There are so many things I want to tell you but there aren't enough hours in the day. It seems harder & harder to find some quiet time to write lately. Hopefully after your sisters finish school, things will quiet down. They are counting down the days...
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When I visited you at the gardens some weeks ago, I told you about how disappointed I was from the response we received from the VA-AAP last month. That while they didn't exactly reject to be a part of the T1D awareness campaign from BTO- they only stated they agreed to distribute the awareness material at their conferences from now until the end of the year. They "thanked us for bringing this important cause to their attention & spreading awareness" & that was that.
This came as a surprise to me & Debbie, specially since just a few weeks back the lady there told us they voted yes to the campaign in the initial meeting...that they were taking a final vote soon but she didn't foresee any issues etc. etc..
This news came just after your anniversary, around your birthday, when my heart & mind was already hurting. So I had to step away from the whole thing, because I just couldn't add anything to my plate.
Debbie & even the CEO from BTO followed up with them, to once again explain the importance of the campaign, how as we speak, many more states have started to launch the campaign, how great it would be if VA could be one of them...etc. etc...
I don't think they've received a response as of yet.
...
When I spoke to Debbie on the phone, we were trying to figure out what happened. We felt as if we let each other down & then re-assured each other that was not the case. She was the one who delivered all the hard facts about Type One, shared her story of how she almost lost her son. Then me, well you know if you were watching baby girl- I poured my heart out telling our story.
Maybe this scared them in the end. I don't know. We don't know & could only guess because no reasons were given. It made us sad & mad because in the end, who will end up hurt by their decision- the families that will lose a another child to this stupid disease. I pray this does not happen. God forbid, it will be on their consciousness, not ours. :(
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It's frustrating my angel.
Despite all this, I promised you I would not give up. I promised you that we could continue to spread awareness & keep fighting.
Which brings me to the next subject. Also during your anniversary, when we did the Random Act of Kindness day- we learned of another little boy who just lost his life to misdiagnosed T1D in Texas. He was 11 years old. :(
His mommy's co-worker found out about us through your RAOK day on Facebook & she friended me. She sent me a message last week asking for some advice because she said his mommy isn't doing well. That he was her only child & she's blaming herself even though she took him to the doctor TWICE & twice, they told her he had something else. :( She asked if it was ok to give her my info to get in touch. Of course I gave it to her...
It breaks my heart. I'm broken for her my angel. I have prayed for her & can only hope that God gives her some strength. She has not reached me yet- hopefully she will when she is ready. But her little boy has been on my mind.
Since then too, our T1D bereavement group was introduced to a dad who also just lost his son to Type One Diabetes, undiagnosed- passed away in his sleep. :*(
That's two more lives in two months. That we know of....that are not in newspapers or in the headlines...
Two more young lives lost unnecessarily.
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It has brought me back some of that raw grief from the beginning baby girl.
It's made me even more furious at this disease. More furious that no one cares enough (doctors, insurance companies, the government) to do anything about it. That more lives are being lost.
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So I did something last week that I've been thinking about doing for a while but was hesitating...
I sent a email/letter to the CEO of my company.
I told him what happened to us. I explained that I feel I have a duty not only to you but to our members to make sure we can find ways to spread awareness & educate them about T1D. That I've tried through other channels within the company & have had no luck, so I'd appreciate any feedback he can give.
I have not heard back yet.
I don't know exactly how much I can write about it here without getting into trouble, so I will stop there.
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I don't know what, if anything will come of it baby girl. But this just can't continue. Enough is enough. We cannot stop here.
Debbie & I are going to meet with her congressman's aid in DC next week so we could talk about federal funding for Type One Diabetes awareness programs. It's a long stretch, given there are neck deep in other issues, "more important" issues...
But that's why she asked if I would join her. Maybe if they hear our story face-to-face, it will make it real for them, like it's already real for us.
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I love & miss you my little girl.
One day this will all be over. I will be with you again & none of this will matter.
But it matters now.
How many more angels will have to join you before something can be done?
Until then, we will keep fighting.
Always & forever,
Your mommy
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