For you Travis

Article about your daddy in the local paper.

Murrieta Patch

This the last picture of Travis and I. I carry it in my wallet and have it posted in several places.

This is me on December 10th - 108 pounds lighter. Thanks Travis for helping me get through all the runs.

My Weight Loss Journey

I have just completed some major goals in my life this past week son. I have completed a 5k on your birthday. I run with my students in p.e. class now. I have lost 101 pounds. Most importantly, I have become healthy so I can be active and live longer for your sister and any future brother/sister.

I was tired, hungry, and wanted to quit or cheat more times than I can count over months. But i never did. I exercised when I didn't want to, I ate healthy instead of bad, and I chose to be the man/dad/husband I wanted to always be. I always hated to run. HATE HATE HATE to run. But fell in love with the chance to just run and think of you. I never ran alone, because you were always there telling me one more block. I ran a 5k. Who would of ever thought that would be possible. You would have been so proud.Travis you never knew me as skinny daddy. I look at your pictures every time I walk downstairs, open the fridge or watch TV. I said I would loose the weight so I could be there for you as you grew up. But you never got the chance.

After you went to heaven Mommy and I turned to food as are coping method and gained a bunch more weight. We decided to do something about it this summer. You were with us every step of the way. Mommy lost over 50 pounds and has changed her life as well. You would be so proud of her. Addison has gained weight, but she is still growing (LOL).

The only motivation I needed was you buddy. I am extremely emotional today and have cried a ton today. I miss you terribly. I came home today from my competition and was so happy to see my girls, but I really wanted was too see you. Your poor sissy probably thinks I am a freak, because I won't put her down. I just miss you boy and always will.

Talk to you again on the next run.

Love,Dad

A field of memories.

Then (2/11/11)

Now (10/1/11)

This past weekend Nicole and I had to go to a function by the park next to the duck pond in Temecula. As soon as I heard that it was going to be there I panicked a little bit. One of my favorite memories of Travis happened on the last day I was there.

The last time I went there was one of my favorite days of being a dad. It was George Washington's Birthday, Friday, February 11 and we had no school. (Nicole had to work) So Travis, Addison and I had the day to ourselves.

On this day we didn't have anything planned, but just to spend it together. We woke up and hung out on be like we did many times. We finally got up and left the house. We went to Babies R Us and did some shopping. On the way out we ran into Terrell Davis (NFL Superstar) and had Travis take a picture with him. I thought it would be so cool to tell Travis stories about Terrell when he got older, but never got the chance.

I then remember going to Daphne's Greek Cafe and sharing lunch with my boy. The manager took care of us and was so nice to us. He gave us a side of rice for Travis on the house, just because Travis gave him his trademark smile. Travis was so much fun during lunch just eating up his rice and some of my gyro pita. Travis was enjoying standing up in the booth and smiling at all the people. Travis had the ability to make people smile. His smile was infectious and even grumpy people would look at him and smile. He had a gift.

After lunch, I packed both kids in the car and that is when I got the phone call that changed our lives forever. It was the phone call from the surgeon's office scheduling his surgery. They gave us some options on the dates, Thursday February 17th or sometime in March. We chose the earlier date, because we were told that he needed the surgery and the sooner the better. I remember Nicole telling me that it was less than a week away and us both freaking out.

After getting off the phone with Nicole and having the surgery date set, I decided to take Travis and Addie over to the duck pond. We have taken him there before and he loved to look at the ducks. He was so observant and never wanted to miss a thing. I fed the ducks so they would come close to him and he loved it so much. As we were walking to the van, I saw this big park with beautiful green grass and thought it would be a perfect picture opportunity. It is adjacent to the duck pond and is just really a nice area. I put Travis in the middle of the field and snapped up some pics. We then spent a little time playing in the park and then took off home.

I had a great day with my boy and my girl. Although Addison slept through most of the day, it was really the last time that I had the opportunity to be with both of them by myself. I am so grateful to have had that special day with my kids.

I only wish that we could have just one more day together.

I love you and miss you son.

Dad.

Travis hanging out in bed

Addison was so little back in February

Travis (Our MVP) and Terrell Davis (Super Bowl MVP)

Travis checking out the ducks

Travis just being Travis

Reflection - Lessons from Travis

As everybody is thinking of the ten year anniversary of 9/11. I am unable to get past the past year. I miss my boy a ton and he is still the first thought on my mind in the morning and the last at night. We have decided to let Addison play with Travis' favorite toy. I was able to capture video of her using it today and it reminded me of a video that I never posted. I put this together today in honor of my boy.

Giving Back in Honor of Travis' 2nd Birthday

Roger and I wanted to do something special to honor and remember Travis as he celebrates his second birthday in Heaven. So, we are gathering friends and family to provide dinner and activities to the families staying at the Ronald McDonald House in San Diego. The Ronald McDonald house holds a special place in our hearts as we spent 68 nights there as Travis fought his brave battles!

The Ronald McDonald House Charities® of San Diego provides a home-away-from-home for families with a hospitalized child being treated for a serious, often life-threatening illness or injury at local hospital.

I do not have all the details worked out yet but please let me know if you are interested in helping out. We will need help in the following areas:
* meal prep
* serving
* clean up
* working the activities table for the children (I was thinking
maybe Halloween masks)
* someone who would be interested in doing a couple read
alouds of Travis' favorite stories
* donation of plates, forks, knives, cups, etc.
* monetary donations for purchase of food, etc (all
remaining funds will go directly to RMH)
* decorations

If you are interested in helping please copy and paste this link into your browser (it'll take you to the event page on FB):

https://www.facebook.com/event.php?eid=221160514598096

When you RSVP please let me know in what capacity you will be willing to help us honor our Miracle Angel. Also, if you have any creative ideas for the evening, let me know. They tell us to prepare food for 160 people so we need a lot of help! We will be cooking Mexican inspired food.

This will be a difficult, difficult time for us but we know that this will be a rewarding and loving way to celebrate Travis' birthday. It brings us comfort to know we will be surrounded by friends/family and helping others who are this familiar situation!

