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.

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