Wednesday, August 24, 2011

Happy New Year! School, that is...

We’re back in school. Daniel started 7th grade with a new teacher, one who comes with high recommendations from people in the know. Two of his best friends are in the same class, and the three boys have known one another since pre-school. I love that he has this continuity in his life.

Melody is a high school sophomore. This year she’s taking her first sign language course and is thinking about eventually majoring in special education. My step-daughter Cena is minoring in sign language in college, after studying it in high school as well. Looks like we'll have plenty of interpreters at our house! Me, I’m in year two as the diabetes clinic nurse at a local elementary school.

The final week before the new school year was crazy. Rich was hospitalized for three days for what was intended to be an outpatient procedure. He now sports a peg tube for feeding until the radiation to his throat is done, and he’s able to swallow food. What a ride this is! Getting everything sorted out with various doctors and case managers proved to be an ulcer-worthy experience. That part is behind us, though, and I’m thankful he’s home.

Daniel scared me by waking up sick on Saturday. It turned out to be an ear infection, and 24 hours of antibiotics returned him to normal. I don’t like to turn to the big guns automatically, but this time it was a no-brainer. Husband with stage 4 cancer, getting chemo and radiation = quick elimination of all potential infectors.

Last year when I inherited my new job, there was a prayer left taped to the wall by the nurse who preceded me. I read it every morning.

‘May today there be peace within. May you trust that you are exactly where you are meant to be. May you not forget the infinite possibilities that are born of faith in yourself and others. May you use the gifts that you have received, and pass on the love that has been given to you. May you be content knowing you are a child of God. Let this presence settle into your bones, and allow your soul the freedom to sing, dance, praise and love. It is here for each and every one of us.’ ~Saint Therese of Lisieux


Monday, August 15, 2011

Turn the Page

We're headed to the geneticist's office this morning. We first met Dr. P when Daniel was just four weeks old. Every few years or so we revisit and see what's new in the world of genetics that might explain his unique challenges.

I am hoping that we can also get some feedback about growth hormone. Daniel's levels are very low, so we started supplementation last October. I stopped when his appetite got out of control and I wasn't seeing the increase in strength and stamina that the endocrinologist predicted. My knees were giving out, and I was wearing a brace everyday when I stopped the gh this summer. I don't want to withhold something that will be helpful to Daniel, and I respect Dr. P, so we're going to talk about it.

I plan to ask about alternative ways to have genetic testing done. I suspect a variant of Angelman's/Retts, and there are new tests available to explore that. The problem is that medicaid doesn't cover genetic testing for Daniel. It's partly his age, and also the state we live in. I'm hoping that we can get him tested through a research avenue.

I go back to work on Thursday for the new school year. Rich is getting a ride this morning from a guy we just met named Daniel. Call me superstitious, but his having the same name as my boy is good juju in my book! He's a friend of a friend and seems very dependable.

On the same note, a neighbor I've only waved to in passing offered to bring dinner on Thursday. Apparently Rich told her all about his diagnosis. I'm glad one of us is friendly in this house!

Random side note: Last night in the van Elton John's 'Daniel' was playing. I watched in the rearview mirror as my Daniel lit up. Huge, slightly embarrased smiles and lots of laughter and clapping. When we got home I wanted to recapture the moment on video, so I played the song again. Daniel put his head on the table and fussed at me. Guess he's not into performing on command. Can't say I blame him.

Off we go!

Wednesday, August 10, 2011

Unexpected Kindness

Yesterday was a rough day. A series of snafus landed at my feet all at once, and I was aggravated, angry and tired.

Then the mail came. A box! An box, one of my favorites! My guilty pleasure when I got my first real nursing job back in 1983 was to browse the bookstore catalogs as soon as my paycheck landed in the bank. I can survive on the same pair of shoes until the heels are hole-ridden, but my bookshelf goods never cease to multiply.

Yesterday's arrival was a surprise. I hadn't ordered anything in over a month. I ripped open the tape and tried to find out who the mystery sender was. It took me a few minutes, and all the while I was thinking, "whoever sent this KNOWS how to make me feel better." It was definitely from someone who understands my weaknesses and the way into my heart.

Finally, I found the gift note. It read, "I hope this book gives you both uplifting, as it has for me. Love, Aunt Barb." The title of the book: The Book of Awakening. Yep, my birthday buddy knows me well (Barb and I are both January 23rd babies, true Aquarians through and through.)

The entry in the book for August 10 reads, "...our lives are full of unexpected surges of kindness that seem to come from nowhere. Just when you're thirsty, a cup is gathered and passed around. Just when you are lonely to the point of snapping that bone way inside that you show no one, someone offers you a ride or steadies the grocery bag about to drop from your grip. Just when you feel nothing can raise your sad head from the lonely road, the deer stutter across the road in exact rhythm with Handel."

It landed in my mailbox at the right moment to help me through a rough patch. Thank you, Aunt Barb!