I wanted to briefly discuss my role as the beneficiary of this money and the expectations that people have.
First off, we have been fundraising for a little over a year (14 months to be exact). During this time, there have been many, many sleepless nights. I have felt overwhelmed, in despair, and have wanted to give up. I have also been blessed by complete strangers donating and people coming together for ME. I have not taken that lightly. I will be forever indebted to all of you AND guarantee I will pay it forward. You have seen what I can accomplish sick, wait until I am healthy! Ha!
I grew up with two sick parents and I know from experience that it can be devastating and stressful on children. I made a promise long ago that I would shelter my kids from my disease. Yes, they are aware I have it, have seen me not want to get out of bed, stay in the car instead of run around with them at a park, cry after throwing them a party because I am in so much pain, BUT I never want to tell them NO, we cannot feed your spiritual, physical or emotional need because I.am.sick. If I do, what is that teaching my daughter who has LS?
Therefor, when our kids wanted to play soccer, we made it work and their team paid for certain things to help us out. I cannot tell you how much it lifted my spirits to see them play a sport (their first). We had Christmas, but on a much, much smaller scale. I gave them our traditional Halloween party with friends, but we did it potluck style to cut costs. We go on family outings, but not without a coupon or money saving deal. We went on vacation, but went camping with friends to keep costs low. What am I getting at here?
Even though you have an illness and may need treatment, you still have to LIVE. Matt and I still need an occasional date if we want our marriage to last through sickness and unemployment, and we still need a family vacation after ALL OF US have tirelessly handed out fliers and worked fundraisers for months.
There are some people that think that we should be spending NO money at all - Not on anything. To those people, please don't donate if you are going to put my family under a microscope. Recently someone made the comment that Matt and I should not have gone to a movie last week (one of many comments they have made). We had passes that my brother gave me for Christmas. I should not have to justify that.
I firmly believe that you should not judge the life of others. You may be on the right path, but you cannot think or expect that your path is the ONLY path.This road has been hard on everyone. My husband feels like a failure that his policeman salary cannot pay for it, my parents feel horrible that they could not pay for it, and the list goes on and on.
We have really learned who our true friends are this last year. Those who give and continue to give, with no expectations other than seeing me healthy and trusting that I am a good steward of their money or services. There has been so much love, compassion and support over the last year and I try to focus on that, not the negative.
Thank you to the 99% of you that don't make us feel guilty or temp me to run to the bank and give you your money back (Ha!). I have discovered that I have a whole community of people that have my back and want to see me healthy. I like to think of myself as a giving, compassionate, "give you the shirt off my back" type of person and I want to surround myself with people who know ME, believe in ME, and that will send me positive vibes during this healing process. Thanks to all of YOU. Lord knows if you were in my place, I would move Heaven and Earth for you. ~S
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