Tuesday, January 11, 2011

I need to vent!

2 years ago we were told about a procedure being done in China that could help our daughter see the world. A procedure that has helped hundreds of SOD children suffering with blindness over the past few years (just about all who had it done). When we found out how much it cost and that insurance covered none of it we started fund-raising. In the process of fund-raising we encountered disaster after disaster and we raised no more than 1300.00 out of the 60,000 we needed. We got a very limited amount of help, people we hardly knew from church donated time to make us baked goods and help with a bake sale, an auctioneer we had never met volunteered for an auction (only 1 person showed up due to the local newspaper Taylor News failing us and not helping to get the word out, sad since the Taylor Lions Club president was an employee, he ignored us and their cause is to help the blind!!!) and we had 2 family members donate money , one donating some time to help make fliers. We couldn't get anyone to tell anyone about the fund-raising cause, help us do fundraisers in their areas (and we know people who KNOW PEOPLE), post the website to Facebook/Myspace (maybe 10 people did this for us out of the 100's of friends we had), NOTHING. Heck we could hardly get anyone we knew to join the FB page we created for Miriam, we def. couldn't get them to share it with friends. For the longest time I felt like killing myself, that is what fund-raising did to me. It made me wish my daughter had a different mother, someone who might actually be able to get the job done. A mother people gave a damn about to give a damn about her, a mom with better friends and family. She is an angel and it is impossible for people not to love her so I knew the problem was not her, it had to be me. After the mess of failures and a miscarriage I gave up. I took it as a sign from God that this was not meant to be even though I couldn't imagine how he would have told us about it if it wasn't. Ignoring that I resigned myself that my child would be blind forever. I decided that if I could not help her I would walk, run, strut, dance, sing and play in whatever cause for the cure for blindness I could find. I would help a cure for her to come to the United States so we would not have to travel to a dangerous foreign country to get this revolutionary procedure (a country whose medical advances is FAR superior to ours might I add) and so we would not have to rely on the "kindness" of others. In an effort to follow through with my commitment to my daughter I started a team for the 2011 San Antonio Vision walk. I have been on the phone all morning trying to find people to join our team and walk with us. A commitment months away giving anyone enough time to prepare but what do I get "oh no, I just can't commit to that". How is it NOBODY seems to give a damn about our child? I know this walk does not directly affect her but it does help other children and it does help blindness. Regardless of the illness it cures it IS a step in the right direction for Miriam. For every cure discovered a new scientist is open to find a cure for something else. I am trying to see the big picture here, why isn't anyone willing to put aside their selfishness and help? So many other parents have been able to raise money for their children and for these kind of causes so this baffles me. Is this really a testament as to the type of people we surround ourselves with?

Now I have to say, I don't feel "entitled" to anything. I have busted my ass for everything I have in life and I expect the same from my children. But I do expect a little bit of compassion from people who claim to love and care about us. Some of those people we have gone out on a limb for so many times it makes our heads spin. Trust me, my head is spinning just thinking about how much money we have loaned, how many couches have been slept on, houses lived in, food eaten, rides given, FB causes shared, etc... I expected nothing for the things we did, heck I have never even brought up the help we gave to people until this blog post, the moment I hit my limit! But it would be nice if for once they would say, hey, lets help THEM for change! When fund-raising for Miriam I never once asked my or Tom's family for money (or our friends). I asked them to share and help with time. I asked my mother in law to pass fliers in her area, a place we used to live, all I got was "no, I don't think so, I can't do that". I asked my brother to ask if he could put some fliers up at the convenience store he worked at, again "no, I can't do that, I already know they won't let me"...HOW DID YOU KNOW? We asked a close friend if they could spread the word around their college campus "I would if I had any time". Asked my mom who is a truck driver if she could pass out cards and fliers at her rest stops but she didn't even want to talk about it. This was the response from almost everyone we knew when we asked for a little bit of time. Some of the time we asked for took less than half a second to tell someone a web address. I would do every bit of this and more for all of these people and they know it. It frustrates me so much, I just want to scream!

I am to the point where I am just not going to bother anymore because all of this is not only killing my faith in God and people in general but it is killing whatever faith I might have had in myself. I just feel like such a failure. Why would God trust me with one of his special children? Look at the horrible job I am doing!

And for the record, I honestly don't care about alienating the people around me, they alienated me years ago! I am tired of holding it all in.

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  1. email me your story and i will post it to my blog as a guest post. send all info to mari@sprinkle-of-fun.com

    are the family members not willing to help because they are scared of the treatment or why is it they are not willing to help. have they told you their true reason as to why they are not helping?

  2. Thanks! They are all supportive of the cause, in fact it is my mother in law who told us about it. They just don't "give" outside their own little boxes. Most of them are very selfish and prefer to take instead of give. This vent is a lifetime of frustration at family members for a lifetime of let downs. There comes a time where you just cannot take being failed anymore by those who pretend to care. I think I just hit that limit on this particular day. I can live with them failing me but I cannot live with them failing my babies. The treatment itself is proven effective and is really safe. It isn't even an invasive procedure, it's a stem cell transplant (taken from adults) , stem cells injected to the spine over a course of a few weeks. We have even met parents and children who have had the procedure. We had a television news interview and 2 newspaper interviews but every single outlet FORGOT to put/say our contact, website and donation information so those venues were just a waste of time. It was a string of VERY VERY bad luck. The stress of it all caused me to have a miscarriage after which I stopped fund-raising for the sake of our entire family and my husband started working 2 jobs.