Tuesday, December 17, 2013

Pow! Right between the eyes ~ Joe Walsh

My mom always urged me to take care of myself. When one of your kids has multiple specialists they see more than yearly, it's easy to let your own stuff wait. She reminded me that having Daniel makes it even more important Not to let things slide. She was, of course, righter than right.

I started bleeding right after the beginning of the school year. I'm a nurse who works in an elementary school diabetes clinic, and I know "my" kids blood sugar rhythms almost better than my own. So, I did not have time for this. I did not want to call in a sub. I told myself it was probably a hemorrhoid. The script my doc gave me for a colonoscopy had already expired, so I called for another, and figured I'd get it done over one of our breaks.

In late October I panicked. I freaked out a little, and the initial meeting with a GI specialist was scheduled, which resulted in a colonoscopy booked for November.

It's cancer.

I'm home now after major surgery last Thursday. There were some snafus, and I had to be operated on twice. Once on November 25, then again December 12. We're just waiting for the pathology reports now, but there is about a foot of my intestines gone.

I've never been prouder of my oldest girl. She is mini-me, only at least 1,000 x smarter. She, along with our caregiver, have taken care of Daniel so that Rich can focus mostly on me. God, I love that kid. Without her, I'd be pretty screwed right now.

And now, more than ever, my thoughts of a community are strong. We cannot do this alone. I've been taught that in a big way.

I have much more to say, but I'm groggy from medication. But damn, mom, I apologize for not listening to you. I will try to do better. No more putting things off or diagnosing myself. That's just really, really dumb.

Thanks for reading, whoever is out there.

Tuesday, October 22, 2013

Living Together

I've blogged about this a few times before, and it's still a burning desire. I want a commune!

There are a few lovely options for people with intellectual disabilities who are ready to move out and on with life. Noah's Ark in central Florida is one. They have an entire village that they compare to Mayberry of Andy Griffith fame. There are also the L'Arche communities sprinkled across the U.S. and world. There's Camphill, a living arrangement inspired by Waldorf Education and Rufolf Steiner. All of these are either for adults leaving home, or children living away from their parents.

My vision is a little different. I'd like to create a place where a few families can live out their days together with support, love and joy. I see my son at the center of it all, with perhaps one or two other families who have a child with disabilities also as a focal point. The remaining community would consist of people who choose to live a communal life. We would have similar values and a common purpose.

I've started researching the possibilities. I found people in my state who explored the option of creating a Camphill School in Florida, and learned of the specific roadblocks to founding new forms of living that are considered "separate". Be assured that there is a lot of bureaucratic rules that make it anything but simple if you want help from the state waiver.

If we're not building an assisted living arrangement, then we must still fall under the home and community umbrella of services. If two or three families choose to live together and invite others to share life with them, some of the red tape might be eliminated. I am still investigating and determining what the rules and regulations are.

The next step would be finding each other. I need people who are ready to live a life of unity where more than just one mother and dad are in charge. My happiest days of my life were spent when my parents and even my former husband's parents were involved in our daily lives (the latter had some inherent problems to deal with, but that's life). My mom is gone now. My dad is nearing 80, and he's moved on with his life. My father-in-law died a few months after my mother did, and the rest of the family is 990 miles away.

I don't want to just live next door or around the corner, I want to be committed and connected at a deep level and on the same plot of land. Houses could be separate, or perhaps one huge ranch. I'm giving this a lot of mental energy and prayer.

Sometimes I feel like it's just a dream. I'll flash on the fear that I'm envisioning a Utopia that cannot be. Most of the time, though, I'm serious about finding a way to make this happen. I want to take the best that L'Arche, Camphill and Noah's Ark have to offer and build a little community of my own. For Daniel. For myself. For anyone else who feels this burning in their heart to belong and to be supported.

Stay tuned.

Thursday, September 26, 2013


Daniel fell at school yesterday. He's fallen and been injured twice before. Once with his father while at the mall. That was a bad one with chipped, damaged and lost teeth. The incident was a culmination of some poor planning and unfortunate timing. One moment they were having fun, and the next he was flat on his face.

The second time was last year when my mom was dying and I was at her bedside in St. Louis. We're not even sure what the hell happened during that one, but apparently his caregiver dropped him in the bathroom and he lost his other (repaired after the first fall) front tooth. That event really made me angry. Partially because it was totally preventable according to the reports I later got, and mostly because I was 950 miles away and unable to do a damn thing about it. In one room my mom was on life support, and in another two plane rides away my boy was bleeding.

