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,

Love.

Happy St. Valentines Day to all of you.  

For me, today is extremely bittersweet.  Today makes exactly ONE month that I've been without my baby boy.  The thought of that physically feels like someone is ripping my heart out of my chest.  Knowing that I haven't done a bath, a dressing change, said night-night prayers, or kissed those sweet lips in ONE whole month seems so unreal to me right now.  

A true nightmare.

But I'll tell you why today also makes me smile- because today is about LOVE.  

Right?

And I know all about love.  Tripp taught me love.  He taught me love like I've never known it before.  What I've learned MOST from him is unconditional love.

A love so strong that nothing can break it... not even death.  A love that shines through pain, anger, and exhaustion, but also through times of complete joy and trust.  Tripp taught me that every day counts- and that every minute matters.  He loved me with his whole tired little heart every minute he was alive.  Never once while he was alive did I think that my job as a mom was hard.  I was doing what I was supposed to be doing- all I knew how to do, and all I wanted to do.  He lead me through every day and every hour by showering me with love like I've never known before.  He was wise and holy beyond his years.  I believe that with all my heart.  I believe that he knew exactly what would happen in his time here on Earth- down to the very last minute.  I believe he carried out God's plan for him.  

God's plan to show true LOVE. 

   

All of us have said "I love you" to someone at least once in our lives, I would assume, right? 

Well think about what that means.  What IS the definition of love?  The best definition I can think of would be the one we have heard over and over.  It's the letter that St. Paul wrote to the Corinthians (possibly around 30 years after the time of Jesus) in efforts to teach us how to live our lives as God had instructed us. 

 "Love is patient, love is kind.  It does not envy, it does not boast, it is not proud.  It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs.  Love does not delight in evil but rejoices with the truth.  It always protects, always trusts, always hopes, always perseveres."

-1 Corinthians 13:4-7

Now... do we really love each other?  Have we broken these verses apart and thought about what God is really telling us to do and how to live? 

Are we really patient with each other, with our kids, with the person in front of us in line, or the person who cut us off in traffic?  

Are we kind?  Do we go out of our way to do nice things for one another?  Do we visit our loved ones who are sick or homebound?  Do we say nice things to each other or is all that comes out of our mouths ugliness and gossip? 

Are we JEALOUS?  Do we spend every waking hour wishing we looked like someone else or are we so proud that we think are better than someone else? 

Are we so selfish that we forget about the feelings of others?  Do we forget that we are here to get to heaven... not here to see how much money we can obtain in this lifetime, or how many friends we can acquire on Facebook? 

Do we forgive (the hardest, most dreaded task we are ordered to do)?  Do we skip family functions because we are still angry at Aunt Sally because of something that happened 10 years ago?  Do we avoid a friend in the grocery store because of something that happened that has absolutely no meaning to us anymore? Life is SHORT, people... and life here on this Earth has one purpose and one purpose ONLY- 

TO GET US TO HEAVEN.  

Do we just have to love God and our spouse, children, and family?  

Or are we instructed to love EVERYONE? 

"The most important commandment is this: 'Love the Lord your God with all your heart and with all your soul and with all your mind and with all your strength.' The second is this: 'Love your neighbor as yourself.' There is no commandment greater than these."

-Mark 12:29-31

Are our neighbors just the people who live next door?  Our neighbors are anyone and everyone around us.   They are the person in front of you in line, they are the person that cuts you off in traffic, they are even the orphans in far off countries. 

Why are we wasting so much of our energy on things that just don't matter? 

Why are we storing up all of the LOVE we have to offer?  What are we waiting for?  

Today- for me and for Tripp- do something SO special for someone that it makes God smile.  

It doesn't even matter if that person appreciates it or not- just do it.  Step out of your comfort zone!  Pick up the tab/bill of a stranger, help someone carry their groceries, visit a family member that you haven't seen in years, or just simply hold the door open for someone.

What happened to the world when people did nice things for one another without needing anything in return?  Pay it forward.  Every action and every small deed counts.  You never know when you are making a difference in someone's life. 

And I promise you... that you will feel so good about yourself that you might even want to do something nice for someone EVERY DAY (gasp)!   

And the next time you tell someone you LOVE them, think about what it means to LOVE them.  Do you say it out of habit or because it's what you think you're supposed to say?  And better yet, try just SHOWING someone you love them without even saying it.  

Because, we've all heard it before... but it's so true: 

Actions speak louder than words. 

So make your time here on Earth worth something, because you never know when your time will be up!!

"And he said: 'I tell you the truth, unless you change and become like little children, you will never enter the kingdom of heaven'."

-Matthew 8:3

LOVE,   

A little piece of my heart.

I'm struggling with finding the right place to be.

I think I've come to the conclusion that I've been too strong for too long.  That's the only thing that makes sense to me right now.  For exactly 2 years and 8 months I had to put on my happy face, I had to "suck it up," and I had to pretend like I was okay (and with Tripp here, that was so easy to do)... but now, I feel like that's the only thing I know how to do.  I am still trying to put on my happy face (mainly because I hate to think that people feel sorry for me) and trying to pretend like I'm okay. 

I think I'm still in "you have to be tough" mode.

