Tuesday, January 5, 2010

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.


Tracie said...

I just stopped by to check on you. I don't know if you read it the other day, but I told you that Leah, Jonah, and Tripp had changed me. I said I'd wait until another day to tell you why, and I think now is the time.
You see, my daughter has severe eczema. Extreme. One night, after I had been up rubbing her and trying to keep her from scratching her skin off yet again (her feet and hands looked like hamburger meat) for the past 3 nights, I was talking to my husband and telling him that I didn't understand why God could be so cruel. Now, please understand. I am a Christian but my faith had been shattered after the death of my premature son. It was some years ago, but I never truly let it go. I have 4 more chilren, only one didn't/doesn't suffer from eczema. None as bad as my daughter, tho. So, while I was having my pity party and questioning God, my husband said "Baby, you know it could be worse. As bad as this is, you know it could be.".
Well, those words reached my heart. I started looking on the internet for...well, I don't really know what I was looking for. But, somehow, I found Jonah's blog. And through Jonah, I found Little Lady Leah.
And that is when I realized that YES, it could be worse. I hit my knees right then and thanked God that it wasn't worse, as bad as it can be.
I have since checked on you, Jonah, and Tripp nearly every day. And every day, I have prayed.
So, you see, Leah's life changed mine. And I will never, ever, as long as I live forget her. While I am so very sorry that she suffered, I am so thankful for her. Not only did she, Tripp, and Jonah show me that I am actually blessed, they also brought me closer to God. And for that, I am eternally greatful.

Anonymous said...

Bless you heart. Keeping you and your family in my thoughts, praying for strength and comfort to face today's challenges.

A friend in NC

Anonymous said...

You're welcome for the pictures.
Still praying for you every day.

You are such a brave woman.


Hutch & Meg said...

Wow, that was powerful. Praying for you.

Amy O'Connor said...

I admire how strong you seem to be through all of this. I know you expected this to happen at some point, but there is still no way to prepare for losing a child. I'm glad you can look to God as a source of comfort knowing that He is now cradling your little Leah. As hard as this time is for you, I am sure you realize that your family has touched the hearts of so many. I have a friend who's little boy was diagnosed with EB a few days after he was born. He's 2 months old (yesterday) and doing okay so far. They don't know exactly what type, but think simplex and definitely is not dystrophic. I ran across Leah, Jonah, and Tripp's blogs about 2 weeks before his birth and I think it was truly heaven sent. While no one else knew what was going on with little Alex, I knew right away. I feel that already knowing a little about EB I have been someone my friend can talk to about it and I can at least understand what it is when she talks about it. Thank you for sharing your and Leah's life with all of us. You have touched way more people than you know.


Katie said...

My heart is with you as you start down a whole new journey.


Amy said...

I continue to pray for you and your family.

Sara said...

I just wanted to tell you that I hope you know the heavens are being filled with weeping for your family. I just sat here and for the...what seems like the umpteenth time...asked God what his plan was in all of this? Why the babies?

I have to believe the have a mighty special assignment...nontheless it makes my heart ache.

No words fill the void, but I just wanted you to know I am praying for your journey ahead and somewhere out there in blogland another sister in Christ loves you.

Sarah said...

I'm so sorry for your loss. I have said a special prayer for you tonight.

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