Tuesday, December 18, 2012

Tripp's Memorial

Today was a very sad day. 
Suddenly everything seemed so real.  
But I couldn't be more pleased with the way it turned out.
It was well worth the wait. 
I think it honors Tripp and his life perfectly.  
The Elmo is hugging Tripp's "drum," shown by the drum stitching etched along the sides... The quote below his name is the same one I used for his services that Fr. Mark Beard has always told me reminded him of Tripp.  It reads, "Preach the gospel at all times; when necessary, use words."  Tripp never spoke a word, but showed so many people the true meaning of LOVE.  I think the quote speaks of his life perfectly.  
Below is my "Pinky-Swear" poem that I wrote back in July of 2011.  And then of course, my favorite picture of my baby in the right bottom corner. 
Such a special tribute for a truly special boy. 

A HUGE THANK YOU again to Mr. Bobby Landry, Ian, Nelson and everyone from Amite Marble and Granite for their hard work, time, dedication and patience to make this beautiful memorial possible.  

And of course, I want to thank all of you again for the unending love and support you have shown to my family and me through these past years.  
It is truly appreciated. 


Wednesday, November 14, 2012

My sweet boy,

It seems like just yesterday we were celebrating the amazing 10 months you were alive... 
and today makes 10 months since you've been gone.  
Now I wish the months would just stop... 
I can't believe it. 
I miss your sweet face so much.  
I wish I could kiss it again. 
I love you. 
And I dream about the day I get to see you again.   


Sunday, October 28, 2012

I'm officially a World traveler

So I haven't shared this with you guys yet 
(I know, shocker... right?) 
but I am leaving TOMORROW to go to Medjugorje. 
(For those thinking, "What in the world is that?..."  please click HERE to learn more.) 
This is a town where over 30 years ago, 6 different children started having visions of our Blessed Mother Mary.  They are all now adults.  And two of these adults continue to have visions of Mary.  One on a monthly basis, and one on a daily basis.  Medjugorje is an extremely holy, and from what I hear, a very peaceful place. 

This trip has been planned for about 6-8 months now.  I am going with my parents and some close family friends, along with a group of about 60 other people from around this area. Fr. Mark Beard, a priest and our very dear friend, (who spoke at Tripp's services) will be one of the spiritual leaders for the trip.  Fr. Mark has been to Medjugorje multiple times.  He only became a priest within the last 3 years, and actually, the very first time he traveled there was before he was a priest.  He was traveling to Medjugorje to prove that the place was a scam... He came back, and joined the seminary. 
He's one of the most genuine and spiritual people I know.  Hearing him speak about his experiences in Medjugorje is so amazing and uplifting.

Initially, I was really, really nervous about going and almost didn't reserve my place in time.  Mom, dad  and I kept going back and forth with whether we were going to book the trip.  Because 6 months ago, I had no idea where my state of mind would be at this time or what would be going on in my life.  But now I am SO glad that I decided to go.  I am looking forward to this trip more than I could ever explain.  I'm hoping to find peace of mind and praying that I find answers to what I'm supposed to do with my life and my career.  Most importantly, I am so excited to strengthen my faith even more than I have in the past 9 months.  

We leave tomorrow out of New Orleans around 1pm, then we fly into Houston.  From Houston, to Frankfurt, Germany... then on to Dubrovnik, Croatia.  From Croatia, we will take a bus into Bosnia and hopefully (if all goes well) arrive in Medjugorje around 4pm on Tuesday (including the 8 hour time difference). We will stay in Medjugorje for about 7 days.  There, we will have the opportunity to share faith with thousands of pilgrims across the world.  We will attend daily mass at St. James Church (James is my all-time favorite book of the Bible, if you haven't noticed :) We will also climb Apparition Hill where Mary first appeared to the young visionaries.  We will get to also be able to do things such as meet with the visionaries themselves and see the "Blue Cross," which is a place of great healing and grace.    

