To my baby on your 3rd birthday,

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, THIS is what I have to do to honor your birthday- I did this before I left to come to New Mexico to see your Nanny.  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 :(

Love,

 Mommy

*Anyone who would like to honor Tripp for his birthday can make a donation in his name to the Butterfly Fund.  Just click the link and there are several options for donating. 

I know Mrs. Laurie, Mr. Michael, Allie, and the board of directors for the Butterfly Fund will be thrilled for the help to make some of the family's lives just a little easier. 

I know that is what Tripp would want for his birthday. 

Thank you all SO much!

That can't happen fast enough.

I've come to the conclusion that I am one really lucky girl.  Reading all of you guys' comments is honestly a really humbling experience.  I know I've said this before, but I really cannot imagine going through what I went through and what I'm still going through without the support that I've been given by all of you.  Not only the comments on this blog, but the emails and the actual handwritten letters people are sending to me.  It's so comforting.  I'll be honest, there are some days when I get letters and I just don't feel like reading them... I think these are the days when I'm feeling semi-okay and I guess I don't feel like working up a pity party.  But I set the letters aside until that moment when I need a really good "pick me up" and I want to lay my fist into the wall.  Those letters sure do come in handy.  They remind me of Tripp's purpose here.  They remind me of the love and care I gave to him that sometimes I forget when I'm so frustrated, sad, and mad.

Oh, your letters are so kind.  They really are.  I'm not sure what I ever did to deserve so much love and support.  But I'm pretty sure it was the angelic little face and personality of my baby boy that made you fall in love.  Whatever it is, I thank you... from the bottom of my broken heart! 

I know I asked you guys what I could blog about because I was having a hard time trying to come up with something to say besides "I'm just plaid SAD."  But I think right now I want to try my hardest to explain to everyone how I'm feeling, as best as I can, because I think it will help me a little too (gosh... that is selfish, right?) 

Ok, so just maybe a brief summary...

I think I'll start by saying something that I'm not sure if I've ever said.  You know how the doctors told us that Tripp wouldn't live to be a year?  And you know how I watched as other EB babies passed away who were Tripp's age or younger or older?  And do you know how I would say in my blogs that I knew I didn't have forever with him and that one day I would lose him?  

Well, I never, ever believed that.  That's the honest truth. 

 I could say it a million times in my head and try to prepare my brain for it- but never could I picture my life without him.  Maybe it was because I literally spent every, single, waking, (and sleeping) minute trying to keep him alive, that I really and truly thought that we were going to win.  I honestly thought that we could beat EB.  I put my heart and soul and every single ounce of energy I had into keeping my baby alive.  I tried every possible option that I could to keep him with us, all the while telling you and everyone else that I knew the day was coming when he would leave me, and not believing it myself. 

 And with that being said, I was totally UN-prepared for what was to happen.  

I know everyone on this blog has seen Tripp's pictures and watched a few videos.  But I really want to focus on what an absolutely amazing human being he was.  Super human in strength, so wise beyond his years, smart as a whistle, talented in music, and had the most incredible personality of anyone I will ever know.  He was always happy.  As a tiny infant, and as a two and a half year old.  He literally only cried when he was getting a bath or a diaper change and he was in pain... and sometimes he didn't even cry for that.  I tear up every time I talk about him this way, because it's so important that people know this about him.  You couldn't help but be in love with him.  He was funny.  He couldn't talk and never in his short life spoke one word, but made me laugh and smile more than anyone ever has.  He made me the happiest girl in the world.  This may sound silly to you, but since he was very small, he was always in tune with my feelings.  He always watched out for me.  When I was happy, he was happy.  When I was sad, he would stop in his tracks and shut down.  Like he was genuinely concerned about me.  He did this with me up until his very last days.  

He always took care of his Mommy.  

There's so much to learn about life from this little angel.  

