Wednesday, May 14, 2014

Happy 5th Birthday, Tripp.

Dearest Tripp,

You would be FIVE years old today.  
I remember writing the post about your 1st birthday.  It was so bittersweet.  Those doctors didn't think you would make it... but your mommy knew you would.  I wanted you to be able to enjoy your 1st birthday party so badly.  Because honestly, I knew that every day, you were only getting more sick and more weak.  On the day of your birthday, we had such a fun day at home.  I put your 1st birthday outfit on.  We played, ate some cake, and the family came over.  It felt somewhat normal that day.  And then the next morning... you woke up with a corneal abrasion and couldn't open your eyes.  That day ripped mommy's heart out.  It was kind of a slap in the face and brought me back to the reality of what we were really dealing with.  Oh, how sad I was for you.  We had to bring the rocking chair to your party, so you could just rock with one of us the whole time.  My mommy heart gets sad just thinking about it. 
I wrote you this letter on your first birthday:

My sweet Tripp, 

Today you turn ONE YEAR OLD.  I can't believe it.  Sometimes it feels like only yesterday when they placed you in my arms... and then other days it feels like you should be 5 years old!  You have been through SO much in one short year.  As I write this I am lying next to you while you sleep... and good thing I'm not writing it on paper because I can't hold back the tears.  I have tears of joy and tears of sadness... but mostly I just have tears of LOVE.  I LOVE you so much that I don't even know how to say it.  Every single second of the day I just want to hold you and squeeze you.  And if you could talk, I know you're first words would be "I love you" because I tell you that at least 100 times a day.  

You are so special, my little man.  I know that it will be really hard for you to understand at first, but because you have endured so much pain and suffering... God has a very very special plan for you.  I just know it.  I can look at you and tell that you are an angel here on Earth.  Mommy is so lucky and so blessed to have you for a baby.  You have made me a better person in every way possible.  I will never take another day for granted... especially a day that I have with YOU.  

You are overflowing with personality.  You have a mind of your own.  You are completely 100% spoiled rotten.  And I'm not going to lie... (almost) anything you want, you will get.  Because you deserve it.  Right now you are clapping, banging your toys, smiling like crazy, rolling your eyes (precious), pushing backwards in your walker, turning the pages of your books, and lots of other fun things.  You are getting to be so much fun and Mommy thinks you are such a smart little boy.  

Right now, my heart doesn't know what to feel.  I feel so proud of you for fighting this horrible disease for a whole year.  But my heart is aching to watch you suffer everyday.  I have so many mixed feelings.  I wish I could take every single bo-bo away from you... from your eyeballs to the tips of your toes.  But what I think I'm really trying to say, my angel, is that I wouldn't trade you for any other baby in the whole wide world.  Because YOU are the most special baby in the whole wide world.  

My goodness, I love you.  I love you so much that it hurts.  And I hope and pray that you are with me for many more years so that I can SHOW you how very much I love you.  Have a wonderful day, sweet boy.  Mommy is SO SO proud of you.   And I am honored to be your Mommy.  

I love you, 

You're second birthday was also bittersweet.  
But we enjoyed the heck out of this day together.  
You were such a trooper considering all you had going on... 
drumming a little, then rocking a little.  
Aunt Mary made you a huge duck cake.  
You weren't all that interested...
 but Mommy dug in.  
You made me so happy just by being alive.  
Your spirit, through all your pain, was enough to bring anyone to tears. 
I wrote you this on your 2nd birthday:  

Dearest Tripp, 

Happy, Happy 2nd Birthday my sweet boy.  Where in the world shall I begin?  Let me start off my telling you just how exctied I was about you when you were in my belly.  You were already the best little boy (though Mommy didn't know you were a boy then).  You never once made Mommy feel sick, and you didn't even move around much while you were in my tummy.  But you did make me eat a whole whole lot.  While you were in there, I used to think about all the fun stuff we were going to do together... like going to the park, taking walks, going shopping... stuff like that.  I couldn't wait to show you off to the world.  

When the time came for you to come out and meet everyone, you took a little longer than expected (Mommy thinks it's because of your big head), but whatever the reason, you finally arrived on this day- May 14, 2009.  You were absolutely perfect.  No kidding- as beautiful as they come.  But very slowly we realized that the road ahead of you wouldn't be so perfect.  In these past 2 years, you have had to face obstacles and challenges that no human being should ever have to face in a lifetime.  Since the first day of your life, you have had to deal with pain.  And within the first few months, you starting struggling for each breath you would take.  Before you were 6 months old, you had a feeding tube, a tracheostomy, were covered in bandaging to protect your skin from blisters from the neck down, and had been in and out of the hospital so often that all the doctors and nurses knew your name.  

Each month, week, day... always brought on something new.  Either a new blister, a new infection, another corneal abrasion, a plug in your trach... I could go on and on.  But you, little man, took every new issue like a complete champ.  A lot of times you would have to put Mommy back in her place.  I would be so sad and down about something that you were going through, but you would always show me that things were going to be okay by either showing off a new trick you learned or just flashing that "melt my heart" smile of yours.  

You got your trach put in before you could even speak your first word.  I dream about the day that I get to hear you speak for the first time... whether it is when we are in Heaven together or whether it's here.  I wish you knew how many lives you have touched just by being you.  You have already spoken to so many people and taught them so much about life- without even saying a word.  