I remember getting the news while I was drinking coffee in the neuro ICU waiting room. I left, got on an elevator and railed at no one in particular. I cried and howled and when the elevator doors opened and a woman entered she asked me if I wanted her to call someone. If there was someone to call, I might have taken her up on it. In that moment I was exorcising my pain and helplessness, and there's no 911 for that.

Yesterday he was in the bathroom, standing as he always does, holding his teacher's hand to walk to his wheelchair. It happened fast. He slid. His back  hit the plastic on the toilet and down he went. There are several large scrapes across his spine.

His teacher called me and told me about the sequence of events and expressed how sorry she is. She's a great lady. Taught for several years and knows her kids and her job. She told me she cried when he fell, and he put his hand on her head to comfort her. It was an accident. It was a fluke.I reassured her that this stuff happens. I should know, I work in an elementary school clinic for a living. I'm the one with the ice and bandages. I understand that kids fall on playgrounds, they run and bump their heads on things because they're not looking, and it is a natural part of childhood to get cut and bruised.

Yes, I know that accidents happen. This one, once again, just reminds me of how vulnerable my son is because of his disability. I can be grateful that he wasn't part of a high school fight or car wreck after boozing, but I'm also sad that at almost 15 he is injured doing what most of us take for granted. Going to the toilet.

The real focus shouldn't be on me and my emotions. I accept that Daniel's limitations make this a real part of his/our lives. I got on with things and brainstormed about how to prevent it from happening again. His teacher and I discussed it. Should two people be in the bathroom with him? No, it's too small and he doesn't usually need that level of assistance. Should she stand in front of him instead of at his side? Maybe. We'll figure it out when he goes back to school tomorrow. Her genuine sorrow at his pain was reassuring to me. She wasn't being careless, and she cared in the aftermath very much.

Our kids who can't speak or walk without help are the most vulnerable on the planet. Last night I asked Daniel what happened, and how he felt. He tried answering. He was shaking his head no at some of my questions, but sometimes the no shake means yes. I brought out the big, lit YES NO buttons, and he threw them. I wanted so badly at that moment to be able to either read his mind, or  help him with facilitated communication on a keyboard. I could do neither. I think that all of my interrogating frustrated him and if he could have he'd have told me to leave him the hell alone. Well, I really shouldn't put words in his mouth, but the tossing of the YES NO buttons seemed a real attempt at that.

Daniel lives with his vulnerability. He seems to trust the world. He laughed and touched her face when his teacher cried. He smiled at me when I learned of his injury and came to him with a panicked expression and tone. He threw those buttons like a major league pitcher. Does he know some secret to the universe? Or does he just know how not to make a mountain out of a molehill?

I don't have the answers. I can only pray that in his vulnerability he is protected by people who care. I can ask that light and love surround him wherever he goes, and that the inept are kept far, far away from him. And I do.

Friday, August 30, 2013

A Life with Purpose

I did a bit of writing this summer, and the Association for Research and Enlightenment published the piece I wrote on Daniel's birth.

Here it is:

Wednesday, August 14, 2013


I'm in the year of firsts since my mom died. November 18 will mark the end of them, but right now I'm only three quarters of the way through. My emotions are up and down, but I'm mostly fine.That's what my mom would want.

Daniel is starting high school, and Melody will be a senior with dual enrollment college classes as part of her schedule. This is the first year that grandma isn't either shopping for new clothes with us or discussing sizes over the phone with me. I talk to her about these changes. Daniel has a mustache, and my first-born is applying to colleges and writing scholarship essays. Seems so recently yet so long ago that we drove out of our way for organic baby food for her, and deals on Pediasure for him.

Last night I sat on the porch feeling like I hadn't really done much this summer. So, I wrote down in my journal everything that we managed to cross off the list, and it was pretty long. My summer photo album is filled with photos in various doctor's offices. Melody had her wisdom teeth removed, Daniel had multiple x-rays and specialist follow-ups. I had my yearly exams (oh joy) and labs done, too. In case it sounds like everything we did revolved around medical maintenance, I have to add that we swam a lot and Rich and I had two nights alone beachfront at a place only an hour from home.

Since we didn't make our usual drive to Illinois to be with my parents and family, summer did feel a little small at times. I did venture out of my usual routines a little, though.  I started attending the Unity Church that's only five minutes from our home. That first morning I almost didn't go in. It's in a pretty non-descript strip mall, and while I sat in the parking lot I imagined all sorts of negative things about the interior. On the phone, my daughter told me to just go in. I did.

