Wednesday, September 19, 2012


Sure has been a long time since I've written, huh? Wow, almost a year. Sure do have alot to fill you all in on, but most of it is just the usual. So, one might ask "Why start again now?"  I'm not sure, other than I feel this need to share.

Brigitte is in the hospital, again.  Seems to be the never ending story of my life. She had surgery on Monday and isn't recovering as quickly as we would have liked, but; nonetheless, its a story that has been written time and and time again.  Seems like the never ending saga. But, that's not why I write tonight.

I wanted to share what's been going on with "me!!"  Yes, me.  Some things have changed for me over the last few months. I'm not completely certain why its finally happening, but it is and instead of running away from it like I have done so often; I am embracing it.  It feels amazing.  It feels right.  

In May, I applied to be a LEND Fellow at Children's Hospital in Boston.  I remember the day I sent my application in.  It was the deadline for it being due, and I totally did it on a whim, never imagining I would get in, and secretly wishing I wouldn't, because that would mean I would have to get out of the protective little box I have found myself in for the last six years.  The interview is a complete blur, except I do remember thinking to myself, "I am so under-qualified for this, I'll never get it."

Much to my surprise, I got a call in June that I had been accepted.  For the first time in my life, I didn't know how to feel.  I was torn in two distinct directions.  One side of my brain telling me that it was amazing and that my life was finally going to change in the direction I had wanted it to for a long time.  I finally had a purpose that meant something other than wiping boogers and making lunches.  I was being recognized for all the hard work I had put into "Saving Brigitte."  Literally and figuratively.  Then, there was the other side of me that was already plotting to sabotage this opportunity, much like every other one I had been given.

You see, for the last six years, I have done what I thought every mother would do for their children.  I have fought, I have advocated, I have been "that mother," because I just assumed that is what every parent does for their child.  I have managed to make it to every single football game, every single cheerleading competition, every single school event.  I have balanced what's right for Brigitte and also balanced the life of three other very active children who might not have special health care needs, but need me as much as she does.  I have realized that most of the time this doesn't happen.  Most of the time, people listen to the doctors,educators, and professionals.  They nod their head and just to whatever it is they tell them to do. They don't question things, they don't research, some even do nothing.  Yes, they exist.

Over the past year, I found myself advocating for Jake at school.  He has been passed along as "such a good boy,"  "he's just immature, he'll catch up."  Only to find out that I should have followed my instinct a while ago when I thought something was wrong.  I was lucky to have an ally in his fourth grade teacher, whom to this day, was instrumental in getting him diagnosed after so many others just ignored a very obvious problem.  Jake was diagnosed with NVLD in February.  

Again, I was immersed in a world I really wanted nothing to do with, but was learning as much as I possibly could learn.  Pushed into a community that I now realize so desperately needs me and my passion to do what is right for these kids; not only my own, but countless others.

Its been two weeks since I started on my new journey as a LEND Fellow.  I proudly describe what it is.  I have a confidence about me that I didn't know existed because I am constantly down-playing just how critical I have been in my children's development and subsequent successes.  It was pointed out to me again on Tuesday, as I sat in another training class that started this week.  I am taking a course on Educational Advocacy through the Federation for Children with Special Needs.

We were going around the room introducing ourselves and what our affiliations were, when the Executive Director stopped me to tell the class just how elite the group of LEND Fellows were.  At first I was embarrassed, but then it happened.  This wave of pride came over me and no matter how hard I try, I can't get it to go away.  I am finding myself fantastically overwhelmed by all the knowledge I am gaining from both of these programs.  I wake up every. single. morning., EXCITED about my future and that of my children.  Excited to finally put my knowledge out there to help others.

I will admit, it has been very difficult to leave the hospital for my classes this week, but as my good friend Cristin, a former LEND Fellow,( said, "giving yourself over to the class is an investment in her and her future."  How right she is!!!  With any luck, it will also be an investment in the future of children and families who walk the road of disabilities.

1 comment:

  1. Wow Shannon...I have sabotaged opportunities as well, stuck in my own excuses. You have inspired me to change that. Thank you