This year's birthday is definitely another milestone.  As will every other birthday from here on out, since the doctors said you wouldn't live past your first birthday.  But as your Mommy, I must say that times like these are bittersweet for me.  Of couse I am overjoyed that you have turned 2 years old... but I'm also the one who has watched you turn blue and lose conciousness struggling to breathe.  I'm the one who pops each blister as they form and grow, the one who places you in the bathtub and cleans your sores while you scream, the one who has to put pressure on a raw finger or toe to stop it from bleeding, or the one who lifts your head off the pillow in the morning when it was stuck and starts bleeding.  I'm the one who sees every ounce of pain and witnesses every minute of suffering on a daily basis.  So while it's easy for me to say that this is a great and happy day for me- it's also a very sad day.  I wish so desperately that you could have a normal little boy life.  I wish you had your eyesight.  I wish you could speak.  I wish you could wear normal clothes without bandages.  I wish you would lay next to me and cuddle without me worrying about giving you a blister.  I wish you could wear shoes.  I wish you could go outside, ride your bike, go to the park and slide down the slide.  I wish I could throw you in the car and go get a snowball together.  I know all of these things don't matter to you, because you don't know any better... but I can't help think about these things every day when I look at you.  

You know what gets me through?  You.  
You are my HERO.  
You cry when I pop a blister, and then in the next second... without missing a beat, you are smiling and "clicking your tongue" to the music.  You are more than satisfied in your own little world.  You take what you've been given- and you deal with it.  And some people may say, "Well, he's only two... he doesn't have a choice."  But I don't believe that for one second.  I do believe that you have a choice to fight or give up.  And I know that you are a fighter.  That's the reason that you turned two years old today.  You make me want to be a better person.  You make me a stronger person.  You make me a kinder person, a more thoughtful and selfless person.  The way I live my life changed when you came into this world two years ago today.  I owe my life to you.  And without a thought, I would give my life to take all of your pain away.  

I want to tell you some of the things that you are doing right now.  You are nothing short of musical genius (I'm a little partial... but I think so:).  You LOVE music or anything that sings or makes noise.  You have every drum and musical instrument ever made and you can listen to a song once- and beat to the tune of it perfectly on your drum.  Though plenty of times, you get aggravated with us and you "fuss" us when we try and get you to show off.  If it's not YOUR idea, you don't want to do it.  You can't stand the word "love."  You don't "love" your Mommy, Grammy, MeMe, your shaker, your drum, or ANYthing.  You shake your head "no" the second you hear the word.  But you will say that you "like" your Mommy or your toys, etc.  Just don't mention "love." You have three rectangular storage ottomans that are shaped in an "L" that you walk back and forth on.  There are two baskets full of toys at each end.  You're a pro at finding what you want in those baskets, even without being able to see.  You know exactly what each toy is the second you touch it.  And if you find something you don't want, you just throw it.  Some of your favorite songs right now are: Elmo's ducks (and you make the sign for "duck" each time the ducks quack... it's the cutest thing ever), Rubber Ducky, Shoo-Fly, Don't Bother Me, She'll be Coming 'Round the Mountain, Rise and Shine... and plenty more.  You either want us to be singing to you or your cd's on singing almost all the time.  Right now when you are rocking or laying in your bed, you either want to hold your duckie or a "shaker."  And when you're really tired, you usually drop one toy and hold your blankie.  

There is absolutely NO diciplinary action whatsoever in this house.  You do whatever you want, whenever you want, however you want and with whoever you want.  And that is the God-honest truth.  I love every minute of it.  And you deserve every minute of being as spoiled rotten as you are.  
There are big big plans in store for you, my boy.  And each day that you are here, I believe in my heart that you touch another life.  You have so many people across the world who are praying for you- people who have never even met you but write me and tell me that you inspire them.  You wear some big shoes, buddy... shoes that many of us could never dream of walking in.  And you sure wear them well.  

You are what I live for.  What I started living for 2 years and 9 months ago... and what I will live for the rest of my life.  What in the world was my life like without you in it?  I'm so blessed because when I think my day was rough or that I have it bad... I have you right in front of me every day to remind me that I need to count my blessings and that I need to step up my game.  

I love you more today than I did yesterday- 
and I will love you more tomorrow than I do today.  

Happy Birthday my little miracle. 
Love, Mommy 

And your 3rd birthday... ugh.  
You're first birthday spent in heaven. 
I'm sure it's the only birthday you remember and I'm sure it blew your other birthdays out of the water.  
But it was REALLY, really hard on Mommy. 
This is what I wrote you:

Dearest Tripp, 

Help me to find the words to say to you today.  
I'm so sad.  
I know you wouldn't want me to be sad, baby, but I am.  
I can't help it.  I wish you were here.  
I wish I were decorating the entire house so that it looked like it "threw up" Elmo. 
I know that's what kind of birthday party you would have wanted- Elmo everywhere.  And maybe even a little Bert and Ernie mixed in there.  
This is the hardest post I've had to write.  
I think it's even harder than the post I had to write on January 14th. 
Because now the shock is wearing off, and reality is setting in.  
You would be THREE years old today, baby boy.  

I wish we were rocking in your favorite spot and I wish we were singing songs together. 
And then maybe if you felt okay, you would play "Happy Birthday" for me on the drums like you did last year on this day.  

I wish we were beating the odds again this year. 
I wish we could chalk up another year of beating EB.  
But this is reality, I guess. 
You don't even get to see your THIRD birthday. 

