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Sunday, December 27, 2009

A weekend of some first's

Over this past weekend I drove to another state by myself for the first time which took 5 1/2 hours and that was the longest I have ever driven!  It was also the first time I showed up at the WRONG funeral home for a funeral:(  It wasn't however, the first time I had been to a funeral for someone who had EB; it wasn't even the 2nd time.  Counting Garrett's that was my 4th EB funeral.  A little boy named Wesley lost his battle against Junctional EB on Christmas Eve morning.  He was only 6 years old.  But he was a brave little boy who always had a smile on his face:)  He was a HUGE fan of superman and I know that he is flying high up in the sky just like superman looking out for all of us!


R.I.P. little guy!

Friday, December 18, 2009

Hard to believe its been 5 years...



Remembering today and always...






Garrett Denslaw

December 6, 2004~ December 18, 2004

due to complications of Epidermolysis Bullosa Simplex- Dowling Meara

















“It has been said, 'time heals all wounds.' I do not agree. The wounds remain. In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens, but it is never gone.” ~Rose F. Kennedy



Tuesday, December 15, 2009

Our Christmas Card

While I did mail out some Christmas Cards this year, not near as many as I would have liked too.  We are blessed with so many family and friends and as much as we love them all; it would cost a small fortune to mail cards to everyone!

So here you go, our family Christmas Cards for this year


Garrett's Birthday Celebration








Building our Gingerbread Village to celebrates Garrett's birthday.  Afterward we has strawberry cheesecake:)

 

  



  

Happy Grace!






 


Grace's House




 


mommy's house





Sami's house




 


Summer's house








 

the entire village



Tuesday, December 1, 2009

Wake me up when December Ends...............

Yes, I know the title of the song is actually 'Wake Me Up When September Ends', but you could replace September with December and you can't really tell!

Today is the first day of December and the start of a very difficult month for me.  December is full of birthday's, holiday's, anniversaries and other similar events.  Some of them good, some not so good.

These are in no particular order:

December 30th- my nieces birthday!  She'll be 19 which makes me feel old since I have known here since she was 8!

December 5th is my mother in laws birthday.


December 10th marks 15 years of meeting one my good friends. Meeting them changed my life in ways I can't even put into words.  The decisions, choices and events that followed in the years to come made me who I am today and I will be forever great full.  However, as the years go by, things change, people change and friendships change...sometimes not always for the better.

December 11th is the 11th year anniversary of Joe and I's first (blind) date- which consisted of dinner (at Chilli's) and a movie (the first Star Trek Next Generation Movie).

December 9th is Joe's birthday and our wedding anniversary.  It'll be 9 years this year!  It was a cold snowy day that day and our honeymoon was one never to be forgotten.  We drove through a blizzard to get to Chicago and got into two car accidents and did $3000 damage to my brand new car. (what a way to start a marriage huh?)  We kept going on, but most of Chicago was shut down due to the weather. We should have gone with plan A and went to Jamaica!  It would have been warmer and probably cheaper in the long run!

December 25th is of course Christmas.  Christmas, at one time, was my favorite holiday, till 2004 then I just as soon of skipped over the month of December and head right into January. 


December 6th is the day Garrett was born.  One of the happiest and surprising days of my life.  I said he was the best early Christmas present we could get. Sadly that joy only lasted 12 days.

December 18th is the day Garrett died; the worst day of my life. 

December 22nd was the date of his funeral, just 3 days before Christmas.  I still remember his funeral like it was yesterday.  I remember every single person that was there and those that should have been there, but weren't.  I remember the outfit Sami wore as she bounced around the room laughing and singing, not realizing what was going on.  I remember the wonderful service, our good friend Diane did; I remember the music that was played: Go Rest High on the Mountain by Vince Gill and Baby Mine by Bette Midler.

It will be 5 years this year and have a feeling its going to be the hardest year yet.  I have friends with kids the exact same age and seeing them makes me wonder what Garrett would look like today.  I have been tempted to get age progression software to take Garrett's picture and progress it to 5 years, but I have a feeling it will only make the pain worse.

