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Sunday, December 19, 2010

Happy Holiday's!

I didn't get around to Christmas Cards this year or getting a family Christmas photo I made our own E-Christmas Card to send to family and friends!

We hope you and your families have a very Merry Christmas and a Happy New Year!!

Wednesday, December 15, 2010

EB on TV

There will be a special on TLC tonight about EB.  It's called 'My Skin is Killing Me' and will feature 5 year old Payton, who is the 13th patient to undergo a bone marrow transplant in the hopes of curing his EB.

It is on today, December 15th at 8pm (est)

You can read about it on TLC's web site here

Monday, December 6, 2010

Happy Birthday Garrett!!!

Hard to believe our baby would be 6 years old today?!?  Time sure does go by fast....I often wonder who he'd look like today; more like Sami or Summer.  My guess is Summer since she looks like Joe more than me and Garrett looked a lot like Joe at birth.   He has soooo many friends up in Heaven now.  It's so sad to think about how many lives have been cut short by EB just in the past 6 years....too many that is for sure.

It was a pretty normal day here (other than the weather- it was in the 30's this morning and 50's most the day and tonight we are under another freeze warning!!)

I took Summer to school, then picked Summer up; then got Sami a couple of hours later.  Did laundry, the dishes, tried to take a short nap...emphasizes on TRIED.

For dinner I made the usual spaghetti (Sami's favorite) and cheesecake for dessert:-)

The girls got their gift "from" Garrett...not sure how long we'll continue to be able to convince them its from Garrett...Sami keeps wanting to know how he can send presents from Heaven... but they all got their much wanted Zhu Zhu pet.  The cats think those things are GREAT!!!  (the girls do too!)

 After the gift opening, as tradition, we built a gingerbread village this evening.  The nice part about a village, you get 5 smaller building vs 1 big one, so everyone has a building to decorate = LESS FIGHTING!!

Here are some pictures of the final product.

Then it was clean up time and bed time:)

I'll probably jinx myself since there is still 1 hr and 10 minutes left for today but i'd have to say this was the (best) easiest birthday so far....maybe it was because it as a typical day around here and I didn't have much time to really think about things?  Maybe its because we found out last month that the baby we are expecting this spring is a boy and maybe someday we will get to celebrate his birthday WITH him?  We are hopeful at least...

 I wasn't sure which song lyric would be best for today.....until I was waiting in the car for Sami to get out of school and this song came on the radio.  I first heard it over 12 years ago shortly after a co-worker was killed by a drunk driver leaving behind a fiance and 9 month old daughter.  It really seem to fit their situation at the time.  But works for anyone with a loved one in Heaven...

"Holes in the Floor of Heaven"
~By Steve Wariner

One day shy of eight years old
Grandma passed away
I was a broken hearted little boy,
blowing out that birthday cake

How I cried when the sky let go

with a cold and lonesome rain
Momma smiled said don't be sad child
Grandma's watchin you today

'Cause there's holes in the floor of Heaven

and her tears are pourin' down
that's how you know she's watchin'
wishin' she could be here now
And sometimes if you're lonely
just remember she can see
there's holes in the floor of Heaven
and she's watchin' over you and me

Seasons come and seasons go

nothin' stays the same
I grew up fell in love
met a girl who took my name

Year by year we made a life

in this sleepy little town
I thought we'd grow old together
Lord I sure do miss her now

But there's holes in the floor of Heaven

and her tears are pourin' down
that's how you know she's watchin'
wishin' she could be here now
and sometimes when I'm lonely
I remember she can see
there's holes in the floor of Heaven
and she's watchin' over you and me

Well my little girl is 23

I walk her down the aisle
it's a shame her mom can't be here now
to see her lovely smile

They throw the rice

I catch her eye
as the rain starts comin' down
she takes my hand says daddy don't be sad 'cause
I know momma's watchin' now

And there's holes in the floor of Heaven

and her tears are pourin down
that's how you know she's watchin'
wishin' she could be here now
and sometimes when I'm lonely
I remember she can see
there's holes in the floor of Heaven
and she's watchin' over you and me

Watchin' over you and me

Watchin' over you and me
Watchin' over you and me

Friday, November 26, 2010

16 years....