When we leave Medjugorje, we will then fly into Rome for 3 days where will go into Vatican City and be able to attend the weekly Papal Audience and Blessing given by His Holiness, Pope Benedict XVI.  While we are in Rome, we also get to visit the Vatican museums, the Sistine Chapel, St. Peter's Basilica, and much more.  

I'm not even fully aware yet of ALL the things we are going to get to do (like I said, I've been very nervous about it, so I haven't done much research.... I kind of just booked it, and told myself I wouldn't think about it again until it was close).  
Well, it's close.  
I'm not a good traveler... and I don't like to fly.  
But I'm offering it up!  I know Mary will grant us safe travels!  

I can't WAIT to tell you guys all about it when we get back.  

So, for EB Awareness week, I'm spreading the word all the way to Bosnia!
And I'm bringing prayer intentions for every single EB patient and their families. 
I'll have plenty of time to pray in peace at one of the most holy places in the world, so if you have a special intention, send me an email, and I will do my best to say a special prayer for you. 
It's the least I could do, for all you guys have done for me!

OH, and for those who wanted me to keep them in the loop...
Here's how our new house is coming along! :)
I'm so blessed. 


Sunday, October 14, 2012

9 months of missing you.

9 months ago today, I felt like I had my heart ripped out of my chest. 
 And every day for 9 months, I have felt the aching pain of wanting you back in my arms.  
It felt like a lifetime from the day I found out I was pregnant until I was finally able to meet you. 
And now... that's how long I've been without you. 
Sometimes I still can't believe it's real.  
Especially when I look at that beautiful smiling face... 

Soon, I'll be going through my first Halloween without you.  
Seeing all the other children dressing up and wishing you were doing the same. 
And then my first Christmas without you... 
Please help Mommy to be strong, sweet boy.  
I hope I make you proud. 
The hope of seeing you again consumes my every thought.  
I miss you more than I could ever say.   
Especially today...  


Friday, October 5, 2012

Our visit to Sesame Street

My life is complete. 

I got to meet my son's Hero, whom I believe was one of the nicest men I've ever met. 
Kevin Clash (Elmo) didn't have to be on the set the day Mom and I met him.  He came in anyway to meet us and show us around.  He literally could not have been any more wonderful.  Even more so than I had imagined.  When we met, he acted like he had known us for years.  He introduced us to everyone on the set as "his friends." Many of the people whom he had already told Tripp's story to... who hugged us, offered their condolences, and treated us SO nicely. 
It really made me feel good to know that these people knew about my baby. 
It was truly special.  

We got to watch as they set everything up and then got to see them film part of an episode of Sesame Street.   It was such a great experience to see that.  
We also met Mr. Roscoe Orman, who has played "Gordon" since 1973. 
I KNOW most of you have to remember Gordon, right?!

Kevin was so patient with us, even as we tried to take 100 pictures of everything while they were trying to set up for the taping.  He made sure we got pictures of everything. 
We got to get in Oscar's garbage can... 

And we got to meet, Mr. Caroll Spinney, the man who has been the voice of Oscar the Grouch AND Big Bird since the beginning of Sesame Street. 
 I believe he is about to turn 79 years old.
It was amazing to watch him perform with Oscar.  

We got to meet the cute little Abby Cadabby, voice of Ms. Leslie Carrara-Rudolph, who is just amazing.  
She made us cry... because she was just so sweet. 

We also found the garden where Elmo taped the song about his
"Little Butterfly Friend."  

I want to send a HUGE thank you to Kevin Clash and everyone at Sesame Street who made this day so special for us.  And I especially want to thank Kimberly Sokol- the one who set all of this up and made this whole experience possible for us!  She worked with Kevin to get a time, she got us a car service to and from our hotel, and made sure everything was perfect.  
I am so grateful to all of you! 

 It was SUCH a special day. 
A day that I will never forget, and a day that I'm sure that Tripp shared with us. 



