Day by Day

It's  an early morning in June and I'm sitting in the dining room with Daniel. He's drinking water (he loves to drink, just hates eating) and playing with some large toy trucks on the table. I look out my window to the right at my flower garden. The plumbago are blooming blue and spreading, the orange and pink lantana are reaching tall. I feel content.

Now that the school year is over I can relax a little. This past year was full of unexpecteds, including my cancer diagnosis. If I'd have known what was ahead last August as I prepared myself for a fresh semester, I don't know if I'd have made it through the first day. Thankfully, I was blissfully ignorant of what would unfold. I don't think we're meant to know the future in that way. We are able to carry our load each day, not cram our backpack for all future hikes ahead of time. If I'd had to plan far in advance for two surgeries, two recoveries, and extended time unable to lift Daniel, I would have had bigger problems than just beating cancer. Anxiety would have kicked my butt. So here I am, past all of that.

Daniel is in the summer of his fifteenth year. I am amazed that he and I have managed so well for so long. Many years without any help at all. Several with me a single mom. I'm 52 and a little tired, but grateful that some help finally came in the way of personal care assistants a few years ago. We interview two new ones tomorrow.

My last post was in February, and it was prompted by the dream I had of YEARNING. I'm not entirely clear on what the dream reflected to me. I have some ideas, but there are probably multiple meanings that are correct. I do know that I am in a time of transition, and some of it is painful.

My oldest graduated one week ago. Daniel stayed with friends, because he doesn't handle lengthy periods of sitting quietly very well. Truth be told, sometimes he can't stand even ten minutes of restaurant time. Church is unbearable for him, but he loves the teacher in the Sunday school at our Unity services. She's a Reiki healer, and her presence calms him. I've finally learned to stop trying to force what isn't going to work, and relax into what does.

At the same time, my mind has been visiting  places I try to avoid. What if Daniel were a typical 15 year old? He'd have been there with us at the arena for graduation, posing in all of the family pictures afterwards. He'd have ordered something teenage boys like at the restaurant celebration, instead of drinking his meals and needing breaks by strolling outside while everyone else partied. Today we're home because of bad weather, and we've both battled boredom. Without his disability he'd be with friends, or watching something stupid on tv, or just reading and hanging out. Maybe he'd go the ten miles from our house to the beach to surf. Or maybe all of that is just a fantasty, and he'd really be in a drug rehab somewhere. See why I avoid these areas? The voice in my head has never been a reliable tour guide.

I wrote the first half of this yesterday, and now 24 hours later I'm in this chair looking at my garden again. Daniel is in the living room with the same toy trucks and a glass of Pediasure. We're waiting for a potential caregiver to come and interview. She's 30 minutes late. I feel calmer today. I hope Dan does too. He seems to. There's no groaning from that side of the room, and he's making his humming sounds that mean he's content.

In this life I've learned that I have to be able to change plans without too much annoyance. It only makes me surly. So, still no caregiver here. No returned texts. I've moved on to the next on my list. I think we'll make it to the pool later on after all. It's a beautiful day. No mournful yearning here at this moment. No backpacks full of tomorrow's gear.

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:

A Mother's Prayer

Prayer

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

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.



What I pray for

Would I change him? I would and do provide him with the things that help him in this life, such as the medications that manage his seizures. I don't want him to suffer, but I have very limited control over that for anyone. I can only do what I can do.

I try new techniques to help him express himself and communicate. I advocate for services and connect with people who have something to teach and share that might help me be the parent he needs me to be.

I may be wrong, I have been often, but my philosophy is that he came into the earth with a mission. I was raised by parents who embraced the Edgar Cayce readings, and so my mind is of the persuasion that every soul is eternal and here with a purpose.

So, no, I'd have to say that changing Daniel is not something I fantasize about or wish for. My prayer for him is that he be surrounded by and experience happiness and love, contentment and joy. This morning we both seemed to be hitting the mark.

What I wouldn't give...

This video is pretty amazing.

Daniel's on the couch with his iPad keyboard right now!