
Sudden Infant Death Syndrome (SIDS) Support Group
Sudden infant death syndrome (SIDS) is any sudden and unexplained death of an apparently healthy infant aged one month to one year. SIDS is responsible for roughly 50 deaths per 100,000 births in the US.

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I am pretty sure I posted that we donated Kaili's pulmonic & aortic valves and then I posted that that tissue guy made a mistake and did not follow protocol, so they can not use her valves.
We were invited to the donor recognition and they asked us to be the donor family of the year that did a speach on donation and why we did it and what it means to us and on and on. Once we found out about the mistake we backed out of the speach because it just did not seem right.
They still want us to go and receive a medal, but I really am having a hard time with that right now and am not sure if I want to go. How am I supposed to believe in something that went horribly wrong. At 1st I was not mad, but now I am mad because a mistake like that should not happen especially when they took mine & Kaili's blood one right after the other.
So my question is... would you guys go if you were Sean & I? (We would have to travel 6 or 7 hours to get to the place where Kaili passed away and where they did her tissue removal)
Your help, words, advice will be greatly appreciated.
Ginger
We were invited to the donor recognition and they asked us to be the donor family of the year that did a speach on donation and why we did it and what it means to us and on and on. Once we found out about the mistake we backed out of the speach because it just did not seem right.
They still want us to go and receive a medal, but I really am having a hard time with that right now and am not sure if I want to go. How am I supposed to believe in something that went horribly wrong. At 1st I was not mad, but now I am mad because a mistake like that should not happen especially when they took mine & Kaili's blood one right after the other.
So my question is... would you guys go if you were Sean & I? (We would have to travel 6 or 7 hours to get to the place where Kaili passed away and where they did her tissue removal)
Your help, words, advice will be greatly appreciated.
Ginger
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If you can handle being back in that place then yes, you should go, but if you have any doubts, like possibly having panic attacks by just being there, then you may want to reconsider it, you want to move forward with your grief process and if going there isn't going to help, then don't. You know we love you regardless and support you no matter what!
I still want the medal for Kaili, but the more I think about it the more I do not want to go to the ceremony... but as I said there is this tiny part of me that wants to go. I don't know why this is such a hard decision, but my emotions are all over the map for it.
I mean we would have to travel and lose wages, but as Sean always says "money is no object when it comes to our little girl" A greedy part of me wants to save the time off to tack on to our wedding and go spread a bit of Kaili's ashes over a waterfall.
Ultimately, it will come down to what you think is best and you know that we will all support you either way, but I was just thinking...Maybe just by you and your husband going there and sharing your angel's story, it will in turn inspire another person to become a donor that would otherwise not have considered? Although it's not the same, maybe there is still some good to come of it? I know this sounds silly, but even just reading your story has brought so much light to a subject that I never really had thought about myself.
Want to know the irony in this? I was asked when I got my license originally if I wanted to be an organ donor and I said no. Tomorrow I am going in the a.m. to re-new my driver's license at the dmv (it expired a week ago and I didn't even notice until this morning) and because of you and your angel, I am going to change it so that I am a donor.
I know it's not the same, but I can honestly say that if I did not read your journal tonight, had you not shared your angel's story with me, I would not have thought to change it.
Big hugs to you sweetie...and thank you.
I am still an organ donor regardless of what happened to Kaili and God forbid if I ever have to make that decision again I will do it, but I am just not sure if I can face all those people. The Hope Foundation said that we no longer had to do a speech and that they wanted to do one on us, but I just don't know. I am not sure why this decision is so hard. It should be a simple yes or no you would think!