There was a period about 2-3 months before Tripp passed away that is almost impossible to describe.  We were EXHAUSTED.  Everyone.  Me, my mom, Mrs. Pam and mostly- Tripp.  This was crunch-time for me.  I knew he was getting sicker by the day.  I could feel it.  I knew when he starting interacting with us less and less that I had to step-up my "Mommy" game.  This was when I started talking to the doctors in Minnesota about the Bone marrow transplants.  Dr. Tolar said that in order to know if he was going to be able to perform the transplant, he would have to talk to me face to face.  Now mind you, at this point, I had only left Tripp overnight one other time when he was about 3 months old (before his trach).  So I was a tad bit nervous (and so were my mom and sister).  So Stephen and I booked tickets to MN, had a meeting with Dr. Tolar, and together decided that the BMT was not an option for Tripp. 

I was DEVASTATED. 

Of course I didn't want Tripp to have to go through more suffering and poking and prying... But now- there are  absolutely NO options left.  There is no feeling like watching your child suffer and being able to do absolutely nothing about it. 

So now what?  Well when we get back after being away for about 24 hours, Tripp was MAD.  He wanted me in that rocking chair pronto.  And then after that day, he didn't trust us.  I think this started his anxiety issues.  He would "switch rockers" literally about every minute or less.  I think he was nervous about someone leaving him again.  So he cried and fussed constantly.  Reaching up in the air to "switch off" as soon as mom or I got in the rocker.  

I don't know if I've ever described this either, but for the last 6-8 months of Tripp's life, he went straight from the rocking chair to the bed- barely getting up to play.  This meant that neither mom or I could even be alone with him (what if we needed to go to the bathroom.. or eat?)  But what I call "switching rockers" meant that whoever was rocking him, actually stood up, lifting him up lying down (on pillows sewn together) and placed him in the arms of the next person who sat in the rocker.  This is how he "made" us do it because he felt too bad to stand up.  

And so then I went into Survival Mode: AKA-

 "These **** doctors are not going to be right and

 this **** disease is not going to take my baby from me." 

We started trying everything... essential oils, topical vitamins, bathing him in "tea baths,"and even something called "miracle gel."  His sores were getting worse and healing them was impossible. 

Then he started with his feeding and belly problems.  Every time I would feed him, he would cry, hold his belly, or even throw up.  I still to this day don't know what was wrong with his poor belly.  Maybe it was also covered in sores like his whole little body (makes me sick and sad just to think about that).  But at this point, I tried everything imaginable to get nutrition in him... but it wasn't working.  No nutrition meant more sores, which meant he was in more pain.  So Dr. Defusco, Trea (Tripp's pharmacist), and I worked overtime trying to come up with a pain and anxiety medicine regimen that worked for him.  What a nightmare.  Bath time was an absolute nightmare.  There were times in the last few weeks that I prayed and prayed that my angel not have to live through another bath (and then when it was over, I would pray and pray that God not listen to my previous prayers... poor God was probably as confused as I was).  The trouble we had was that we weren't sure how much of the medicine he was actually getting because we didn't know how his little body was metabolizing it.  If his stomach and intestines were covered in sores, then how could he be absorbing it?  Oh, it makes my heart ache to think of the pain he was in. 

The last 2-3 weeks of his life were unbearable.  They seem almost like a blur to me today. 

I know that when Tripp stopped fighting, I was devastated.  I could tell that he stopped fighting when he wouldn't fuss us... he couldn't lift his arm to ask for a new toy... and he was so swollen, that he couldn't hold his Elmo.  It was only at this time that I started feeling like maybe I really wouldn't have my baby forever... maybe he was actually getting tired.  But I was still never able to picture my life without him.  Maybe at this point was when the "shock" set in.  Or maybe it was that my heart was literally broken and shattered into a million pieces.  

The night before Tripp passed away, I honestly didn't expect a thing.  I knew he was swollen and less responsive, but he had been SO sick SO many times, that I just didn't know what was ever going to come.  As far as I knew, he could have held on for months longer and bounced back... 