Except I don't WANT to be tough.  I want to cry, I want to grieve.  My body just won't let me do that right now and I'm not sure why.  I think I'm trying too hard to keep busy and do things because I'm scared of finding a new "normal."  I don't want a new normal.  I know the grieving will come, I'm just wondering how long it will take for reality to set in.  I don't want this life of being able to do whatever I want.  I don't want the life of not having my baby to take care of.  I don't want this feeling of guilt every time I smile or laugh without my baby.   I want to be smiling and laughing FOR him.  I want to be able to talk in my "Tripp voice" again and make him chuckle.  I would literally give anything in this world to have my life back... my life with him- minus his pain.

I've been thinking a lot about my faith and the fact that I have so much trust in the promise that Tripp is with God and in a better place.  I'm just so thankful for that.  I just can't imagine going through losing a child and wondering where he or she is and if they are okay.  I also think that has a lot to doing with how I am "grieving."  Not that it takes away the pain of not having your child in your arms, but it helps tremendously with any concerns that I would have about whether or not Tripp is okay.  

The homily and readings in mass today were about suffering and why Jesus would allow bad things to happen to good people.  And the bottom line is... that we don't KNOW why God allows these things to happen.  We can speculate, but we don't know.  We won't know until we are able to ask Him ourselves.  But what I do know is that God never left my side.  In the dark times, and in the happiest times...He was there through my family, friends, and the relationships I made, He was there through all of you guys, who have been and still are the best support system I could have had.  And He was there through my little angel- who's smile gave me more peace and happiness than I could have ever asked for.  

Do I think that Tripp was part of God's plan for bringing people closer to Him? 

I absolutely do.

And as tough as it is, I'm still trusting in His plan and praying that He will lead me where I need to go and lead me down the right path in these upcoming months and years. 

I know that I will write a book... I know that I will continue to blog... and I know that I will fight for EB for the rest of my life... I'm just not sure yet how I'm going to these things when a little piece of my heart is missing. 

Love,

The sweetest kisses you'll ever see.

I've been meaning to post this video.  

It was the very last video that I took of my sweet man. 

It was taken maybe 3 or 4 days before he left my arms...

It was the first time in weeks that he did anything like this.

Warning: if you have a heart, it will surely melt. 

I love you baby... I miss you every single day.

Love,

A note from Grammy

 No one really teaches us how to become parents. 

 We learn from our parents and grandparents.

We read books, we google and we pray that we do the right 

things to make us qualify as good parents.

Courtney, when you were very young, 

you loved taking care of your dolls.

As you grew older, 

you loved taking care of other people's children.

They were always attracted to you and your smile!

After you became a nurse,

you loved taking care of your "little old people".

You REALLY loved it!!

When little man was born, 

you were sure to love taking care of him.

I knew you would be an incredible Mom!

I just didn't know HOW incredible!!

You stepped into the unknown world of EB 

and gave your ENTIRE self....

EVERY DAY and EVERY NIGHT!

For two years and eight months you gave!!

The minute Tripp was born, you showed him nothing but

 love, patience, joy, happiness and

PEACE.

I know you prayed for peace for him,

but you gave him peace just by your presence.

From the first breath he took until his last breath in your arms, 

you surrounded him with an amazing peace.

He loved your voice and how you smelled.

He loved for you to sing to him and "rock rock" him 

and whisper "I love You" in his ear. 

You and he had a perfect love. 

I watched you bring him peace every day!!

He was happy because all he ever knew was happiness from YOU!

He smiled because of you!

He chuckled because of you!

He danced and shook his booty because of you!

He played his drums in perfect rythm because of you!

He loved Elmo because of you!

He even fussed us because of you!

He lived for two years and eight months 

because of you!

You are an AMAZING mom groomed and handpicked by God

to nurture one of his angels.

You did the most incredible job TAKING CARE OF Tripp.

God Himself prepared you well!!

It was such an honor to help you care for him.

Thank you for trusting me with your Angel!

I wouldn't trade a single second of the time I spent with him!

I too wish I could do it 100 more years, minus the pain.

What a brave little soul he is. 

He captured hearts all over the world. 

He was, is and always will be my HEART! 

Grammy's Angel!

I love you and I am so very proud of you Courtney!

I love you Bubba.

You are the strongest little man I will ever know.

You gave each of us a new lesson about

 love, patience, kindness, selflessness and generosity 

without speaking a word!

WHO DOES THAT? 

You and your mom are heroes to me and many others.

I will miss you every single minute of every single day.

Take good care of your Mom now!

Thank You...
First to God for trusting me to help care for His Angel.
What an amazing gift he was.

Then to everyone who had a part in helping Tripp 

with his mission on this earth. 

His mission isn't over yet,

 as he is still bringing people closer to God!!

He has made me and anyone who "knew" him

a much better person.

One last thing...

Courtney assures her Dad and me that she will

be taking care of us in our old age.

I feel extremely comforted by this.

All my love to each of you reading this.

Your love and prayers helped 

Courtney through many dark days.

Please continue to pray for her peace. 

Love,

Anita

Courtney's Mom

Tripp's Grammy

Missing my baby...

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


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

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



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


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



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


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


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

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

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

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

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

Mommy is so proud of you.  

Your wings must be SO big.... 

Love,