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'. 

Missing Leah

Yesterday Leah would have been 11 months old.

I think for a long time to come the 10th and 31st of every month is going to be tough.  I've been starting to just plain miss her a lot over the past few days.  We have her ashes - but still no pendant or the urn we ordered special.  I've had her ashes on my bedside table for the past 2 nights. 

Her crib had stayed pretty much untouched from the last time she slept in it but this morning I decided to go through it and do some laundry.   I left some of her shirts and blankets 'dirty' - because they still smell like her.

But a member of the extended family has offered to make a memory quilt out of some of Leah's blankets - so it gives me incentive to start going through them and picking out what I'd like to be in the quilt.  I'd love to make it myself but I have 0 idea how to do it.  I'm not very domestic like that. And the idea of sending the blankets out of the house into someone elses possession for awhile makes me nervous - but I know I'll love the quilt once it's done. 

Last week, Patrice emailed my Mother saying some wonderful people were asking about where to send sympathy cards to us.  Patrice was kind enough to offer their P.O. box as a place for people to send cards - but I didn't want to trouble them with having to pay to send them along to us - so my parents offered to have any cards or notes of condolences go to their house in Philly. I made a gadget on the side panel of the blog with the address but it is:

The Turnquists

2853 Shipley Road

Philadelphia PA 19152

I will be back and forth to Philly on a regular basis for awhile, and/or my parents will be coming here to visit as well - so I will be sure to get them soon.

I want to get some kind of a scrapbook together so I can print up and gather all the wonderful encouraging comments we've gotten, along with all cards. I'm not becoming a 'scrapbooker' in any sense - I'll just find a photo album with a butterfly theme and place everything in there. Like I said: not domestic like that.

Speaking of photos though ............. for everyone who misses seeing Leah's sweet face on here, this is one of my favorites from Christmas. Christmas was NOT a good day for us. Leah wasn't eating and was not happy. This was after we put the NG tube down and she coughed it up - and then we tried to put it back down unsuccessfully because her throat was so swollen. None of us were in good spirits so Leah and I cuddled up on her big pillow for a rest:

My Mom had been saying for months how much Leah looked like me and I guess until I saw this picture I didn't really see it for myself.

My poor little cupcake - looking at more recent pictures remind me just how bad her skin was getting toward the end - and makes me more thankful that her pain was relieved.

As for me; my pain is still present but I'm trying to *slowly* get back into the 'real world'. I need to work on my resume to start seriously looking for a job. I am not ready to go back to work now, but with the job market as it is, I know I need to at least start the process sooner rather than later. I am also *slowly* working on a book about Leah, her life and the lessons she taught me during her short time with me.

Jeff is going back to work tomorrow ........... but his schedule has always been very flexible to allow for our special situation so I'm sure it will continue to be so as we move forward in this new season of life.

Hanging in there

Hi everyone.  Sorry I haven't posted anything for awhile.  Apparently I've been making some people worry by being invisible on here. 

We're doing OK.  We are just trying to stay busy - getting the house organized and clean. 

I think Leah's ashes will be available for us to go and get today.  My pendant and her urn are not here yet but I don't care - it'll be so nice to have part of her here again, close to me. 

I know a lot of people are still worried about us --- and I don't know how to make everyone understand how we feel.  I know that to the outsider, the situation is: they lost their 10 month old child.  But to us it's: our 10 month old daughter who was in enormous pain, is finally pain free.  She will never feel the pain of her skin blistering at the slightest touch or pressure.  Her teeth will never cause her pain again.  She can breathe freely without an uncomfortable tube in her throat. 

And yes, part of our pain is that: our daughter is gone - but the fact that she is happy and pain free trumps all of that. 

Yes, I want to hold her again ........... but I'd be worried about hurting her.

Yes, I want to see her again ............ but my heart would be breaking to see her in pain.

And I know someday I will hold her and see her again -- and she will be completely happy, and she'll have so many things to show me and tell me.  And I can wait for that day - and rest assured that she is in good hands until then. 

So yes, it is hard --- hard for me, hard for Jeff --- but Leah is enjoying unimaginable rewards in Heaven right now -- and that's all that matters.  As I wrote before, yes my heart is broken, yes I am devastated - but I - Don't - Care. Every single thing I've done since I found out I was pregnant with Leah has been for Leah.  So how can I feel horrible when she is the happiest she's ever been?  She wouldn't want me to stay in bed, crying for her.  I didn't do that when this 'special' baby was given to me by God.  And believe me, I didn't have the foggiest idea how to care for her - and I was terrified. 

I stayed right by her side, learning all I could from her, finding out how to take the very best care of her - and now she'll stay right by my side - helping me to continue on and live to honor her and God. 

And I know if your heart isn't filled with faith then it seems like all this is just 'how I get through the day'.  But it is the truth.  I know it is.

