Congress Day

My angel,

Today I met Debbie & another advocate mom in DC for our meeting with her state representatives' aides. The meeting was to talk about possible federal funding for T1D awareness programs. It was a long hot humid day. It was quite an experience.

I don't know how productive the meeting itself was baby girl. We were there a long while, went over the binders Debbie prepared for us- filled with info about Type One, the BTO awareness programs, letters from many important people & random parents explaining their stories & the importance of awareness...

I'm pretty sure we got our point across. Specially after I told our story my mouse.

I got the feeling they genuinely cared & understood the cause. But the short answer & response we got is that "because of the new administration (president)", many of the existing programs (for type 2, for example) are getting cut this upcoming year & there is little to no money left for any new programs.

That even if there was, it takes years to approve & receive funding. That we are off to a good start with meeting & "having continuous conversations" about our cause with education & awareness. That our visit wasn't a waist of time, because all the existing programs today started where we are. That we should continue following up with them with any updates every 6 months. But to try at the state level to requesting funding in the meantime, & with organizations like Beyond Type One.
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So there it is baby girl. Again I found myself sitting with a room full of strangers, besides Debbie, telling our story in a state of tears & emotion.

They did let me know at the end how much they appreciated me coming in person to tell our story. That they often meet with lobbyists who are there lobbying for different causes but it's the meetings they have with their constituents that they remember the most. That they learned a great deal about Type One & learning about it on a personal level makes a difference...
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It was good to hear baby girl.

But in the end we were given little hope. They were honest in telling us that the government & health care especially is in a state of chaos right now. That they are busy dealing with the change in administration & all the changes in government. That even though we are doing good working towards this goal, it's a far reach to search for an immediate solution...

Oh my mouse.

It feels like we are trying to slay a dragon sometimes.
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In the meantime there was news of another little boy who passed away in Wales of undiagnosed Type One. They thought he had the flu. I don't know how many deaths it will take... :(
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Which is why I'm glad I went my angel. Even though it's painful & exhausting to tell & retell...it gives me purpose, keeps my promise to you & will possibly save another life.

My sweet girl.

This Sunday is Father's Day. Auntie's birthday was this past week. The girls are officially done with school.

Time keeps moving on, but I still live day by day, hour by hour.

I will put my trust in the greater power & trust in Him or her or it...or whomever to get me through, to find my way. I will continue to look up at the stars & look for you in the sunrises & sunsets.

I will take comfort in having your sisters, Daddy & the family for support.

I will continue to love & miss you, every single day.

Forever & ever,
Mommy