Wednesday, April 16, 2014


The kids decided to try an April Fool's prank on the Tooth Fairy.

This note and piece of dried corn were to be found under each pillow.

The Tooth Fairy countered with a sprinkling of fairy dust and these notes.

Monday, April 14, 2014

Quotations for Health and Sanity: "Smile"

Quotations for Health and Sanity

"Smile," featuring Phyllis Diller and Pink Martini

Click here to listen.


Last week Scott broke his jaw. He was playing soccer, collided with a teammate, and his bone was snapped in half. I don't have any art for you. I have no further explanation. Suffice it to say that after much longer than it should have taken, we went with our second-opinion doctor, who did a great job of immobilizing Scott's mandible. So now I am living with a grumpy, drugged, pain-addled, hungry, and bored man whose teeth have been wired together for the next few weeks. We have a lot of soups on the menu. A full recovery is expected, but not before the summer.

Friday, April 4, 2014

The Good Life ... with Duchenne: Ongoing Traumatic Stress

Ongoing Traumatic Stress

I was talking with one of our doctors recently about the recurrent nature of some of my more irrational thoughts about my son's health and safety in the light of Duchenne. The doctor, half-jokingly, remarked that so many of the parents of his patients in the neuromuscular clinic seem to have some kind of PTSD (Post Traumatic Stress Disorder) from the diagnosis of their child. I replied, no, we don't have post traumatic stress, our traumatic stresses are definitely ongoing. Parents, siblings, and loved ones of people with fatal, degenerative disorders live every day with the knowledge that our family members are falling apart before our very eyes and there is not much that we can really do about it. We have Periodic Recurrent Traumatic Stress and Re-Stress Disorders. We have Continuous Traumatic Stressing. 

It is only when our beloveds finally succumb to the ravages of their disorder, only when our dear ones are dead and buried that we see an end to the ongoing traumatic stressing that is the scaffolding of our daily lives; only then can we begin to enter into a phase prefaced by the word "post." But when that day comes, we will not call it PTSD. We will call it grief. A shorter and much more brutal sounding entity. Grief implies finality, closure, something our mothers told us we would come to in the end. Only it won't be the end either.

Knowing that our sons' life expectancies are less than a third of our own; that's traumatic. Watching them lose the war against gravity, battle by battle over the years; those milestones are each traumatic, with a cumulative dose of trauma in equal measure to the growing duties of caregiving. Each IEP meeting, each wheelchair, each use of that darn parking spot; they traumatize a family again. We were supposed to be watching our children grow.

I used to have a hard time leaving Rain to sleep by himself in the evenings. I used to sit with him, listening to him struggling to breathe and I used to wonder if he would be alive when I came back to check on him. I used to wonder if I would wake up bereft. I used to check on him several times each hour, grateful, thrilled, and pained at each horrible, snuffling snore and catch in his throat. Anticipating pain is no antidote to it. I almost decided not to marry my husband because I felt I loved him too much. I was terribly afraid of the grief that I can still feel coming, overwhelming even in its nascent looming, possibly not even to occur. He's older than me, you know. Death will come for us all.

This is why I always come back to the metaphor of Tolkien's elves. They know that they are losing the world and all that is dear and wonderful and beloved in it. They are "fighting the long defeat," fully aware that they can neither conquer the forces of decay nor surrender before they have exhausted every possible fiber of themselves in the trying. It is poignant and painful. It is a bitter, brutal struggle with much suffering and regret. And yet, there is surely some taste of sweetness in the bitter.

It is sweet to love and it is sweet to love our boys. How dear is it to be needed by children whose ages would rightly put them beyond the need for dependence, which was once the basis of our relationship to them as parents? And it is sweet to see them win small victories of competence after efforts that would daunt their careless, able-bodied peers. I'm thinking of how Rain always used to wake up smiling, oblivious to my long nights of worry about his sleep troubles. I'm thinking of his giggling little voice telling me how fast his wheelchair makes him feel. I'm thinking of the day when his teaching team helped him get up the rockclimbing wall at school just like all the other little kindergarteners.

It may be that joy is the opposite of trauma, just as sudden, just as recurrent. There is no way of preventing the bitterness of life to seep, like ink, into each layer of our lives. Yet, open the pages, and there is written joy right alongside, throughout the whole book. 

Tuesday, April 1, 2014

We Love the Library

Rain is now an official reader. Unlike his sister, Rain has not shown any problems with language or reading. Rather, Rain seems to be a naturally gifted reader. He is very proud of himself, as are we all. He's ready for his very own library card. Check it out, baby, check it out!

Monday, March 31, 2014

Friday, March 28, 2014

Friday Photo

Friday Photo

A single photo, every Friday. No words required.