Bubba, I need your help in convincing me that EB didn't win. 
I want to say it, but saying it and feeling it are two different things.  Right now I feel like it won.  
Because it took you from me.  EB took away the most precious gift I've ever received... You.  
But I know you aren't having the same feelings as me.  
I know you are up there in Heaven, soaking up the Living Water and the light of Jesus.  
I know you aren't wishing that you were back here... suffering.  
I know deep in my heart that you are in the best place possible. 
But it's without me.  
Baby, you've never been ANYWHERE without me.  
That's why it's so hard.  I'm supposed to be with you.  We go everywhere together. 

I remember the day you were born...
Oh, how beautiful you were.
You were the most amazing baby from the second you came out of Mommy's belly. 
You were SO good.  So quiet, so patient, so perfect. 
The day you turned a year old was such an incredible milestone for us.  
Boy, had you been through a rough year... a feeding tube, over 10 teeth, a breathing tube, practically living in the hospital... and then starting to have sores in your eyes.  
You were so beautiful.  
You were SO good.  
Nothing ever bothered you.  You never cried. 
I can't tell you how proud I was the day you turned ONE.

I don't think the doctors thought you would live to be TWO. 
By this time, you had surely been through the ropes.  
Infections, losing your eyesight, the sores that kept coming and wouldn't heal. 
The pain... 
You were such a trooper on that day.  You smiled, you played, you entertained everyone.  
Even though I know you were hurting. 
You make me so proud, baby. 
For you to turn TWO years old was a blessing.  We all knew that.
It showed the power of love, prayer, and perseverance.

But we don't get to see THREE.  
You are spending your third birthday in the lap of Jesus. 
I'm not sure that any Elmo party can top that... 
But oh, how I wish we could try.  

The day before you left me was torture... the day that you left me was torture...
The days after you left me were torture... 
And today, living without you in my arms is torture... 

And now, decorating your gravesite, is what I have to do to honor your birthday.  It was pouring down raining and was supposed to rain all weekend, so I knew I didn't have a choice but to put something out there in the rain.  
Well, it didn't work, of course.  
The balloons didn't stay.  
(I can't wait until your monument is made so it can be pretty out there). 
I guess I'm just new at the "decorating the cemetery" stuff. 
No Mommy should have to do that. 
I sat in my car, soaking wet.
And I cried... and cried... and cried. 
It's so unfair. 

I sure hope God is throwing you the best Third, Elmo Birthday party EVER. 
You deserve to be able to finally get to stick your little fingers in your cake and pig out. 
I wonder if God has a camera to take pictures so I can see one day, too.  
Because Lord knows Mommy took lots and lots of pictures of everything.  
Could you ask him that for me, baby? 

I'm devastated. 
I miss you. 
It's not fair that I'm not with you. 
It's not fair that I have to stay behind and try to breathe without you. 
Sometimes, it literally is hard to breathe without you. 

I'm so proud of you. 
I don't think I could possibly be able to FEEL any more proud of you. 
You are the greatest gift and the most precious blessing that I've ever received. 
I wish we would have had more years together.  
I wish I could have seen you take your first steps forward without holding on. 
Or maybe even learn how to play your first set of "big boy" drums.  
I wish we could have eaten an ice cream cone together.  Or taken a boat ride.  
Or gone to the beach together.  
I wish I could have watched your first t-ball game.  
I wish we could have gone to get a snowball on the hottest day of the year. 
I wish I could have taken your picture for your first day of kindergarden. 

I was walking through target the other day.  
That's where I bought almost every single one of your toys (we pretty much bought out the store).
And I passed by the toy section.  My eyes welled with tears as I saw SO many new toys that were on the shelves that if you were still here, I know I would have bought them all.  
I saw a really cute toy that I knew you would have loved.  
I hope Jesus has it for you in Heaven. 

Today also makes 4 months since you've left my arms. 
But it seems like an eternity ago.
 I want you back in my arms. 

Happy, Happy THIRD Birthday, in heaven, my sweet boy. 
I know it's not a happy day for me... but I sure hope it is for you. 
I hope you know that Mommy would be there with you if I could.... 
lighting your candles and letting you open SO many presents. 

My heart is aching.  
I miss your face, the touch of your fingers, your smile, your fusses, and your smell. 
I miss rocking with you all day long, listening to our favorite songs.  
I would give my life up in a second to be with you again.
No question about it.  
You were, are, and always will be the most important person in my life. 

  I love you Bubba.  
I miss you with all of the heart I have left :(

On your 4th birthday... 
Stephen and I planted a tree in our back yard in your honor.  
It is a 4 year old cypress tree.  
That tree makes me think of you 
every single time I look at it. 
It just started sprouting again this year. 
It's so cute and tiny. 
Do you send me all the birdies that land on it?  
Cause, if so, you can slack off a little if you want... 
I seriously can't afford to feed all of them, 
they're like little heathens ;)

I'm not sure why I didn't address my letter to you on the 4th year.  
It seems like it was a ongoing pattern. 
Instead, I wrote it to everyone who loved you.  
I guess I was just pulling at straws for some type of peace. 
Reading this letter again today made me sad.  
I really let my feelings rip on this one:

Once again, I am blown away and humbled by all of the support for my baby boy.
It means SO much to me.
I'm sorry I've been away for so long.  
I honestly don't even know if I can still write.  
I've sat down so many times in these past few months, but I just couldn't find any words to write.  
At least not any positive ones.  It just feels so wrong not to write about Tripp... and how his day was and the new things he learned or how he is doing.  I would give anything to be writing about those things again... and to be sharing new videos of his little spoiled rotten personality.

