of all things medical, but not for own health. Never had it occurred to me that I would experience any health issues. So a blown right pupil was something I'd need to google. Which in hindsight was a mistake, as I saw the words "stroke and aneurysm" in the same paragraph. With me now in tears, Joe insisted on bringing me to the hospital, which wasn't going to work because besides me and a couple of paid caretakers, Joe was the only other person with the know how to care for Dermot.

My mom reluctantly agreed to drive me, as she is not a fan of driving in general.
As we drove to the hospital, one thing stands out, her hand was warm. She wanted to hold my hand even though she was driving. First we drove to the Aitkin Hospital, 25 minutes away. She held my hand the whole time. I told her that I was scared; she told me I was going to be okay. I told her nothing could happen to me, I was responsible for too many people, and she said everything was going to be okay.

My mom and I talk often, mostly about our day to day activities and what her friend Shirley's daughter-in-law did to cure a case of the hiccups or how her friend Doris told everyone at her knitting club she hit a deer with her car. So, you could say we are close. But I've always had a sense of wanting for my mother. I've seemed to not quite get enough from her. This sense has haunted me since I was nine years old and she moved out and left my brother and me to live with my dad. We saw each other every Wednesday night and every other weekend, but I needed her more than that. I needed her more than she was able to give.

So growing up without a mother in the house is a task in itself. The powers that be saw to it that I experienced my first period on one of those fateful weekends I was with her. We shopped for my first training bras on a Wednesday night after dinner and before she returned me to her former home for the night. But I always wanted more from her. I hung out with my friend's and their mom's after school and longed for a sense of connection. Later I found it to be convenient that she wasn't in the house because it made it easier to forge her signature when I skipped school and need an excuse note for my homeroom teacher.

I was more comfortable hanging out with the guys. Most of my friends were dudes and I'd follow along with them at lunch, after work happy hours and driving them all home. I never knew what to talk about with the women. "Too fancy and dolled up for me," I'd say.

Now I've realized with a good amount of therapy and twenty+ years of time passing that a lot of my feelings of longing were a results of unmet and uncommunicated expectations and clearly not of my mom's doing. She was trying to forge out her own existence and identity. It's only after being a parent and a grown woman do I understand and have compassion for my mother and who she has become.

There are instances, when I get impatient with my mom. I wish she could figure out her iPhone settings herself, and I wish she knew how capable she was and didn't have to be afraid of trying new things. But, I'm grateful I have her in my life.

After an abbreviated visit to the small town hospital, my mom and I were instructed to drive immediately to Abbott Northwestern hospital. The ER would be ready to administer an MRI on my head and my neck. The small town doctor also reminded me not to eat or drink anything until after I had been seen in Minneapolis.

After two hours, full of conversation, me making frantic phone calls to my estranged family members, me seeking extra support from my friend with the power of google behind her, and several disagreements with Siri, we arrived at the hospital.

Weight, eyes, ears, hospital gown, blood pressure every fifteen minutes, neurological tests, several questions regarding my morning routine, an IV and a forty minute MRI later, we had results.

With mom and friend by my side, I wasn't going to have a stroke. I didn't have an aneurysm. I did however administer Atropine drops (for secretions) to Dermot in the middle of the night and somehow got some in my right eye causing my pupil to dilate.

So, here's what I learned from all of this.
I'm lucky. I have great family members and friends that ARE DOING THE BEST THEY CAN. They love me, and I love them.

I especially know that when my mom has told me over and over again that she'll help me whenever I need her to, I believe her now. And also, my mom has really soft hands.

Friday, August 21, 2015

58 lbs.

He weighs 58 pounds. I know you're asking because its quite shocking to watch me lift his large limp body out of his wheelchair. I know I'm small. But please don't ask me while I'm lifting him,

Dermot is heavy. We've got that covered. He's heavy for many reasons. His wheelchair alone weighs 87+ pounds, then factor in the TLSO brace, the fact that he can't assist me while I lift him and his 58 pounds, that equals heavy.

But for some reason when you ask me how much he weighs it makes me think you're going to talk about how you can't believe I can still lift him, or how you worry about when I won't be able to lift him anymore. "What will she do?" I imagine you saying to your confidant at the end of the night.

Is it pity? Beats me, but it feels like it.