Every year on his birthday we make a ginger bread house. This year I got a ginger bread village with 5 small building- one for each of us so no one has to share and hopefully it'll cut down on the fighting between the girls!

I also never work on that day or the 18th either.  I was tempted this year since his birthday falls on a Sunday and I only work 4am-9am on Sunday's so i would be home most of the day anyways, but I am afraid if I did it this year I might continue to in the years to come and I don't want to break that tradition.  We also give the girls one present and say they are from Garrett.  I know I won't always be able to tell them that, but it works for now.

We don't really do much on the 18th; the girls don't really understand what that day is about.  But I'd like to start a tradition for that day.  Though I am not sure what at this point.  Its a Friday this year so Sami will be at school for most of the day.

I'll leave you with the lyrics for Green Day's song- 'Wake me up when September Ends' which inspired this post.


Wake me up when September End

by Green Day


Summer has come and passed
The innocent can never last
wake me up when September ends

like my fathers come to pass
seven years has gone so fast
wake me up when September ends

here comes the rain again
falling from the stars
drenched in my pain again
becoming who we are

as my memory rests
but never forgets what I lost
wake me up when September ends

summer has come and passed
the innocent can never last
wake me up when September ends

ring out the bells again
like we did when spring began
wake me up when September ends

here comes the rain again
falling from the stars
drenched in my pain again
becoming who we are

as my memory rests
but never forgets what I lost
wake me up when September ends

Summer has come and passed
The innocent can never last
wake me up when September ends

like my father's come to pass
twenty years has gone so fast
wake me up when September ends
wake me up when September ends
wake me up when September ends

Monday, November 30, 2009

Not Me! Monday

In honor of Not Me! Monday,

I most certain did not accidentally lock my purse (with keys and phone inside) in the car along with my 2 year old after a quick trip to the store!  Nope not me!  And I was defiantly not more upset and panicked than she was!  Nope not me!




Sunday, November 29, 2009

EB on TV

The Documentary about Samantha Sheridan that was filmed by TLC in May of 2009 is airing Wednesday December 2nd on The Discovery Health Channel at 9pm ET and again at 12ET. It is called "Truth Be Told" I Have A Child With Special Needs Child.

What busy bees are we...

Its been a LONG week around here.  Due to "Black Friday" I worked 6 days last week! (and 8 days in a row total) Then again today but I am off the next two days.


We didn't do much on Turkey Day, just stayed home, which was a first since I don't remember when.  I had worked till 2am the night before, so I was dragging most of the day.  We did have turkey and most of the trimmings.  And coconut cream pie for dessert:)


Then on Friday much to my surprise Joe got all the Christmas Decorations out of the attic.  I probably should add it was a bribe to get the girls to cooperate during the family picture we had taken earlier in the day.  And they did, so down came the tree and all the tubs of decorations.  Most of which did not go on the tree since they are breakable and many irreplaceable; including the Angel.  So we have shatter proof ornaments on our tree:-)  Though I am sure the kids or cats will find a way to break those.  But here is a picture of our tree.  They never do come out too clear do they?




Then on Saturday the outside got decorated.  Sorry no pictures yet.  Those will be coming soon:)  As well as the kids trees.  I still need to get Garrett's done, not sure when i'll have time to myself to get to that or where to even put it so no hands (or paws) can reach it!



Then today I had some errands to run and took one of the girls with me and had something happen that has never happened in the entire 7+ years I have had kids...but you'll have to wait till tomorrow for my "Not Me! Monday" post to find out which kid and what happened. :P



You will also have to wait till Christmas to see our new family photo, but here are a *few* pictures that came out some what decent:

 

Summer..she finally cracked a smile!


  

Me and mini-me!


  

Sami and Grace...a.k.a Miss I won't smile for any pictures (apparently its genetic)


  

Joe and Summer


 

Sami and Grace checking out the lake...




Well that is all for now.  Be sure to check back on Tuesday for a very honest and real post.



Sunday, November 22, 2009

1998

1998 was a big year for me- both good and bad. 

