Garrett's House is dedicated to the support, advice, and education of a genetic skin condition called Epidermolysis Bullosa or EB for short. Currently there is no cure or effective treatment for EB. Please take a moment to learn about EB, and how you can support others who struggle with EB everyday. Garrett's House also honors the memory of those who lost their brave fight against EB. Please check out the Garden of Angel to learn more about the precious butterfly angels.

April 14, 2010

Garrett's Story

In Loving Memory....................

Hello everyone my name is Garrett. I was born on December 6, 2004 at 12:32pm and became an EB angel on December 18, 2004 at 8:12pm. I was born with a genetic skin condition called Epidermolysis Bullosa (EB) Simplex Dowling Meara. Normally the simplex form of EB is not fatal, but I contracted two infections while in the hospital, Pseudomonas and MRSA. They entered into my blood stream and I became septic. It also caused my lungs to fill with fluid and one collapsed. I died of heart and respiratory failure when I was just 12 days old. 

My mommy has EB too.

I also have 3 sisters, Sami, Summer and Grace.  Sami has EB too.  You can read her story here.  I also have another sibling here in Heaven with me, Jesse.  We love to run around and play together chasing butterflies and my other friends.

Please visit my friends and me in the Garden of Angels where EB Angel’s will be remembered forever!

Below is a summary of what my family does each year on my birthday.

5 years later 

This year as a hard one.  5 years just seems so long ago.  I didn't work as usual and we just spent the day around the house.  In the evening we had spaghetti for dinner and then made a gingerbread village this year!  Everyone got to make a part of the village so there was very little fighting about who go to do what:)  After, we had cheesecake and the girls got to open their present from Garrett.   

I think part of the reason this year was harder is because Summer is 4 and she looked a lot like Garrett when she was born so I often wonder if that's how he would look today.  I also have friends who had a baby around the same time Garrett was born and their children turned 5 as well and are getting ready to start school.  We should be doing the same thing!  Just a difficult and emotional day all around.

4 years later     

Much to my surprise this was the best birthday in the past four year.  Maybe it was because we were busy  most of the day and didn't have time to think about it.  Sami's Daisy Scout troop was in our city's Christmas parade, so we were busy in the morning with that.  Did some things around the house in the afternoon and then had take-out for dinner (no one felt like cooking).  I took the day and night off from work, so it was nice to have a Saturday night off for once!

We built a house this year out of Rice Krispie's instead of gingerbread!  It was easier and more fun.  Garrett "sent" Sami the game Candyland (she wanted to know how he knew she always wanted that game! LOL). Summer got Dora and Diego hot wheels cars and Grace got a new teething toy.  They enjoyed make the house and eating it as well.  

12/6/2007: The Gingerbread Train... 
We decided to build a gingerbread train this year instead of a house; just something different.  The girls had a good time helping, or more like making a messy and eating frosting and candy!  We had spaghetti for dinner (Sami’s favorite) and after wards make the train, ate cheesecake and opened the gift’s Garrett ‘sent’ from Heaven for the girls.  Sami got a Cinderella Tea Set and Summer got a little tractor, wagon, farmer and animal play set.

Before I go any further, I want to warn you that this post is going to be heartbreakingly honest and you probably will need Kleenex by the time you are done.

But anyways, his birthday was a good day.  We had planned to go see the shuttle launch, but the launch was delayed.  I have yet to see on go up since living here in Florida (we are only an hour from the coast).  So maybe some day I’ll see one launch!

Thank you to those who sent letter, emails and messages on the 6th and the 18th.  I made it a rule last year not to answer emails or phone calls on those days and to wait till after the 18th to talk about the days.  Mostly to keep those days how WE want them, not how other people want them to be for us.  So that is why no one has heard from me till now.

Garrett was with us for 12 days so it would seem like those 12 days would be like the 12 days of Christmas.  And in a way there were, when he was alive, but now they aren’t so happy.  As soon as his Birthday comes around, we know that in 12 days his Angel day will be here.  I have to be honest as and say this year was the hardest year yet, even harder than the first year.  This year is all seemed more real.  There were lots of babies born around the same time Garrett was and now they are all turning 3…  I had Joe get one of the tubs in the attic down that had his clothes in it to find a ‘First Christmas Outfit’ for Grace and when I opened the tub, right on top were some of Garrett’s clothes…the tags still attached.  Just another reminder than he never got to wear them and he never will.  After the girls went to bed that night we opened the cards and gifts family and friends sent in memory of Garrett.  Almost all of them mention he would have been 3 and to see it in writing made it all seem the more real and so much more sad and heartbreaking.