How about "what can I do to help?" instead? Or perhaps taking action on your own. Yes he's heavy, but reminding me of it isn't helpful. It reminds me that it's hard.

I lift him every day, multiple times. I have taken steps to ensure I have a strong core. And when I say core, I mean it in a few ways.

Yoga, God, Friends. These things make my core stronger. I practice yoga to calm my mind and strengthen my muscles. I believe in God to strengthen my mind and calm my soul. I nurture my friendships to surround myself with people who support, understand and love me.

Dermot is heavy. I get that. I am strong. I get that.

Will you walk along the ramp with us instead of taking the stairs? Will you sit in the handicap seats with us, instead of in the bleachers? Will you push the wheelchair sometime to give me a break? Will you answer the stranger's kid asking the awkward question? Can you sit with Dermot and hold his hand sometimes so I can go play with my other boys? Can you do the hard stuff with me, instead of talking about it after I'm gone?

That's what I need. That's how you can help. Not for me to tell you how much he weighs and how many seizures he has every day. The answer to both questions equals a lot, and I'm afraid you'll use that information against me.

Tuesday, May 26, 2015

Alone at the party.

"Well that sucked" I said, after getting into the car after attending a graduation open house for a friend's son.

I only just realized how upset I was this morning, while I was pruning my crab-apple tree in the front yard while still in my pajamas.

So I'm trying to give people the benefit of the doubt, as I do in most cases, but c'mon.

We load up the family in the wheelchair van that is becoming increasingly irritating to me. Drive the two mile course to get to our friend's house, find a parking spot where we can unload appropriately. We've arrive. It's full, there's a food truck parked blocking the driveway (and any chance of an accessible entrance for Dermot's wheelchair), so we off-road it, as we so commonly do.

The guest of honor is on the driveway surrounded by his admirers, Parents not in site. We try to get Ryan to go and give him his card with a healthy sum of money in it, He's too shy. We find the basket to drop the cards after maneuvering thru the small well-dressed crowd on the rather slanted driveway. Joe decides we'll be more comfortable in the backyard, I agree, but getting back there is tough.

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

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

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

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

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

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

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

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

Saturday, February 21, 2015

He's a person.

"We want to be clear, this extended school year isn't a program to be used as respite for the parents." She stated on the phone this afternoon.

I was listening over the chaos of three dogs, and three boys who'd just recently returned home from school. I heard phrases like "maintain, not improve", "using resources more efficiently", "most kids are fine with this". All the while taking deep breaths, making sure to remind myself that she was not the enemy, she was not the decider, but still wondering, who is?

For the past seven years my son has qualified for ESY (Extended School Year) which means summer school. For the past three years he has been allotted 72 hours per summer in services. So it's only natural that I'd expect the same this year. Right?

I received the email from his teacher two days ago as a heads up, so I can schedule my summer activities. I glanced at the message, closed it on my phone and checked my instagram...wait, what?!

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

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

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

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

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

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

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

He's not a number.

He's a person.

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

He's a person.

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

He's a person.

I'm getting tired of reminding people of that.

Friday, December 26, 2014

So this is Christmas.

It's late on Christmas night. All are sleeping. I'm thinking of Christmases past.

Wrapping presents with my mom.
Coming home to my dad's after Christmas Eve at with my mom's family, my dad has midnight mass on the television, and my brother and I convince my dad to open presents before Christmas morning.
The cat playing inside the tree and having it come crashing down.
My brother and I finding the hiding spot in the front closet for all the presents.
Avoiding my drunk uncle on Christmas eve.
Faint memories of a Santa showing up for a visit at grandma's apartment.
My aunt's beautiful joy filled smile, hugging me and always calling me honey.
My cousins matching Christmas sweaters.
My brother sick on the couch on Christmas eve.
My dad's side of the family filling up the twenty foot table set up in the basement.
My uncle teasing my dad as he walks in the door.
My grandma taking the turkey out of the oven in the basement, because the oven upstairs is full.
The candy dish full of ribbon and pillow shaped candies.

My brother calling at the last minute to say he's in Vegas instead.
Road trip to Fond du Lac.
Watching Owen share stockings with the cousins.
Grandma's Christmas crowns and crackers.
The ice storm brings everyone to us.
The last Christmas with Grandma before Arizona.
Another Christmas without my brother.
Another Christmas without my dad.
Another Christmas without my mom.
Complaints about gifts.
No gifts.
No phone calls.
My family.
My in-laws.
My children.
My husband.
My new Christmas.