The year started out bad when a co-worker was hit by a drunk driver while walking her 9 month old daughter.  She died 5 days later.  (RIP Tammy!)  Her daughter would be 12 now....I think of her now and then wondering how she turned out.  That was the first funeral of a close friend or family member I had been too.  Every time I hear "Somewhere over the Rainbow" I think of her. 

During the summer of 1998 I got on an airplane and flew 15 hours around the world to visit my best friend and her husband in Italy! (the song 'leaving on a jet plane had a whole new meaning!)  I traveled with her parents and his parents!  That alone was an experience in itself!  We did a lot of sight seeing, going to Venice, Florance, Pisa, and Rome.  We toured the Vatican (which was under construction at the time), saw the leaning tower of Pisa, took a train (w/o A/C) to Rome; saw the sun set on a Mediterranean sea; watched fire works on the 4th of July on an Air Force base; we climbed a mountain and I vowed to do that again before I turned 30, which unfortunately didn't happen:(  I took lots of pictures and have some wonderful memories.  

Shortly after that I celebrated by 21st birthday.  A group and friends and I went to Red Lobster for dinner and after wards, my only 3 friends old enough to drink took me to a bar for a drink.  I had an amaretto sour.  I thought it was pretty good:-)  We hung out and talked for a while.  I think it was my best birthday every! 

I started my junior year of college that fall and re-kindled a friendship from the past.  That however was short lived and I had premonition that the next guy I met would be the man I marry.  And wouldn't you know, the Tuesday before thanksgiving I got a email from my now husband.  We met on a on-line dating service through one of the local country radio stations.  We emailed for a week or so, then spoke on the phone a few times and then agreed to meet (on a blind date).  We meet for dinner and a movie on December 11th and the rest is history!  So next week Joe and I will have known each other for 11 years and what an 11 years it has been; two states; moving 5 times; 5 pregnancies and many pets later, we are still here!


Here are the lyrics to Somewhere Over the Rainbow

Somewhere over the rainbow
Way up high,
There's a land that I heard of
Once in a lullaby.

Somewhere over the rainbow
Skies are blue,
And the dreams that you dare to dream
Really do come true.

Someday I'll wish upon a star
And wake up where the clouds are far
Behind me.
Where troubles melt like lemon drops
Away above the chimney tops
That's where you'll find me.

Somewhere over the rainbow
Bluebirds fly.
Birds fly over the rainbow.
Why then, oh why can't I?

If happy little bluebirds fly
Beyond the rainbow
Why, oh why can't I?

 

Friday, November 13, 2009

Prayers for Tripp

This little guy has a severe form of EB and needs lots of good thoughts and prayers! 

Thursday, November 12, 2009

Christmas Bows

Butterfly Bows has added their Christmas Collection 2009 so go check it out and order some bows!

Monday, November 9, 2009

Grace: Age 2





Grace turned two last week.


She is 31 pounds and 36 1/2 inches tall.


We had a small celebration for her yesterday since only Papa and Sherry could make it to her party. 



 My attempt at an Elmo Cake




Opening presents with help from Summer













Look Daddy!  Elmo!



What else is in here?







Blowing out her candle






The girls at age 2


Summer @ age 2





Sami @age 2






Grace @ age 2

Which two do you think looks most alike?

Tuesday, November 3, 2009

New EB Necklace

EB cutout silver butterfly & blue topaz necklace


 Brand new to the EB Collection, this necklace combines a cutout matte sterling silver etched butterfly pendant and faceted blue topaz teardrop on an 18" chain. Blue Topaz, the stone of communication, brings the body, mind, and spirit into union with the universe. Co-designed by husband and wife partners Courteney Cox and David Arquette along with Satya Jewelry, the butterfly is the symbol of hope and freedom. This necklace was created to benefit the EB Medical Research Foundation, a charity that is close to both of their hearts. EB is a rare skin disease affecting someone near and dear to both David & Courteney. “We are committed to raising awareness and money to help find a cure for EB so these wonderful children can live a healthy and normal life.”

The Satya Foundation donates 100% of the proceeds from the sale of this necklace to the Epidermolysis Bullosa Medical Research Foundation, aiming to find a cure for a rare childhood skin disease

For More information please click here www.ebkids.org

Sunday, November 1, 2009

Halloween and Pumpkin Carving

Sami as Barbie of Swan Lake







Summer was an Angel...minus the wings and Halo.















