Friday, January 15, 2016

Monday, January 11, 2016

Quotations for Health and Sanity: John Green on Success

Quotations for Health and Sanity

John Green on Success

"The greatest risk we face is abandoning our success because we wrongly think of it as failure."

Friday, January 8, 2016

Wednesday, January 6, 2016

In Bed

What do you do when Mom is in bed?

Bring her some lunch and a movie.

Teach her about space.
Make crafts.

Have reading parties.

Basically, you make Mom's bed the center of the family life.

Over the past few months, we've folded a lot of laundry on the bed. We've done pages and pages of homework. We've read at least a dozen books. We've opened birthday presents on the bed. We've watched birds play in the snow on the other side of the bedroom window. We've done Duchenne stretches. We've played board games: Chutes and Ladders and Settlers of Catan (I prefer the Junior version). We've listened to music. We've watched funny and informative internet videos. We've skyped with Grandma and Grandpa and Aunt Susie a lot. We've even entertained friends who've come for a visit.

We've had some good conversations and we've shown each other a lot of kindness and patience and unconditional acceptance. All in all, not such a bad way to spend some time.

Weirdly, all this time in bed has led me to feel grateful for our family's experience with Duchenne. Duchenne, of course, robs the person who has it of both energy and mobility. Having Duchenne means having to rely on other people to help you do things. These are not realities that come easy to most people in our society, and I am no exception. I could be spending a lot of time feeling guilty for receiving so much more than I can give right now. But somehow, I feel like Duchenne has offered me the grace of allowing this time in bed to be another lesson in parenting and in empathy. When Rain finds it hard to move someday, I will have more patience and sympathy for him because I know a little bit more about what it's like. Hopefully also, this time I'm taking now allows him to feel less alone with his eroding mobility. Maybe remembering this period of my life will make it easier for him to tell me about the hard things that his life will present to him. He knows now that I can sit still and listen. He knows that I can relate.

But here is what I value most: now Rain knows a bit more about being a caregiver. He has helped me over and over again, and I can see the pride and independence that experience has brought to him. Rain now sees himself as a person who can help others.

No one would choose to be sick. Rain and I would both rather be strong. We would rather be out playing in the snow instead of watching it through the window. But there are advantages to enforced stillness. There's actually quite a lot that a person can learn and live and do from in bed.

Monday, January 4, 2016

Hazel's Eye Surgery (#3)

Hazel was born with her eyes crossed. Something about the muscles just didn't work quite right. I may have mentioned this before. Oh, more than once. In fact, I may have once made a little chart comparing Hazel and Rain's history of surgeries and devices. Well. We can update that chart again. You may remember that Rain had to have a second surgery to remove his adenoids. Now Hazel has had a third surgery to set her eyes straight. Let's hope she never needs to go through it again.



Friday, January 1, 2016