Each Christmas brings back old memories, old expectations, old disappointments, old joys.
Each Christmas brings new memories, new expectations, new disappointments, new joys.

My struggle is to put all of these together, make sense of them all. To be grateful for all of it. For the old to stay in the past, to realize that is where I came from. Not where I am today.

To make the new Christmas memories matter just as much as the past. Know that the people I celebrate with today are my family, to not feel apart from or different. To be myself and enjoy the here and now.

Here's to trying!

Merry Christmas.

Wednesday, November 5, 2014

Feel Better

"Don't try and fight it, it will only get worse" she said. "Just let it happen and you will feel better." 

Her advice was taken, and used at least seven times in the last ten days.

Anxiety attacks. At 43 years old I haven't experienced one, until 10 days ago. I lay down in my bed, my husband already asleep for over two hours was resting comfortably, until my head hit the pillow.

I started hyperventilating. I couldn't stop my breath or control its tempo. My husband woke and tried to wake me from my nightmare. "I'm awake" I wheezed from my rapid breathing. I stopped with a sudden sigh and three or four uncontrollable deep breaths, and then the tears started to flow. No sobbing, just tears racing down my temples and thru the crevices of my earlobes. I fell asleep surrounded by my husband, scared to death of what had just happened and hoping to God it wouldn't happen again.

It has happened again, six more times. 

Tonight in fact.

The cat peed on my couch (I've been neglecting her litter box)
The contractors left the house with a coat of dust on everything (second day of demo for the building of Dermot's new "care suite")
Half the lights in the main level aren't functioning (same contractors)
The wireless signal went down (same contractors)
Dermot was exhibiting strange behavior that may or may not have been a seizure so we gave him rectal Valium, just in case.
and the PTO event I've been working on is only 5 days away.

I excused myself, went and sat on my bed and did my hyperventilating, deep sighs and tears. Then I felt a bit more grounded. 

I apologized to my husband for acting like a freak show. I apologized to my six year old for sharing so many swear words that are not okay for him to hear or say. I thanked my ten year old for being such a big help to me and always supplying me with a hug.

Then, I returned to the status quo.

I keep waiting for things to get easier so I'll feel better. But things won’t get easier, just more difficult. 

The choices I'm forced to make are monumental. I can't breathe sometimes. So many decisions about Dermot and his quality of life. Our quality of life.

G-J Tube vs. G-tube
TLSO Brace vs. spinal fusion surgery
High-Flow Oxygen vs. blow by O2
Seizures vs. five seizure meds at once
And the dreaded DNR order (not in the immediate future) that the social worker keeps mentioning quietly...

So at this point, in all of this, it’s all about letting it happen. Because it will happen.

And I will feel better.

Saturday, September 20, 2014


I'm still waiting for the blender and the new running shoes to arrive that I ordered online last week.

Children's hospital had free wi-fi and I had an ipad while I spent three days with Dermot in the hospital last weekend. He slept, I shopped.

I found a fantastic deal on a new down coat in anticipation for this year's winter. Some new skinny cargo khakis and a v-neck merino wool sweater will also keep me fashionably warm this coming season. Plus the t-shirt on Etsy I ordered for a friend, (she's going to love it!) and the blender that has yet to arrive will make my morning smoothie ritual much easier.

And of course the running shoes, I checked, they'll be at my house by Wednesday. I'll need those the most. I've been relying on my daily runs as therapy (along with the online shopping) to get me through this illness that Dermot is suffering through. So far he's missed two weeks of school, probably will miss a few days next week and my routine has come to a halt. Or if it's been longer than two weeks, perhaps this IS my new routine?

Wake up in the morning, see Owen and Ryan off to school and drink my coffee and wait for Dermot to wake up. Make my green smoothie from kale, avocado and many other healthy ingredients, check on Dermot. Give him his morning meds while he is still sleeping. Finish my smoothie, drink my second cup of coffee, change out of my pajamas and into my running clothes. Tend to Dermot, who has just woken at ten a.m.. Let him cough out his 3/4 cup of morning mucus, change his diaper, put on clean loose fitting clothes and start the new daily routine of constant suctioning, nebulizing, using the respiratory vest, and changing his position every 30 minutes to ensure the mucus doesn't settle and his O2 level doesn't drop below 90. All this while watching for seizures...