But for some reason, I woke up around 2-3 am- he didn't wake me- he was sound asleep.  I just woke up on my own.  His little body so swollen and propped up on blankets and pillows.  

I talked to him.  For hours.  I held his precious, swollen hand and I told him every possible thing that I could think of to tell him.  I told him how unbelievably proud I was of him.  I told him that never, ever could he possibly know how much I love him and how much of a better human being he made me.  I told him about my grandpas and how I knew one of them was up there waiting to ride him on the tractor, and how the other couldn't wait to finally meet him and sing "Long ago and Far away."  I cried and cried.  I said rosaries.  I talked to God.  I talked to Mary.  But most importantly, I told Tripp that it was okay for him to go.  That finally I was being unselfish enough to know that he couldn't fight any longer... but how PROUD I was of the fight he had.  How PROUD I was to be able to be called "Tripp's Mommy."  What an incredible honor it was to be able to be his Mommy. 

I promised him I would be okay.  And I promised him that his suffering would never be in vain. 

And then I fell back asleep.   

Only to wake up a couple of hours later to what I knew was the time. 

He was dying. 

I knew it, I could see it, and I could feel it. 

His skin was tinted blue.  

That skin that I kissed, cleaned, wrapped, and loved for 2 years and 8 months to the day... 

was turning blue. 

There was nothing I could do.  

He wasn't crying.  He was only breathing heavier by the minute.

And he wasn't responding to my voice or my touch.  

God woke me up at the exact, perfect moment... I'm certain of that. 

I ran to my mom's room and got her up.  I told her it was time.  

I picked up his heavy, lifeless body out of bed for what I knew was the last time. 

I sat in the rocking chair with him in my lap... my mom behind his head, sitting on the couch.  

We waited no more than about 3 minutes... rocking him and telling him it was okay... 

 and he took about 3 heavy, deep, gasping breaths. 

And that was it. 

He was gone. 

My heart, my life, my best best friend... was gone. 

In what felt like seconds.  

Something left me at that moment.  I can't explain what it was, but I will never in my life be the same.    I'm here to say that there is NO other love that could ever compare to the love you have for your child... or at least the love I had for my child.  

And that leaves me to today. 

The aching, torturous, minutes of every day.  

The nights- oh the nights... I dread nighttime.  I completely dread having to crawl in bed without my little man next to me.  I look at all of his bedding... the same bedding that was there the day he left me.  I look at his pictures hanging on the wall and I get a terrible, nauseating feeling in my stomach.  I hate having to live in this world without my baby.  It is complete and utter torture.  

And the people I see, bless their hearts, they don't understand.  

How could they?  

But they try... they ask how I'm doing, and me... I nod and say, "I'm fine." 

I'm a strong woman.  I know that I am.  

But I'm not okay.  Not right now. 

Am I living?  I guess... I'm keeping busy and putting on my happy face.

But losing a piece of your heart... sucks.  Bottom line. 

I'm trying to think of any way to describe what I'm feeling at this point. 

Lost, devastated, sick, mad, angry... 

Seeing parents pushing their kids in the grocery cart at the store is hard. 

Seeing kids in church is hard. 

Seeing any little boy and picturing what Tripp was or would be like at that age is hard. 

Seeing kids PERIOD, is hard. 

But what really irks my chain is when I (secretly) watch parents who are so ungrateful for their children.  Children are such a blessing.  I wish all parents would treat their kids like every single day was the last day they were going to see them.  Not every one is ABLE to have kids, and not everyone is gets the honor of being able to watch their kids grow up.  It's a gift.  I wish people would treat it that way.  

I will never be able to see my baby's first day of school. 

Or his graduation. 

Or see him get married. 

Or have kids of his own.  

There aren't words to explain what that feels like. 

I've said this before... but when you spend every second of your time and every ounce of your energy on loving and taking care of your only child... and then all of a sudden, he's taken from your arms-

It's sickening, gut-wrenching, and totally unfair.