This Mother's Day was harder than last year.  To be honest, I feel like I was in such a dense fog last year that I don't even remember it.  Sometimes I impress myself at how strong I am.  But it's dangerous.  It's unhealthy for me to be so strong.  Because now, it's been a year and a half... and I'm flat-out exhausted from being strong.  It's tiring to act like you're okay when you're dying inside.  It's exhausting to smile on the outside when you are crying and screaming and kicking like a baby on the inside.  And the worst thing that I've done is pretend with the people closest to me, that I'm strong and I'm okay.  Because the people closest to me are the people that I should be the most honest with. 

My baby would be 4 years old today.  
I don't even know how to grasp that.
Today, 4 years ago, was the day that made me the happiest woman alive.  That's no lie.  I had waited my entire life for the day I would have a child.  And now, it's so wrong that this day makes me so sad.  I know there's no better place for my baby to be, than with Jesus in heaven... but I want him here, with me.  In my arms, blowing out candles, and opening presents.  
Moms, can you imagine only getting 2 birthdays with your baby and then never being able to see them again? 
 I'm heartbroken.  I'm nauseous.  I'm sad.  I'm empty.  
I'm all of those things and more.
In the back of my mind, I thought there would be a chance that I wouldn't get to spend his 3rd birthday with him.
But I didn't want to believe it.  So I refused to believe it.  
We lived for the day... actually, we lived for the minute. 
I'm haunted by the fact that my baby suffered so much.  It haunts me every day and it's so hard to cope with.  I know in my heart that I did everything I could... but did he know that?  Did he think I was a good Mommy or did he look at me as someone who would inflict pain by bathing him and bandaging him and suctioning him?  I just think how wrong and unfair it was that I lost my child and had to hold him as he took his last breaths... but also that our time together was interrupted by so much pain and suffering.  This is what I'm struggling to get past now that the shock has worn off and reality is pounding at my door.  As a mom, I did what I had to do to make my child happy and comfortable.  But as a mom, it also weighs SO heavily on me that Tripp had to endure all of the pain that he did.  And the fact that I could do nothing... just wears and tears at my poor (already broken) Mommy heart.

I sometimes try and picture what our life would be like if he were still here with us.  Stephen and I trying to decide what to get him for his birthday... and trying to decide where to have his party and what theme it would be.  But then I remember that he would be 4 years old.  We wouldn't have to decide those things... he'd be able to tell us exactly what he wanted and where he wanted to go.
God, how I long for that.  

It's hard to comprehend that I should have a 4 year old.... here, with me... every day.
That we should be starting pre-school and t-ball practices.  I should be washing little dirty boy-clothes.  I should be hearing the pitter-patter of little feet during the day instead of a dead silence.  I should be teaching him how to ride a bike.  I should be listening to my baby tell silly jokes that don't make sense, I should be waking up in the middle of the night because he's afraid of monsters,  I should be having to wake up at the crack of dawn to fix my baby breakfast instead of opening my eyes every morning, holding back the tears, realizing that it's true... it's not just a bad dream, that my baby really is gone. 
And EB took all of those things away from him, and away from us.
And the reality is... that maybe one day I will get to do some of these things with another child, but I will never get to do them with Tripp.  And as much as people try to tell me that it's okay- that I'll get to be a mom again one day- it's not okay for me.  Maybe one day it won't be the first thing I think about when I wake up, or the last thing I think about when I go to sleep... but it will never stop hurting.  It might hurt less... but that aching, empty feeling of missing my baby... will never go away completely.  
You cannot replace the loss of a child with ANYTHING... ever.  No matter what anyone says.  
Another baby will never replace Tripp.  Ever.  

And even though Stephen was already the most amazing "non-official" step-dad to my baby boy that I could have ever asked for, knowing that Tripp will never get to officially know Stephen as his step-dad, breaks my heart.  How is it fair that I finally meet the perfect man and someone who will one day be an extraordinary dad, and I don't get to share him with my very own child?

You know, I've been thinking hard about what I could say to help people understand.  
How could I possibly put into words what a bereaved mother goes through, just to simply try and help others even just for a minute... try to comprehend the pain.   
I don't think I can... but that doesn't mean I won't try.  

I've suffered a lot in the past few months with seeing other kids and other moms with their kids.  
And I really, really hope that no one gets offended by this, because I'm truly not trying to offend anyone, I'm just simply trying to explain how I feel.
Someone who has never had a baby of their own or who has healthy babies, or has never experienced the loss of a child... will never fully appreciate what a blessing it is to have a child.  I'm sorry, they just won't.  No matter how much they try, no matter how much they say they do... It's just human nature.
Of course they love their children and appreciate them when bad things happen to other people, but you can't fully appreciate someone until they are gone.  
For an example, I will never fully appreciate what it means to be a healthy human being- because I've never been seriously ill, or disabled, or paralyzed, or had a disease or been in a bad accident, etc. 
Or I will never fully appreciate what it means to have my eyesight... because I've never known what it's like not to be able to see. 
 However,  I believe that I fully appreciate what it would be like to have a perfectly healthy child, because not only have I experienced having a child who suffered a cruel and debilitating disease... I've also experienced the loss of my child. 
It's just a fact.  
You don't appreciate something or someone until they are gone.
And I'm not going to lie, it hurts to be around other moms and their children.  
Especially ones who aren't sensitive to your feelings.  Who (figuratively) dangle their children in your face ...or feel the need to talk about their children constantly in our conversations.
  It's just not appropriate.  I'm sorry.
And no matter how much someone thinks I should be over it... like I already said... 
I will never be over it.  
And I'm sorry if it makes you uncomfortable, but I'm uncomfortable every day.  

