A UAA education class, called Family and Community Partnerships, read my blog as homework and wrote me questions.
Here are a few of my answers:
Do you ever think Elias will be able to leave your home, or do you think he will have to live with you the rest of your life?
Nothing like starting off with a challenging question. And a good one. I don't know... and not knowing puts me in a different realm from most parents who just expect their children to leave the nest.
(Often clinging to their soft fuzziness with each emerging feather.)
I imagine Elias will always need assistance, even as he develops more independence. But will he always live with family? A group home? A roommate? I don't know. I imagine an assisted living arrangement of some kind that combines dignity and freedom with support. But I can't yet picture Elias at eighteen, or twenty-five, or thirty, to know the right answer for my boy.
Here's the thing, I still often fear he won't wake up tomorrow, so I don't spend a whole lot of time worrying about 7 years from now.
When you get time off because Elias is somewhere else, do you prefer to spend that time alone or with your other family?
My first choice is always with Nick. Time alone with my husband, hiking, biking, skiing, dancing to live music, working on projects at the house, leaning against our kitchen counters with a glass of wine sharing details of our days, getting under the sheets at the exact same time...
I also enjoy social outings with friends and family without the constant worry that comes with going anywhere public with Elias. Its easy with Olive as she joins the gang of kids and we are free to socialize. Not so with our boy. I use to worry more about how other people received him, now I fear how he will react to other stimuli. So on those nights he's with grandparents or Ms. Julia, I often seek community.
And finally, I love time alone playing outdoors or hunting in thrift stores, tending my many gardens or sitting at my kitchen table where I write.
If I could ask Christy a question, I would ask her to compare the challenges and triumphs between raising Elias and her other child that doesn’t have a disability. I know she loves her children equally, however it would be interesting to know if she broke down in tears when her other child walked for the first time the same way Elias did.
Not knowing if Elias would ever walk, permanently etched his first footsteps into the inner heart of my memory. I will never forget that moment. Yes, I cried, and I laughed, and I can count on one hand the number of times I ever felt so elated.
Olive placed one foot in front of the other, so naturally, as if it were written before her, back when we still clocked her life in months. We celebrated, but not in the same way.
Olive's early development seemed to flow, without time to chronicle each milestone; whereas Elias took years to crawl, to inch his way over developmental boulders.
You are right, I love my children equally, fiercely, and in very different ways.
What helps you cope with things?
Writing, love, sports, beer, flowers, snow, wine, sunsets, laughter, chocolate, writing, love, sports, beer...
I appreciate your child has an impressionable smile. When was the first time your child smiled?
The first glimpse of a smile I remember is soon after he woke up from anesthesia, after brain surgery, as Nick and I leaned over his bed. I don't have a picture from that moment but here are a few early smiles:
(Taken in the NICU in April)
(After two months home in July)
(By November of his first year.)
Thank you for the thoughtful questions. Thank you, Alison, for inviting me to your classroom, for including my writing in your curriculum, and for caring, as you do, about us all.