And I never have and never will say "why me?"  Because if Tripp wouldn't have been given to me, I never would have known what true love was.  I never would have appreciated "life" (I'm talking about REALLY appreciating life).  If he wouldn't have been given to me, I would still be in my own little world, living what I thought was my perfect little life- oblivious to what was going on around me.  And if Tripp wouldn't have had EB, I wouldn't have gotten to spend every single second of his life with him, knowing and loving every inch of his little perfect body.  Maybe I would have missed out on something special that he did... if he would have been a healthy baby.  And if Tripp wouldn't have had EB, I never would have known that such a terrible disease even existed.  

It sucks that my angel had to suffer just for all of these things to happen.  

I think of him as a little warrior for Jesus... carrying his horrendous cross here on Earth and now ecstatically celebrating in Heaven over what he has done.  

I get that.  I understand that.  I'm not mad at God.  

The problem is that I want to be there celebrating, too.  

Why should I have to stay here when my baby is in heaven?

That's where I am right now and what I'm trying to figure out.  People can tell me all they want that I "have a purpose" and "I will do great things for EB."  

And maybe one day I will.  

But right now- it's just hard to wake up every day and actually survive... 

Much less do anything productive. 

I feel like I'm walking around life-less.

My only goal now is to get to Heaven.  

And that can't happen fast enough.   

Tripp's beautiful butterfly garden, planted by Grammy. 

Oh, how I miss those big brown eyes... 

And these precious feet. 

And what I wouldn't give to be able to hold these hands in mine again. 

Love, 

My pathetic posting...or lack thereof.

Well, it's been almost a month since I've posted, so I guess it's about time to spill the beans again.  I think I've been avoiding my blog posts because I hate being a negative "debbie downer." But I don't like to be fake, either.  I just think I'm at the stage (if there are really even stages) where I'm a little frustrated.  Ok, so I'm angry.  And I really don't like that I'm angry.  I just find myself thinking about things a lot more now.  I find myself saying "it's not fair" a little more (which isn't really like me).  I think at first I tried so hard to just shut everyone and everything out... and not even think about things because thinking about everything that just happened made me so incredibly sad beyond comprehension.  And I just didn't know how to express my emotions or sadness.  Actually, I still don't know how.  But I know that if I don't try, I'm going to explode.  

I'm at the point now where it's so hard to see little boys that would be around Tripp's age, with dark hair and dark eyes, hugging on their Momma's leg in church...  It's hard to think that at the age of 3, Tripp would have been talking up a storm, probably giving me hell because he would have been so spoiled rotten.  I want that so bad.  

It's hard to do anything without picturing Tripp there with me.  And longing for him to be there with me. 

I don't even know what he would have looked like at age 3... because EB took that from him and from me.  For the last year of his life, I didn't get to see his pretty brown eyes. 

It pretty exhausting holding things in.  And it's exhausting pretending like I'm fine. 

How in the world could anyone be fine after losing the only person they wanted to live for.   

That's why I finally broke down and found a counselor.  I had my first session with her last Wednesday and I have my second session tomorrow morning.  I'm hoping that if anything, it will at least allow me to let out my tears and emotions.  Because I certainly don't do that enough.   

The first session was mainly about us meeting each other and then me summarizing the past 3 years for her.  So pretty much.. me crying and talking, and her just listening... it went well.  I think she will be a blessing to me.  

The main thing that stuck out to me that she said in our first session is that I am putting up a "Me and Tripp" wall.  She said that by me not sharing my feelings (my TRUE feelings) with the people closest to me, that I am putting up this wall that doesn't let anyone else in.  And that's not good.  The people who are there for me everyday want to help- they want me to open up.  And I'm not letting them in.    

