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

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!

EB Awareness Week

Today is the start of EB Awareness Week and I just had to share this post on "EB"ing a Mommy.  It is written by the mother whose son suffers from EB and when I say suffers I mean suffers.  Suffering like you and I could never ever probably survive.  Tripp is 2 years old, has a trach, a feeding tube, and has lost his eye sight due to EB and his body is covered in painful sores.  Any little amount of friction causes painful blistering of his skin.  This includes the inside of his mouth.  Can you even imagine?  And yet in the videos his mommy posts his beautiful spirits shines through and you can tell he is a joy and a delight to be around.  He certainly is one of God's favored and I have to believe that with the amount of people who pray for him on a daily basis that perhaps he was brought here to show us how to pray for others and how to believe that our faith can make a difference.  His mommy's strength and faith in God amazes and inspires me as does tiny little Tripp's.  Even though I've never met this family I don't think I can express how much Tripp's story has touched me and how much I love this little boy. 

So what can you do? 


I made my donation and you can, too.  1 in 50,000 babies will be born with EB.  How easily can it be you or I in this situation, mothering a child with this terrible, incurable disease?   What is $10 worth to you?  A weeks worth of Starbucks?  A lunch out during the work week?  A new book?  How about a child's life?  And the $10 goes directly on your cell phone bill. 

We are so blessed in our lives.  Please take a minute out of your life to share, educate, donate and do what you can to help spread awareness and find a cure for EB. 

You can also join EB Part of the Cure on Facebook.  Also vote, vote, vote for Courtney and Tripp in Reader's Digest Your Life contest. 

"Once our eyes are opened, we can’t pretend that we don’t know what to do. God, who weighs our hearts and keeps our souls, knows that we know and holds us responsible to act.” -Proverbs 24:12

What will you do now that your eyes are opened?

We did it!

We finally made it to church!  Emma wore a pretty outfit and truthfully she looked much nicer than me.  I am always a little skeptical when people wear shorts to church and then when I got inside I understood why...no air conditioning!  And almost 90 degrees today.  Luckily I wore a top that you couldn't tell was soaking wet in the back from all the sweating I did.  I sure wish I had worn sandals though. 

Everyone was so friendly and Emma, as usual, was like a little celebrity.  I think she met just about everyone at the church before the service even started.  She was so good natured about it all, too, and didn't even fuss that her six ounce bottle drinking kept getting interrupted. 

The message was "God loves a 'hilarious' giver."  And that is me...I love to do for others for the sake of helping, not for anything for myself.  Of course helping others always leads to good feelings in yourself.  It's like when Phoebe tried to find some way to give without getting something in return and she couldn't do it because she felt good inside when she helped others.  (I miss Friends.)  Although reading this paragraph I sort of feel like I'm bragging, but I'm not really.  I promise.  I just wish everyone could take more time to be kind to one another and focus on the little things that brighten someone's day.   I wish I did more for society because there are so many amazing people out there doing amazing things for the world.

Of course after Emma's huge bottle she fell asleep and missed most all of the sermon.

She woke up just in time for the postlude and benediction though and boy oh boy did the Spirit move her.  She chimed in with her own special prayers and singing.  lol 

Speaking of prayers...keep your prayers coming for Tripp Roth.  He is feeling a little better and his mama knows that everyone's prayers are helping.  Her faith and his spirit continue to amaze me.  I think I am a little in love with this beautiful boy. 

So once again my plan was to be up in bed at 9pm and here it is 9:30pm.  Sigh...ok, I am letting the dogs and getting in bed!  Hope everyone had a great weekend and has a good week.  One month down...only 5 more to go!