Friday, August 19, 2016

Things You Might Be Surprised to Know About Me – The Activist Mom

It is that time of year again, Walk season. Every year, just as the summer winds down, days start getting a little shorter, nights get cooler and everyone else is buying new shoes, pencils and backpacks to go back to school, I enter Walk-mode.


Walk-mode has varied for me over the years. I’ve evolved from the passionate, yet sometimes irrational lady that people would cross the street to avoid because I was likely to assault them with a contribution shakedown. In those days, I was pounding the pavement night and day searching out raffle prizes, sponsorships, volunteers to man the food table, food donations, media contacts, and anyone in the business of entertaining children with balloons, face paint or crafts.  I was a walk organizer. In those days, I was also a pursuer of funds, although my focus on this was less intense. Without which, my walk would be a fantastic community building event, also very important in and of itself, but it would not be responsible for putting a drug in a clinical trial or for funding a grant to provide much-needed research.

These days, due to other charitable responsibilities that I’ve assumed over time, I am mostly the former-the pursuer. This often puts me in the awkward position of feeling unpopular and obtrusive.

If you have met me, or someone else like me; the person you’ve exclaimed to be a Super Mom, a go-getter, someone of extraordinary strength and abilities…You may be surprised to know these things about me:

1.    I’m shy at heart. I was born a shy person. I was the quiet kid in school who often didn’t raise her hand or want to be noticed.  Focused attention was painful for me. This all changed when my child was diagnosed. It didn’t happen in a flash of profound awareness. It happened gradually. As my child had more struggles to face, more obstacles to overcome, I became more vocal.  Little by little, I emerged as the person you see doing television news interviews, visiting my Senator’s offices on the Hill or standing on a podium addressing a crowd of people, all the while praying that someone will hear the terror in my voice, will know the sincerity of my message. I may make it look easy, but it is still grueling.

2.    Asking you to give your hard earned money to my cause is agonizing. I know how you labor for your money. I know how tight a family budget can be (insurance helps, but it doesn’t cover a lot of our son’s medical needs). I know you have other requests, from other equally loved friends and family members, whose causes are also important.  Please know that when I ask, I don’t do so lightly. It takes a sizeable amount of humility and a healthy dose of desperation to send you that email or tag your name in a social media post.  I hate doing it.

3.    Asking for your time is even worse. We are all busy. Time is a precious commodity. I worked and raised kids, I know. Requesting that you put aside your own family, your obligations and your billable hours, gives me hives. If I ask you to join our walk team, sign up for an event in your area, or volunteer at one…I will be chugging Benadryl- no joke.

4.    I’m not as calm, composed and pulled together as you may think I am. I am really just a mess with decent organizational skills that I was forced to adopt.  My knees shake when I have to speak in front of people. I practice my spiel in front of the mirror before a big meeting. I am usually juggling priorities and trying to catch my breath just like everyone else, and I get really stressed out, but I work painstakingly at making it look easy so that I can convey my message with confidence.

5.    I would change it all in a heartbeat. Usually, the author of a column such as this would say that despite the hardships, heartache, and strife, she wouldn’t change a thing. I am trying to be exceptionally honest here and I am telling you that I would change everything if given the chance to take this diagnosis out of the equation and give my child a level playing field in life. That isn’t something that is easy for me to admit. You probably think that my cause is my identity and who would I be without it? Honestly, I don’t know who I would be because that wasn’t my journey in this life. Maybe I would still be the shy, disorganized hive-free girl of my youth, maybe not.

It also means that I would not have met the incredible and inspirational people I’ve come to know along this path. These are the people who I now consider as beloved as my own family.  We understand one another better than anyone else in our lives does, including our own parents. We have supported one another in good news and have held hands and wiped each other’s tears with the bad. They are the people who will understand these words more impactfully than anyone else will. Yet, even though changing everything would include eliminating these precious relationships from my life, I would do that. Because doing so would impact my son’s ability to play sports, ride a bicycle, go on dates, be invited to parties, kiss a girl, hang out with friends in the casual way that other teens take for granted, not have a roster of specialists, need regular MRIs, an IEP, medication and the need for me, his Mom, to step far outside that zone of comfort on a regular basis to be the person who feels a need, while in Walk-mode, to make disclosures like this one.


I hope that knowing these things about me makes it a little easier for you to tolerate my seemingly endless capacity for badgering. With any luck, you won’t immediately skim over my social media pleas, won’t cross the street when you see me coming or avoid my emails and calls. Instead, maybe you will respond. Maybe you will be honest with me too and just tell me that it’s not a good time, that you appreciate my discomfort, would like to help me with my cause, but that you aren’t able. Or maybe now you will understand that even making a small donation will speak volumes and will make it all worthwhile for me. That when you respond and you don’t avoid and when you show even an inkling of support, I can get up tomorrow morning, smile at my son and put my big girl panties back on to face another day outside of my comfort zone.

9 comments:

  1. You are my inspiration. I love you and thank you for all you do.

    ReplyDelete
  2. You are an inspiration to me, and I appreciate all that you do. I only hope that one day I can be as knowledgable and involved as you are. I'm working on it, but like you, I typically shy away! You set a great example Connie. - Becca Brooks

    ReplyDelete
    Replies
    1. Thank you, Becca! You will be there when you feel the pull. So glad to be your friend.

      Delete
  3. It's like you were in my head :) So very inspirational...and to know that I'm not the only way who - to others - looks like I have it all together...but inside my four walls...not so much lol. Thank you!!!

    ReplyDelete
    Replies
    1. Sometimes we just need to be vulnerable so that others understand where we are coming from.

      Delete
  4. This comment has been removed by the author.

    ReplyDelete
  5. Thank you for your post, Connie. Thank you for putting yourself out there, for showing your vulnerable side, for sharing your feelings and for helping me to realize that I'm not alone with my feelings in this quagmire we know as life with NF. Thank you for encouraging me to go outside my comfort zone and helping me find the courage to use my voice in ways I have never attempted before. Thank you for your friendship. ~Lynne Black

    ReplyDelete
    Replies
    1. Lynne, you are obviously quite able to use that voice of yours without hesitation. You would do anything for your child. I am honored to be your friend.

      Delete