NOTE: We are limited to the number of people who can cook/serve so we will have to take volunteers for that based on order of response. Thanks! ♥

NOTE #2: All of the food has to be prepared in a "Health Department Approved kitchen" and therefore it will need to be prepared and cooked AT THE McDonald house. So, no cooking at home :( Sorry

"How are you doing?"

That is the million dollar question.

Some people ask, some people are too nervous.

Some people can handle the real answer, most can't.

To put it simply: we are getting by.

Roger and I both see therapists both together and separately and although I dread going, I always come out feeling a tad better. We talk to them about our guilt, the massive guilt that comes with death. We talk to them about our memories. We talk to them about the impact of this loss on our relationship and on Addie. We talk to them about our shattered dreams. Mostly, we just talk.

Most days we walk around in this melancholic daze. I told my therapist the other day that I just feel as if nothing gives me real joy anymore. I can't live in the moment. I'm always regretting the past or looking forward to that day that we see Travis again. I am not sure if you looked at us you could tell.

WE DO A GOOD JOB OF PRETENDING.

We do it. We do it for Addie. We do it because we don't want to burden our friends and family. We do it so we don't scare our friends who have babies walking the same journey that Travis did.

It takes a lot of energy to go about pretending that all is okay. A friend recently asked me "What percentage of your thoughts throughout the day are about Travis?" I thought this was such an interesting question. I wonder if people are surprised by the answer. I came up with 85% of my thoughts. His life is still very much intertwined in mine. Not all of my thoughts of him are sad ones. I have many happy memories too!

Your heart is split between this world and that world. I am engaged in Addie and engaged in my grief /memories. Multitasking in this manner wears at you. It strips you of your ability to concentrate. I rips away your energy. It strains your relationships. So, we give it all we got. We do our best. We get by.

Fall is coming and that means we will be faced with all the things we are missing out on....Travis' 2nd birthday.....the Holidays. Thinking about going through all those without him is horrendous but we will get through it because we need to....he'd want us to and Addie needs us.

Our 4.2 million dollar boy

We have been receiving Travis' medical bills for all of the stays and procedures he had at Rady's (including all of his surgeries, heath catheterizations, and his lengthy stays). The insurance carrier sends us a statement to show us what everything costs and what they pay for. Prior to his death we were constantly receiving bills addressed to "the parents of Travis Gary DiCarlo". Now, we receive them addressed to the estate of Travis Gary DiCarlo. It is ridiculous that we have to receive these......I mean the "estate of"....I suppose there is just no proper way to address the death of a 16 month old. It is just too terrible to imagine.

The mailings have slowed down and it looks like the last bills have rolled in. Today I finally totaled his medical costs during his short life. I kept all of his bills because I wanted to show him when he got older because I thought it was interesting to see how much it all costs. Unfortunately, things turned out for the worst and we have decided to throw them out.

I did total everything and after recording over 300 pages of bills the total was more outstanding than I thought.

His total medical expenses charged by the hospital were:

$4,281,186

Travis was truly priceless and was worth every penny. I miss you son. - DAD

Angels Among Us

Yesterday we saw a spiritual medium. Below is a smidgen of our experience. If this is not something you personally agree with, please keep it to yourself . I went in skeptical and went out a believer!!!!

So, a friend of mine told me her experience with a medium in LA. His name is Tim Braun (http://www.timbraun.net/). Her experience amazed me so I was intrigued. I ended up booking a “spirit circle” with myself, Roger, my mom, sister, and sister’s wife. After introductions (first names) we sat in a circle and he walked us through a short meditation. Then, he started and addressed my mom. He explained that paternal relatives stand to the left of you, maternal to the right, and immediate family behind you. He said he saw a man behind her……it was my dad (her ex-husband). He conveyed my dad’s sass and apologized for not being able to say goodbye. Tim, the medium, gave a lot of information about his death/life, his personality, and the way he dressed. He also said that my dad kept walking back and forth between my mom and Roger (note: He died before I met Roger). Tim said he was slapping Roger on the leg and giving his approval. Then Tim mentioned a maternal grandmother. He didn’t have a lot of information about her but said she talked a lot (which matched her personality). Then, he turned to me. He asked my name again and said he saw a young spirit running circles around me but didn’t know why. He asked if anyone invited a child in. He went on to tell us a lot about Travis (he never said his name though). He said Travis loved us…he said Travis kept touching his head and saying he was okay. Tim said he felt like it was a headache or swelling…..he kept going back to that and he also said that Travis’ death had something to go with not being able to breathe……like water in his lungs. Early on he said Travis was holding his arms up like showing his muscles. Later on Tim mentioned that it was more clear and he was showing his heart and chest were good. He also told us that Travis had a sensitive feminine spirit and was a sweetie. He told us what we already knew, that Travis LOVED water. He loved to swim. He told us that Travis misses his dog (just one of them). He showed us the exact size of our dog and said that the dog can see him and they play together. He said that the dog is sad/sullen because he misses Travis and that the dog’s health is suffering. He told us that when our dog gets sad to pet him and tell him we miss Travis too and that will add some years to his life. He kept telling us that Travis knew what he wanted and kept going to the fan in the room and putting his face in front of it and ignoring him. Tim told us that Travis is not angry with anyone……he said he is not angry with hospital, doctor, etc. He repeatedly told me there was nothing I could do. Tim told exact times he passed away and when we found out. It was crazy. He told us that Roger’s grandmother was the spirit to guide him in. He told us that other spirits were trying to talk to us but my dad’s spirit was telling him to focus on Travis. He continued to go on and on about his head swelling and that Travis was happy and thankful to have lived as long as he did. Tim told us that Travis had 2 extra months and that he was supposed to go 6-8 weeks before his death. Tim told me Travis wanted me to finish the book I am reading (titled Growing Up In Heaven). He also told us that we were so selfless and everything stopped for Travis so he was giving back what we gave him. Tim conveyed messages of caution to Roger. Tim told us that Roger should have died already, in a car accident when he was younger. Tim said he fell asleep at the wheel and that Travis is telling him he needs to be extra careful driving and never ride on a motorcycle or mo-ped. Tim said Travis wanted me to improve my posture (weird!). I’ve had spinal surgeries….so maybe that is what that was all about. He told my mom that Travis is telling her to stay away from smoke and that it is bad. Tim told my sister to take care of her right knee (she’s had 4 surgeries on it). Tim spoke to my mom and conveyed that she was a pushover for Travis (she was) and she doted on every whimper. He also told my mom “You have one remaining granddaughter, right?” Yes. Then he said that Travis was asking to play with her. He said when she is reaching out to midair she is playing with him and trying to get something he has. Tim also told us that Travis is playing with a spirit that has not yet been born and that it will be soon…..to us. He said that this child will have a lot of the same characteristics as Travis. He said Travis was happy and with my dad and Roger’s grandma.

