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.

Last night when I did my meditation, I couldn't quiet my mind. Vivid images of her taking me to Fairview Plaza to shop at the dime store clicked on. 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 only saw 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.

Drifting

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. 

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.

Making a Better Life

I am finally taking the leap from the waiver that we've been receiving services through for almost two years to the 'Consumer-Directed Care Plus' option. This will put me in charge of monthly budgeting, timesheets, hiring, training, and purchasing for Daniel. It means far more flexibility in terms of getting people on board to assist him. I'll no longer be required to use an agency or an APD employee. I can hire family, friends, or whoever else I choose.

Since I have no family in Florida, and no friends that can act as assistants for Daniel, I'll be hiring people I don't know. My add on Care.com is  entitled, "Energetic, Happy Caregiver Needed". I've had too many blah, tired, uninspired workers through the agency these past nine months since losing our first full-time care provider. We had one who was outstanding, but her last shift was Sunday. She's moving to Virginia and we'll miss her terribly. She was the epitome of happy energy. From the moment she walked through the door until she left each Sunday, she was tuned in and focused on Daniel. She truly loved spending time with him, and she was good for all of us.

My goal for 2013 is more activity and more fun for Daniel. In his nearly 14 years on earth, it has been mostly me, my parents and daughter who take him everywhere and include him as much as possible. For the past year this has dwindled. It just feels like too much work at times, and he doesn't act happy when we drag him to church or restaurants. Sometimes going out to eat is good for him, but usually it's not. This means that one of us stays behind with him at home while the others do their thing. We're not as fired up about day trips anymore, either. Burn out. It's in the house.

I want to enable him to do the things that HE enjoys on a more regular basis. He loves to be outside. Right now we are constrained because the agency workers are not allowed to take him anywhere by car. If we find the right people, trips to the park and the beach will be much more frequent.  We live in the sunshine state, and the big advantage to that is being able to give him the out of doors. It doesn't happen enough when you're tired from being the only one on board.

So. Big hopes for changes that will make life better. That's my Christmas/New Year's wish.

For Mom, With Love

We buried my mom on Saturday, two days after Thanksgiving, twenty-two days after she started seizing in the hospital following a very confusing illness.

Most of her close family were with her the day she died. My dad, my brothers and I, both daughters-in-law, half of her grandchildren, her sister and brother and their spouses. We all gathered at Barnes Hospital in St. Louis, where she’d been flown by helicopter a week and half earlier from a hospital in her hometown in Decatur, Illinois.

I arrived in Illinois the evening before the transfer. Her seizures were about twenty minutes apart. She was sedated, but I was angry that enough meds weren’t given to knock them out. She was on a vent, after all, so there was no danger of depressing her respirations. In St. Louis they did manage to stop them within hours of admission, but she never really woke up.

My mom was healthy. She went to Branson, Missouri in early October with my dad for a mini vacation. We thought the illness she experienced when they got back was due to the hamburger she ate on the way home. Both she and my dad didn’t feel well after eating that night, but she was very sick. Next, it appeared her gallbladder needed to come out, and it did. The surgeon was puzzled at her labs and her overall clinical picture.

Her kidneys failed, her platelets dropped. She underwent numerous plasma exchanges. She believed she was going to die, and made peace with God and talked things over with my dad. I thought she was overreacting and would get well in time. In the back of my mind, though, was the overwhelming feeling of just this thing happening that I had when I was visiting them in July.

I was lying in bed and started to cry. The thought of losing her was strong. Awhile later she came into the room and told me to get up because my dad was having chest pain. My first thought was that my intuition was confused and it was he that was in danger. Turns out he was fine, just having some heartburn.

My dad and I stayed near the hospital in St. Louis the entire time she was there at Barnes Lodge, a place for families. I’ll never forget the unity of purpose that we shared. I love my father so much. He is truly my hero, as corny as that sounds. He is full of optimism, love and grace. His love for my mom will be in my mind and heart forever.

This past week my family gathered together. I feel so lucky to be a part of them. My brothers and their wives, my nephews, and my aunts and uncles are all such great people. Truly. My mom must be thrilled to know that over 200 people came to her visitation, and her funeral was beautiful. My nephew gave a eulogy, and the minister read my tribute to her (I have a horrible fear of public speaking. I’d rather be in the casket than at the podium!)

Tim talked about golf and how she always worked on her short game, making the putts and getting her score right up there because of it. That’s how she supported us, too. She put in the time behind the scenes doing the small things that made a big difference. I know she was listening and probably beaming that her grandson gave her such kudos for being the quiet woman she was in this life. We’re who we are because of her.

It hasn’t really sunk in yet for me. I know that the days ahead will be tough for all of us, and I hate being down here in Florida while the family is 950 miles north of me. I hope my dad decides to spend some of the cold months here with us. It’s up to him and whatever he feels will be most helpful to his healing.

My mom and dad adore Daniel. I am so grateful that her example of caring for him has really affected Melody. She took care of her brother while I was gone (with the help of assistants and Rich). The Thursday before mom died Daniel fell while the caregiver had him in the bathroom. He lost his other permanent front tooth. I’m still unclear about how it happened, and I haven’t had time to look into the details other than to know the person responsible was apparently not strong enough for the job.

