From time to time we invite guest bloggers who are part of the EE community to contribute their unique voices to our blog. Today’s blog contributor is Rebecca Fox Starr, Emily’s friend since first grade and a lifestyle blogger at Mommy Ever After.
Hello, Entourage! I am so honored to be here, writing for EE. If you will, please allow me to introduce myself.
My name is Becca and I am a 31-year-old wife, mother of two, writer, blogger, dance partier, singer/songwriter & Emily’s Entourage supporter and I am about to dye my hair purple.
Now, I do love to do fun things with my hair; I am free-spirited, some would say. (Exactly one year ago, after wearing a platinum blonde wig as a photo-booth prop during a wedding in Bermuda, I dyed my naturally brown locks as close to white as they would get. From there I went to pink, then to rose gold, then chopped my hair to above my shoulders the day before New Year’s Eve.)
But, this is different. I am dyeing my hair purple this month as May is Cystic Fibrosis Awareness month and purple is the CF awareness color.
I am dyeing my hair purple for Emily.
Emily’s Entourage is an entity that is truly incredible to behold, and I am honored to be a part of Emily’s tribe. It has been…well…breathtaking to see how Emily’s Entourage has grown over the past several years but I must be totally honest: as awesome as it has been to grow with Emily’s Entourage, it has been even more awesome to grow up with Emily.
Emily and I fell into an easy and close friendship in first grade. She was beautiful, brimming with sweetness and just this tiny ball of light. It was impossible not to be drawn to her. At the time, I knew that she had to do special exercises with her mom, Liza, (who is a most incredible woman and the subject an entire separate blog post or 10,000) but I did not grasp the enormity of Emily’s situation. This is a testament to both Emily and to her parents. We would play, sometimes from morning until night, and she would stop to do her treatments, just like any kid would stop to take a bathroom break or to tighten a pair of lace-up sneakers. Emily wasn’t different. She was special, yes, but that had nothing to do with the fact that she had Cystic Fibrosis.
To me, Emily had a loving demeanor and was a joy to be around. It was at Emily’s house that I first tried Greek dolmades. When my younger sister had to have tubes put in her ears, my mom dropped me at Emily’s house in the wee hours of the morning to be cared for. My Emily wasn’t sick. She was my friend. And that was what mattered at seven years old, and then at 17 and then at 27 (when she and I went out in a group to celebrate my birthday over karaoke and sushi).
Because of Emily’s Entourage I have learned so much more about Emily’s plight. Several of the people whom I love most in this world are on the Emily’s Entourage Board and so I feel as though I get some extra special insight into this extra special person and family. Each year I am even more blown away by their spectacular events (this past year I sobbed through their campaign video and at least half of the speeches at the gala) and I don’t just come out to support her when I can, but I cheer for her, silently, every single day.
But sometimes, for me, silence isn’t enough. As fantastic as the EE events are, and as much as we cheer and celebrate, they are sobering reminders of an excruciating reality. As a blogger, I pride myself on my candor, but this post is one of the hardest I have had to type. And this is why:
It is so hard to watch a loved one suffer. Don’t get me wrong. NEVER have I heard Emily complain. When I see her, she asks how I am doing, about my kids and life, and doesn’t vent about her struggles, hardships or limitations. And as a friend, I want to walk the delicate tightrope of saying, “Do you know how freakin’ incredibly amazing and inspiring you are?” every time I see her, while, at the same time, trying not to call attention to her struggles. I never want to make her feel different. She is, in fact, different, because she is extraordinary, but I never want to make her feel isolated.
Emily and I have shared so much in the past 25 years (OMG it’s been 25 years!?) Confession: I Just started typing a list of some of the highlights, but it grew too long, and so I am going to just ask you to take my word for it. And speaking of words, back to my main point.
I can wear my EE shirt every day and dress my children in their EE gear; I can spread the news about Emily and her story when I am able; I can come to every race and party; but, when it comes down to it, I can’t cure Cystic Fibrosis and if I could, I would. And I would be in a line among thousands of others, all there for Emily, all with hunger and desperation and love.
So, what can I do? I can dye my hair. Because in dyeing my hair, not only am I showing solidarity to a friend who has been there with and for me through so many of life’s ups and downs, but I can also raise awareness. I am sure that my purple tresses will be a topic of conversation in carpool line, and I can use my hair as a jumping off point to let people know about Emily, CF and the Entourage. I can walk around, proudly, and think of Emily every time I look in the mirror, or reach to throw my hair into a hasty ponytail. I can give the tiniest gesture of love to the woman with the biggest heart I could imagine.
Emily is a hero. Emily is a warrior. Emily shows me strength that I didn’t know existed. She is superhuman. And, she is also the little girl whom I knew and loved from the first day I met her.
I can wear a symbol of Emily, a symbol of strength, as a badge of honor, representing someone for whom I have the utmost respect and admiration. She is beautiful, brimming with sweetness and just this great ball of light (in the body of one small human).
And that is why I am dyeing my hair purple.