Saturday, July 26, 2008

Speaking in Santa Monica

Well I didn't get through the speech without crying. In fact, I was a blubbering fool...oh well.

This was my speech. Maybe if you sob like a baby too, I won't feel so bad.

A good way to describe what it is like being the parent of a child with Cystic Fibrosis is like this: God takes an hourglass, flips it over and says, “Now, make every moment worth it.” We are aware every day that life is incredibly fragile and because of that, incredibly important.

Our daughter Froggy was diagnosed with Cystic Fibrosis at four months. She weighed only 7 pounds 11 ounces. Her blood work was off the charts abnormal, liver, kidney, glucose, everything was pointing to a major illness. She was anemic, malnourished, sleeping through the day. Something was terribly wrong. For one week, we had no idea what that something was. It was the most surreal, nightmare. Our healthy, active baby, who ate constantly, was pale, subdued, and fading.

Our inexperienced and somewhat cocky pediatrician assumed that the problem was a result of my failure as a first time mom to properly breastfeed. He told us to bottle feed her, and come back in a week to see if she had gained any weight. Had we waited, our daughter would have died.

Fortunately, I have an amazing group of friends. One day, in the middle of our nightmare week, about ten women gathered at my friend Mieke’s house. We talked and cried, brainstormed, checked the internet. My mom friends called their pediatricians, their general practitioners. They were my village and I will always credit their efforts with helping to save Froggy's life.

One friend, who happens to be a Nurse Practioner asked me if our baby’s skin ever tasted salty. I didn’t hesitate, "Yes, very salty! Her forehead, lips, fingertips, toes, belly." It wasn’t until that moment that I even questioned the fact that my daughter tasted like she’d been dipped in the ocean. She was just my little sea nymph. The look on my friend’s face assured me that the news was not good. "What could it mean," I asked. And the moment she said Cystic Fibrosis, I knew. I just knew. It was a lightning bolt intuition and no amount of encouragement or alternative explanation could convince me otherwise. It was like finishing a crossword puzzle, where every word and definition pointed to one main theme. This was it, Cystic Fibrosis.

The next day, we met with a more experienced Pediatrician, who took one look at my daughter and cancelled all of his appointments. After a few more tests, we were sent to Children’s Hospital for the sweat chloride test. We bundled Froggy up in blankets and a snow suit, and they checked her sweat to see if her sodium levels were abnormal. The night before the results, I prayed for anything but CF. I think I am the only mother to wish cancer upon her child. Anything, anything but Cystic Fibrosis.

When I was seven, I’d seen a movie about a little girl with CF. Her name was Alex, and she was the daughter of famed sportswriter Frank Deford. The film portrayed her daily struggles with CF, and how she suffered and eventually died at the age of eight, because of this disease. This movie was a life-altering moment for me as a child. It was the first time I realized that children could die. Death was not reserved for the elderly. So from the moment I had a checking account, I started making donations to the Cystic Fibrosis Foundation. I had no idea that they would someday become my family. That I was making donations for my own child’s future.

We spent three weeks in the hospital. The first day, Froggy was given a blood transfusion, pumped with vitamins, and slowly introduced pancreatic enzymes so she could digest her food. We started chest percussion and nebulized treatments. We met with all the experts, we watched a lot of tv, and ate a ton of take out. As hard as it was to have your child in the hospital, it was even more frightening, coming home, and realizing that we were on our own, we were beginning our journey with Cystic Fibrosis.

Froggy is now two and half, and her life is relatively normal. She plays at the park everyday, walks our dog, tortures our cats. She has three best friends who even at two years, she genuinely loves, Hummingbird, Bee Man, and the Bub. She does three hours of respiratory therapy a day, and she wears a vest that literally shakes the mucus from her lungs. She takes a ton of medications and deals with digestive issues and daily stomach aches.

She is the only kid I know who eats salt like it’s candy, shaking the salt shaker onto the back of her hand and licking it like she’s doing tequila shots. She will be sooo cool in college. We’re on a first name basis with every pharmacist in the SoCal area, and our doctors have our numbers programmed in their cell phones. I never thought we would adjust to this disease, accept it, or even live with it. But we have. We have tough days and we cry a lot, but the joy outweighs the sorrow.

Froggy's lungs are as healthy as a normal kiddo. She’s only two, but with the treatments, antibiotics, and new drugs in the pipeline, she could be the first generation of people with CF who outlives her parents.

We are aware every day that life is incredibly fragile and because of that, incredibly important. My husband and I appreciate every milestone, hiccup, tree climbing, potty training day. We know that CF becomes worse with age and Froggy may not have all the time in the world. So, we are vigilant in her healthcare, we go for hikes in the mountains, and swim in the ocean, we swing and slide at the park and sing and dance and make every moment worth it. And with the support from you and the CF Foundation we will add more sand to her hourglass, and hopefully one day there will be no time limit on Froggy's dreams.


Anonymous said...

*crying like a baby* Or, maybe, crying like someone who's been there, every day. Thanks for making the speech. I'm sure you made a huge impact.

Anonymous said...

You write so beautifully. Thank you, again, for putting into words what so many of us CF moms feel.


Anonymous said...

wow...once have touched my heart. jcn

Cara said...

Oh Elise, this made me tear up. You are such a wonderful writer. I can't even imagine how many hearts you touched when you gave this speech...

Anonymous said...

Thank you so much for this. I've been reading your blog for some time and it's so helpful for me to read in order to realize that the experience that I'm having as a CF dad is shared by many others out there. That we are not alone.

Hang in there! I'm filled with hope that your vision of our children outliving their parents will in fact be the case.

I look forward to reading the continuing adventures of Froggy and her friends.

Anonymous said...

Why am I not surprised that you wrote such a thoughtful, moving and beautiful speech?

Anonymous said...

elise, i love you- your grace, your wisdom, your courage, your ability to feel, your ability to LIVE. chanin

Lydia said...

Yeah, I think the scariest part of CF for me was the first time being at home alone ... with hubby at work, and looking at baby Azer, and looking at the pile of medications, schedules scribbled on paper, and that scary machine called a nebulizer. I used to cry when I gave him the Neb, as he used to cry and resist so bad, I felt so guilty about doing it.

Thank God today, its just another thing to be done, like taking a shower.