Grace was suppose to be a Candy Corn...she REFUSED to wear the costume.










Carving Pumpkins






















































































Monday, October 26, 2009

National EB Awareness Week


 In honor of National EB Awareness week, I would like to pay tribute to all those infants, children and adults who lost their brave battle to EB and are now flying high in the sky with the butterflies!  Below is a list of EB Angels I either know, have talked (or emailed) to their parents, and  came across on line through the years.  The list was MUCH longer than I thought (aprox. 226 names) and it has taken me almost 2 days to write this post!


 In loving memory of......



Braiden B.
Craig W.
Emberly P.
Gabriel V.
Gage M.
Landon S.
Lee L.
Lucy N.
Addison J.
Alex H.
Brandy K.
Brida H.
Bursa
Derek J.
Devin R.
Emma M.
Jacob J.
Jacob L.
James U.
Kara B.
Kaylee
Le Andre S.
Matthew
Megan H.
Mia H.
Owen D.
Ryland B.
Sarah M.
Andrew C.
Angel J.
Anthony M.
Caleb
Caleb E.
Corey C.
Emmaylou C.
Estefania
Grant T.
James L.
Jaylin P.
Justin C.
Kristin
Luis C.
Macey-Kate M.
Max B.
Nathaniel M.
Nichols D.
Robert F.
Sania A.
Xantha M.
Zach O.
Anthony U.
Austin J.
Debbie
Eric H.
Gavin F.
Joseph M.
Kate D.
Kelly D.
Kermitt T.
Maximus B.
Nicholas M.
Noel M.
Tille
Alma E.
Angelica T.
Elliott S.
Erum K.
Ethan
Josh
Justin L.
Kael F.
Kevin K.
Malachi B.
Kurt M.
Margaret O.
Michael T.
Montanna R.
Sadie H.
Taliah
Anthony T.
Courtney A.
Baby Girl R.
Katie
Kayla
Rebecca S.
Andrew A.
Andy B.
Baby Boy H.
Brittany W.
Eduardo P.
Brittany H.
Katia S.
Kobe T.
Laney H.
Marianda M.
Brittany B.
Daniel S.
Dylan
Emma P.
Jamia F.
Kelly M.
Nyanjau M.
Quentin
Sarah C.
Sophia L.
Thomas S.
Tricia H.
Witt
Aaron F.
Adrain O.
Amber F.
Brogan A.
Donte B.
Ed K.
Baby Girl F.
Jack C.
Justin C.
Kiara F.
Nicholas S.
Olivia H.
Carlos F.
Caylin S.
Kaitlin P.
Kelly D.
Lisa V.
Travis S.
Trevor S.
Kenneth D.
Dana M.
Courntey S.
Crystal G.
Jaslyn
Madeline F.
Mallory H.
Michael S.
Ryan M.
Samantha
Sara N.
Shana
Susie T.
Taylor W.
Tony P.
Coleby M.
Jamie J.
Jennifer J.
Logan B.
Matthew A.
April S.
Cynthia R.
Landon T.
Andrew G.
Gary G.
Adam S.
Alex M.
Matt
Allison S.
Alex Z.
Ben G.
Gus David M.
Susan P.
Tyler J.
Joyce S.
Christine A.
Lauren J.
Ryan M.
Joan B.
Kalie D.
Natalie D.
Paul D.
Chuck A.
Jennifer J.
Baby Boy
Tyshera W.
Adam W.
John R.
Michael H.
Adrian I.
Simon E.
Debra H.
Irene C.
Christina C.
Avin B.
Denise G.
Jeffery G.
Michelle C.
Sean P.
Caroline F.
Mike
Jay
Katie
Kerry W.
Michael W.









Sunday, October 25, 2009

EB Awareness Week

Today marks the first day of National EB Awareness Week!  There will be lots of events happening all over the country this week in honor of it. Check out my web site to learn more about the events.  While we aren't doing anything publicly here, I do have something to share later in the week. 