Pastor Tom stopped by the house yesterday to talk and pray with us and he talked about how many peoples lives Leah touched in just 10 short months.  And it's true - some people live for decades and don't make any impact.  Leah couldn't walk or talk and still changed the lives of countless people.  She made people grateful for the blessings of good health for themselves and healthy children, and thankful for the small things in life that most take for granted.  I know that a lot of people read about Leah's passing and went and hugged their own children - with a realization that they need to appreciate and love them more - and that makes me smile.

Leah always had the best disposition.  When she cried, she'd calm herself down in seconds.  When she fussed, it wasn't for long.  When she was in a lot of pain, she would just sit quietly - like she knew that this pain was just temporary - and that soon she'd be relieved of it all and become the angel she was born to be. 

All of these things make her passing ...... well, not OK ........ but bearable, I guess is a good word.  As a mother I miss her terribly, but as her mother I am very proud of her life, struggle, and the impact she made in her very short time here.  I'm honored to have been chosen as her mother and am proud to have her as my guardian angel now. 

Leah's Online Memorial

This is the memorial Chris from EB Friends made for Leah - I know not a lot of you folks out there have access to EB Friends so Chris was kind enough to give me the html code for it - so here it is:

Thank you again Chris - it's lovely

♥♥♥♥♥♥ WE LOVE YOU LEAH! ♥♥♥♥♥♥♥♥♥♥♥ WE LOVE YOU LEAH! ♥♥♥♥♥♥♥♥♥♥♥ WE LOVE YOU LEAH! ♥♥♥♥♥♥♥♥♥♥♥ WE LOVE YOU LEAH! ♥♥♥♥♥♥♥♥♥♥♥ WE LOVE YOU LEAH! ♥♥♥♥♥♥♥♥♥♥♥ WE LOVE YOU LEAH! ♥♥♥♥♥

A gift from above
Revealing life's miracle

Now flying back home.

Days 4 (Yesterday) and 5 (Today)

Well, last night we went out to dinner - just to get out of the house and do something.  A Babies R Us store was right across the street so we decided to return some things while we were out.  There weren't any babies in the store, thank God - but the woman behind the returns counter did ask why we were returning so much stuff.  Ugh ........ don't they tell their employees to not ask that kind of thing?  All I said was "Unnecessary" - which could have been either an answer to her question or a commentary on her rudeness for asking.   

My parents are on their way down to Maryland now to help us out with some of the funeral home stuff.   Leahs body is being picked up from the hospital this morning to be taken to the funeral home.  But before she is taken to the crematorium, someone must identify her.  I said I could and would do it - but everyone else seems to think I should not be the one to do it.  So my parents will be there to either do it for me, or hold my hand while we all do it together - we'll see how it goes.  I know she won't look like she did the morning she passed - but she is still my daughter and I will always be her mother - and if anyone should be the last to look at her - it's me.  I know she'll be hard to look at - but I've been looking at hard-to-look-at things for almost 11 months.  Open wounds, bloody wounds, blood-tinged trach secretions, her crying face because of pain, her tears as I try to soak a bandage off of her ........ And now I know that what she looks like is just her shell - the shell that awful, hellish, damned-able EB took.  The real Leah is in my heart and flying around heaven with her pink and purple butterfly wings - making friends and spreading joy - and doesn't even remember or know what EB is.   

Throughout this whole thing, including Leah's life: I always tried to think about how things could always be worse.  Case in point:  I was online last night looking for little angel butterfly things to put with all our Leah memorial stuff and I found  this website.  This poor family had a perfectly healthy and normal 9 month old baby girl, Hannah, that they put into a daycare that was being run by an actual criminal - though of course the parents did not know that.  The daycare worker/fraud smothered their child to death.

That has to be worse than what I am going through - right?  To know that your childs' death was absolutely avoidable - and that a choice you made in a daycare provider ultimately caused their death?   Or maybe it is worse to go through what we did: to know your child's odds of making it to their 1st birthday are not in their favor and that everyday may be their last.  I don't know.

Of course, in the end God is in charge and will take you when He wants you. 

With Leah I know He gave her to us because no one else could've cared for her like we did.  And finally, last week He knew her little body had had enough - and it was His turn to carry her and love her with a love even stronger than mine. 

But what must Hannah's parents think?  They had plans for her ...... going to school, going to college, getting married, having babies of her own ........ and then it's all gone - and for no reason.  We never had any of those plans for Leah.  We knew in our hearts that she would not be with us for long.  I never let Leah know that ...... to make her smile and laugh I used to tell her how she'd grow up and become a dermatologist so that when whiney teenagers came into her office complaining about how acne is ruining their lives she could slap them across the face and tell them Cher in Moonstruck-style: 'Snap out of it!'. 

I don't understand any of it ........ EB, babies dying, parents identifying the body of their child, cremation urns small enough for a childs remains ........ but it is not my place to understand .............