Sometimes I just wish that people would be a little bit more aware of their surroundings and the people that they are associating with.  If you are hanging around someone who recently lost a child, you wouldn't gripe or complain about having to do something for your child or talk about how bad they are.  You wouldn't talk about how much you miss your child who's been away for the weekend (when the person who lost their child has missed them every day since they have been gone and will miss them for the rest of their life).   That's like being around someone who is blind and asking them to look at something you see.  It's inappropriate.  That's common sense... or at least to the mother who lost her child or the person who is visually impaired, it seems like common sense.  I know It's hard for people to understand, because the fact that I have lost my son and that I'm sad all the time, is not something that is constantly on other people's minds (like it is on mine).  And like I've said, I know that before I lost Tripp, I was also oblivious to other people's feelings.  But now that the unimaginable has happened to me... it's hard sometimes to think how people can be so oblivious, especially people who have children and KNOW what that type of love it is. 
 Imagining having that love and then losing it.
That's a hard thing to imagine.  And trust me, it's a hard life to live.

My goal lately has been to try to be more open about my feelings.  To try and let other people know when I'm upset or when something they say is inappropriate to say to someone who has lost their child... to be HONEST... but I'm failing miserably.  It's hard.  It seemed so easy to tell other people how I felt when Tripp was still alive.  It was so easy because all I cared about was what was best for him... and if someone didn't like that, well then too bad for them.  But it's not as easy when you're trying to take care of yourself and what's best for you.  At least not for me, it's not.  

So as I celebrate my son today (with an aching pain in my heart and in my arms),  I ask you to celebrate him, too.  By hugging your children extra tight, or telling someone you love them, or just being extra nice to someone today.
Stephen and I, along with my parents and his parents... will plant a 4 year old cypress tree in the back yard today, in honor of my baby's 4th birthday.  And I will watch it grow.
And then we will watch his videos... and laugh and cry.
And I will wish -so desperately- that I was able to watch my baby grow.

I'm so sad that I will never have new videos or pictures.
Even though I took thousands, it will still never be enough.
Oh, how my heart aches to hold him again.

Happy 4th Birthday, my Bubba.
Mommy can't wait until I see you again.

So, maybe I'm just writing this long post so that I can reminisce.  
Because I want to remember what it was like 5 years ago when I held you in my arms for the first time.  And I want to remember what it was like to celebrate such a huge milestone like your first birthday.  
I want to remember all the little things you used to do.  
Our songs we used to sing and our stories we used to tell.  
I want to remember you.  
I don't want those things to fade.  It's terrifying that I might forget something that we used to do together.  I know you hated when I took all those pictures and videos of you... but I'm not sorry- because I need them now more than ever.  I need to be able to see you and remember the things we did together.  They are all I have left and I wish I had more of them.  I would have videoed your entire life, I think, if I knew 2 years and 8 months was all I was going to have with you.  

I'm trying to hard to heal, Tripp.  
I tell myself every day that you are in heaven with God and that you don't need me anymore.  And I know that is true.  I know you are pain free and happy... and your little hard-headed self probably never once looked back to check on me.  I know that I was the best Mommy that I could be for you and I know that my job was short, hard, and so rewarding.. and that now it is over.  I know that God sent you to me because He knew that I would give my whole heart and soul into taking care of you.  I just wish my whole heart and soul didn't HURT so much right now.  I know that is the price you pay for loving this much- so I'll take it.  I'll take the pain because the more pain I feel, means the more that I loved you.  I'm certain that I loved you with "all of me." And I guess that is why "all of me" hurts now that you're gone.  

I know you're in a better place rather than this mean ole' world we still live in.  
There have been SO many days that I have wanted to leave this world and come be with you.  
But I know that my time isn't over and that I have other duties left to fulfill here.  

Can you do me a favor, though?  
Can you keep sending me those little signs to tell me you love me?  
All those little signs that come up when I'm having the WORST of days. 
Like little butterflies that randomly fly over my head. 
Or people who recognize me out of the blue and tell me that you changed their lives. 
Or all those little signs you send that I know are just between me and you.  
I love them so much.  
They help me survive.  Honestly, they do.  
They stop me in my tracks and help me to remember that even if you aren't the one watching over me every day... surely the big guy is. 

I know that I will see you again one day.  
I CANNOT imagine what that day will feel like.
And I can't imagine that anything in the world could make me happier.  

I hope we are both dancing like this. 


I love you, you sweet sweet boy.  
And I miss you with every fiber of my being.
Every single day of my life.  




  1. God Bless you Courtney and Family. Happy Birthday to that sweet angel!

  2. Man...that boy had RHYTHM!!! LOVE that video!!
    Happy Birthday little man!!!!! I am so glad that your Mommy shared her heart, you, with all of us. I am one of those people who's life was changed forever by knowing you through your Mommy's eyes and through her heart. You have helped make me a better person, helped me deepen my faith and helped me to love others a little better.
    Thank you Tripp and Courtney for the gift you have given to all of us!
    Many blessings and prayers always to you both during this temporary separation from each other!