So much more was said. We have it all on tape. He also contacted Roger’s grandmother, Deb’s birth father and her old dog, and my paternal grandpa. We ended with a meditation and goodbyes. I asked if we could do it again and he suggested Roger and I go in for a private reading. I am going to!!! I was skeptical before but I am sold. It was amazing and I feel some peace knowing that Travis can hear me and he is around. I just miss him so much! I am so happy he is happy and with my dad.

‎"Make yourself familiar with the angels, and behold them
 frequently in spirit; for without being seen, they are present with you."
-Saint Francis de Sales

Cobwebs

Every night I rock Addie to sleep in Travis' room. We light a candle, sit on his floor, read some books, and then she drinks a bottle as I rock her and think.

Tonight I saw a cobweb from his bed to wall.

A FUCKING cobweb....on my son's bed. Because he doesn't sleep there.....because it isn't used....because he is dead.

This is all really unfair. I continue to wonder....why us? Why him?

We received a couple of handmade quilts recently for Addie. They are beautiful and have her BroBro's pictures on them and special quilt squares that will allow her to remember special memories we share with him. They are gorgeous. It pains me, however, to think of Addie as a 10 year old asking about her sweet brother. What do you say? How can you explain all this to a child?

The other day I as looking for the sheet for our pack and play. I opened Travis' closet and saw his brown striped outfit in his hamper. It is the last thing (besides pj's) that he wore. We haven't washed it...I just can't. It's unbelievably painful to look at that outfit and remember all the fun we had the night before his surgery....the last night his would ever see his sister. The last night we would ever se "him" (acting normally at home).

My heart just aches. I am just so broken.

No Air

Often, at night, as I try and sleep I run through the memories from February. The memories are so terrible.....the cannulas in your neck, the shouting, the rain, the social workers, the ct scan, singing in your ear, holding your hand that whole night, daddy's call that I needed to get right back to the hospital, the bitchy heartless nurse, leaving you there for good.

I can't breathe.

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I Can't Even Bring Myself to Pray

I am just so angry with God. I feel like He let me down.

I am angry when friends post things like "God is Good" or when people post that God heard their prayers. Why didn't God hear ours? Why wasn't He there for us?

We prayed! I mean, we prayed so freaking hard for Travis. We prayed for his conception, we prayed for his birth, his surgeries, every procedure, every alarm, every night. We even taught him to pray. He'd fold his little hands and we'd say a prayer together. We prayed for more time....we prayed for a miracle. When Travis coded I sat in that conference room and pleaded with God. He didn't hear it. How can I not be let down?

Why is it that all the other heart mommas are being heard? What have I done that is so horrible that He didn't listen? I loved that boy with everything I had. What made his life not worthy of more time with me?

I can't stand to hear people tell me he is in a better place. Internally, I know that. However, it was too early. I want him here with me. I wanted to see him grow up and go to kindergarten.

I just can't do it...I can't bring myself to pray. I have so much anger.

Re-Posting Travis Tribute Video

Celebration of Life - Travis Tribute

I was able to upload the video that was played at the Celebration of Life for Travis. I wanted to let everyone watch it who did not have the opportunity to attend.

Click Below

Travis Tribute Video

The Meeting

This past Friday at 3 Roger and I met with the surgeons to review the findings of the autopsy report. It was an excruciating 2 hours that we were hoping would bring some sort of closure for us. That didn't happen.

Basically, all they have are theories. Unfortunately, there was no clear cut reason that was found as to why Travis arrested. Everything seemed to be going so well. The surgeon spoke and told us that during rounds that morning (the morning he arrested) Travis was on course for extubation and everything looked good. After rounds, he went to surgery and that afternoon he was pulled out of surgery and notified that Travis was coding. After discussing everything and reviewing the reports, there is speculation that the timing of the extubation was unfavorable. The previous day during Travis' 10 hour surgery he was having trouble oxygenating and usually they wait a bit longer to remove the breathing tube in such cases.

We discussed several unsettling concerns we had with his care and what went on that day. He addressed them honestly and sincerely. He was taking notes on specific things that we brought up and we can only hope that some good will come of our comments/concerns. Dr. Lamberti looked visibly upset during this meeting and he just kept telling us that the hard part is that they make life and death decisions every day. He said that most of the time, their "calls" are good....sometimes, there are judgement calls that don't pan out. The decision to extubate that day was a dicey one. He is still quite angry about this whole thing and he again said that if this happened more often he wouldn't be in this field. He said that everyone involved with Travis' care that day would like to take it back. All I could do when I heard that was hang my head and cry. We ALL wish we could take that day back.

It is soooo painful to know that human error could have caused Travis' death. Our initial reaction was one of anger. Honestly though...I feel in my heart that everyone was making the best decisions that they could at that time. The part that is so troublesome is that I don't think that ICU docs (who make the calls on meds/extubating/etc.) had the big picture that day. Lamberti did...and he was in surgery.

One interesting thing that Lamberti said was that of all the families he has dealt with (some 7000) and especially parents like us who are uber involved....he said that we handled the events of that day with a lot of grace. He recalled my conversation with him about organ donation and my dad being an organ recipient. He mentioned that he was just taken aback at how well we handled such a horrible situation. We tried to adequately thank him but just ended up hugging him and fumbling for words. We still and will always have the upmost respect for Dr. Lamberti...he gave our son life and, as I've said before, gave us 16 wonderful months with our sweet boy.

We don't feel like we should share everything from that meeting but just know that the bottom line is that Travis' death seems to have been from a combination of bad judgement calls that day. How are we to find any closure in that? I think we are feeling worse now then before. We are left with MORE what if's and a lot of guilt.

