A Reminder

Last week my People magazine featured Kate Middleton (Prince William's wife) on the cover with the tag line "Tragedy" because the Princess had been photographed topless while on vacation.  I felt a little disgusted and outraged.  Yes, being photographed topless is an invasion of privacy, but being photographed topless while on a luxurious vacation is NOT a tragedy.  And so I sent the following letter to the Editor at People magazine.

Dear People,


I was disturbed by your recent cover featuring Kate Middleton and the word "tragedy" in response to her being photographed topless. I think you need to re-examine your use of the word tragedy. Soldiers and civilian employees being killed in Afghanistan, leaving behind loved ones, are tragedies. Homelessness and poverty in the USA are tragedies. Children being abused is a tragedy. Human trafficking is a tragedy. Parents outliving their children is a tragedy. Kate Middleton being photographed topless while on a luxurious vacation is NOT a tragedy. It's an invasion of privacy.

If you want to do a true story on tragedy why not spread the word on EB, about children being born with a horrific, painful, rare disease? Courtney Roth lost her 2 year old son this January. THAT is a tragedy. http://www.wdsu.com/news/local-news/northshore/Mother-spreads-word-on-fatal-skin-disease/-/12537650/16668638/-/jif376/-/index.html

The suffering of baby Easton is a tragedy. http://www.facebook.com/#!/SupportBabyEastonFriedel

A family who can't afford medical supplies for their child because the husband got laid off from his job with the Department of Juvenile Justice and the closest hospital that can work with a child with EB is 4 hours away is a tragedy. http://www.facebook.com/BenWileyJr

People magazine reaches so many people. I know it is primarily a celebrity magazine, but you also profile people in need or doing good in the world. Please keep the use of the word tragedy to true tragedies.

Sincerely,
Jenn M.

I look at my daughter and thank God every day that she's healthy.  I can't imagine what these parents are going through or how they feel and I thank God for that, too.  When she's whining or fussy or wakes me up for the 3rd time in the middle of the night I remind myself how many parents would give anything to be in my shoes right now with their child.  I don't know why a terrible disease like EB exists.  I do know that these children are beautiful.  Through all the pain and tears and things you and I can't begin to process they smile and play and laugh.  Children are much stronger than us adults could ever hope to be.

Perhaps we should all approach the world with the strength of a child.

Time to Fly 2012

Many of you probably follow Courtney Roth's blog regarding her son Tripp's fight with EB...the worst disease you've never heard of. Tripp sadly lost his battle with EB, but that doesn't mean the fight is over. Far from it!

PUCK stands for Pioneering Unique Cures for Children and is an initiative of the Cancer Research Fund. The Epidermolysis Bullosa Medical Research Foundation and the Jackson Gabrial Silver Foundation have announced a matching grant for the research team at the University of Minnesota.

Debra, an organization dedicated to helping those with EB, describes EB as Epidermolysis Bullosa (EB) is a rare genetic skin disease that causes the skin to be so fragile that the slightest friction can cause severe blistering—inside and outside the body. Today there is no cure. Severe forms of EB cause patients to live with constant pain and scarring. The worst forms of EB lead to eventual disfigurement, disability and often early death.There are many patients who are diagnosed with milder forms, which, while they can be extremely difficult to live with, are non-disfiguring and non-lethal.

The only treatment for EB is daily wound care and bandaging. The daily routine is a grueling, multi-faceted daily regimen. Caregivers, often parents or family members of EB children, must work in tandem with medical professionals to determine and administer different treatment methods to care for EB wounds.

Christie Zink is an advocate for EB and is fundraising to raise money for the Children's Cancer Research Fund. 100% of the money raised goes to EB research and 100% of the money will be matched. You can visit Christie's fundraising page at Time to Fly 2012.

As a parent I can't imagine watching my child live in excruciating pain, to know that my basic care (bathing, changing a diaper, feeding) is causing pain. A bath, instead of being a time for fun and play, becomes a time of anxiety and agony. Every diaper change is sheer torture. It's heartbreaking. No parent wants to see their child suffer. No child should have to suffer.

A cure is possible. It's within reach. Won't you help us get there?