That is going to be something that I will have to practice... because I'm terrible at letting people in.  Somehow, it's easy for me to sit behind a computer screen and let you know what I'm feeling, but it's another thing for me to be able to open up face to face.  I'm just so used to having to "hold things in" that I'm clueless when it comes to "letting it out."  But I think it's one thing to share my feelings with the people closest to me (my family, Stephen, close friends) but I feel like I shouldn't be real all the time... or should I?  Would it help me or not?  Who knows... Like when I see someone and they ask me how I am, and my instincts say "I'm good... how are you?"  Then I think to myself... "of course I'm not good... I'm terrible, I just lost my whole heart... how could I be good?" I guess I just don't feel like it's fair to people for me to be honest about how I really feel.  People ask that to be respectful and kind, really not knowing what to say.  I hate to just "lay it all out" on them.  But then on the other hand, I feel like its unfair to me to have to pretend like I'm okay when other people still have their kids and their life continues, but my child is gone and I feel like the world should just stop.  

Is any of this making sense?  I will stop rambling... 

Today I spent 3 hours with some pretty amazing people at Amite Marble and Granite.  I'm not sure if I've mentioned this before, but it just so happened (actually I believe God planned this all along) that Tripp's amazingly wonderful pharmacist, Trea, also has a pretty amazing father who owns a marble and granite shop and makes headstones for a living (coincidence?... I think not).  

So, after thinking really hard for 3 months about how I could create the perfect monument to honor my baby, I finally got to design what I wanted with the most kind, patient and amazing people. 

That has to be one of the hardest things on the planet... to have to pick out a headstone for your child.  No one should ever, ever have to pick out a headstone for their child.  

But I know that you will all love what I have decided on.  And I don't think I could have picked something better than I did.  We only have the rough draft drawn up, and it will probably take about 4-6 months to complete, but I am pleased so far with what I have chosen.  

I can't wait to share it will all of you. 

It just might involve someone's favorite furry red friend...  

May 13th is Mother's Day. 

May 14th will be Tripp's 3rd birthday and it will also make 4 months that he has been with Jesus. 

Needless to say, it will be a really hard week/weekend for me.  

SO, mom and I decided that we are going to take a trip to Albuquerque to visit my sister and her husband (they are stationed there for 6 months before they move to Georgia) for the week.  Our tickets are booked from Friday the 11th to Wednesday the 16th.  Part of me feels so guilty for leaving this house at this time, but the other part knows that being here and being around kids, going to family parties and being around Tripp's things will be so hard for me.  It will be hard no matter where I am... so we decided that Mother's Day weekend would be a good time to take the trip.  

I had initially wanted to do something big to honor Tripp on his 3rd birthday- a big party with whomever wanted to be a part of his special day, attempting to also raise more money for EB in Tripp's name.  

But now I'm leaning towards something different.  I don't think I'm up to a big party where I have to put on my happy face and pretend like my heart isn't broken.  

So I decided that the only thing I want to ask is for anyone who wants to honor Tripp on what would have been his 3rd birthday- is for a donation in his name to The Butterfly Fund.  Mrs. Laurie Sterner and the Butterfly Fund are very special to me.  They play such a huge role in helping with the very personal needs of families affected by EB.  And I think that it is extremely important that we help in keeping her fund going strong.  And of course, I believe finding a cure and funding research is important as well, but I also believe that while we are working on a cure, keeping these poor families going is something that is just as important.  It's impossible to do without help and support.  And Mrs. Laurie and the Butterfly Fund were a huge support to us for the 2 years and 8 months that Tripp was here- and they continue to be a support to me to this day.  

So, if anyone has the desire to do something in my baby boy's honor and also in honor of anyone who has lost their life to EB, or anyone who is still fighting hard against EB- that is the only thing I ask. 

You all have always been so amazing and I appreciate it more than I could ever tell you.   

All I'm doing is trying my hardest to stay as busy as I possibly can.  Which I know is not always the best thing, but it's the only thing I know how to do right now.  I'm sorry for not keeping up the blog like I should.  I guess I just feel like I'm repeating myself and I feel like a broken record.  