Melody took over and showered him with love, hovering over him until I flew back to Jacksonville. We all drove back to Illinois together, and she continued to care for him and for my dad. She made sure her grandma’s kitchen was as pristine as she always kept it. Again, I know my mom is proud. I am.

I feel my mom’s presence, and I am thankful that I have a completely secure belief that her soul is still with is. I don’t know how people get through it without that knowledge and faith.

Thank you, mom, for being you. I love you.



Christmas, 2011



Intuition

My son is non-verbal. I've been trying for years to find the right communication system for him, but to date the best indicator of  what he wants to say is his body language. He reaches, pushes things away, claps when the answer is yes, and gives  looks to kill when he's annoyed. He also uses his eyes.

Nearly every morning when I go into his room and wake him, he smiles. His big brown eyes light up, and I know he's happy.

Communicating with someone who cannot speak is one way to fine tune your intuition. Since Daniel can't say or type what he feels or needs, it is a necessity to read his eyes and body language. Sometimes it goes beyond just picking up on non-verbal cues and going with gut instinct.

I find that when I can really slow down and observe patiently, I get it more often than not. Sharing thoughts and emotions in the absence of spoken language is an art. There are cues I use when I need to figure out what Daniel wants me to know.

He covers his face with his hands when he's embarrassed. He has a low grade cry when he's bored or unhappy. His heartbeat speeds up if he is in pain or hungry. There's a very specific growl he uses when he's angry that we're not picking up on what he wants us to know.

Sometimes I tune in on another level. Once when he was staying with his father overnight (years ago, before those visits ended) I woke up dreaming that he was being injected with a needle. Minutes later I got a call saying he was having a seizure, and his father gave him IM valium.

I've been able on occasion to sit with him when he's sick and just quietly "listen" for signals from my own body to let me know where he hurts or what the trouble is. I once felt throat pain very briefly, and it turned out after a trip to the peds office that he had a virus that included a sore throat. This is a technique I want to develop. If I can get a sense of where the problem is, I can be of more help to him.

I haven't given up on communication goals. We're hoping for a new school placement that's going to support us more in helping him with the iPad and other techniques. That should happen soon if the district cooperates. In the meantime, I'm listening.

The Heart of it All

Last Thursday Daniel and I had dinner in one of the homes at our local L'Arche. It's a place where people with intellectual and physical disabilites live in community with the help of assistants. We shared vegetarian chili and cornbread with a group of about 12 in the Peace House. As a child of the sixties, everything about this scene appeals to me.

L'Arche is a revolutionary way of thinking and living. Jean Vanier started the movement in France when he opened his home to two men with disabilities in 1964. They were institutionalized at an early age, and when Vanier saw the conditions they were living in, he decided to do something. It's grown steadily over the years throughout Europe and North America. There are 17 L'Arche communites in the U.S. right now, with 3 more in the process of being up and running.

As a young man, Vanier did his doctoral thesis on Aristotle with a focus on happiness. His research boiled down to a very simple conclusion. The secret to happiness? Loving and being loved. That's the mindset that L'Arche grew from. From the International Charter:

"L'Arche exists to strengthen our local communities, welcome more people into our life and work, engage in advocacy on behalf of those often on the margins of society, and to raise awareness of the gifts of persons with intellectual disabilities."

"You may have a spiritual resonance with L'Arche's vision of mutuality and solidarity with persons who are marginalized, a desire to immerse youself in community, or a sense that there must be something more to life."

Peace House

Daniel

Welcome

One of the gardens

The backyard between houses

L'Arche is radical. It's radical in insisting that money, prestige, career, intelligence and all of the other things that we usually associate with success are not what make us happy. There's a different mindset in the L'Arche world. The prevailing philosophy doesn't glamourize disability, but accepts it as part of life, part of being human. Our IQ score isn't what counts. What brings us happiness is loving relationships.

It's been over a year since Daniel and I were there, and I was surprised that people remembered us. By name, no less! Sister Rita held his hand during songs and prayer at a service before dinner. She spoke to him, not about him. The same thing happened again and again. No pity, just welcoming and appreciation.

I came home from work very tired that Thursday, and I had to talk myself into going. I am not naturally social, and it took effort to go and not slip out before dinner. I kept up a steady internal pep talk that went, "Stop thinking about yourself. Relax into this. Just observe and be open." I'm glad that I did.

It's important for me to be close to people who view life this way. I need to cultivate friendships with those who believe that everyone has something to share and a purpose in being alive. I have a group of close female friends scattered across the country who choose to view their kid's disability as a part of life and not a tragedy. We started as a Yahoo group, and eventually moved to Facebook. We keep journals that circle the states so each of us can contribute. We've consciously decided to share a perspective that takes things in stride, including seizures and surgeries. We met online in the late nineties when our kids were babies. One of my closest friends in the group moved to my city in 2004.

We need people who nurture us on this path. I've written before in this blog about my deep desire to have a community where families can live in houses close to one another and share the life of raising children and caring for adult kids with disabilities. Since that's not possible right now, I need to approximate the emotional and physical support to the degree that I am able.

I love waking up to my son everyday. I don't ever want him to live elsewhere. I realize that I'm getting older, my back is getting weaker, and the natural order of things is for children to outlive their parents. If that day comes, I pray that the L'Arche model is more common. That it is the rule, not the exception.

For now I just need to do my part.