Missing my baby...

Yesterday made one week since my little man went to heaven.  And yesterday was the hardest day so far.  A whole week?  What have I been doing for a whole week?  How in the world have I made it a whole week without kissing those sweet lips or holding those sweet fingers?  I miss him more than I know how to say.  I miss his face, I miss his smell, I miss everything about him and our life together.  I've been trying to do normal things... I've gone to Target, I've gone to get ice cream, and I've gone to dinner with my family for my grandma's birthday.  But it's hard to just "go on" and try to be normal.  I feel guilty for everything I do.  Nothing feels real or right.  I would literally give anything in the world to have my baby back... I don't want a "normal" life.  I want my life with Tripp back.  I would take care of him every day, all day, for 100 years if could.  My body is numb... my emotions are numb... and each day has been like a blur.   And now that I don't have him here, I realize HOW MUCH my life actually revolved around him.  I know that I didn't take a single minute for granted... but what I wouldn't give to have just one more day with my baby.  There's just something about knowing that you can't have something, that makes you physically yearn for it.  
I miss him so much. 
 I could have NEVER prepared for this... no matter how long I was given. 


Nothing of Tripp's has been moved yet... not even an inch. His toys are the same, his bed is the same, the rocking chair is the same and his medicines are in the same spot.  Nothing has been touched.  I don't know how long it will take me... and maybe that is why I haven't been able to grieve properly (not that there is a "right" way to grieve), but maybe it's why I feel like it hasn't hit me yet... like it's not real.  Like this is some kind of terrible nightmare.
All I can think about and see in my head is his precious, beautiful face the last time he was in my arms. 

Tripp's service was beautiful.  There was an outpouring of love and support from SO many people.  Most of the people that I hugged began their conversation with "You don't know me, but..."  That is a true testament of the lives that Tripp has touched.  For so many people that we don't even know... people who have never even met Tripp, to come out and show their support is so incredible.  Thank you to those who were able to come out and support us, and thank you also to those who could not make it and showed your support from home by your prayers, lighting candles, and offering moments of silence.  I could truly feel the love on Wednesday.  There were people who stood on the side of the road, holding signs with words of love and support for us to see on the way to the cemetery.  And businesses all over town hung red balloons in honor of Tripp.  It was truly amazing to see.  



I have gotten some requests from people to post my speech from the service, so here it is...


I would honestly like to tell you all that I’ve never had to think about what I was going to say at my son’s funeral, but the TRUTH is that this exact moment has played over and over in my head for the past few months.  What a nightmare... having to say goodbye to your only son.  I don’t know which is worse- losing a child unexpectedly, or having years to plan your goodbye, knowing that it is coming whether you are ready or not.  I’ve pictured this very moment in my head... me standing here, and all of you guys gathered here for my son.  But even though I’ve pictured it again and again, deep down I had hoped with my whole heart that it would never really happen. But here I am.
You might think that I feel just a little bit of relief, after watching my baby suffer- day in and day out- but I don’t.  I’m not relieved at all.  I want him in my arms.  I want to hold his sweet little fingers.  I want to sing to him.  I want him to smile that amazing, “melt your heart” smile.  I want to spend every minute of my day taking care of him- because that’s all I know.  I don’t know how to do anything else.  I don’t want to do anything else.  
I know I will heal with time, though this hole in my heart will never, ever be filled.  Every single moment for the rest of my life, will be bittersweet, because I won’t have my baby to share it with.  It still doesn’t seem real.  I have spent the past 2 years and 8 months living like a Tiger mom, never letting the doctors or nurses really even touch Tripp, and making all the decisions myself.  And this Saturday, for the first time, I had to hand over my baby, knowing that I would never see his little face again.  Having to TRUST that someone else was going to take care of him the way that I have taken care of him.  But I suppose if you have to entrust your child’s life to someone else, who better than God himself, right?  
Over the past few weeks, we have all prayed for peace.  I have prayed that God’s will be done, whatever it may be.  And I can tell you that our prayers were answered.  Tripp’s passing couldn’t have been more peaceful.  He was in his favorite spot, in the rocking chair, in my arms, with my mother at his head.  God took care of him.  And he took care of us.  And as far as God’s will, I think we can all look around and see what that was.  Tripp has brought all of these people together in one spot, in prayer.  No matter what faith you are, and no matter what you believe... right now we are gathered as a family, as Tripp’s family, and as God’s family.  And we are putting aside our differences, trusting and believing that Tripp is sitting on Jesus‘ lap at this very moment, happy and healthy, looking Jesus in the face, and saying, “Look, Jesus, at what I’ve done?  Aren’t you so proud of me?”  I bet Jesus is proud.  I know that as Tripp’s Mommy, I could never, ever feel more proud.   
I know that my life will never be the same because of Tripp.  He is the most precious gift I’ve ever received.  I hope that he will continue to change the lives of so many people even though he is now in a far better place.  I hope now he will be watching over and taking care of me, because I now need all of the comfort and care I get. 
Thank you all for coming today.  And thank you for the support that you have shown Tripp, myself, and our family.  I know Tripp is smiling down on everyone here today, knowing his job here on Earth was done.  And done well.  
May God bless you all. 
Thank you.



