Wednesday, January 27, 2010

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





11 comments:

Anonymous said...

WOW! I am not going to lie a few tears dropped. I know how difficult it is to live without a child. But you are right the only consolation is knowing your child is not suffering or in pain and that is the only thing that makes you get through knowing he/she is not with you. I will continue to pray for you and your hubby because I know some days may be harder/difficult to deal with than others. Maybe my Bryan has met Leah and are good friends. That would be so cool! Love you, Blanca

Jill said...

Happy early birthday! Leah has touched so many just from her pictures, her story, and by being her. Thank you for sharing her with us. xo

Lexie said...

glad you got the package and I hope it lifted your spirits a little. Thinking of you guys daily...

jenlar3 said...

Here is the link (translated) for another little Swedish baby with EB. Her name is Natalie and her mom is Jenny. It would be neat if they lived close enough to Ellie to get together for support and such.

http://translate.google.com/translate?js=y&prev=_t&hl=en&ie=UTF-8&layout=1&eotf=1&u=http%3A%2F%2Fwww.ebifamiljen.se%2F&sl=sv&tl=en

Janel Waters said...

you never cease to amaze me! Your spirit though all of this is incredible!

I know it will be hard, but I hope you find a way to have a very happy Birthday tomorrow!!

Linda said...

Love the line that Leah's pictures could stitch her smile on people's hearts. She really did have an incredible smile and I'm sure that she is smiling so much more being EB free.
You, my dear daughter, continue to amaze me. I am so proud of you.
Still praying for you and Jeff. Love you guys. Love Mom XOXOX

Anonymous said...

Happy Birthday Meghann!! Hope you have a happy day and a year filled with God's Blessings. Leah is celebrating for you in heaven and wanting you to have a happy day too. We continue to keep you in our prayers. Thanks for keeping us updated. You are an amazing writer! I am the one Blessed by your posts. You and Leah continue to Bless me! Aunt Penny

Marian said...

Leah is here with me at my desk and she is always in my prayers, as are the two of you.

Debbie,mother of two said...

I know it is going to be a bitter sweet moment on your birthday. I am glad you will be with family. i can't imagine how you feel without your baby on your birthday. I have to say that it comforts me knowing she is in heaven and not in pain. I loved getting to know little Leah through your blog. She touched my heart and made me think about life differently. I continue to lift you and your husband up in prayer. I know that only the Lord can give you the comfort you need.Happy birthday. I know Leah will be looking down from heaven at her mom that day. Debbie

caseymommy said...

Hi guys..Casey's mommy here...Just wanted you to know I have been thinking about you guys and Little Leah today...I'm not sure why today of all days?? You are truly an inspiration to me. We lost a baby just before birth and although it is probably not as hard as losing one that you had in your arms for so long, I can relate to so much of what you feel...I truly hope that Casey and all the rest of our EB kids can kick EB in it's ugly butt this year in honor of Leah....
Hugs to you all....
beth

Patrice said...

Still thinking about you guys all the time. Every time I put Jonah in the umbrella stroller, I think of Leah and how she liked to be strolled all around the house. Praying for continued peace and missing Sweet Leah.

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