In honor of a life changing event that occurred on Black Friday 1994, I offer you the lyrics to a song on the sound track of my life during that time.

"The Rose"

Some say love, it is a river
That drowns the tender reed
Some say love, it is a razor
That leaves your soul to bleed
Some say love, it is a hunger
An endless aching need
I say love, it is a flower
And you, its only seed

It's the heart, afraid of breaking
That never learns to dance
It's the dream, afraid of waking
That never takes the chance
It's the one who won't be taken
Who cannot seem to give
And the soul, afraid of dying
That never learns to live

When the night has been too lonely
And the road has been too long
And you think that love is only
for the lucky and the strong
Just remember in the winter
Far beneath the bitter snow
Lies the seed
That with the sun's love, in the spring
Becomes the rose"
~Bette Midler

Sunday, November 7, 2010

Grace turns 3!!

Our little Gracie is now 3!!!!

Here is a picture of Grace when she was just 6 days old!!

And here she is today!

Here are some pictures we had of her little party here at home.  

Gracie Facts:

Weight: about 35 pounds

Height: about 40" (yes she is tall)

Favorite Foods: (and about the only things she'll eat): cheese, apples, ice cream, chip, and frozen corn

Favorite TV show: Spongebob Square Pants
Favorite Disney Princess:  Ariel from the Little Mermaid

Favorite Color: Purple
And just for fun, here are all 3 girls at age 3!

Monday, November 1, 2010

Halloween 2010

here are some pictures from Halloween

at Summer's party at pre-K

 trick or treating on Halloween
 (cheer leader, cheer leader and a bride)

 Grace's "Ariel" pumpkin

 Sami's "Cinderella" pumpkin

 Summer's "Tinker Bell" Pumpkin

 pumpkin guts anyone??

 Popcorn wondering what pumpkin's taste like

Grace enjoying treats at Summer' school

Hope everyone had a Happy Halloween!!!

Sunday, October 24, 2010

EB Awareness Week

Thanks to Tripp's mom who allowed people to borrow this from her blog:)

Thursday, October 21, 2010

My Thoughts.....

Yesterday, thanks to modern technology, I was able to attend the memorial service for a sweet little baby named Bella.  Sadly after a brave 16 month fight she lost her battle to EB due to complications from a bone marrow transplant.  I, along with 600+ people from around the world tuned into her memorial service on-line thanks for a wonderful site called Ustream.  My brother was the one who told me about this site and I passed the info along to Bella's parents and thankfully it all worked out!  It was a honor to be able to be apart of such a beautiful service.  Sadly this wasn't my first or even second EB Funeral I have been honored to was my 5th...and until there is a cure for EB, I know it won't be my last. 

I had forgotten how much planning goes into planning a funeral or memorial service; about as much planning as it takes to plan a wedding!  Flowers, what to wear, where to have the service, where to have a reception afterward, the food, who will take part in the service, etc...  Except instead of celebrating a new life together, you are celebrating one that was cut way too short way too soon.   It can be a bitter sweet moment.  But the Ringgold's did a WONDERFUL job with every aspect of the service! 

Now comes the tough part for the family, to pack up their things and head back home and try to get back to a life without Bella.   I know how hard that will be; its been almost 6 year for us and there are some days I still wonder how we made it this far.  I wish I had some words of wisdom or comfort to make that transition easier;  but the process is different for every family and sometimes you just have to figure things out along the way, just taking one day at a time.  Hopefully they will know that the entire EB family will still be here to support them along the way and they will always be members of the (ever expanding) EB community!   

So Tim, Ang and Ali, thank you for sharing Bella's life and her journey though it with the world!  She, like all EB babies, touched (and changed) so many lives!

I will leave you all with one of my favorite quotes appropriate for this situation:

"When someone you love becomes a memory, that memory becomes a treasure"

~author unknown

Tuesday, October 12, 2010

Rest in Peace Bella

Heaven has a new butterfly angel...Bella Ringgold, age 1 year 4 months and 15 days, got her wings yesterday after braving enduring a bone marrow transplant to try and save her life.

You can read her journey here