We really didn’t do much on his Angel day.  Sami still doesn’t get the concept of death, so it’s just easier for now if we don’t talk about it too much.  Maybe when the girls are older we’ll do something more.  But right now it’s just a reminder of what was and what will never be.  Another reminder that it’s been 3 years since I have seen or spoken to my mother and a couple of other people in my life who walked away and never looked back after Garrett died; another reminder than if it wasn’t for Garrett’s death, Summer and Grace wouldn’t be here today.  We probably would have had another child, but it wouldn’t be Summer or Grace.  I am thankful to have them and that they are healthy, but I’d take a dozen kids with EB just to have Garrett back again.

My mission I set out on after Garrett died, is still the same; to help the families of new EB babies when they come into this world and to help the families of EB Angels when they leave this world.  There have been lots of new babies in the past few years, and some angel’s as well.  I hope have been able to give some hope to some of those families and that I am able to continue doing that.
12/6/06- Two years later...

Hard to believe my little Angel would have been 2 years old today....How time flies.  This year we weren't able to do as many things as we did last year.  But it was still nice.  After Joe got home from work we had dinner and then made the gingerbread house.  Sami wanted to make the icing pink, so it was a pink house!  After dinner we decorated Garrett's little Christmas tree and Sami got to open a special present that Garrett 'sent' her from Heaven.

Garrett's Angel Day- 2 years later

We didn't really do too much today.  I think today was harder than it was last year or even two years ago.  I took the night off work.  During the day, the girls and I took Christmas Cookie's to Joe's office.  We just had dinner together and stayed in for the night.

A few people emailed to say they were thinking of us today.  But I was surprised at who didn't call/email.  Those that did email/call, I thank you.  It means so much to me that others
One year later.... 12/06/2005

They say as you get older, time goes by faster. Personally I think that's true. I am not sure what is sadder, that Garrett would have been 1-year old on the 6th, or the fact that he's been gone for a year now. Even now, there are times it seems like it all happened just yesterday, and there are times it seems like it was all dream.

This past year has been a roller coaster of sorts. A few months after Garrett's death, we discovered through medical records, that his death could have been prevent, had the doctors not made some of the decisions they made a few days prior. We have looked into legal action against the doctors involved, but sadly Florida law doesn't really provide much remedy for us. Yes Garrett has EB and that didn't help things, but he died from an infection he got in the hospital that anyone could get. It was treatable if the doctors had acted quickly enough. We also discovered they "failed" to tell us somethings about Garrett's condition on that last day. So his death was not solely caused by him having EB, but more so by the doctors mistakes.

In addition, Joe changed job this past year (for the better); Sami faced (and made it through) major spinal surgery (though the full outcome will not be known for year); I am currently going through a difficult pregnancy which makes the furture even more uncertain; we have grown closer to some friends and family, but at the same time "lost" some family and friends, one of which being my mother. I can understand people not knowing what to say, so they say nothing at all, but I'd never imagine my mom would be one for those people. We have also made some life long friends all because of what happened to Garrett. Most have lost children of their own, some even to EB.

Part of my wants to just get this "anniversary" over with and part of my wants it never wants this "anniversary" to arrive. This time of year is already eventful and emotional for us. Joe's birthday is December 9th. It is also our wedding anniversary. This year we celebrated our 5th year together. Which in itself is hard to believe!

Garrett's Birthday

We wanted to do something on Garrett's birthday each year to celebrate his life. So we took the day off from work, spent it together. First we took Sami to the park to fly a kite and play on the play ground.  Then we came home and  baked and decorated Christmas cookies and then we made a gingerbread house.  It is something I have never done, but always wanted to do.  That evening we had dinner together and decorated the Christmas tree. It will be something we can do every year no matter the weather or where we are living at the time.  That day went better than we expected.  And what meant the most, is that other remember it was Garrett's special day.  I received many emails from friends letting me know they remembered.  And that meant more than they'll ever know.

Garrett's Angel Day

A couple of years ago there was a little baby who lost her fight to EB.  I never met her or even spoke to her family, but she shared the same birthday as my mom, so I would always think of her on that day.  I emailed this little girls mom once (we have since become friends) and told her this very thing.  She was so happy and so grateful that I would always think of her little angel each year.  I never really understood how much that meant to her till I faced this same issue myself.  As Garrett's birthday and Angel Day (the date of his death) came closer, I wasn't scared of those days specifically, but more scared that no one else would remember.  I was scared that amongst everyone's busy lives that those days would come and go and no one would remember.  But people did remember.  They remembered both days.  I did cry a lot that day, but I did have some comfort knowing others were grieving that day for Garrett too.

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