A Love Letter

Dear Tripp,

I know we've never met.  I don't know your mom or your family nor can I imagine how emotional the last two and a half years have been for them.  I can't imagine what it has been like to be a mom of a sick child.  But I've followed your mom's blog for the last several months.  I've gone back and read some of what she wrote about you in your first year of life.  The love that your mom has for you has shown through her blog.  Every post she writes is a testament to her faith in God and her faith in you. 

Even though I don't know you I know what you've taught people.  I know that you have been an angel on earth.  It's so hard to find purpose in seeing someone so young, so tiny go through so many struggles.  I know that you've fulfilled the purpose you had here on earth.  You brought people together.  You taught strangers to care and to pray and to find faith where maybe they didn't have any before reading about your struggles. 

I fell in love with you the first time I saw a video of you playing on your mom's blog.  Your beautiful eyes and your beautiful smile touched my heart and reminded me that no matter what is going on in my life that I am always blessed.  If you could get up each day and play your drums and smile at your family then I could honor you by greeting each day with a smile and a positive attitude.  The faith that your mom has in God inspires me to be more faithful myself, to trust in God to take care of myself, my child, and my husband.  I thought about her faith especially during my husband's deployment and I knew that no matter what happened that we would be okay. 

I prayed day and night for a miracle for you.  I prayed for your mom and your grammy and your family, your doctors, for a cure for EB, and all the people that love you.  And then I prayed for peace for you.  When I prayed for you last night I had a feeling that you'd be playing in heaven today.  And still I cried when I read that you had passed away even as I thanked God that you are no longer in pain. 

You, Tripp, are the miracle.  You are the light that reminds people that beauty exists in this world despite the cruelties that we may face.  You are the physical reminder that God is good.  I hug my daughter a little tighter every day and I spend more time thanking God for the blessings in my life.  Because of you and your mom I know I can face most anything life throws at me with dignity and faith. 

I thank your mom for sharing you with the rest of us.  I know it couldn't have been easy.  And I thank you for being such a brave little boy.  I will remember you for the rest of my life and someday I will tell my baby about a beautiful little boy who faced such adversity in his short life. 

"Do not stand at my grave and weep,


I am not there; I do not sleep.

I am a thousand winds that blow,

I am the diamond glints on snow,

I am the sun on ripened grain,

I am the gentle autumn rain.

When you awaken in the morning’s hush

I am the swift uplifting rush

Of quiet birds in circling flight.

I am the soft star-shine at night.

Do not stand at my grave and cry,

I am not there; I did not die."
 
So with love I write this letter to you.  I hope to meet you someday in heaven.  Have fun.  Play hard.  And enjoy the life you were meant to lead next to our Father. 
 
Love, Jenn

Homecoming

I've been thinking about what I would write about Paul's homecoming.  Do you want to hear about our ride to Virginia with myself, Emma, and Grandma Joan?  Probably not (although at this point I know some funny things happened and I can't even remember them). 

We left Florida on January 4th and I dropped Joan off near Richmond on January 5th.  FYI Richmond is NOT a pet friendly city and it took me forever to find a hotel room that would take my 10lb chihuahua.  Really Richmond?  Tell your mayor to be expecting my letter. 

On January 6th we headed up to Gainesville, VA to stay with my friend Mary.  I thought we'd be at Mary's until the 10th and then on the 7th I got a phone call at 1am to sign in to facebook so I could instant message with Paul (thank goodness for newborn baby Gracie keeping her mommy up so Paul had someone who could call me lol).  He told me he was coming home on the 8th!  Of course this early homecoming involved him flirting with a staff sergeant to get an earlier plane, but since I know Paul is a flirt AND he got a seat on the plane then it's all good. 

The 7th was spent running around getting stuff for dinner as my cousins were coming over! 

I am the oldest cousin on my dad's side.  None of us have ever lived near each other or seen each other that often, but as we've gotten older I feel that we've made an effort to connect and get to know each other and spend time together.  Of course Devon and Kathryn both live in the DC area and Kait is in college.  I'm after them to come to Boston for Kait's 21st so I can be dd.  Devon's fiance Connor was also at dinner and my friend Mary (seeing as it was her house and all), but this is just a pic of the cousins. 