Joe arrives home for lunch, I escape to my friend's house to collect her Vizsla for my therapy session, a 3-5 mile sprint around the neighborhood. Eminem and Busta Rhymes have kept my pace strong and angry, when I finish I'm calm and sweaty. Ready to return to my son, the machines and the new routine.

I've decided there isn't much value in planning his return to school. I learned long ago that expectations only cause trouble. "This too shall pass" is my motto. "Be Still" is my mantra.

The absurdity of this horrible illness is that we are getting used to it. We are beginning to think that an 88 O2 is pretty good. Only having to suction every 30 minutes is "better" than yesterday. This is how we roll. We have to, or we'll fall apart. I'll save that for later. Probably when I'm not expecting it at some wildly inappropriate time.

For now, I will try my best not to spend too much money while online shopping. I'll be out there running my troubles away with my new favorite running buddy.

Hoping my best for an end to this new routine. Hoping.

Monday, September 15, 2014

Thank you notes

Thank you for making cookies while I was at the hospital.
Thank you for rushing my other boys to your house so they didn't have to see the ambulance pick up their brother
Thank you for changing your plans to stay with us
Thank you for bringing me dinner at the hospital
Thank you for offering to bring me lunch in the hospital
Thank you for deciding that you should bring us dinner, and then doing it without asking if it was okay
Thank you for rushing into my home, picking out what I needed and then driving it to me at the ER
Thank you for telling me to always have a "go" bag ready for emergencies (next time)
Thank you for picking my boys up and reading them stories before bed
Thank you for flossing Ryan's teeth before bed
Thank you for telling me you loved me while I was crying on the phone
Thank you for buying me $50 worth of magazines to keep my mind occupied
Thank you for calling me and leaving a voice mail
Thank you for doing ALL the laundry before you left
Thank you for checking in with me everyday since, to see how we are
Thank you for letting me run with your dog
Thank you for buying dinner at Snuffy's while my husband took a shift in the hospital
Thank you for sending me pictures of my boys at the parade that I missed
Thank you for driving Owen home from baseball
Thank you for stopping me mid-run in the parking lot and giving me a hug
Thank you for explaining the intricacies of the pulmonary system
Thank you for shaking my hand each morning on rounds
Thank you for not waking me up in the middle of the night while you were checking his vitals
Thank you for offering to fly up from Texas to help our family get through this
Thank you for well wishes on Facebook
Thank you for for your prayers
Thank you for offering whatever we needed
Thank you for not pretending everything was okay
Thank you for laughing with me
Thank you for the hilarious texting banter while we were waiting in the ER
Thank you for reminding me how loved our family is
Thank you for going to Target to buy your 8 year old grandson more diapers
Thank you for the amazing chili and all fixings
Thank you for offering to take the boys with your boys
Thank you for bringing the boys to the corn maze ALL-DAY
Thank you for finding a replacement for my PTO post
Thank you for checking in with me after I abruptly left your house because of Dermot's seizures
Thank you for not fighting me when I requested a round of antibiotics
Thank you for picking up the phone on the first ring
Thank you for having Dermot's entire class sing a get well song, video taping it and then posting it on YouTube so Dermot could watch it while he was laying in bed
Thank you for being my village.

Each time we have a crisis I am reminded how loved we are. I am reminded that we are not alone in this journey with Dermot. We have family in town, even if they are not related. It's more than okay to ask for help. To be specific. Because in doing so, I am helping you be of service. Because then you can feel less powerless. You can step up and make a difference. However big or small your deed. You helped us. You will be called upon again as we go on this road with Dermot. You are valued, appreciated and loved by us. You share our pain, our heavy load, our joy, our uncertain future.

Thank you.

Monday, July 21, 2014


"Yes, honey.."
"Can we play that game where you let us say swear words and then don't get in trouble?" Ryan asked.
"Ok, one word a piece. Go!" I agreed.
"Bitches!" Ryan squealed.
"Shit!" Owen shouted.
"Oh Yeah, bitches!" I chimed in...