Trust in the Lord with all your heart,

And lean not on your own understanding;

In all your ways acknowledge Him,

And He shall direct your paths.

Here are some sweet things a 16 year old girl named Stormy made for me:

Thank you Stormy ....... I love them.

Day 3

Hi everyone.  Thanks again for all the comments - they really help to remind us just how many people were touched by Leah's smile and how many prayers are coming in to help us through this. 

I don't know what will happen in the months to come but for now we're hanging in there.  I have a feeling right now it's just a numb "She's at peace" feeling and in a few weeks I'll fall apart because "My daughter is gone". I think when a parent loses their child who had been in pain - it's a lot different from a parent losing a perfectly healthy baby.  There's a peace knowing that they are finally without pain.  Leah's skin is now perfect - her eyes will never get abrasions again - her beautiful little finger and toe nails have grown back - she has no trach and is making beautiful sounds that I never got to hear her make; but she's making the angels smile with those sounds.

When you spend 10+ months caring for a sick baby you become so selfless that you don't care about anything other than their comfort.  So right now I don't care that my heart is broken into a billion pieces.  And not one of those billion pieces could possibly muster up enough emotion to make me feel anything. 

With all her wound care supplies - the huge thing that reminds me of what took her from me.  The selfish angry part of me wants to take every piece of gauze and every box of supplies and build a huge bonfire on the front lawn and scream 'F(#$ you EB!' at the top of my lungs.  But the selfless Leah's Mommy part of me calmly boxed up 20+ packages of supplies and went through them without a single tear labeling different ones saying: "This is for Jonah ...... this is for Tripp ..... this is for dEBra".

We boxed up some of her toys, clothes and books yesterday - and I amazingly didn't fall apart - though I wanted to.  I'm almost too drained to fall apart.   I put things to the side that she really loved - and we're going to make the mantle for Leah - with toys, pictures, and eventually, her urn. 

My sister drove down yesterday to deliver my Hannah back to me.  Hannah is my cat.  I've had her since May of 2005.  Back in June when we didn't know what was causing Leah's congestion and mucous - my sister took her to stay at her house with her other cats.  So it's nice to have her back in the house - though it is strange to have someone to talk to again that you know won't answer you.  Hannah's a cuddle bug too.  She's right back to doing what she used to do here.  She lounges on the couch, cuddles, eats, and then crawls under the covers at night and sleeps right in between Jeff and I. 

A wonderful woman named Samantha sent this to me:

Thank you Samantha - it's a beautiful photo.

I have some Christmas pictures of Leah to post but I don't think I can put them up yet.  I literally just had one up, staring at it and then deleted it.  Christmas was the day everything fell apart - she stopped eating and we knew a trip to the hospital was in our future. 

Day 2

What my Leah is doing today:

Thanks everyone for all the messages and comments.  I had no idea how many people had fallen in love with Leah over the past few months.

We're doing ok - I haven't fallen apart today .... yet.  I'll try to keep everyone updated on everything but for now I don't think we will have any funeral.  We may have a memorial service at some point - perhaps on what would have been Leah's 1st birthday.  We really don't know.  We haven't even called the funeral home yet but we know we will have Leah cremated so we can keep a part of her close to us at all times.  I've already found a butterfly cremation pendant that I can wear all the time next to my heart.

Leah Has Her Wings

I know most people have found out by now in various ways but, yesterday morning around 9:45 my beautiful little baby Leah got her much earned butterfly wings. 

I'll try to write more later about everything, including how we are holding up (which for right now is as well as could be expected). 

We still don't really know what happened.  Somewhere around 5:30 AM her heart stopped and she stopped breathing - she was resuscitated and sent to the PICU.  From there it all went down hill.  She was given blood, epinephrine, steroids ............ nothing was helping.  Around 9:30 the nurse couldn't get a blood pressure on her and we knew it was time to stop.  The Leah that was laying on that table was not MY Leah.  It looked nothing like her - we knew the real Leah was already gone.  She was given 2 doses of morphine to ensure she was pain-free. 

So please know that she was not on an uncomfortable hospital bed with strangers around her pumping foreign things into her little body during her last minutes.  We had them take the ventilator off and disconnect the IVs and she was placed in my arms.  My little fighter stayed with me for a few minutes - battling until the very end.  I just rocked her and told her: "No more pain, no more blood, no more hospitals, no more EB".  All I ever wanted for her was to be pain free and happy - and this is the only way that could've happened.  I know she's in heaven - EB free and beautifully perfect.  I know all my grandmothers and great-grandmothers are passing her around, loving her.  I know she's smiling that Leah smile with those big blue eyes.  She will never be alone and will never be in pain again.  I know she'll always be with me, watching over me - and I know I will see her again some day and I'll be able to hug her as I never could here. 

Golden slumbers fill your eyes

Smiles awake you when you rise

Sleep pretty darling do not cry

And I will sing a lullaby