Friday, October 23, 2009

EB Event: Bingo for Evan

What: Longaberger Bingo for Evan who has Junctional Epidermolysis Bullosa

When: Sunday November 1, 2009
 
Place: Covington Moose Lodge
414 Moose Park Rd
Covington, VA 24426
(540) 962-1042
 
Time: 2:00pm; Door opens at 1:00
 
20 games with lots of door prizes food available
 
This fundraiser is being done to help defray medical cost relating his disease

Wednesday, October 21, 2009

A crazy, crazy day...

Its 11pm and the people across the street are blaring loud Hispanic music.... anyways what a day this was.  This morning Sami and Summer had dentist appointment with a new dentist.  Our old one was almost an hours drive away and didn't accept any dental insurance.  This one day is much closer (10 minutes) and accepts dental insurance.  And he had worked on EB kids in medical school before:)  The girls did fine.  No cavities:)  Sami had x-rays taken and we learned she is missing adult teeth like I am (I am missing 10 adult teeth plus all 4 wisdom teeth- so 14 total)  Sami is just missing 5.  All 4 wisdom teeth which isn't all that bad, but the 5th one is one of the top teeth.  One next to the right front tooth.  We'll just have to wait and see what happens as she loses the rest of her baby teeth and gets her adult teeth.

Later in the day I had a dentist appointment and it went better than usually in terms of the amount of damage my mouth sustained from the cleaning.  Though 11 hours later my mouth still hurts.

On my way to work I had to stop and get more ribbon for my bows.  Tomorrow I will be mailing out my 4th order this week!

At Walmart I saw a lady pushing a large (golden retriever large) black dog around in a shopping cart.  I have seen people with little dogs in the store, but never one this big.  Not sure how no one noticed her bring it in?!? 

Next I went to Michael's to get more bow clips, but they were still out:(

I stopped by McDonalds to get dinner on my way to work.  As I was leaving I saw a complete (end to end) double rainbow:)  It was one of the brightest rainbows I have ever seen in the sky.  Sorry no picture.  Didn't think it was safe to take with picture with my cell phone while driving;)

Once I got to work, I saw a lady putting her purchases in the back of her SUV from the shopping cart she had (key part of story);  Shut the back door, went and got into the drivers side.  5 seconds later, CRASH- CRUNCH, she ran over the cart she forgot to move after she was done with it!!  She wasn't very happy as you can imagine.

Then I went inside put my purse and dinner on my desk, went to punch in and get my signs. However, there were no signs.  I looked high and low for almost an hour for them.  They usually arrive on Wednesdays.  No one knows if they came and it was too late to track them.  So I went home.  That puts me behind for the week and with no baby sitter, I can't go in early tomorrow or Friday.  I tried one person, but she has to work.  If they arrive tomorrow I will be ok.  It will be tough, but I should be done in time.  But if they don't arrive till Friday, then I am screwed.

Hopefully tomorrow is a better day and that I can find more bow clips so I can fill more orders!

Sunday, October 18, 2009

New Bows...

Head on over to Butterfly Bows to check out the 
newest bows they have to offer!

New B

Thursday, October 15, 2009

October 15 is National Pregnancy and Infant Loss Remembrance Day

History of this day:

OFFICIAL WORLDWIDE website of October 15th, Pregnancy and Infant Loss Remembrance Day


October 15th was created to provide support, education and awareness for those who are suffering or may know someone who has suffered a miscarriage, an ectopic pregnancy, a still birth, or the loss of an infant. We hope that we can help you by giving you and all of the other parents, grandparents, siblings, relatives, and friends a special day of remembrance. This special day of Pregnancy and Infant Loss Remembrance is October 15th of every year.

Pregnancy and Infant Loss Remembrance Day is to promote Support, Education and Awareness for grieving parents nationwide (and worldwide).

Too many families grieve in silence, sometimes never coming to terms with their loss. Our goal is to help others relate to our loss, know what to say, do or not say, not do and to help families live with their loss, not "get over" their loss.