Strength

My sweet friend Laura said it best ‎"If you wanna label something as "strong" in this hell....it is the energy it takes to play normal life, the energy it takes to hold in everything until you are in the right place and time... that takes so much energy (and it slowly kills you as it waits for your attention)."

Brown Bear, Brown Bear

Trav,
I pulled out a few books from your room to read to Addie tonight. I read her Brown Bear.

"Brown bear, brown bear, what do you see?
I see a red bird looking at me.
Red bird, red bird, what do you see?
I see a yellow bird looking at me."

The top of that book still has your little bite marks. As I read, I couldn't help but picture you listening so intently and then turning the pages at the right times. Some nights you were anxious and tried to turn them too quickly. Just before you left us, you were learning how to make some of the animal sounds. You thought it was so funny when I "neighed" for the horse and "quacked" for the duck. I would give ANYTHING, ANYTHING to read that book with you again. I miss you so much little man. My heart just aches for you. Tomorrow is going to be really hard. I just hope that there is a reason why you were taken.

By the way, I am still waiting for you to come visit me in a dream or send me a sign. Please baby boy...I need it!

Loving you to the heavens and back,
Momma

Physical Pain

I suppose no one would ever really know just how physical grief is unless you experience it to this extent. Most days it is a chore just to peel myself off of the mattress. I walk around throughout the day zombie like. Even when I sleep well, I am tired. My eye lids are heavy. I am overeating....which doesn't help the situation. My clothes feel tight and I feel worse about myself. I have headaches and feel sick to my stomach. Loud noises/beeping/whistling sounds scare the shit out of me. Wish I could just escape this for a day....even for a minute.

Thursday at 4 we meet with the team at Rady's to discuss the autopsy results. We are hoping for a clear cut reason why this happened. I am fairly confident we won't get that....nothing about HLHS seems to be clear cut...so, I won't hold my breathe. I am just not sure how I can live this life without a "reason" why this happened.

Complete

Had dinner with some friends tonight. We were discussing the topic of having more kids. Everyone was sharing if they were "done" or not. One of my friends mentioned she thought that they may be done even though her family "didn't feel complete". I keep going over that in my head. My family WAS complete. Sure, we can have more kids but we will never be "complete" again. God I wish I could change things.

Touch

I've never been a real touchy feel-y person. I've always hugged. I am a "hello/goodbye" hugger. Lately, however, someone's touch makes me cringe. It is a strange feeling. It started happening when Travis was born. People wanted to console me so they placed a hand on my back or my shoulder. It didn't feel right. It felt forced...it still does. I want to jump out of my skin now when somebody touches me. It is the strangest thing...I don't even want to hug my husband. I wonder how long this will last. Another side effect of grief/stress? I suppose.

Roger, Addie and I went to a Celebration of Life that was hosted by Children's Hospital on Wednesday. It was the first time we had been back since the day we said goodbye to Travis. It was very difficult. We didn't even want to go...but we wanted to honor Travis. Only one other family showed up. The family lost a beautiful four year old little girl. Her sweet picture hung next to Travis'...it was heartbreaking. So much pain and sadness. They lit a candle for each child lost in the last few months...19 of them. 17 candles lit and no one there to see it. I am glad we were there. I will take every opportunity given to honor Travis...no matter how difficult.

On the way home we ran into the social worker that was on duty the day Travis coded. Prior to that day we had never met her. She helped us through that day. We chatted for awhile about how we were coping and how big Addie has gotten. She told us how upset everyone was at Travis' death. Everyone was angry. It shouldn't have happened. She said that in the 15 years she has worked there she has never seen them (the doctors/nurses) try so hard and long to revive some one after cardiac arrest. 2.5 hours is excessive. I think we all just wanted him back so bad. She also mentioned that a staggering 85% of couples who lose a child end up divorcing. I can't imagine...Ugh! I am just sad about that. I can understand it though....there are so many emotions....a lot of them are ugly. At least we are working with people to help us figure out how to get through this together. We are all we have left and we need to be there for each other...and for Addie.

I am drained.

Everything is Difficult

It is difficult to get up in the morning. It is difficult to focus. It is difficult to have patience. It is difficult to be at work. It is difficult to be home. It is difficult to breathe.

Everything is difficult without you.

It still just doesn't seem real. A nightmare of epic proportions. Why did God choose us? Everyone says that God picked the right parents....I suppose that is true, I mean I wouldn't want for anyone else to have beautiful you. I just wish he hadn't chosen you to be sick and to only visit this earth for such a short time. I guess He didn't realize just how hard we struggled to have you. I guess He didn't realize just how much we needed you. I guess He didn't realize how much you were loved. I guess He didn't realize how broken we would be when he called you to Heaven. He must have thought we were strong. I suppose I did too.....before all this.

Every night I go to bed wishing you would visit me in a dream. I just want to see your sweet face. I just miss you that much. I wonder if you are walking yet. You were so close. We thought for sure it'd be any minute. I wonder if you can say "dada" yet. You know, your daddy really is so sad he never got that gift from you. I signed his birthday card with a note from you. I wrote "Daddy, I really miss you and I love you so much. Love, Buggy".

We need to get some professional pictures taken of Addison. I've been putting it off because we'll need to take a family portrait and I just can't without you. How do we do that? Shit....just the thought of it makes me physically sick. I just need to borrow some of your strength Trav. I am falling to pieces.

Everything is difficult without you.

An Empty Room

Dear Travis,

Your sister is sleeping and I'm sitting in your room right now. Rocking in your chair. I haven't been able to bring myself to sit in here for awhile now. It hurts. I miss you. Daddy and I put all your favorite things in your crib so you could see them. Your paci is in there, your Brobee bath toy, you sports blanket, the jammies you last wore, the elmo toy we bought you during your last surgery that we just knew you would love. You never got to play with that Elmo, baby boy. You hadn't really woken up enough when everything happened. Do you know how much time mommy and daddy put into this room for you before you were born? We painted the letters and the walls. We argued over nick nacks and what is appropriate for a little boys room. Daddy wanted to put ALL of his basketball stuff in here....mommy had to talk him out of it. I did, however, let him name the stupid horse we bought you at Walmart.....Zenyata. You did get to go see Zenyata race so, it was only fitting.