  3. I've been reading your blog since stumbling across it shortly after it started. I felt an instant connection as I have a daughter who was born the same day as Tripp. Each milestone she hits makes me think of your sweet, brave, boy and reminds me to pray for you. I know there's nothing to be said that would make any of this easier for you, but I just wanted you to know there is someone you've never met who is praying hard for you at what would have been all of Tripp's birthdays and milestones.

  4. Happy birthday to the bravest most adorablw boy. U were the best little dancer ive ever seen. I hope u send ur momma a sign today to ease her heart. Love u baby boy

  5. Happy birthday little Tripp! Please keep smiling down on your mommy and us all from heaven. I know your one of God's sweetest angels.

  6. Thank you Courtney.. thank you for sharing the journey that you and Tripp shared together.. for those moments that as a mommy, are truly cherished (even when it makes our child upset .. lol!!! ) You show and have such amazing strength.. believe that Tripp's soul is with you everday.. and I do believe that he sends you those little signs.. that he sends all of those birds .. that's his way of making up for you not having all those dirty clothes :0) Take care, god bless. Someone wise told me that the hurt and pain of losing a child never goes away or subsides.. but you merely learn how to cope. ..

  7. I'm one of those people whose lives were changed by this little angel. Thinking of you on this most difficult day.

  8. My thoughts and prayers have been with you Courtney and your family. Every year at this time I set aside time to honor Tripp in small ways. I thank you for sharing him with us Courtney. He has accomplished so much in his short time on earth. He's left such an impression on my heart. I'll never forget him. I smile through tears when I watch the video of him dancing.

  9. What a fantastic post Courtney, I want to thank you so much for your openness and honesty in all your posts. Your honesty with your feelings and emotions has helped me with helping a family friend through loosing their daughter. Jesus Im sure throws the best Birthday Party's ever! and how great to know your little boy is pain free, and dancing and laughing with Jesus. I pray for you the family and friends who , the ones that are left behind and for your faith on the hard days, on the good days, on the rainy days, on the sunshine days and always on the birthdays.
    God Bless,
    From Ireland xxx

  10. What a fantastic post Courtney, I want to thank you so much for your openness and honesty in all your posts. Your honesty with your feelings and emotions has helped me with helping a family friend through loosing their daughter. Jesus Im sure throws the best Birthday Party's ever! and how great to know your little boy is pain free, and dancing and laughing with Jesus. I pray for you the family and friends who , the ones that are left behind and for your faith on the hard days, on the good days, on the rainy days, on the sunshine days and always on the birthdays.
    God Bless,
    From Ireland xxx

  11. Oh Courtney, so beautiful and so sad. I followed your blog and have cried so many tears reading about what Tripp and you endured. The pain that no one should have to feel. Tripp and you made a big difference in a lot of lives including my own. Praying for you and thinking of Tripp today (and always).

  12. I just couldn't read it till the end... This made me cry. I know I can't even imagine how are you feeling... I have to say that Tripp changed my life. Reading your blog and learning to know you and Tripp has changed my life. You have taught me so much! I'm praying for you everyday, you are so strong and inspiring person. Blessings from Finland, may God be with you Courtney.

  13. Happy happy birthday Tripp. Thinking of you and your SWEET momma today. God bless you both. xoxo

  14. Happy 5th Birthday, Tripp! You've changed so many lives! Thinking of you Courtney, I hope you feel God's love around you. You will be in my prayers.

  15. My heart breaks for you, but I KNOW your heart will go on, and on, and peace and joy will find you.

  16. Happy birthday in Heaven sweet and beautiful Angel Tripp! You changed my life for the better and you reached so many things! Praying and thinking of you and your mum today and always!

  17. Courtney,

    You are an amazing woman to be able to still be able to be share with us. Prayers for you today, on this momentous day!!



  18. Hi Courtney, I found your blog in 2011 when I was pregnant with my first child, my son, Heath. I've followed yours and Tripp's story ever since. As a fellow mommy, my heart breaks for you over the pain you've had to endure watching your child in pain and then watching him pass away. I had forgotten today was Tripp's birthday, but something told me to go to your blog and I re-read some of your past entries. Then a little while later I was checking my email and you had just done a new blog post about today being Tripp's 5th birthday! I thought wow, it was meant for me to go to your blog and think of you and your sweet boy today of all days. Just know that you and he are not forgotten and are forever in our hearts and thoughts.

  19. Today is also my daughter Ashlyn's 5th birthday. So today, as we have every year, we will celebrate Tripp's birthday, too. They will forever be Birthday Buddies! You are in my prayers, Courtney. Thank you for reminding us how precious life is.

  20. Oh how Tripp loved music! It is so good to see this sweet video of him dancing. Happy Birthday, Tripp. You are loved and missed very much. Courtney, you are loved and prayed for very much, too.

  21. Hi, Courtney. :-) There's so much I want to say but don't know how; however, there is one thing I NEED to say so I'll get to it. I have a friend who has a little baby boy with an undiagnosed skin condition. She's having a hard time with his current doctors at a nearby children's hospital so I was hoping you could help me out and give some names of good doctors who would do their very best to find out what's going on with this little boy. :-) I'm not sure if this comment will send you my email address but, just in case it doesn't, I'm also following this thread so I'll get notified of any comments.

