Wednesday, January 19, 2011

A Call to Arms

This is me, just about a year ago, about to become a CF Mama.

I have been working on this post for a couple of weeks, believe it or not. It's been weighing heavily on me. I have recently had two encounters that left me wondering how much of our lives and my personal journey I really wanted to share on line. I dove into a pit of self awareness and defensiveness, because my stock reaction is to believe that if I explain myself clearly enough, everyone will understand me. (Ha!) And somehow, after all these years, I'm still surprised that that is not always the case.

I asked for advice and experience. Would you quiet certain aspects of your personality in order to reach a wider audience if the message were important enough to you? What I have to say about CF and Organ Donation is THAT important. Helping ONE person is important enough to me that I would cover my tattoos and put on a sweater set in a hot second if it made the difference. This isn't about "I want you to like me", this is about "I need you to hear me".

I was surprised when the feedback I got ALL said "Be yourself. Let your personality show." And it really came into focus for me this week. Authenticity speaks louder than words.

Two things really made it click. One, I got the call from our Social Worker that we had been not only nominated, but now accepted as the newest members of Cook Children's Cystic Fibrosis Family Advisory Council. I had been waiting for this call for weeks. It means someone at our clinic thinks we have valuable input and can help improve communication, education, and practices between the clinic and our CF families. They nominated us. I filled out the application, sent it back, and now the board agrees. I have something to offer. Genuine, authentic me is of help in the fight against CF. I will sit in this group and come up with ideas to help educate and communicate with the CF families at our clinic and I will make a REAL difference in someone's experience.

I also had the pleasure of being added to a Facebook group for CF Mamas (& Poppas,too!) this week, which I watched balloon up to (at the time I'm writing this) to 230+ members in about 24 hours, and it is still growing. At first I was hesitant to post. I was a little judgmental. I immediately marked myself as an outsider and decided I probably wouldn't participate very much. But I started reading posts from everywhere. All of these women & men who feel like I do. Scared. Determined. Tireless.

Before I knew it we were talking about recipes, allergies, G tubes, hospital stays, cultures, poop, ileostomies... then it progressed. I announced my good news about the council and met a dozen other moms that sit on the council at their centers. We started talking about exchanging our best ideas to bring the creme de la creme of care and communication to all centers. A grassroots movement to improve our standards. I engaged in conversations about complementary alternative therapies and how to talk to your specialists about them. I am now in a snowball of information exchange so big I can barely handle it all. And I know as sure as the sun will rise that it's only going to get bigger.

I've got the fire in my belly.

I have known for a while that my calling lay in Jackson's diagnosis. I have been poking it and prodding it waiting for it to announce itself. I know this is it, but HOW? How do I help? And now I can feel it, because I am not alone. I'm not hung up on being 'different', and I can see how we are all the same.

We fight. We fear. We love. Most of all, we LOVE. And we DO NOT give up. We will cheer each other's successes and mourn each other's losses. We will not let an attitude of defeat creep into our regime. We will band together. We will share recipes and experiences and tears and successes.

I am more motivated than I've ever been. We can do this. We can Change the Standard of Thinking.

None of us are alone. None of us are even close. If you need me, I am HERE, and I will help you, or I will find someone who can. And we ALL have something to give. We can support those who have yet to go where we have been. We can push research and funding and lobbying until the cure is found. We can help each other grow and thrive because of and in spite of Cystic Fibrosis.


  1. AMEN love!!! You have a beautiful way with words... which can only come from a heart full of true passion. :)

  2. A, I freakin' love you...and not in that drunken bro kind of way but in the you amazing, challenge, inspire me and I adore you kind of way. :) "Authenticity speaks louder than words." for real. My friend and I have a "club" we created based on Authentic Greatness: Being Real and Doing Great Things. Consider yourself inducted, hell you might has well be president. :)

  3. I am so incredibly proud of you and your husband. I have an old friend from the Bahamas who used to call strong, powerful, effective women leaders "Warrior Queen.". You are the Warrior Queen of CF Moms. I thank the Lord every day that you are the mother of my grandson.

  4. amy!! i am so stinking proud of you. i think your personality makes you stand out and makes your thoughts that much MORE noticable, and that's a great thing. you are real. and you are SMART.
    i was bummed to hear of a friend of a friend's baby recently being diagnosed with CF, but i was thrilled to have such an informative and empathetic resource to share...and promptly passed on this blog. she apparently really loves it, and i hope it's a great help to her on the journey she's just starting. REALLY proud of you guys for being on that board. that rocks. as does this picture.

  5. Amy I don't know you personally but from what I read on here I LOVE. I've said it before, but you have such an amazing way with words.

    Do what makes you feel comfortable. You speak from the heart whether you remove your barriers or not.

    You are perfect for the council and will be an invaluable asset to them, congratulations!
    The CF community can only benefit.

    Take care xx

  6. You never cease to amaze me with your strength and passion, Amy. The advisory council is so lucky to have you! x