Monday, May 14, 2012

Why going to Conference is so important to me?

This week I became overwhelmed.  The move is now official and I am faced with the reality that between now and July 25th we will say goodbye to our friends and community of 3 years, pack up our home, transfer Ryan to a new school district, unpack at our new parsonage (nothing like moving into a new home sight unseen to increase this FX carrier momma's anxiety), attend PNW UMC Annual Conference in Pasco, WA June 20-24th, start our work at a new church July 1st, then after being there only 3 weeks leave and fly across the country to NFXF conference.

The mere thought of this shut me down yesterday and for about 90 minutes, during our drive to Olympia I told Rene' I didn't think we could do it.  Wise as he always is, he said "I'm happy with whatever you decide".  I say wise not because he should always agree with me (he doesn't) and not because I am bossy (sometimes I am) but because he knows me.  He knows that I will be gung ho about something and move mountains to make it happen and then, right when all my hard work is coming to fruition I hesitate.  It's kind of like a "this is too good to be true and it completly overwhelms me" kind of feeling. 

So this morning when I excitedly told him about the amazing Fragile X flip flops I just ordered that we will pick up in Miami, he wasn't surprised at all when he asked with a smile, "I guess we are going to conference huh?"  Smart.

So, you ask, "Why is going to the National Fragile X Foundation Conference so important to you?"  Well, let me tell you.....

      *I believe I owe it to my family to not take the easy road and say I'm too busy this summer*

For the 5 days of the conference I will have access to knowledge and community...both of which I need to succeed at this monumental task of being a Fragile X Mom.   Twice in R's life now I have had a Dr. look me in the eye and tell me that I should put my son in an institution due to his behaviors.  Twice I have chosen to take him home instead.  The first time I thought it could do it on my own.  The second time I knew I couldn't.  I need community to help me raise my son, our neighboorhood, school, church, government, FX, family...I need them all.  It's a hard thing to admit and even harder to type.  I can't do it by myself and I have to do what I hate doing the most, asking for help. 

So in the last few weeks (since Dr # 2 recommended institution) I have started asking.  I am asking for help raising funds, I am asking for help from goverment programs, I am asking for help from friends.  At conference I will recieve help from educators, therapists, psychologists, physicians, and most importantly other families.  Others who have been where I am, in the trenches, trying to do it alone, offering me a hand.  Once every 2 years we can be a part of that community for 5 days, allowing us to make contacts, gain confidence with knowledge, laugh at our similarities. 

Thank you community for your help.

2 comments:

  1. Well said, Jennifer. Just to reassure you.....NONE of us can do it alone :) No one of us knows everything...but, it is so comforting that we can share :)

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  2. Hoping to meet you in Miami - and I cannot believe that in this day and age, a doctor (2?) is telling you to institutionalize your son. Do they not know that institutions have been all but abolished and that's not how it's done? Don't trust anyone with that backwards thinking.

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