The box from the hospital is still on your dresser. Mommy can't even open it. I know your handprints are in there....the ones we took after you passed. The little hearts we made for your sister are in there. Your hospital bracelet and you donor medal are in there too. I bet not many people know that they put all those memory making things in there for you when you lose your baby. You leave the hospital with it. A box. A freaking box is all I have left of you Travis.

I've been thinking we need to get your sister into a nightly routine before she is too old and stubborn. I just can't bring myself to do it. The only rocking chair we have is in your room. The bookshelf with all the books is in your room. I think about how you and I would sit on the floor and read a few books. You'd listen as you drank your milk from your sippy cup. We always ended on Night, Night Prayer. I love how you would lean against me. Then we'd brush your teeth and snuggle together as I rocked. I always sang you "You Are My Sunshine". I imagine that I want to have a similar routine for Addie. Buggy, will you be angry? If I read her your books is that okay? I will find a different book to end with....I just can't open Night, Night Prayer....I think a couple pages are still stuck together from your milk. I have to pick another song for her too......it is just too painful.

I don't even know what to do with your room. I can imagine we will just leave it that way it is until we welcome another baby into our family. Then, gosh.....just the thought of having to put away your things kills me. You and your things belong here baby boy. By the way....your sister weighs 17.9lbs now. She is wearing size 3 diapers....that is the size you were wearing. She is using that box of diapers I bought for you the Sunday before your surgery. It is hard to imagine that in a month or so she will weigh as much as you did. Daddy and I were talking and we just remember you bigger. I think that had a lot to do with your personality (larger than life) and our love for you! Addie, although big, doesn't do much yet and it makes our house so lonely. I miss having to clean up all your messes. Your tricycle is still sitting right where you left it and I can imagine that you miss it. I hope Heaven has one with a bell, just like yours.

Travis, I never realized just how painful the "what ifs" would be. Daddy and I constantly ask questions about our choices. We researched, we asked questions, we thought we made the best choices for you. We have to go back to the hospital soon and talk to your surgeon to get the results of your autopsy. I am praying that there is an unavoidable reason for why you were stolen from us. I can't imagine how we will live if it was some sort of error in judgement. To be frank.....I just can't imagine how will we live.....regardless.

I love you Buggy....and I miss you. I hope you know just how much your memory is alive!!!!!

Easter Sunday - Not quite the same.

Although Nicole and I didn't feel like celebrating Easter today, we managed to get Addison all dolled up for her first Easter. She wasn't interested in the eggs either, just like her big brother. I kept thinking about how much fun Travis would have had today looking for all the eggs. He was so interested in everything and would have been the star of the day. No holiday or birthday will ever be the same.

Easter 2010 - Travis' first easter.

Easter 2011 - Addison first Easter

A Brave Face

We really know how to put on a brave face.

Our therapist asked us Wednesday if we talk to each other about our feelings. The answer, no. We just don't have the energy. We get up, go to work, come home, eat dinner, play with Addie, get things ready and have a few minutes at the end of the day to zone out on t.v. We are exhausted. Grief is physically and emotionally exhausting. It takes a HUGE amount of effort to slap on a brave face during the day. I wonder who sees the truth?

I wonder how many people realize that we are still and will forever be in pieces. This hasn't gotten any easier...in fact....it's harder. I wonder who sees the red puffiness around my eyes in the morning from a night of crying. I wonder who can tell that I start EVERY day with tears on the drive in and they usually fall freely as I sit down at the desk in my classroom each morning. I wonder if my coworkers know how much I am hurting on the inside. How many of my students notice how often, during a math lesson, I will catch a glimpse of Travis' pictures on my bookshelf and lose my breath? Or how when I point to something I notice my "Travis" tattoo and pause. Rides in the car just about kill me. EVERY.SINGLE.SONG. reminds me of what I have lost. I cry big sloppy tears when I drive. I wonder who can see my interactions with Addie and how strained they are. She is such a wonderful baby and I can't fully embrace her because everything she does reminds me of Travis. I wonder if anyone can sense the guilt I feel about that.

I smile, I laugh, and I can do a nice job of acting "normal".....but I am broken. My spirit is broken.

I met a heart family last night that have a 6 week old son who is in the NICU waiting for his Norwood. I wanted to meet them to tell them that all this pain and the constant worry when Travis was here....it was all worth the 16 months we had with him. I think it would have been worth it even if I had only had 5 minutes with him. When they started their journey Travis was vivacious, happy and alive. He was a success story. I don't know what happened. I just honestly can't believe we are in this place now. One of the ones that didn't make it. They called me brave. I think they are. I mean they sat there and looked their biggest fear in the eyes. They are just beginning this journey and trying to cling onto hope and they were brave enough to come meet me knowing that our story doesn't have a happy ending. I wish so badly that it did but the truth is.....HLHS is a horrible syndrome. People just don't see that even those who are doing well have parents who suffer extreme anxiety, worry constantly, wonder just how long they have, panic at the first sign of a stuffy nose, stay up worrying about SATs, and live with a constant, painful fear of being in this place where we are at. Nobody wants to be here and sometimes people don't even want to acknowledge those of us that are.

Someone posted on facebook today "Life is Perfect". Our life right now? Not even close. It was....we held it in our hands for a few months....our perfect. Now, it is gone. And we have no choice but to slap on our brave face.

