Breath of Hope – The LAM Foundation

June 1, 2011 is the first Worldwide LAM (Lymphangioleiomyomatosis) Day. LAM is a rare, progressive, cystic lung disease that strikes primarily healthy young women. LAM is characterized by an unusual type of smooth muscle cell that invades the tissues of the lungs. Over time, the LAM cells create holes in the lungs, preventing the lungs from providing oxygen to the rest of the body. There is currently no cure for LAM, but research trials are underway to find a treatment. (www.thelamfoundation.org)

Why do I care about Worldwide LAM Day? After several months of being treated for moderate-severe asthma, my sister was diagnosed with moderate-severe LAM in February. My sister – my childhood playmate, a field hockey player and track runner, the valedictorian of her high school class, my early-morning walking partner before kids, always my friend and confidant, my cheerleader through life and my rock, which she will forever be! – can no longer play tag with her daughter or help her learn to ride her 2 wheeler, can no longer climb a flight of steps without becoming winded and goes through life with less than 44% lung capacity, which will only continue to decrease.

As I watch my sister walk this road of increasing physical limitations not to mention seemingly endless visits to pulmonologists and lung specialists, I feel so helpless knowing I cannot stop what is going on inside her body. But what I can do is raise awareness and lobby for a cure. I had the great privilege of attending LAMposium with my sister and various family members in April where we met caring and attentive doctors from around the world who are diligently searching for the reason LAM occurs and also for a cure. We learned about a recent drug trial that has shown promising results in slowing the progression on LAM. These doctors have many ideas of trials to run and research to perform, but lack the funds necessary to do it. If you have a sister or girlfriend who has stood by you through thick and thin, has believed in you when you did not believe in yourself, and has inspired you to levels of achievement greater than you ever dreamed like mine has, consider donating to the LAM Foundation (www.thelamfoundation.org).  And hopefully someday these women – daughters, mothers, sisters, aunts, wives and friends – will be able to lead the lives they dreamed of living and breathe the “Breath of Hope.”

If you wish to learn more about this very rare disease or donate to help find a cure, go to www.thelamfoundation.org

“It’s just not your day, babe.”

I had lofty plans for the day – a load of laundry, some cleaning, summer clothes to put in drawers, and call to make a reservation for the surprise get-away I was planning for my husband and myself. (Call!! because the last big surprise I planned for my husband was his 30th birthday party, which he found out about through a rogue email.) My 2yr. old son had other plans for the day. I was awakened by his screams at 6:30a – very early and very uncharacteristic of him! I got the feeling it was going to be a long morning. And it was. By 8:05a I was checking my watch. My son was already begging for a video and needing my constant attention and holding. At 9:30a, I caved and put in the video of farm machinery we had recently gotten at the library. My son LOVES tractors and combines, so I knew we were really in trouble when he came to find me with another 10mins left in the video. He continued to cry and cling to me. I got him a snack since he hadn’t eaten much for breakfast, but he didn’t touch the snack either. He finally settled down as I got him to lay down in my daughter’s bed snuggled with his blanket while I worked on putting this summer’s shorts in her dresser. At 10:20a I moved onto other chores, and he promptly climbed into his crib, which is his safe haven. Needing a little break myself, I went downstairs and lamented to my husband, a computer programmer who works from home most days, about the oddity of our son for the day. I continued to sit in silence in his office for a bit, thinking to myself that I should have taken my dear friend’s offer yesterday to watch my kids today so I could have some “me” time.

Upon returning upstairs, my daughter informed me that my son was asleep. I checked his room, and he was indeed asleep. Hhmmm, what will this do to afternoon nap time that I so desperately need each day? Not to worry – he only slept 15min. and started his crying, clingy routine again. My daughter asked me if she could “write an email,” so I got her set up in Open Office to “type an email” for a while. Then I sat down to read books to my son, but his constant yawning and rutching around made that task rather unenjoyable and told me he was trying to keep himself awake. That’s when my daughter informed me that she could no longer type – and there was the big ol’ beach ball, rolling and rolling, arrghhh. So At 11:15a, I warmed up soup for my son which I spoon fed him and he hardly ate. Not knowing what else to do and realizing I couldn’t hold him for the rest of the morning since I had promised my daughter pancakes for lunch, I put him back in his crib and asked my husband to come fix the laptop before he left for his lunch meeting, which – he had informed me at breakfast – would be taking place at one of my favorite casual eateries – either Isaac’s or Panera Breads. I didn’t bother to ask him what the final location was – just would have made me more jealous after such a tedious morning.

“Bear Creek Hotel?” said my husband with an impish smile as he looked at me across the counter while working on the computer. “Do you need a get-away, babe?”

Sirens went off and balloons popped in my brain. Triple bummer!!! If were a swearing woman…. Not being able to think fast enough to cover my huge blunder, I remained silent and hoped he would get the hint. No dice. More questions

“Yes,” I finally confessed. “I was planning a surprise get-away for us.” The idea had been in the works for less than 48 hrs, and I was totally exposed – and it was all my fault. Asking my husband to fix the computer and leaving the tabs open in the internet browser to the pages with “Bear Creek Hotel” plastered on them.

I could tell he was trying not to laugh at my obvious frustration -“It’s just not your day, babe,” he said as he hugged me and walked out the door to enjoy his fabulous lunch with his supervisor.

The day I bought this dress

The day I bought this dress, I thought of you and your love of secondhand shopping. The Dress

The day I bought this dress, I thought of your smile and energy. I knew you would be excited at my find.

The day I bought this dress, I was looking forward to another great family vacation with you, the family picture you wanted taken, more evenings of take-1, and a future filled with great times together.

The day I bought this dress, I had such hopes for you wherever your life was to lead you.

The day I bought this dress, I hoped to someday love your children the way you loved mine.

The day I bought this dress just 3 weeks ago, you were still here.

~

The day I wore this dress, I put it on with the heaviest heart imaginable.

The day I wore this dress, it soaked up the tears of many.

The day I wore this dress, I  leaned on our family and friends to keep me going.

The day I wore this dress, I received a 1000 hugs; but none of them were yours.

The day I wore this dress, I still wasn’t convinced you were gone and expected you to bring on the party.

The day I wore this dress, the thought “this is too much to bare” rang through my head louder than any words spoken.

The day I wore this dress, my hopes for the future together were shattered; but I will cling to the beautiful memories we’ve made, the life you lived and the spirit of living loud that you brought to everyone you knew.

~

I love you and miss you, Alicia Corinne Miller ~ October 23, 1987 – April 28, 2011. May you find the peace you longed for on this earth.