If anyone has any great ideas on things I could do to keep up my blog better or things I could post about that you guys would be interesting in knowing/seeing (about Tripp or EB, of course:), please feel free to throw ideas at me.  Maybe it will help me with my grieving process as well (stupid grieving process... no one should ever have to grieve for their child).  

And I'll try to do better with taking down my "Me and Tripp" wall and letting you guys back in. 

Just let me know when you're tired of my "debbie downer" posts...

Thank you all, again and always, for the unbelievable amount of support.  

Thank you to everyone who has sent cards, emails, gifts, and letters of encouragement. 

It means SO much to me. 

I am so blessed. 

Love,

You just can't.

Today was a yucky, sad day.  Perhaps my body is finally catching up on rest from the past 2 1/2 years.  And maybe reality could finally be setting in or the shock wearing off...  I'm not sure.  I have no clue what my body is feeling or what I'm supposed to be doing.  I know that I am the queen of putting on my happy face and sucking it up.  Most of the time, doing that is SO much easier than crying.  But today I had to cry.  I can only go so long trying to be strong.  I am so good at holding in the tears and the pain until it builds up so much that I literally can't hold it in for one more second, and the tears just flow.  

You know how when someone loses somebody they love, they say that a "part of them" is missing?  Well, I know that for me (and I'm sure everyone else who has lost a child), that this "part" is a REAL physical part.  When I say that a part of me is missing, I really feel like it physically is.  It's not just a figure of speech.  There is such an emptiness in my heart when I think about my baby.  And the fact that he isn't here with me anymore just physically hurts so bad, almost to the point of nausea.

  I don't know how else to explain it.  

Tripp was my entire life.  Literally.  He was the reason that I woke up, the reason I took every breath, and the reason I did ANYthing for 2 years and 8 months.  Even though I've been keeping busy and trying to do normal things to make people think I'm okay.  I know I'll never be okay.  

Will I go on with life and function like a normal human being? 

Yes.  

Will I do fun things again one day without feeling guilty every minute while I'm doing them?  

Maybe.  

Will I ever be OKAY with the fact that I have to live without my baby?

  No.  

I'm sure of that.  That is a feeling that doesn't change.  And no matter what I try do to "move on" (I hate those stupid words...) my life will never ever be the same.  I will be happy in different ways, I know... with my great new man and all my wonderful family- but I'll never be able to get back the piece of my broken heart that Tripp took with him when he left.  

I don't know if I have shared this with you guys yet, but I always think of the day that Tripp left my arms.  I think about the moment when I knew that he was no longer here, but had gone to be with Jesus.  I don't know if I could explain the feelings I had at that moment.  I wanted to go with him.  An instant feeling came over me and I was immediately not scared to die.   I'll never be scared to die.  It was an instant feeling that nothing on this Earth really matters.  And that's sort of what I'm struggling with.  Obviously I know that I can't choose when I get to leave this Earth (if I could... trust me, I would).  But I just feel like time is standing still.  Actually, I feel stuck in-between two lives.  I have a beautiful life here- with a guy who treats me like a queen and would give me the world if he could... amazing friends, family, and support.  I'm blessed that I don't have to rush back to work and I can take my time and grieve properly and get back on my feet.  But I also have another side of me that is missing my little boy so much that I would forfeit my life here in one second.  

I often think about the things I would do with him if he could come back for one day.  Oh, what I wouldn't give to be able to play his favorite songs in his rocking chair again.  Or to listen to him beat his drums to "shoo-fly" while fussing me when I ask him if I can drum too.  I know in my heart that I didn't take one day for granted... but I can't help feeling that if I just had one more day, I could show him how much I REALLY loved him.  Because it's so true that you don't know how much you love something or someone until they are gone.  I never ever thought that I could love Tripp anymore than I did when he was here with me... but I can tell you I would give ANYTHING... and I mean anything... to see him again.  