This is Gonna Damn Near Kill Me

I "celebrated" my birthday yesterday Travis. I use that term loosely. It was a hard day. I just miss you so much. Having a birthday meant remembering YOUR birthday. Having a birthday reminded me that I have to live my next year without you. A friend dropped off a little gift to me after school, it reminded me of when you and I took her cupcakes last year. It was the first time she had met you. Lots of my coworkers ran out to take a peak at you. You just sat in your car seat so smiley and alive. Yesterday, daddy bought me a little present. First, a picture of He and Addie in a frame. It hurt me so much that our new family photos won't include you. He also got me a heart keychain engraved with your name and "forever in our hearts". It pained me to read that. I don't want you in my heart, I want you in my arms. Travis, we all went out to dinner. It was also rough. Mommy is so short on patience these days. I just don't want to deal with anything. I just don't want to live this life without you. Your sister has your same smiley personality but even that doesn't pull me out of my funk. We also had a birthday party for your daddy and I on Friday. It took my mind of you for a little bit....when the guests left the sadness came back. I felt guilty for even having a party. I mean, I am not at all happy. I am not sure what I was even thinking. Your daddy and I are just trying to fill our time with "stuff". I've planned many things just to keep busy......just to keep moving. We don't understand when people call us strong or tell us we are an inspiration. We have no choice Buggy. We either live with the sadness or die. There is no in between. We have no choice.

I love you so much and I wish that just for one more time I could hold your sweet little cheek against mine and sing "you are my sunshine" as we rock to sleep.

Bringing Hope to Broken Hearts

Sisters by Heart is continuing its mission to inspire and support newly-diagnosed HLHS families.

With your help, we can reach more families and spread the word that a diagnosis of HLHS is not the end, but just the beginning of a life-changing and rewarding journey.

Our children, both survivors and angels, bring us HOPE for the future of HLHS. Please, share our message so that we may continue to reach out to those in need.

My Sweet Boy

Dear Travis,

We gave your sister a bath today in your duck tub. My heart sank when the beak quacked. You always thought that was so funny. Earlier today I was trying to remember how you moved your hands when you heard the Itsy Bitsy Spider....I was so sad that I couldn't visualize it. I don't want to forget those little things we shared. Daddy helped me remember. He misses you Travis. I can see it. His soul is aching for his boy....and mine is too. How unfair this is to have held you for such a short time. I was at Target yesterday buying Addie a book and I saw "Night, Night Prayer". Everyone must have thought I was crazy because I immediately started crying. I could picture us sitting on the floor in your room like we did every night. Some nights you were too tired to even finish and you would lean back against me as I read. On the nights you made it to the end, we held your hands together and prayed "And thank you most of all dear God for watching us with love." I hope God is watching out for you now. I pray you are sitting with Jesus. I pray that you are happy and most of all I pray that Heaven is real. I can't bare to imagine that I won't see you again one day.

Do you know you gave me the greatest gift? You made me a mom Travis. I had waited my whole life to have that title and I was so thankful. Then, to top it off, God gave me you....sweet, special you. Your smile, your eyes, everything was perfect. We were so happy. Now, there is such sadness. Addie brings small bits of sunshine but, we are not whole with out you.

Buggy, I hope you aren't mad that Addie will grow to use your toys and do the things we did with you. I hope you know that we are never trying to replace you. Our hearts ache for you and the memories sting more than you can imagine. Our hearts ache for all the memories we were robbed of. Mr. Man, your daddy and I miss you. I'm not even sure how to live this life without you.

All my love forever,

Mom

Going Through the Motions

It has been almost two months since Travis passed away. God, I can't believe it has been that long since I have kissed my sweet little boy. It feels like every day my heart is getting heavier. It is hard to have the energy to do much of anything lately. We get up, go to work, come home, and repeat. All of the joy we had is missing. Even Addie isn't snapping me out of my funk lately. I feel so guilty to even say this but my bond with Travis was deeper. Maybe because of the situation, maybe because he was my first born, maybe because he was older and full of spunk. I don't know. He and I just had a special connection.

I feel like such a failure right now. I feel like things are just spinning around and I can't get anything done. I want to be a good mother to Addie but I feel like I can't be. I am very protective of her and concerned for her safety but I just don't want to care for her right now. Does that make any sense? A friend of mine said she imagines that it is similar to post partum depression.....wanting to be the best mom but you just can't. I hate this! I feel so guilty because she deserve so much more from me. She is the cutest thing but everything about her reminds me of Travis. And I feel guilty for feeling this way. My grief comes with SO.MUCH.GUILT! The depths of that I am not ready to get into but it is crippling.

I get online in the evenings and read blogs. Today I read a heart blog and I was so sad to see that the blogs of all my Sisters By Heart were on their blog roll except those of us who lost our HLHS babies. How sad is that? Now, the story of Travis and this blog has turned into one of those blogs that I didn't want to read when I was pregnant. You know, the ones that don't turn out the way you want them too.

I started a Facebook page for mommas who lost their heart babies. We all share things on there that we weren't comfortable sharing with heart mommas that have their babies. Recently people were posting pictures of their baby's headstones. I can't even believe I am living in this reality where I have to look at those and share what we did for Travis. Some days are just to much for me. I don't want to be on this side of HLHS. I want to be where we were. I want Travis here with me. I don't want people to admire me for my strength in losing a child. I want to be admired for being a good mother to living children. I just want to wake up one day and not have such a heavy heart.

Every song on the radio reminds me of my beautiful boy. This lyrics sticks out to me right now:

"But I know soon we'll be together
And I can't wait till then
I can't wait till then"

I just wish things were different. Wish we were on the other side of all this.....

Tested

"But her pain right now is deeper
Than her faith in God and Church"

I Get Angry

I get angry.

I get angry when parents of my students say "That's sad" in response to hearing the news. Really, that is all you've got? Yeah, it is sad. Beyond sad. Incomprehensible, really.

I get angry when people compare the death of a parent to our grief....it is totally different. Children are not supposed to die first. I've lost both a parent AND a child and I can safely say it is different. Please don't compare it......

I get angry when I see the clothes hanging in his closet that he will never wear.

I get angry when I see people at a restaurant losing patience with their kid. I would give anything to be frustrated with Travis....

I get angry that Addie has to grow up without her brother. She was supposed to have him as her guide.

I get angry that my mom is hurting so much. She was sooo happy to become a Nana.

I get angry that God took Roger's boy. I know he dreamed of doing "boy things" with Travis and I feel like he was robbed. I am so scared that I won't be able to give him another boy.

I get angry when people don't allow us to be neurotic. I lost my son....I am determined to keep my daughter alive. Please understand that I have nightmares about her passing too.

I get angry because I am negative and depressed and sad. Nothing is bringing me joy. I am fearful that my friends will give up on me.