14th Annual Mats Wilander Benefit

This past Monday, October 1st, was the 14th Annual Mats Wilander Tennis and Golf Benefit for DebRA that I had mentioned in a previous post.  I was chosen by DebRA as an honoree for the event and flew to NYC to attend and give my speech and to be a part of this great cause!  

The event was amazing.  
I met so many amazing people, some of them being people that I have talked to on the phone countless times but never had the opportunity to meet. 

Brett Koplean, who is the Executive Director of DebRA, took such good care of my Mom, Dad and me when we got there.  He got our flights and hotel in order, got a car service for us, and showed us around the city!  I'm so grateful for him and his wife, Jackie, for treating us so nicely.   
The EB community is really full of wonderful people! 

I got to meet Mr. Bill Cornman and Mrs. Danielle Malchano from National Rehab, where I would get Tripp's bandages.  They were so great.  I used to speak to Bill at least once a week for a while.  And got to know his voice pretty well.  But it was so nice to finally get to hug the man that went above and beyond to help me so many times- when I was beside myself stressing and worrying about bandaging materials.

I also got to meet the other honoree for the event, Dr. Phillip Reilly, who has been extremely involved with EB research.  Dr. Reilly is on the right of me in the picture below... and to the left is Dr. Jakub Tolar (whom I met and spoke with when I went to Minneapolis about the BMT for Tripp).  It was SO SO nice to see him again.  Both of these men are amazing and passionate about EB treatment and research.  It was an emotional day, for sure. 

I got to meet Leslie Rader.  I've mentioned her here on my blog several times.  She was the first  EB mom that I spoke with after Tripp was born, who lost her little girl at 7 months old.  Getting to finally hug her was amazing and very comforting. 
(and yes, she was VERY tall :) 

Every time we checked the weather for Monday, it was supposed to rain, but God gave us the most perfect day.  It was cool, sunny and absolutely beautiful.   

And I got to meet the fabulous Alan Kalter, the announcer from the David Letterman Show.  
He was amazing.  After dinner, he did the live auction for the event.  
He was really a great guy... 

And the one and only Mat Wilander... 
who begin this fundraising event because his son Erik suffers with the milder form of EB (Simplex), whom  I believe he said was about to be 16 years old. 
From 1982-1988, Mats won 7 Grand Slam singles titles.  
In 1988, he was ranked the #1 tennis player in the world.  
Obviously, I'm a little too young to remember seeing him play (since I was born in '85...) but my dad sure does.  And it was pretty cool to get to see him playing with everyone.  And even better getting to hear him speak at dinner that night about his son and his passion for finding a cure for EB. 

Even my sweet friend Mandy flew up to the event. 
 She volunteered all day so that she could be there for me and get to hear my speech :) 

This picture is for the very nice man and his nephew who wanted a picture coming out of the clubhouse... Sorry I forgot to get your email so that I could send it to you! 
I hope you'll find it :) 

 My daddy golfing with his caddie:) 

I also got to meet sweet Miles... 

And precious Ava Rose... who suffers with Junctional EB, and is so similar to my sweet Tripp in so many ways.  It was heart-breaking to see her.  But at the same time, she warmed my heart in ways I can't explain.  These kids are truly amazing.  
And so are their incredible parents... 

She reminded me so much of my sweet boy... 

                                                Some pretty amazing fellow EB Mommies... 

Brett Koplean presenting Dr. Tolar with a $200,000 check to go towards EB research.  
Pretty amazing, right?? 

This little angel and her family hold such a huge place in my heart. 
It's hard to explain what I felt being around her.  
She had the same shining little personality as my baby boy.  
I can't say this enough... the children and adults suffering with EB are just super-human. 

I am so humbled to have been able to be a part of this event, that raised A LOT of money for DebRA of America.  It was something I will never in my life forget.  The way so many people came together for this cause was incredible.  
I am SO proud to be a part of the EB community and SO proud to be Tripp's Mommy.