I know the time will come... but those words just don't seem to help right now.  

I can't even bear to flip through pictures anymore... 

I miss him so much. 

And I've come to the conclusion that you can't fix a broken heart.  

You just can't. 

Love,

2 months feels like 2 years...

Missing my baby boy with my whole heart, especially on this day that makes 2 months since he left my arms.  

Memories like these I will cherish for the rest of my life. 

So thankful for my faith, that is carrying me through each day.  

Reassuring me that my sweet boy is safe, healthy and happy in the arms of Jesus.  

Because if he can't be here in my arms, there's no where else I'd rather him be... 

Love,

A very humbling couple of weeks.

To say I long to hold my baby boy in my arms again would be a drastic understatement. 

I apologize for not writing lately.  I really do plan on keeping up this blog... I guess I just needed a little break to gather my thoughts.  Though I'm not sure my thoughts are gathered quite yet, but I'm going to try.  

There has been A LOT going on, so this may end up being a rather long post.  I guess I'll start with how I am doing... except for the fact that I really have no idea how I am doing.  I know I'm keeping really busy.  Going to the gym (sometimes even two-a-days), spending time with my family and with Stephen and his family.  Those are the things that make me happy right now.  I've come to realize that no matter what I say or how I say it, I could NEVER explain to you guys what I'm feeling.  And I know most of you understand that.  

Two years and almost 10 months ago, I gave birth to my first baby- and from that SECOND on,  for 2 years and exactly 8 months, I devoted every waking (and sometimes even non-waking) hour to taking care of him, loving him, and keeping him alive.  And now for almost 2 months, my arms have been empty.  It's the worst feeling that I will ever have- I'm positive of that.  I hate saying that "I miss him," because that just doesn't seem to do it justice.  There are no words that could ever express how much I miss him and how much I want him back in my arms.  As tired and exhausted as I was, I would trade this life that I have now for my life back with him in a heartbeat.  HE was my life.  And I'm having to learn how to live my life without him now- not by choice, but because I know that God's plan is much bigger than the plan that I had.  

And God's plan is still happening... through Tripp and through some pretty incredible, generous and caring people.  First of all, I want to say that I DO receive all of your letters and e-mails.  PLEASE forgive me if I haven't thanked you personally, but it's been pretty impossible for me to keep up.  I'm trying to send out thank you cards, but I'm a little behind and a tad bit overwhelmed.  But I want you all to know how VERY much it means to me when I receive a sweet card in the mail, or when I read your kind words through an e-mail.  I promise that I receive and READ each and EVERY one.  They honestly keep me going.  So thank you all- from the bottom of my heart.  

Two weekends ago, there was a Softball tournament that was put together here in my hometown in honor of Tripp.  It started with an extremely kind family- David and Jessica Thompson- and David's softball team, who wanted to dedicate their entire "season" to Tripp.  They named their team "Tripp's Troops."  They had jerseys made and then began to rally teams to put together a tournament.  Well, it turned out that it was much bigger than they expected.  There ended up being 56 softball teams (Men's teams and co-ed teams) from across the state.  The whole town participated- our local Recreation park and director, Mr. Bill Wheat, donated the park and also worked hard to gather some incredible local bands and activities for the kids. Tripp's Troops also put together a silent auction where people from the town donated things and services to be bid on.  And they also had a huge amount of men and women who volunteered their time to cook, clean, set-up and work this big event!  The turnout was amazing.  It was incredible to see so many people out there in support of Tripp and our families.  I am so humbled that a family that we didn't even know would go out of their way to do such an incredible thing for Tripp, our family, and for EB. 

 I am so grateful for the support. 

Thank you SO much to everyone who was involved. 

AND then, this past weekend, we had another amazing event happen.  

