Play “Miss Your Voice”

My Dad would be 72 today. He passed away unexpectedly last October and I miss him every day. On Memorial day this year, I was feeling melancholy. I missed laughing with him. I missed singing with him. I missed his rich and poetic conversation. I could go on and on about what I miss but my dad would be the first one to encourage me to channel my emotions into something productive. So I wrote a song. Since he passed away, and our line of communication closed, I’ve poured over every letter, birthday card, voicemail, and even the messages he wrote on the title page of books he gifted me. The chorus of the song comes from some words he wrote to me as I left to England on a 18 month mission for my church. The words were so appropriate then and even more appropriate now in his absence: “Angels will call in the notes from the wings of your stage when you go front and center and wonder what comes next.” I know that my assigned angel on my mission must now have my dad as a companion as I feel him so strongly at times. As I grieve his physical absence, I delight in his eternal spiritual presence.

While writing the lyrics and melody on the piano, I knew my unused guitar in the corner (a gift from my Mike after earning my Bachelor’s degree) was a better fit. Mike taught me the chords that make up this song—phew, there are only three chords for now.The song and my guitar skills (or lack-of skills) are a work in progress but I needed to share it on his birthday. We recorded it in our living room. We bribed our little ones to stay quiet with a package of gummy bears while we recorded. We only had the time it took until the gummy bears ran out. Bless Haribo.

Lyrics

I miss your voice. I need your voice.
You went away. I had no say.
Your letters stopped and you can’t call.
I miss your voice. I need your voice.

So please won’t you, call out the notes from the wings.

I miss your voice. I need your voice.
You went away. I had no say.
You left too soon, without audieu.
I miss your voice. I need your voice.

So please won’t you, call out the notes from the wings.

Ella Sophia’s first day of Kindergarten. She joins older brother, Stewart at Burr Elementary. Stewart enters 4th grade.

Thomas prefers cookies to cake. So cookies he had. He was really bothered that there was a lit candle in his cookie preventing him from enjoying it. We had to sing the birthday song really fast—no Opa or Swedish versions this year.

To celebrate his day, we spent some quality time at his park, the Auburndale Cove.

October 1, 2009 Thomas was 13 months old.

“Is everything correct?” the receptionist at Boston Children’s Hospital asked me while checking in. Thomas was scheduled to see one of the many specialists we would get to know so well over the next months.

I quickly scanned the medical information sheet:

Name correct. Check
Birthdate correct. Check
Address/Phone correct. Check
Insurance correct. Check
Reason for visit: Failure to thrive. Not check.

I wanted to say, “No that is not correct.” Reading those words made it the most real to that point.

I have to say, reading that was heavy. Thomas, who had weighed a whopping 15 pounds at 9 weeks had stopped growing months ago.

Many months and dozens of tests and hospital visits later, Thomas was diagnosed with growth hormone deficiency. We were actually somewhat relieved to hear the news as there were much worse (fatal) possible diagnoses. Growth hormone deficiency is treatable with very high success rates. Thomas is now doing so well. His low muscle tone, growth and weight are improving with nightly growth hormone injections (administered at home by Mom and Dad) and weekly physical therapy.

A List of the Specialists, Health Care Providers, Cheerleaders that have helped Thomas get to this point:

Dr. Qian Yuan, our pediatrician and GI Specialist, who touches foreheads with Thomas at the beginning of each visit. He helped us navigate the vast medical fields on our journey seeking help for Thomas. He would often call to see how Thomas was doing and to get updates. 
Erin Rosner, our physical therapist, who came to our house weekly, month after month, and lovingly encouraged Thomas to crawl and eventually take his first steps. She thoughtfully taught us (Mom, Dad, Stewart and Ella Sophia) so we could be better advocates for Thomas throughout the week by encouraging his exercises. She is forever endeared to us.
Dr. Nina Ma, our Endocrinologist who patiently assisted and educated us.
Neurologist and a gentleman, Dr. Robert Wolff
Geneticist, Dr. James
Cardiologist, Dr. Susan Saldeb
Orthopedic Surgeon, Dr. Seymour Zimbler
The gentle nurses at Boston Children’s who administered the Argenine Test and the clowns who entertained Thomas during the 7 hour long test.
Stephanie Regan, our delightful Speech Therapist.
Susan Webb, the Endocrine Nurse at Boston Children’s who taught us how to mix and administer the growth hormone. She was warm, funny and just whom we needed to introduce us to our new daily routine. Liz doesn’t like needles and blood. In fact, she took an EMT class in college to help her get over it. Apparently she needed a little more exposure to complete her tolerance. 
Thank you Heavenly Father for supplying peace along the way. You told us that Thomas had an important mission on this earth and would thrive. Thank you grandparents, aunts, uncles, cousins and friends around the world praying for Thomas.

Lizzy is nearing the completion of her Liberal Arts Masters at Harvard. One of her Summer classes was Works on Paper taught by Professor/Artist Annette R. Lemieux. Annette created a supportive environment that helped extinguish the fears of a wannabe painter. Talented artist, Mike jumped in to help and taught Lizzy so much at home. It was a Summer highlight for the couple.

Milk Bottle
Mixed Media: Gouche, watercolor, graphite, collage on partially gessoed masonite.

Ella Sophia delightfully tapped danced her first recital while her family couldn’t stop smiling. She loved wearing her costume, make-up and performing on a huge stage. Lizzy had so much fun putting mascara on E’s touch-the-moon eyelashes.

Some recent charmers said by Ella Sophia:

She described how the Holy Ghost works to comfort her: “The Holy Ghost goes into my body and scoops up the bad stuff.”

On Father’s Day she explained to Stewart why she didn’t get up to help make Daddy’s surprise breakfast: “I always wake up late because I have wonderful dreams. There were bracelets that were blue and you could flap and fly with them without having wings.”

Stewart celebrates his final days of third grade. He worked so hard and had a great year. He constantly shares his fabulous education with his family at home. He is shown above with his teacher, Ms. Lawton and good friend Michael. Thomas entertains some of Stewart’s classmates.

A recent Stewart funny:
There isn’t a question that I ask Opa that he can’t answer. I don’t know any body that knows more history than Opa and me.

I asked recently turned five-year-old Ella Sophia before the recital if she was nervous,

“No,” she calmly replied. “What song am I playing?” (We’d been preparing for weeks).

“Mary had a little lamb,” I nervously reminded her.

“Oh, that’s easy.”

Listen closely and you can hear Thomas identify her from the audience.

Stewart also played in the recital. He conquered Heinrich Lichner’s A Short Story.
It was a treat to have Oma and Opa visiting from Salt Lake and cheering them on as well.

Catching fish at Walden Pond (Ella lost no time shedding her shoes)
Exploring windy Marblehead and hot seafood to warm us up. Why is it that we always crave seafood when at the Ocean?
Late night Catan games with a quart each of Cocoa Metro
Concentrated cousin time
Eating Regina’s Pizza
Boston Children’s Museum

Amy, I need some more pictures. Please email…