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

Elly's Blog and other artful things

Hello everyone.

So after I wrote my last blog about Elly, I received a comment from someone asking for a link to Elly's blog.  At the time I was all prepared to write something explaining that when I mentioned Emelie's 'page' I was merely referring to her Facebook; and that Elly didn't have a blog.  Well, today Emelie messaged me on Facebook to tell me that she has started a blog for Elly!

Here it is

Now, whoever commented looking for Elly's blog said they knew Swedish ..... so they're in luck!  All us non-Swedish speakers out there who want to keep up with Elly will need to use Google Translate.

Just open up Translate, plug the URL into the box (http://www.lillaellyskampmotjeb.blogspot.com/), select the options to translate from Swedish to English and poof ...... magic.

Then it'll look like this:

I love Elly!!! Her sweet little face makes me want to fly all the way to Sweden just to give her a kiss.  And Emelie is so sweet and doing such a great job being Elly's Mommy. 

So please keep up with Elly and send lots of prayers her way!

 

Oh and I also received a comment asking about this picture ............

........ and what the name of the artist is and such.  I sent the comment/question writer an email but in case anyone else is interested.  It's called 'Precious in His Sight' and the artist is Greg Olsen.  Here is a link to the artist's site and this picture.

Rather than buying a print, and then having to buy a frame as well, I opted to get a wall hanging of the picture from Target.com. 

It's only $39.99 from Target.com.

Here's what ours looks like, over our mantle of all things Leah.:

Oh and that cute white teddy bear ........ that's actually Leah's urn.  There's a small silver keepsake box that holds some ashes and it's tucked inside the bear.  It's not as cute as Leah was ...... but it'll do.

Prayer Request

Hi everyone.

I have a prayer request to send out. 

Does everyone remember Elly?  I introduced her to you back in November.  Well, her Mom Emelie has been so sweet with sending me messages on Facebook of sympathy and encouragement. And I know it's an inconvenience  for her since Swedish is her first language so to type in English is not her 'norm'.  Well the other day she messaged me that Elly's biopsy results have shown that she has the Herlitz form of JEB.  Which is not good news.

So please pray for comfort for Elly and peace for Emelie.  I know what she's thinking and feeling and it's not something any mother should feel.

They are such a gorgeous family.

I was looking over Emelie's page and (through an online translation) saw how she described the situation as Elly being a ticking time bomb.  And that is such an excellent description of the situation - whether that was truly what she meant or just the translations interpretation, I don't know - but nevertheless.  Not only do you have to handle an EB baby like a bomb: ever so gently, ever so lightly; but it really is like watching the fuse move closer ..... and closer .......

And you just never know when it's going to explode.

This morning Emelie messaged me asking about what I did when Leah had her corneal abrasions ...... apparently Elly's eye is red, swollen and tearing ...... sure signs of an abrasion.

And then I checked my Facebook again and saw that Christina (Evan's Mom) is taking Evan to the doctor because of his eyes.

Ugh ............ friggin EB ...... can't you give these kids a break?!!?!?!?  Just like, a day, or a week without their skin blistering and their eyes hurting and nails growing up rather than out, and throwing up the little bit of food they're able to get down. 

I hate EB more now than I ever did before.  When Leah was here my mind, heart and emotions were all on her ...... it was just like "Ok, this is her life, this is our life, we have to deal with this and keep her happy".  So I didn't really have the time or energy to really hate the why behind it all. 

But now that I do ....... I hate it ....... I really hate it.

Alright, this turned into a lot more than just a prayer request.

And as always ........ please remember to pray for little Tripp.  He had to have a longer trach put in due to blistering in his throat around the trach. 

Junctional EB ....... if you were a human being I would've beaten you to a pulp a long time ago - and then ripped your beating heart out of your chest and thrown it into a meat grinder. 

Ok .... enough of that. 

And before I forget ............ thank you to everyone who have sent cards, be they either the cards we received just after Leah's passing, or the cards being sent to my parents house.  I haven't had the chance to go pick anything up but my Mom said there is a card from France (!) and a package from Texas.  So whoever you are out there ....... thank you!  I have 2 big butterfly-themed scrapbooks all ready to go for placing everything in.

Checking in

Hi everyone.  Just checking in.

Things are OK here - just trying to put one foot in front of the other to get things done.

All of the urns and pendants for Leah's ashes arrived and I went up to Philly last Friday to have my parents help me with the separating of everything. 

Here is a picture of my pendant:

Although I may want to get another one .... don't even get me started on why.  And we're going to have a get another urn for ourselves.  Sara: you warned me that I'd need a bigger urn and I didn't listen!

I ordered a wall hanging on this picture:

So now I just have to get it put up above the mantle.

Oh and Kellye, who offered to help me with my resume ..... I emailed you (at least I think it was your email address) a couple of days ago and haven't heard anything back.  So if you're still out there and the offer still stands, please email me at MegGehring@gmail.com.

Thank you!!!

And on the same topic- if anyone out there in the Washington DC area would like to hire me .... well, please hire me.  I have a B.A. in Psychology and I worked for the American Red Cross for 2 years prior to becoming a full-time Mommy.  I did data management and I was also a Donor Counselor for the ARC. 

And in other news, I'm thinking of getting a puppy.  Specifically a Cavachon (a Cavalier King Charles Spaniel mixed with a Bichon) or a Cavanese (Cavalier mixed with a Havenese).

They are beyond cute.  Any breeders out there??

Leah's Memory Box & Abbi's Video

The small bookcase in our living room used to store trachs and bandaging supplies ......... now it's still for Leah:

The top shelf holds her memory box, a butterfly candleholder, Precious Moments figurine, and a picture of Leah.

This is her memory box.  The butterfly with the blue wings is a finger puppet that she loved.  The cross is from her Christening cake.  Two of her favorite 'baby binkies' lay on top of a blanket: the blanket I held her in as she passed away.

The Precious Moments figurine is called 'We Are Gods Workmanship'. 

And God raised us up with Christ and seated us with him in the heavenly realms in Christ Jesus, in order that in the coming ages he might show the incomparable riches of his grace, expressed in his kindness to us in Christ Jesus. For it is by grace you have been saved, through faith—and this not from yourselves, it is the gift of God—not by works, so that no one can boast. For we are God's workmanship, created in Christ Jesus to do good works, which God prepared in advance for us to do.

Ephesians 2:6-10

This is a video I found on YouTube about Abbi White-Hulce - the 11 year old girl who passed away from EB just days after Leah passed.

It is extremely hard for me to listen to - but it's worth it to hear the part when Abbi's Mom says Abbi wanted to go live with Jesus because He will 'take her boo-boo's away'.