One side of the room is filled with candles. There are sofas and chairs when you enter. The guitarist writes her own music, and it's beautiful. I needed to be back home in a church where meditation is a huge part of the experience. Unity fits the bill, and I'm very glad I opened that door.

I  met a family after the service who moved here a few weeks earlier. Their daughter Angela has Down Syndrome. As we talked, I found out that Angela and Daniel are newly enrolled at the same school. During the summer school session I saw her each morning when I dropped him off. Last Sunday her parents mentioned that they have no family here, no waiver services, and no one to they can trust to spend time with her while they catch a movie or get out alone for awhile. I extended an open invitation to come to our house, and gave them my Facebook info. We're hooked up now.

I know that one thing my mom wanted for me was the support of good friends. She understood my hermit ways, and knew (knows) how it doesn't come easily for me to reach out. I feel her nudging me and helping me with this aspect of my life. I know she's still my co-pilot when I need her. I don't want to hold her back from her journey with the grief I feel here on earth, but this is, after all, the first year.

Summer is over. I'll be going back to my job as a school diabetes nurse tomorrow. The kids will enter new phases in their lives. And just before Thanksgiving 2013, we'll mark one year since we said goodbye to my mother. I can feel the changes, and it's ok. Sad sometimes, but really ok.

Tuesday, June 25, 2013

Grief and Gratitude

It's summer. I'm thankful for the job the school district offered me three years ago that allows me to spend it at home with my kids. I'm a ten month employee, so we have to watch our pennies, but it's working.

My oldest is volunteering at a Waldorf camp for preschoolers. We were part of the original school initiative from the time she was a few  months old until I was pregnant with Daniel. There's another volunteer just a year younger than her who was a member of the playgroup we attended all those years ago. I have pictures of the two of them at a birthday party sixteen years ago. We lost touch with the group shortly afterwards, so reconnecting is a pleasant surprise.

A Waldorf school is a magical place, with lots of color and craft and an emphasis on imaginative play. The lead teacher at the camp also happens to be a former special education teacher. My daughter has found her mentor, and I couldn't be happier. She's experiencing a different way of educating first-hand. There's no yelling, no time-outs, no harshness at all. Discipline is gentle, the rhythm is calm. There's a centered happiness about the days.

This is our first summer without my mom. Usually we drive to Illinois to spend time with the whole family at some point. Next month Daniel begins summer school, and he just started physical and occupational therapy with two therapists who make the "work" fun. At home we're spending a lot of time in the pool with the new neck ring that gives him complete freedom to move.

I'm not sure if we're up to making the drive north just yet. If August comes and it seems like the right thing to do, we'll pack up and go. For now, I need time to grieve and adjust. Last August I wrote on this blog that I was glad that the difficult days of my husband Rich's illness were over, and that I felt optimistic and happy. Two months later my mom was fighting for her life. I wrote about how quickly things can change. Little did I know.

When my mom died last November I lost my best friend. I'm struggling. It's hard for me to reach out, but I've been doing it. In some cases I've been pleasantly surprised and heartened. In others, not so much. I'm trying, though. I know that I need to build that support system I've talked about for so long.

I'm grateful that my daughter is fully immersed in her job this summer with the little ones. The time spent singing, painting and swimming in the ocean is healing. I'm also thankful for Daniel's new therapists who are just a two minute drive from our home, and for swim rings and pools he can be free in. I am grateful for good friends who get me, and for family that love me.

As a fellow nurse I worked with several years ago liked to say with enthusiasm as we made our way out onto the unit to start our day, "onward and upward!" That's the direction I'm headed.

Wednesday, May 29, 2013


The following was written by  fellow-blogger, Claire, at  Life With a Severely Disabled Child
I believe it captures the truth of this life quite well. It's one of those that hangs on my refrigerator as a reminder.

In this moment I accept that I have been given care of a very fragile person.
I accept that I may likely never know why this task has been passed to me.
In this moment, I accept that I need not know more than the fact that what I do has value.

With that, I will care for this person to the best of my abilities.
I will forgive myself for the days I could do better, but don't.
I will forgive myself for the days I would do better, but cannot.

I seek to have clarity of thought that I might make choices most in balance with the many intertwining lives, including my own.
I seek to be supported in whatever ways financial and emotional that will maintain this balance.
I seek to learn how to draw from a well of infinite patience and energy.