Our local news anchor, and now friend:), Scott Walker, from WDSU Channel 6, decided about 2 months that he was going to not only run the Rock-N-Roll Half Marathon on March 4, but he was going to dedicate it to Tripp.  He decided that while he was training for the half-marathon, he was also going to raise money for DebRa.org in Tripp's honor.  He then created a website- www.runningfortripp.com where he has been tracking the progress and keeping people updated.  

Then, people from the community wanted to get on board as well.  So, local friends decided that they, too, wanted to run for Tripp and also help Scott raise money.  They created t-shirts with "Team Tripp" on them and spread the word through Facebook.   It was so emotional for me to see so many people wearing red and honoring my sweet boy in such an amazing way. 

There was also someone really special who wanted to get in on the action- my Daddy, Tripp's Papa:)  My dad has been running here and there- he runs 5Ks pretty often and for the past 3 years, he has run the Crescent City Classic, which is a 10K.  That's the furthest he had ran- before he decided to also run the half-marathon for Tripp.  He said he would just be happy if he crossed the finish line, but he sure surprised us.  My dad ran the whole 13.1 miles, without stopping.  I was completely choked up when I watched him run through the finish line, smiling and pointing to his "Team Tripp" shirt.  I was so incredibly proud of him.  So was my mom, as tears ran down her face.  And I think even Stephen got choked up a little:)  It was a pretty great experience.

Scott writes about this weekend and his feelings about it HERE, on his blog.  It made me cry this morning.  

I am so proud of him- for taking this on, and for totally ROCKING it. 

I got to meet Scott's amazing wife, Jennifer, and the rest of his family this weekend, as well.  They are such wonderful people. 

I will never forget yesterday and the support we received as long as I live.

Scott first set his goal at $5,000, then $10,000, then 20, then 30... There was over 500 donations online plus the donations given by mail, phone and in person.  

As of today, he has raised a whopping $42,481 for DebRa. 

That is HUGE.  This whole event was HUGE. 

If you missed out on getting to donate to DebRA in this way and towards this event, Scott still has his website up and running for a few more weeks!  Let's help him get to $50,000 before he closes out his site for this year! Visit www.runningfortripp.com for details on how to donate! 

To watch Scott Walker's live interview after the race, click HERE.

I got a little emotional after the race- seeing everyone gathered together with their "Team Tripp" shirts on and meeting people who have followed my blog and who's lives have been touched my my precious little man.  

I want to thank everyone who was involved in this weekend. 

I want to thank Scott Walker for taking this idea and running with it- for helping me to spread awareness about EB in Tripp's honor.  I want to thank Dianne Cothern and everyone who signed up to be a part of "Team Tripp."  I know God was smiling down on all of you yesterday- continuing what Tripp started.  Spreading the love, spreading awareness, and doing something for us that was so much bigger than I can explain.  I know how much it means to me and to all the adults and children who are affected by this horrible disease.  

I am completely humbled by the generosity and big hearts of so many. 

I hope all of you will continue to fight EB with me.  Because Lord knows it's about time that these children and adults receive the long overdue and much needed attention and awareness that they deserve.

Scott Walker at the finish line (with the beanie:)

My Daddy at the finish line! 

My dear friend Amy (from WDSU) interviewing my Dad after the race.

The only thing getting me through the days is knowing (well, believing) that my little boy's soul is in Heaven and he is playing, laughing, and running around- having the time of his life.  Probably using a little stick to "bang" on anything and everything he can to play music.  Maybe humming "Elmo's world" or "Shoo Fly"- and maybe even thinking of me... But most importantly, I believe that his time in Heaven is a blink of an eye compared to the time I have left here on Earth.  So I pray and hope that while he's running around and playing, it will seem like only minutes to him.  And I hope he's having so much fun that when he finally remembers to turn around and look for his Mommy, I'll be right there. 

I kind of think of it like this video below.  This shows his little personality PERFECTLY- always ignoring his Mommy.  I like to think he's up in Heaven ignoring me until I make it there to squeeze him and kiss him like never before. 

The cutest booty shaker EVER. 

Love,