In October 1988, President Ronald Reagan Proclaimed
October as National Pregnancy and Infant Loss
Awareness Month. "When a child loses his parent, they
are called an orphan. When a spouse loses her or his
partner, they are called a widow or widower. When
parents lose their child, there isn't a word to describe
them. This month recognizes the loss so many parents
experience across the United States and around the
world. It is also meant to inform and provide resources
for parents who have lost children due to miscarriage,
ectopic pregnancy, molar pregnancy, stillbirths, birth
defects, SIDS, and other causes."
Blue Mountain Arts, www.1.bluemountainarts.com

Robyn Bear, founder of www.october15th.com, and founder of October 15th, Pregnancy and Infant Loss Remembrance Day envisioned a day when all grieving parents could come together and be surrounded by love and support from their friends and families, a day where the community could better understand their pain and learn how to reach out to those grieving. This would be a day to reflect on the loss yet embrace the love. While our babies’ lives where so brief, they were also very meaningful. Yet, there was not a time to talk about them. Our society seemed to forget or perhaps, simply didn't know how to reach out. Since October had been proclaimed "Awareness Month", she chose a day, in the middle of the month to become, "Pregnancy and Infant Loss Remembrance Day".

We are asking everyone in all times zones, worldwide, to join us in a candle lighting ceremony at 7pm on October 15th. For more information, please visit

http://www.october15th.com

Our Mission Statement:

To diligently work with local, state and national leaders to obtain a National Day of Remembrance recognizing the need for community education and awareness when a family loses a child to miscarriage, stillbirth, and/or neonatal death. While promoting the need for openness,
understanding and compassion during a family's time of grief and most importantly, allowing those who wish, to remember these children who we now hold dear.

Goals of Pregnancy and Infant Loss Remembrance Day:

To have information and support available to families who suffer from pregnancy and infant loss, to help them cope.

• To inform and educate the public about pregnancy and infant loss so they can better learn how to respond with
compassion to affected families.

• To enable professionals, physicians, clergy, emergency medical technicians, funeral directors, police officers, public health nurses, and employers, to better serve families if they have special training and better knowledge of pregnancy and infant loss.

• To set aside a day to remember all pregnancies and infants lost in order to heal and be comforted in a time of pain and heartache, and to have hope for the future.
 

 

Wednesday, October 14, 2009

Introducing: Butterfly Bows!

I would like to invite everyone to check out my new business venture!  Butterfly Bows: Handmade and Customized Bows.  I have many colors, styles and themes, including Hannah Montana, High School Musical, and Hello Kitty!  If you looking for a certain color, print, pattern or theme, just let me know and if I can find it I can make it!

I have a giveaway going on now through Saturday night, so head on over and check it out! 

Bows make perfect gifts for birthdays and holidays! (Christmas is just  72 days from today!)


In addition, 10% of the sales from the bows will go to help EB Families!  Check get something cute while helping out a good cause at the same time!

Monday, October 12, 2009

Monday Night Dinner

I think for the first time I am trying a spur of the moment new recipe for dinner!  Surprisingly I had all the ingredients in the house! (that would be first too!)

Easy Chicken & Cheese Enchiladas

1 can of Cream of Chicken Soup
1/2 cup sour cream
1 cup Picante Sauce
2 tsp chili powder
2 cups chopped cooked chicken
1/2 cup shredded Monterey Jack Cheese
6 flour (10") tortillas (warmed)
1 small tomato
1 green onion sliced

1. Stir in soup, sour cream, picante sauce and chili power in a medium bowl

2. stir in 1 cup of the above mixture with the chicken and cheese in a large bowl.

3. Divide up the chicken mixture among the tortillas. Roll up tortilla and place seam side up in a shallow baking dish.  Pour remaining mixture over the filled tortillas.  Cover and cook at 350 degrees for 40 minutes.   Top with tomato and onion. (we skipped that part)

For us I cut the recipe in half since there are just two of us who would eat enchiladas.  And we only had 6" tortilla's in the house, so I used those, but even when halved, it still made a lot of enchiladas! 

And because I was being bothered distracted by the kids, I learned that if you cook it covered at 400 for 20 minutes, then uncovered at 350 for 15 minutes, top with more shredded cheese and bake for an additional 5 minutes, it turns out just fine too:)