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

Disbelief.

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

Fra-gee-lay

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.

Horrifying.

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.

Fragilty

"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....."
Super.
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.