I open myself up to the possibility of joy, of fulfillment, and of grace.
I accept that, in this moment, it is all I can do.

~Claire Roy

Sunday, May 26, 2013

Good Things

We kicked off Memorial Day weekend by giving Daniel's new neck ring a try. We have a winner! He was able to move around the pool independently, something he loves. After about an hour and a half he crashed on the porch for a long nap stretched out on a comfy chair. It was good.

I've tried something new for the pool every year for the past several, and this ring was recommended by a good friend who uses it with both her girls who have severe disabilites. To say it's a godsend is really an understatement. The feeling of freedom he has in the water is worth every penny I paid for it, and it was a lot less expensive than the big yellow contraption I bought last year that didn't pan out well.

With his sister trying the new neck ring for the first time

In other news, we have a new physical therapist and a state-of-the-art hydaulic stander on the way. This is a pic of he and I after school/work Friday evening trying it out. This doesn't capture the huge smile that he had when he first stood in it, but believe me, the boy loves it.

Physical Therapy on a Friday in May

We're counting down the days until break (June 7 is our last day) and taking note of all these blessings, too. Here's to summer!

Friday, May 3, 2013

Sorrow Makes Us All Children Again ~ Ralph Waldo Emerson

I guess that's why when I think of my mom, I don't remember recent events as much as things from grade school. Yesterday on the drive home from work,  a memory of myself at age ten appeared in my head as clear as a videotape. 1972, the long "maxi" dress she'd bought me that made me so happy. Fleeting, happy images.

Last night when I did my meditation, I couldn't quiet my mind. Vivid scenes of her taking me to Fairview Plaza to shop at the dime store clicked on instead. We've made that trip hundreds of times. I kissed her wedding rings that I'm wearing, and blessed her and myself. Then I cried, and tried again to still my inner chatter. Success denied. I could only see her cooking dinner while I watched Mary Tyler Moore reruns in the living room.

If mourning means I'm a little girl for awhile, I will just have to roll with it. For most of the day I'm Nurse Carolyn, taking care of the kids with diabetes at the elementary school where I work. When I walk down the halls, though, I want to call home and ask mom to pick me up because I'm sick.

Thursday, April 25, 2013


Lately my mind drifts to the seventies quite often. Grade school. Book bags. My mom at home. When I think of her, the memories of those days are strong.

I'm a child. I am happy in my introverted way. I read, sit under a desk and hum or write poems and songs in my head. Out in the world, I am sometimes overwhelmed with self-consciousness.

But at home I am calm. I love the rhythm of life in our little house. Sharing a room with two brothers. One bathroom for five of us. Fried chicken and mashed potatoes are on the table at least once a week. Television and music are our usual pastimes.

There is church. Northwest Christian. My best friend, Joyce, a sweet soul to this day. Camp at Little Galilee Christian Assembly in Clinton, Illinois in the summer. Kumbaya by the campfire.

There is also metaphysics. Many Mansions by Gina Cerminella. There is a River, the story of Edgar Cayce. I read them both in fourth grade.

I lie in the grass in the summer and look at clouds. I swim in a backyard pool with my good friend, Judy. We eat fresh blackberries from a bush near Garman Park on our way to lazy afternoons doing crafts at the big cement tables.

I'm drifting. My mind, my heart and my spirit. 

Friday, April 5, 2013

Thoughts on grieving

It's the little things you miss the most.

My mom always made sure Daniel had a blanket over his legs if it were cold out during a walk. At night, tucked into bed, she would check him multiple times to be sure he was covered, head comfortably placed on his pillow.

When we went out for dinner together, it was my mom who never forgot to bring extra of everything for him. Bandanas, toys, cups, water, clothing or a jacket. When it was time to line up at the buffet for food, she stayed behind with him allowing the rest of us to fill our plates first.

During visits to my parent's home in Illinois, when the rest of the family would gather for a barbeque or celebration, she was the first to volunteer to hold him or walk with him when he would fuss. She did this for thirteen and a half years.

We lived together from 2000 to 2002 when he was between the ages of one and three. After dinner, she refused my help with the dishes saying, "you just take care of Daniel." I worked a part-time job during those years, and she was my constant back-up with both of my kids.

Every new school year she shopped with me during my summer visit and bought clothes for the kids. Throughout the year, she sent boxes of clothes and toys for Daniel. She knew what he liked the most, and was always on the look-out for a squishy toy or a little car.

When I think about it, those little things are really the big things.