Sunday, February 17, 2013


"Happiness makes up in height for what it lacks in length."
Robert Frost

That was the quote on the spine of the Real Simple magazine when I glanced down at the stack next to the rows and rows of nail polish. I kept looking at it while I was receiving my hand massage by the Asian man assigned to paint my finger nails.

Indeed the quote was true and very fitting for today. I've been sad the last few weeks, and I've let you know about it. But there's happiness involved here too. On Wednesday the doctor told us that whatever type of therapy we're doing seems to be working with Dermot and he won't need Botox injections in his legs. Hooray! Progress for sure. Then there was a great evening out with dear friends that same evening, lots of sharing and lots of laughs.

And today, a friend ask if I'd like to join her to get our nails done. I would, I did.

Sometimes the bad stuff outweighs the good in quantity, sometimes it transforms me into a sad but comfortable recluse. But the email from a old friend, a kind comment from a new one and an invitation out pops me back into the world. The world where happiness is measured in height and there are no expectations of length.

Friends matter. Thanks Rebecca.

Saturday, February 16, 2013


"That's how our life is, so we should probably start living it that way!" I replied defiantly to my husband. I was the driving the familiar route to the Y to swim with the whole family.

I had suggested that he take the two typical kids on a spring break trip and he balked at the idea that we wouldn't go as a whole family. How? I can't see driving twenty plus hours to Florida, let alone fly there. The last time we took Dermot on a plane we were very lucky to get first class and that his wheelchair wasn't trashed in the baggage compartment. On the way home we were in trouble. Dermot needs full support while sitting, we bring his large carseat and after that is installed in the narrow airplane seat, there's not even an inch of space left for his long, six year old legs. After we returned home from that trip I knew it would be a long time before we would travel again.

So I listen to your stories of family vacations to Steamboat or Orlando and I envy you. I envy your lifestyle that affords you the luxury of getting on a plane with your whole family and only worrying about keeping the kids occupied with iPads and coloring books. Not once do you worry if you forgot any meds or the extra feeding tube. Will the hotel have received the special delivery of formula? Does the airline have two first class seats (at no extra charge) to fit a mother and her son with low muscle tone and a giant car seat.

I sat with a sleeping Dermot in the family changing room, frustrated and defeated. There's three locker rooms at the YMCA, I tried them all and ended up here. With no proper table in which to change Dermot into this swimming apparel, a back spasm was most certainly in my future. I could kneel on the cold wet concrete floor or hunch over and let my lower back complain about it to me now, as it is doing. The ibuprofen is trying to quiet the complaints, but I've about reached my limit.

Dermot weighs nearly 50 lbs. 50 pounds, up and down nearly seventeen times a day. I weigh 130 and am 5'4" tall. I fear that my body is failing. I fear that I may need to rely on others to lift and carry my baby boy. I'm angry about it.

Most times I'm okay with our daily life and the routines that complete it. But the back pain has been getting to me this week. An inordinate amount of ibuprofen hasn't made it go away. The elaborate foam roller and massage ball I bought yesterday will only partially relieve the syptoms. I know there's a transition time coming that means I won't lift and carry my son myself.

Logistics will get more challenging. Trips with the family will be segmented. Swimming at the Y becomes a pain in the ass...

Monday, February 11, 2013

Grief in a 41 year old

It's eleven o'clock. I don't want to go to sleep. Or even try. I put my head on the pillow and the thoughts come rushing in. Thirty five days ago someone else's little boy died. Thirty five days ago my husband and I wept on our knees in the hallway of our home and tried to explain why to our four year old boy.

I immediately made lasagna and M & M cookies and a CD of my favorite songs to cry to. I drove it over to their house the next morning. We went to the visitation, then the funeral. I made more food and delivered it with a note. And then more food and more cookies. More notes. More cookies.

Every night since the death, I can't seem to sleep. The first two weeks I spent late night hours in my dark living room drinking sleepy time tea, watching a rabbit at the bird feeder outside the window.
Images of the funeral and details of the tragedy keep my mind racing. Complete sorrow for the family, complete.

I know this is grief, I've felt this before. I've stayed awake too many nights to count. But it's not my child, right?

I've been invited to remember how it used to be. I remember the gut wrenching pain. Pain that has been dulled by five years of life experiences and a hell of a lot of acceptance. I know my grief is different, it's ongoing. It looks at me in the face every morning, it smiles when I say "Good Morning!". It makes my back spasm at the most inconvenient times, it reminds me how different my life is from yours. My grief changed me into a better person in the most painful way imaginable. My grief continues.

Their grief is the aftermath of a horrendous car accident. My grief is watching the car accident happen in slow motion.

So I lay awake at night thinking of the family and what they will have to endure in the coming months and years. They have to learn to live again, without him. How? Why? What for?

I cry for them because it is a place only they can navigate. Grief is personal, private and painful.

All we can do as friends is show up. Answer the call. Meet them for breakfast. Send them an email. Bring them food. Make them cookies. Pray with them and for them.

It's ok to lay awake and not be able to sleep. It's grief.