I know I'm not winning the mother of the year award, but after a weekend like mine, I needed a laugh. Have you ever heard a six-year old shout, "Bitches!"? It's hilarious.

This is day four of using Dermot's Diastat to stop his thirty minute-plus seizure episodes. Diastat is rectal valium. My husband and I have been alternating who has to shoot valium up Dermot's butt to make his seizures stop.

This is absurd. In his eight years of life (his eighth birthday is tomorrow) we have had to use this medication three times. Now this weekend, we've used it four times, been to the ER once and have been in constant contact with his neurologist (who's just as clueless as we are as to what is going on...)

Today we had a great session with Dermot's speech therapist and expelled tons of mucus after some draining techniques. Unfortunately, his breathing grew more shallow and his O2 levels dropped to between 87 and 92. I started his blow-by oxygen and called the pulmonologist. Antibiotics for the mucus and fingers crossed that the infection is somehow causing his excessive seizures.

I'm exhausted. I'm resigned. I'm numb.I'm tired of being a nurse without any formal training. So many of the decisions I'm forced to make are completely over my head, I make them and hope that I've done the right thing.

Do we take Dermot to the hospital or not? Do I call the doctor or not? Do I give him another shot of valium or not? Mother's instinct? Who knows. Blind luck? Probably.

This is the part where I start writing about how sad I am about all the things I can't do with my family because of Dermot's condition. Or perhaps how I've become a better person because of my experiences and that Dermot is a gift to our family. Really?

Maybe my other boys will gain a level of compassion from their brother that they wouldn't have otherwise.

Maybe I have more friends and lasting relationships that I ever did before.

Maybe there's some great value in this entire experience that has nothing to do with me.

But what I know tonight, is that this special needs motherhood thing is more difficult than anything I've ever imagined.

There's no possible way to predict what my life looks like in five or even ten years. I live day to day.
Will I be grieving the loss of my son? Will I be living with Dermot as a 100+ pound teenager armed with a deeper level of acceptance than I have now? Will I be in the nut house after suffering my third nervous breakdown?

Who knows.

I write so that you'll understand what all of this is like for the otherwise average family. What sacrifices we make everyday. The pain I feel at different degrees, depending on the health of my beloved Dermot. How badly I want to be like the average mom. The one who's oblivious to struggle, the one with three healthy kids who complains about being too busy driving them all around to their numerous activities.

I am not that average person, maybe I never was.

So, every once in a while, I let my boys swear because I think it's funny.

And funny is worth it.

Sunday, June 22, 2014

What matters.

So there's always that feeling. If we bring him we'll be excluded or he'll be ignored. If we leave him at home, we'll be more approachable. But then we have the guilt of leaving him behind.

We attended the annual neighborhood block party tonight. All of us. It takes a bit of gumption to roll up to the intersection that's been blocked off for the party. We go every year, this year wasn't the best.

I know in my head that I shouldn't let any of my self conscious feelings bother me, I shouldn't let the stares keep me from being myself at all times, but tonight we were tired. And so was the party.

Joe left early with Dermot, that made me sad. Nothing there for them. How to you shoot the shit with the neighborhood dudes while holding on to the handles of your son's wheelchair? How do you gather close together and listen to the neighborhood gossip with your mom friends while turning off Dermot's feeding pump?

Much of this is being imagined by us, but it feels real. If you don't know me, are you going to walk up and introduce yourself while I'm wiping drool off my son's chin?

If it were me, ten years ago, I wouldn't have gotten near me and Dermot now. Too different, too scary.

I give people the benefit of the doubt most times because I remember who I was a few years back before I entered the land of disabilities. But at some point I'm going to need to decide that what I think other people might think of Dermot and or my family just doesn't matter. What I think of my family is what matters.

I love my family.
I love that my boys hold Dermot hand while he's having a seizure.
I love that my kids point out Dermot's past classmate with Down syndrome and go talk to her.
I love that they dared me to go off the high dive at the pool and I did.
I love that my oldest wells up in tears when he talks about his brother.
I love that my youngest showed a friend how to turn off Dermot's feeding pump when it's beeping.
I love when Dermot's classmates come and say hi to him when we're out in public.
I love that we all hold hands when we say grace.
I love when we dance. All of us. Together.

That's what matters.