  22. Happy Birthday to Tripp. I have come to think of you and Tripp as family Courtney and continue to pray for you. Congratulations to you and Stephen on your marriage and I look forward to reading how your life will unfold in the coming years.

  23. I know it is a lot to read, but it is worth reading, I promise!
    I have not posted in a while. I have been overly depressed. I do not even want to talk about it. God and I are managing it together and I will get through it. (tears streaming down my face) --> But, I want to share a blog with you guys... about a little boy that loved Elmo, and played the drums like a PRO, his name is Tripp Roth. He is in heaven now celebrating his 5th birthday ... this amazing soldier... he changed my life in so many ways.... I remember seeing an image of 2 small hands holding a tiny Elmo figurine and the image read "Pray for Tripp Roth" ...This was the first image that I found, 5am after giving birth to Ben JR at 1 am &...... After Dr Harrison cried her eyes out she told us that she thought Ben Jr was born with EB and they were landing a helicopter to transport him to St Pete.... the nurses and all warned me... do not Google Epidermolysis Bullosa (EB) well... I goggled "EB" and I found Tripp... Oct 2011 during EB awareness week 4 hours after giving birth to our son...... Thank you Courtney, this blog was amazing. I pray for you and think about Tripp every butterfly I see... and many other EB families come to mind as well... Happy birthday baby!
    -->Ben Jr... he is one of a kind, a ham, a gentleman in the making.... I cannot imagine this life without him. I cannot imagine that strength that any parent has to have to live daily knowing that they lost a child to a condition that was so painful and terrible as EB. I hate it. I hate every damn thing about EB it makes me sick... literally. My son and so many others go through so much daily... I just wish I could take it away.
    At 2 years old he holds his own gauze, he knows what ointments burn, he actually takes the medicine dropper and gives himself his medicine, he is cautious with everything including putting on socks, at 2 years old he can take a needle and pop his own blisters(while mom watches), he actually says "thank you" after dressing changes because it is a relief to him that were done and he does not have to sit there anymore or have anymore blisters lanced, the only person to ever tell his daddy "No" & mean it, know the exact words to say to get out of trouble, the vocabulary of a 5 year old, break dances at random moments, with a million dollar smile. .. at only 2 years old he is STRONGER THEN ANY MAN I have ever known. I salute him. Yes he is spoiled, he is a mess. He is everything that I could ever have asked for in a son.. spitting image of his daddy with eyes like his momma.... our soldier... He and God have a plan and we are honored to help and be a part of it.
    Thank you Courtney for posting this... it is my thoughts exactly...
    "There is absolutely NO disciplinary action whatsoever in this house. You do whatever you want, whenever you want, however you want and with whoever you want. And that is the God-honest truth. I love every minute of it. And you deserve every minute of being as spoiled rotten as you are.
    There are big big plans in store for you, my boy. And each day that you are here, I believe in my heart that you touch another life. You have so many people across the world who are praying for you- people who have never even met you but write me and tell me that you inspire them. You wear some big shoes, buddy... shoes that many of us could never dream of walking in. And you sure wear them well.
    You are what I live for."

  24. Happy birthday Tripp. I am so sorry you and your mommy can't be together on your birthday, but both of you were so lucky to have each other.
    As another commenter said, you sure had rhythym!

  25. Beautiful! You are incredible and Tripp is too. Reading his story did change my life, and the way I spend time with my children. You are both an inspiriation.

  26. To Tripp: Happy 5th Birthday, Tripp! We all know that God gave you the biggest and best fifth birthday party in Heaven, better than any little boy could imagine here on Earth. Your mommy may have a hard time believing it, but I know that she is on your mind and in your heart every second (in happiness, not sadness), and that you look after her and help God send her peace and comfort when she is struggling. I'm grateful that God has made you perfect and whole in Heaven, free from the pain and suffering of EB. Nobody deserved that more than you, baby boy. When your mommy gets to Heaven, remember to give her the biggest, hardest and most embracing hug that EB wouldn't let her give you down here. She deserves a million hugs and more.

    Courtney: I'm so sorry that you are not able to celebrate your little man's fifth birthday with him here. It just isn't right that a mom should have to celebrate her child's birthday at his grave site. I am so sorry that EB not only stole Tripp from you, but that it stole two years and eight months of normalcy in his and your lives. I hope someday you do believe that EB did not win: Tripp won. First because EB was "supposed to" take Tripp by his first birthday: EB failed, and failed again at his second birthday. EB failed to take Tripp's spirit, heart and love; it failed to take away the fighter in him, his stubbornness to overcome and his ability to laugh and smile despite the pain and suffering. Tripp got to go to Heaven, where EB cannot and will not ever touch him again. It failed to steal your love and adoration for Tripp, and your willingness to fight for his life, comfort, happiness and enjoyment with every fiber of your being. Though Tripp is now in Heaven, you ARE stronger, more loving, caring, accepting, sympathetic, empathetic, courageous and forgiving as a mother, daughter, wife, friend and person. So EB did not win, Courtney, and someday, the hard working doctors and researchers will discover the cure, and EB will never, ever be a cruel player in any child's life again. I am sorry that Tripp is no longer here with you. I can't imagine that pain nor do I want to. While Tripp was your hero, you are mine. I know of no other woman who has gone through what you have and not only come out of it alive, but better for it. You are someone to look up to and aspire to be like every single day. And while I hope that you live a long and happy life with Stephen by your side, I also hope that God and Tripp give you the biggest and best welcoming and reunion at the gates of Heaven when it is your time, as He has promised:

    "And the God of all grace, who called you to His eternal glory in Christ, after you have suffered a little while, will Himself restore you and make you strong, firm and steadfast. To Him be the power for ever and ever. Amen." (1 Peter 5:10-11)

    Thank you for sharing your life with all of us Courtney, and for being a Christian woman that all of us look up to and aspire to. It is our honor to know you, and to have shared in Tripp's life. I hope it makes you smile to know that I speak of Tripp often and share his story with everyone, any chance I get. He isn't my son and I never got to meet him, but I am equally as proud of him and his fight. I never want people to forget your incredible little boy.

