Butterfly Ball

Yesterday I got an email from Chris at EB Friends that the folks at befriendEB were wanting to include Leah into their upcoming event: The Butterfly Ball. I'm just waiting on an email back from Todd, the Executive Director of befriendEB on what info they need. I was told a small bio would be what he needs but I guess I need to know how many words 'small' is. As I'm sure you can tell: I can write and write and write about my little angel.

If I lived closer, I would absolutely go myself. But I know Leah will be there ..... having fun. Todd wants to include Abbi and Wesley as well ..... so it'll be a fun little field trip for all the EB Angels. Wesley will have his Superman outfit on and Abbi can hold Leah up high to see all the festivities. Man, if only we could capture angels on camera ........

 

I added a block on the side bar of links to some EB cuties that I know of. If I missed one, or don't know of one, please let me know and I will add them. It's just a way to give everyone a convenient way to check up on all these kids and their fights against EB. Oh, and there's a direct link to the translated page for Elly. Becca was kind enough to give me the direct link (which I air-headedly didn't think to do in my last post) so that saves time clicking around everywhere.

And thank you to everyone who was kind enough to send us cards. Jeff and I made a road trip up to Philly on Monday so I was able to pick things up from my parents house.

A special 'thanks' for Stacey in Texas and Lexie in Arkansas who sent me some beautiful things. It's amazing that people who don't technically know me would take the time and effort to bless me with their love and support. I guess it just reminds me of how special Leah was and how many people were touched by her.

I know how much she changed me and my life and how I view things ....... everything ...... but it's so hard to wrap my brain around how a 10 month old baby could have reached out through some pictures on a blog to stitch her smile on people's hearts. She was an amazing little girl and I know she is an amazing little angel now. When I kiss her teddy bear urn everyday I'm reminded of all the joys of heaven she has now. I can't even imagine how happy she is. Can you imagine being in pain your whole life - and then arriving in heaven and then realizing how it feels to be without pain? That's another thing I can't wrap my brain around ......... it's mind-blowing.

 

Tomorrow is my birthday and so we'll be going up to Philly again. My parents will take Jeff and I out to dinner.

It'll be a bittersweet day, not having Leah here. I remember last year: I was home on bed rest, swollen and waddling myself to weekly doctors visits and twice weekly non-stress tests at the hospital .... where every other test would result in an admittance into labor & delivery due to my high blood pressure. I think on the 27th the doctors tried to admit me and I signed myself out because I refused to be in the hospital for my birthday and every urinalysis I'd done had shown I was not pre-eclampsic. I think the 27th was the day I refused to even sit on the bed .... I just leaned against it, crossed my arms and waited for the nurse to come in so I could say: "Give me the paper to sign ... I'm leaving". (I signed myself out a few times ...... just the beginning of my difficult relationship with some members of the medical community). I remember thinking that next year it'd all be better ...... Leah would be here, ready to celebrate a birthday herself, probably walking already .......... and now my birthday is here - and Leah is not.

But I know she's happy - and that's pretty much the only consolation I have.

I found this quote last night and I posted it on my Facebook for people to think about:

"If I could hear Christ praying for me in the next room, I would not fear a million enemies. Yet distance makes no difference. He is praying for me." - Robert M. McCheyne