On the 8th I woke up feeling incredibly anxious.  Yes, I was excited, but it was so overwhelming to know that in the afternoon Paul would be home that I could hardly stand myself.  I followed Mary up towards Baltimore and of course I had to get there super early so we planned on eating lunch near the airport (Timbuktu was the name of the restaurant.  It looks like a dump outside, but inside the waiters are dressed up and the tables have linen tableclothes and cloth napkins and it was really yummy).  I almost ordered a cocktail at lunch because my heart was beating so fast! 

We got to the airport at about 2pm and got to the gate at 2:15 or so.  I thought we'd have to wait as the arrivals board still said his plane was getting in at 3:30.  An employee walked by and told us that they'd be walking out in 20 minutes or so.  What?????   There was a Sergeant there so I asked him what plane was in thinking it was another plane.  Nope it was Paul's.  Unfortunately our friends Jamie and Ronnie were on their way to the airport and I told them to turn around since they'd get there way after Paul had deplaned.  Our friend Jon came and so did my cousins (and it was Kathryn's birthday).  You know you have amazing friends when they'll drive over an hour to the airport just to welcome your husband home. 

Waiting for Dada

Mary and Emma

First hug and kiss

Dada and baby love

So happy

Dinner at the Cracker Barrell (Paul says yay for sweet tea)

And dada giving baby sweet tea

I have more pictures on my camera, but haven't uploaded them onto my computer yet.  It is so wonderful having Paul home if for no other reason than to have someone feed and bath the baby.  haha  And in one more week we leave for a family vacation.  Life for sure doesn't get any better.  We are blessed beyond measure and couldn't ask for anything more at this point. 

I will ask though for prayers for peace for Tripp Roth.  He is not doing well and his time here on earth is drawing to a close.  He is so little to be in so much pain and his mother just wants peace for him in whatever form it comes.  So say extra prayers and hold your own children close and realize the blessings you have in your own life.  Tripp and his mama are amazingly beautiful and their faith in God is inspiring.  Tripp inspires me to be grateful for every second I have with Emma and to thank God for all the blessings in my life.  He is truly an angel on earth. 



My Favorite Little Boy

I wanted to promote a wonderful idea and opportunity to trim Tripp's tree. 

Personalized Free   is donating 10% of their proceeds from now until Christmas to Debra.  This is an organization that helps those whose lives are afflicted by EB such as my favorite little boy Tripp Roth.

If you are ordering any personalized gifts this year I encourage you to order something from Personalized Free.  Here is a link to the blog they wrote about Tripp and his mother Courtney.

The rest of my blog was written by Courtney.

My mom, Christie Zink (our superwoman advocate and supporter from Minnesota) and I, came up with what I think is a FABULOUS idea. I hope you guys will agree.

This year for Christmas, we want YOU to

"Trim Tripp's Tree."

We are going to put a Christmas Tree behind Tripp's rocking chair in the corner of our living room this year. I want to decorate it with ornaments from everyone (no matter where you are) that follows our story and prays for my little Drummer Boy. These ornaments will be something that I will TREASURE every single year, no matter what happens in the future. Something that will have SO much meaning and will be so very special to me. So I can always remember all of the support that we've had through everything.

You all know that it's hard for me to ask for something for myself- but I figured that this would be the perfect opportunity to raise money for DebRA, give business to a company that wants to help us, and also make Tripp's Christmas tree this year the most special Christmas tree in the world.

You can put your name, your state, city, or a special message to Tripp if you'd like:)

Now, you DO NOT have to buy an ornament from personalizedfree.com if you do not want to. You can order from anywhere you want OR you can just make a homemade ornament!! No matter where it comes from, it will be SO special to us!

I can't wait to share pictures of our tree with you all this year!!

If you want to join in the ornament fun, you can mail them to us at:

18669 Sisters Road

Ponchatoula, LA 70454

Ok, so I hope no one thinks I'm being pushy for asking this- I mean, you guys have already gone above and beyond for us in SO many ways. I just wanted to throw this idea out there, in case anyone wanted to participate- and Christie has also created a Facebook page event called "Trimming Tripp's Tree."

 

I can't wait to hold my Trim Tripp's Tree party!