I am angry that I can't stop trying to medicate with food. I want to be healthier for my daughter. I have the best intentions but my emotions ALWAYS get the best of me.

I get angry because I don't know what else to do.....

Another Week has passed

We have made it through another week and I must say that the pain of losing our sweet boy is getting worse and worse. The reality of all of this is just too much to handle sometimes. Nicole and I have gone back to work and when at work we seem to do ok. It just feels like Travis is just away for the day. When we head home the thought of him not being there makes the drive unbearable. Even when we had a bad day at work, getting home to see his amazing smile made all the stuff at work seem meaningless. His smile was special. To think that we will never see his smile again makes it really hard to function.

The "Normal" We Never Wanted.

Nicole and I went back to work today for the first time since Travis has passed. It was really hard to get up and leave the house knowing that Travis would not be there when we returned.

The drive down to the high school for me was easier than I thought, because of the distraction of my favorite morning sports talk show(Scott and BR). Once I turned off the car and headed into my office it really started feeling funny. I then logged on my computer like I have many times before and my desktop picture is of my beautiful boy. I immediately started to get sad and needed some fresh air. I decided to head up to the front office trying to avoid as many teachers/students as possible, but it is hard in such a big school. I ended up walking with the substitute teacher that took my place for the last couple of weeks. We talked for a bit about my classes and as we were about to head into the administration office I just felt overwhelmed with emotion. I had to find a place to let out tears. I used an assistant principals office and lost it. I really haven't let tears out like that since the weekend we had to say goodbye to Travis. With the help of three amazing women I was able to compose myself. I was lucky enough to have somebody help me get through the first class of the day. It got a lot easier as the day went on and it started feeling normal again. I had several awkward moments with my students and who could blame them. They are teenagers still learning how to think and live. Most adults don't know what to say to Nicole and I, shoot we don't know what we want people to say to us. I did have a good encounter with a student who I had last year who always asked about Travis. She would always ask to see new pictures of him and always ask how he was doing. She caught me before I got to my car to leave and just gave me a hug and said "I know how much you loved him, and he does too." I said thank you to her and got in my car to leave with tears in my eyes, but pride in my heart. Travis will be forever in our hearts everyday. Especially the tough days that are ahead as we begin our new "Normal Life" that we didn't want.

Get Away

So, we had this great idea to "get away" and relax for few days. Like that can happen.....

What we wanted to do was get away from our thoughts! Unfortunately, it looks like that is impossible. Every activity, every song we hear, every store we go into.....something reminds us that he is gone and never coming back. We've been doing a great job of" acting normal". I hardly ever cry in public (except when the massage lady asks how many kids I have) but my mind is constantly on him. I run through those last few hours before his surgery, my last time rocking him to sleep, how I'll never see his smile again. I stay up late because I can't sleep....my heart hurts too much. Why did He have to take MY boy? Travis was so strong.....we thought he'd beat the odds. I banked all of my hopes and dreams on it. Now they are shattered and I am a mess. I feel like I need to talk but I don't want to talk to anyone. I feel tired but I can't sleep. I feel alone but I have Roger and Addie. I feel angry but also blessed. How are you supposed to come to a new normal with all those crazy emotions? How am I supposed to "get away" from all this? It's a nightmare and I am stuck living it.......

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Mom and Dad's Letter to Travis

From the moment we found out we were expecting our first baby we were thrilled. I have never seen Roger more excited than the day we found out that our first born baby was a boy. He literally jumped up off the couch from excitement. I cried….happy tears. I was happy and my heart was so full watching Roger beaming with pride. We promptly stocked Travis’ room with every sports themed baby item available. I used to joke….”What if he hates sports? What if he wants to act instead?”. Little did we know that we had much bigger things to be concerned about…

When we found out about Travis’ special heart we were terrified. The day of his diagnosis was a blur…through the tears, we remember the words “there is no cure but there is a well defined surgical approach”. We weren’t sure we were up to this challenge. We questioned a lot. Why us? Could we hand our baby over for surgery after surgery? Is it fair? It took us awhile to accept our fate and we decided that our little dude was going to be a fighter and we were going to fight with him! Little did we know that the next year and a half would take us on the most extreme ride of our lives. This journey was filled with fear, questions, unknowns, sleepless nights, helplessness, anxiety and terrifying medical procedures. But through it all there was hope, laughter and LOVE, lots and lots of love. Love oozed out of us….our family….our friends…. and love oozed out of our boy. He truly was the most loving, joyful, smiley baby boy around. The last 16 months have been the best months of our lives.

Travis had gorgeous eyes, a brilliant smile, he said “melmo” and “brobro” when he saw his favorite characters, he LOVED to dance to New Edition’s Cool It Now, he was SO proud of himself when he learned to throw a ball, he loved being pushed around on his tricycle, he loved to watch people (especially kids), he LOVED chocolate pudding and oreos, he loved to snuggle with mommy, he was addicted to his paci and Yo Gabba Gabba. He loved to chase his dogs all around. He loved water: whether it be swimming classes, a bath or just his dog’s water dish. He had a sassy attitude and a myriad of expressive looks. Man, you could certainly tell what he was thinking! He loved staring contests (even though he ALWAYS lost because he would laugh first) and wasting whole rolls of toilet paper. He loved reading and he knew how to “pray” when it was time for bed. He loved Christmas lights and messing with his new sister. He enjoyed life and brought joy to everyone around him!!! It is amazing how many lives one special little boy can touch!

We wanted to thank all of our friends and family for their support and understanding as we fought alongside our warrior. I know it was difficult for some of you to understand the magnitude of his condition but we so appreciate the prayers and love that you all shared for our boy! Through every surgery and difficult time we felt the love from “Team Travis”. We also want to thank Travis’ doctors and nurses who were so gracious and supportive even when we had a million and one questions and even when we wanted them to hypothesize the “unknowns”. We are not sure that there are adequate words to appropriately thank them. Hopefully, looking around this room at all the love that this one little boy brought to the world is proof that they make a huge difference. Travis was pure joy and we are so very grateful for every minute and every memory we had with him!!