It would be impossible for me to personally thank everyone who was a part of the services on Wednesday, so I want to extend a very special THANK YOU to everyone who pitched in to help us.  Everyone who brought food (which was wonderful), the beautiful flowers everyone sent, the people who volunteered their time to set-up or help clean up, and everyone else who did ANYTHING to make Wednesday (and this whole week) just a little bit easier for our family.  Once again, I have THE MOST AMAZING support system, ever.


A huge thank you to all of the people who came from out of town, especially Patrice (Jonah's mom), Tim (Bella's dad), Sam, Chloe, and Marybeth Sheridan (Sam was one of the first of the EB kids to go through the Bone Marrow transplant), and also I got to meet the amazing family who are adopting Anton.  I was so surprised and happy to see them there. It was SO awesome to get to finally meet so many people who you feel are already like family.  I've talked to Patrice so much over the phone and through text that when I finally met her, I really felt like I knew her my entire life.  She is everything I expected her to be and more.  An amazing and inspiring woman.  I was so glad she got to come to the house afterwards and spend some time with us.  I can't wait to spend some time with her under different circumstances... not such sad ones.  


Meeting Sam Sheridan was an experience that I will never forget.  I wanted her to know HOW MUCH her being there meant to me.  Sam is 16 years old and has Dystrophic EB.  She is so beautiful.  And she is so brave.  Sam, her mom Marybeth, and her sister Chloe drove down from Tennessee to come to Tripp's service.  I know it must have been hard on Sam.  What an AMAZING young woman she is.  Thank you, Sam, for letting me hug you... and thank you for being so brave.  I promise you that I will fight for you, for Tripp, and for every other person with EB for the rest of my life.  None of your suffering or Tripp's suffering will be in vain.  

When the day of the service was over, and everyone had left our house...  our family was gathered around the table, just talking about the day when my sister found this video on her Facebook page.  Now, I don't know if you guys know how many times I have searched "Elmo songs" on YouTube, but I can assure you it was hundreds of times- and I had never before found this one.  It's called "Little Butterfly Friend."  Think it sounds perfect for Tripp?  Just watch it... it's the sweetest, most perfect song ever... 1. because Elmo sings it.. and 2. because it's about one little butterfly who Elmo calls his "friend" and holds in his hand.  Think this song came at the right time?  The day of his funeral... Think it was my sign that I had never heard it until THAT very day?  I'll take it.  It's given me comfort through this past week.
Thank you, Elmo.  
I know it wasn't written for Tripp, but it couldn't be more perfect.   

I miss you my little man... so much that it hurts. 

 I'd give anything to have one more day with you. 

Just to kiss your sweet face and tell you I love you. 

Mommy is so proud of you.  

Your wings must be SO big.... 

Love,