    With love and faith,
    Mel from Washington

  27. Courtney,

    So glad to read your words of love and tribute. As always, you touch my heart and I see the reflection of Christ in you.

    My heart continues to ache and to be broken for your loss and all that you carry; yet I am rejoicing in your new and stedfast love. Your love and missing Tripp will never end, but oh, I do pray that your days ahead will also be filled with blessing. Thank you for continuing to write as you are able,

    In Jesus' love,

    Holly Johnson

  28. Courtney,
    Every time you post you never fail to touch me so deeply. My heart literally aches for you. I had to pause in the middle of reading this post and wipe my tears. My best friend struggles with EB also, and it is so hard to watch someone you love suffer and knowing there's nothing you can do to help. Just thinking about how much pain you go through each and every day, how wonderful of a mother you are, and how absolutely precious Tripp is. He is definitely a blessing. He made this world a better place during his time here, and he sure is blessing the beautiful place he is now. I am sad that I never got to meet him because he was such a fighter - someone who went through so much in so little time but continued to be strong. He is also my hero, and I think of him quite often. I know that nobody's words or condolences or prayers will ever heal you, or even make it okay, but I do hope that everyone's support makes you feel (even just a tiny bit) more at ease. We all love you and Tripp dearly. I know how proud you are of your baby, and that you should be, considering he touched the hearts of many in such a short time! He really changed the world of the people who knew him, even just from reading about him. I know he changed mine. He really inspired me, as do you. You and Tripp's strength continue to help me throughout my life, and I look up to you both. You are the type of amazing mother I hope to be one day. I'll never forget Tripp and his beautiful smile, and his obsession with Elmo.
    He is looking down on you and smiling. I have never felt so much love for a stranger. I feel like I know you... Maybe one day I will.

    You are a beautiful person. I love you and Tripp!
    Shelby xoxo

  29. Thinking of you on this anniversary. Hugs and well wishes.

  30. Thank you for continuing to post. You and Tripp are an inspiration to me. I found your blog after hearing about you from my in-laws. My wife's family is in Ponchatoula. That was 3 years ago and I have been following your story since. In the past 3 years my wife and I have had two kids, and I think about Tripp often. I am thankful you got to celebrate birthdays with him, and I am encouraged you continue to celebrate his life. He is most certainly worth continued celebration and so are you. I look forward to hearing more of your story as life progresses. You are in our prayers and thoughts, and if you ever need anything, feel free to ask.

    Josh Zello

  31. Oh dear, I'm spilling tears onto my keyboard. This post is beautiful, heartbreaking and beautiful. Watching the YouTube videos of your precious Bubba made my heart swell and ache. I ended up clicking on one where you told him to touch his nose, you sang Elmo's song, etc. I'm BLOWN AWAY by how SMART your Tripp was! I have three kids and they couldn't do those things as accurately at that age even without any disabilities.

    It's very clear you are an excellent mommy, he was so lucky to have you caring for him during his short life on earth. I see the blessings everywhere. Happy Birthday to you in Heaven, Tripp!

  32. I come here every few months to see if you have wrote anything. Every time I come here I cry with you and my heart breaks for you. I have a soon to be five year old (June 13th) and I couldn't imagine not having him talk my head off every second of the day. I still let him get in the bed with me because, I feel safer knowing he's with me. I now have a seven month old son also.

    My sister had a baby born two months early. He had down syndrome, a heart defect, and was missing a part of his brain. He passed away when he was only seven months old. After spending all but three weeks of his life in the hospital. He wasn't my child but, I think a part of me still went with him. I still think about him and despite his limitation wonder how much we would of learned from him had he still graced us with his presence here on earth.

    I see you are now married. Congrat's!! May you have a long, love filled marraige. You deserve that and so much more.

  33. I am so sorry for the 'slap in your face' reality of it all. I understand those moments all too well. I remember trying so hard to create those birthday (holiday, gosh...fill in the blank) moments and in one quick second (or actually many times over) being 'slapped' It could be brutal.

    Every vision I have of Tripp now is nothing short of beautiful! But...I am so sorry for the everyday heartbreak that goes hand in hand with his being free.


  34. OMG Courtney, this made me cry but the end with the video were tears of laughter,what a precious little boy he was!

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  36. This is so beautiful and heart wrenching. I bet Tripp has learned some awesome new dance moves in heaven for his fifth birthday. He is so missed! My heart goes out to your family. I hope this year brings you peace and happiness with your little man always in your heart.

  37. Courtney: I was thinking about you and Tripp and decided to check your blog. You have inspired me as a woman, Mother, Christian etc since I started reading your blog in 2011. You and Tripp have touched me very deeply (although we have never met and most likely never will) you have changed the way I think, parent and interact in this world.

    Thank you,
    Joanna (Joseph, Jude and Joelle)