Friday, July 17, 2009

www.petitiontocuresma.com

Before falling asleep last night, I went back and looked at some of the petition signatures from January and February. I had another SMA parent ask me if I was spreading the word about the disease. I try, but that's one of those questions that hurts me a little. I never feel like I'm doing enough to get the word out. Every time I see another baby die, I wonder if there was something I else I could have done to help stop SMA claiming yet another life. I needed to look back at the petition and see that yes, I had made more people aware.

Many of the names I saw made me cry. Some of those who signed in honor of Eli I don't know personally. I am sure they were some of the amazing ladies from the pregnancy message boards I visited last year or some of you who visit me here. I saw my brother's name, a few cousins, and some friends and former coworkers. I noticed some people who had obviously been recruited by a couple of my amazing friends who continue to work on getting signatures even now. It makes me sad that there are millions and millions of people in this country but we can't get 100,000 signatures on the petition. Have you signed yet? Are there friends on Facebook or through your email that you can ask to sign too? If so, please do it in honor of my Eli. Help that beautiful little boy continue to make a difference. I need that to happen, more so now than ever before.

Thank you to everyone who keeps coming back to visit my blog. I know I'm not Miss Sunshine and many of my posts are angry rantings, but I have to lie enough in "real" life; let me have this one place to be me, the angry hurting mom who would give anything to hold her son again.

http://www.petitiontocuresma.com/
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4 comments:

Murphy's Law said...

Rita, you spread that word more than you realize. Every nurse who has ever helped care for Eli is going to remember SMA. She will think of Eli and SMA every time an infant comes into that hospital with low muscle tone.

Some of them may donate to MDA at the checkout in the grocery line, and think of Eli and SMA. Some of them might drop a quarter in the Knights of Columbus collection bucket, and think of Eli and SMA.

The ones who distribute those crabs will think of you, Eli, and SMA. You ARE spreading that word - sometimes directly but sometimes indirectly. And truthfully, there were days I didn't have enough emotional strength to even confirm my child's existence, nevermind going into why he had to die. You are doing the very best you can. I am so proud of everything you have accomplished in Eli's honor.

And yes, we do try to get the word out, but your telling one person or another about SMA could not possibly have saved the baby who died of SMA yesterday or last week, or 7 years ago. I do believe our cure is coming . . . but I also believe they have a long way to go until it is here.

Do as much as you can or as much as you feel you can. You have done more than any mother ever should have to.

Love you lots.

~L

July 17, 2009 at 8:32 PM
Lucy and Ethel said...

I agree with everything Laurie said, Rita. I learned about Eli from MJ and from the petition, as I was scouring it several times daily for names and contact info). LOTS of folks signed because of Eli, and I doubt they stopped in February, either.

Eli's impact is far wider than you'll ever know, and it's because you have so willingly and lovingly shared his story. I had one person on my SMA mailing list ask who I was when my Facebook friend request reached them. I explained and was told, "OH!!! I didn't know your name, but I know Jeffrey's." TWELVE YEARS after our Jeffrey days ended... I can't tell you how good that made me feel.

You have not only undertaken a LOT of big projects in Eli's memory, you started working on them immediately after he earned his official wings, before you could fully absorb what had just hit in that brief span between the diagnosis and his death. I wasn't fully conscious for MONTHS after Jeffrey's death with 3-1/2 months' warning. Thankfully, I could follow directions from others regarding fundraisers!!!

The book, MY main tribute to Jeffrey, didn't come until 6 years after his death.

Laurie's right, too, about the inability of any of us at present to do a thing to keep SMA babies here. We can support the families upon diagnosis and throughout the journey with information (and lots of prayers), but the rest is out of our hands. For some reason, WE were chosen for SMA duty and all that it entails. Though I hate SMA, I refuse to let it beat me all the way down and have found many bright spots in this assignment... like friends!

You should come to the eastern half of the country for a double dose of old-fashioned therapy from Laurie and me. You could do it in one sorta long swoop :)

Hugs from NC,

Helen

July 17, 2009 at 9:04 PM
Sara said...

I agree wholeheartedly with what both of these sweet ladies have said here, though they have said it more eloquently than I ever could. I am so glad you have your SMA Moms to hold you up, even though you came across them on such tragic terms. They are here now though, and together you will all walk and fight this horrible disease for all the beautiful children lost and still here fighting.
I love you so much, Rita, you know that. I will help you with whatever need for as long as I possibly can - getting signatures, helping with fund raisers, whatever it is that keeps the word about SMA spreading.
I don't think anyone faults you for being angry, I don't know anyone who wouldn't be. Having a place to let it out is vital to your healing.
Love you to pieces~
Sara

July 18, 2009 at 1:33 AM
Anonymous said...

Rita, you really have spread the word to a lot more people then you realilze. I am one of those people. Until recently, I had no idea what SMA was and now I do because of you and Eli.
I have forward the link to the petition to all my friends and family to sign and asked them to please do the same.
Just in case you are wondering how far you are spreading the word, you spread it all the way to Rome, NY. Keep it up.
Big hugs to you.
Penny

July 20, 2009 at 12:16 PM

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