Travis, we promise we will continue to support CHD research that may someday find a cure for all the little special hearts. We promise to keep your memory alive. Your daddy and I will always, always have you in our hearts and in our lives. We will make sure your sister knows just how much you loved her. We will miss you more than we can fathom but we will be okay….we know you would want us to be tough…..just like you, our little warrior. We love you Buggie!

Celebration of Life - Travis Tribute

I was able to upload the video that was played at the Celebration of Life for Travis. I wanted to let everyone watch it who did not have the opportunity to attend.

Click Below

Travis Tribute Video

Seriously, Dress Casual

Just to clarify, you can wear jeans tomorrow. We are wearing nice jeans and red shirts. Roger is wearing an Elmo shirt for his boy. NO BLACK! We want to celebrate his life, not mourn his death!

Wear Red for Travis!

Please remember to to bring a blanket or a chair and your favorite memory of Travis on a 3x5 white index card. Please also dress casual and in wear red.

If you are not able to attend the Celebration of Life please still wear red tomorrow in memory of our boy! Take a picture of yourself and e-mail it to us at nicole_gagne18@yahoo.com We will post it here so we can share everyones love!!!!

Celebration of Life - Music Requests?

If you have specific song that you would like to dedicate to Travis to be played at the celebration of life please e-mail Frank Quinones at Sunset Sound Productions. He is putting together a playlist and wanted to add a special touch to it. You can send him an e-mail at sunsetsoundproductions@yahoo.com

We have already requested the New Edition classic "Cool it Now." It was Travis' favorite song after he got a bath. For some reason it calmed him down and made the process a lot more fun.

What ifs....

The what ifs are driving me crazy right now. So many things to wonder about..

What if we didn't agree to surgery on the 17th?

What if we pushed it out to March?

What if he hadn't fully recovered from the croup?

What if he wasn't ready?

What if we had received the message that Mark, our pastor, was outside that morning to pray with us?

What if they had left the breathing tube in longer?

What if he wasn't ready for it to come out?

What if I hadn't traded with Roger that morning at 5am to go sleep?

What if I had just stayed there and held his hand myself?

What if they hadn't tried to have me hold him before he coded?

What if the had pout pace maker wires in?

What if they hadn't sedated him quite as much?

What if he was scared when he opened his eyes that next day?

What if his last conscious memory was one of fear?

What if he doesn't understand why we had him and put him through all this?

What if he's angry at us?

What if there is no heaven?

Travis Gary DiCarlo 10/23/09-02/19/11

Travis Gary DiCarlo, the first child of Roger and Nicole DiCarlo, was born on October 23, 2009, in San Diego, CA. Travis was born with HLHS, Hypoplastic Left Heart Syndrome, and fought valiantly until he lost his battle on February 19, 2011. During his short time here on earth, Travis touched many people who followed his story on a blog his parents created at www.teamtravis.info. Most people will remember his big beautiful blue eyes and his million dollar smile. Despite his special heart, Travis was always happy, watching and dancing to Yo Gabba Gabba, chasing after his dogs, and people watching.

Everyone who met him fell in love instantly. Travis was a true warrior and will forever be missed by his family, friends, and people across the country who never even met him. His legacy will live on as his parents made the selfless decision to donate his organs so that others may live. The family requests that those who loved Travis please consider organ donation, the greatest gift of life.

Travis is survived by his parents Roger and Nicole DiCarlo of Fallbrook; his younger sister, Addison Sue DiCarlo; Nana Sue Roberts of Vista, Grandparents Roger and Karen Sue DiCarlo of Temecula; Aunts Tina Gagne, Deb Hawes, Jen Mulloy and Angela DiCarlo; Uncles Daniel DiCarlo, Ryan DiCarlo, and Don Zollo; Great-Grandmother Jane Williams; numerous friends and family, and the entire CHD community. Travis was preceded in death by his Papa, Gary Gagne’.

The family is extremely grateful to Rady’s Children Hospital; Kaiser Hospital; the Ronald McDonald House; and Doctors Lamberti, Levy and Klaudt - all of whom fought so hard for our angel Travis. The family also extends its thanks to all of the many doctors, nurses, and staff that participated in Travis’ care. The family is extremely grateful for Mark Kuhn, the family’s pastor and his wife, Carol Kuhn, who have been with the family since the beautiful day of Travis’ birth.

A Celebration of Life will be held on March 6, 2011, from 1:00-4:00 pm at Williams Barn at Walnut Grove Park, 1950 Sycamore Drive, San Marcos, CA.

Donations can be made to the family at teamtravis.info, HeartSisters.blogspot.com, or the Children’s Heart Foundation.

Hotel Information for Out of Town Guests

We have arranged a couple of hotel blocks for our out of town guests. If you are in need of a hotel for Travis' celebration of life please contact one of the following:

Marriott Towne Place Suites
2201 South Melrose Drive
Vista, CA 92081
760-216-6010
$93/night; $140/2 bedroom suite
Mention code: .....Coming soon...
www.towneplacesuites.com/SANVI

La Quinta Inn
430 Sycamore Ave
Vista, CA 92081
760-727-8180
$61-66/night AAA rate

I Miss You...

A Child Loaned

This is a poem is found in the prologue to the book

Hypoplastic Left Heart Syndrome: A Guide for Parents

I'll lend you for a little time

a child of mine," He said,

"for you to love the whole while he lives.

It may be six or seven years

or twenty-two or three,

but will you, till I call him back,

take care of him for me?"

"He'll bring his charm to gladden you,

and should his stay be brief,

you'll have his lovely memories

as solace for your grief."

"I cannot promise he will stay

since all from earth return,

but there are lessons taught down there

I want this child to learn."

"I've looked this wide world over

in my search for teachers true,

and from the things that crowd life's lane

I have selected you."

"Now will you give him all your love

nor think the labor vain,

Nor hate me when I come to call

and take him back again?"

"I fancied that I heard them say

'Dear Lord, Thy will be done,

for all the joy the child shall bring

the risk of grief we'll run.'

'We'll shelter him with tenderness;

We'll love him while we may,

and for the happiness we've known

forever grateful stay.

But should the angels call for him

much sooner than we planned,

We'll brave the bitter grief that comes

and try to understand.'"

*Edgar Guest