On October 30, we are participating in the First Annual Stroll.athon for Rett Syndrome in South Florida. This is the first fundraising event that we have taken part in.
When you have a child with Rett Syndrome (or any type of incurable special need) you feel very, very helpless. I take her to therapies, give her medicines, subject her to medical tests, and advocate for her at school but there is still only a small return on all of that investment. My child still doesn't always acknowledge me when I walk into the room. She refuses to play with me or allow me to help her. She needs help with every activity of daily life- eating, dressing, toileting, and even communicating. It's a labor of love and I do it every day, all day, because I love my girl so much.
This helpless feeling leads to advocacy. Raising awareness and fundraising for Rett Syndrome research is all I can do. Especially at this point in my life, where I am dealing with secondary infertility and wondering if I will ever have another child. Allison is it for me and I am going to do everything I can to give her the best life imaginable.
So, we are walking and raising funds for this event in two weeks.
This is what I need advice on. Our fundraising goal is $2,000. We have been working since August toward this goal. We have sent out messages and actually made a lot of progress. We have raised over $1,600 at this point. That is amazing and I am so grateful to all of our donors. What I am angry about, furious in fact about, is that only $300 have come from our family members.
Yes, that's right. And actually, $200 of those $300 have come from Allison's grandparents. So, from all of my aunts, uncles, cousins, my stepmother and stepsister, and all of Jason's aunts, uncles, and cousins (a combined total of approximately 70 family members) they have donated a grand total of $100. That was two donations.
I am so incredibly pissed off about this. These folks are not poor people. They have received messages from me via email and/or facebook. They say things like "Let me know if there is anything I can do to help..." or "I could never do what you do..." They are people who have never been solicited by me for money for Rett Syndrome.
These people, who are supposed to love and care for us and Allison, can't even donate $5 or $10. These folks don't even reply to my emails or posts with a "Good luck" or a "We'll be thinking about you on the 30th".
Gee.. I don't know why this makes me so upset, other than I guess I feel like they just don't care. I am feeling so helpless, and all I want is to feel like Allison's family supports her.
Can I do anything? Send another email? Post something snarky on Facebook? I feel like telling them all to go to hell, but I'm sure that's not very productive.
What would you do? Should I just calm down and let it be?
