The Golden Sky Blogfest: Remembering my baby boy

Congratulations to Elisa Hirsch who put together this blogfest and has a book release tomorrow.  Happy birthday Zeke!  

"A dragonfly lights besides us like a sunbeam.

And for a brief moment, its glory and beauty

belong to our world. But then it flies on

again and though we wish it could have

stayed, we feel lucky to have seen it."

My son was beautiful; I know I may be slightly biased, but he was truly something special.  Throughout my entire pregnancy I had an inclination that he would influence this world.  Personally, I thought he was destined to be a baseball pitcher, pro of course ;) because not only are his parents diehard baseball fans, but in so many of his ultrasound pictures, his left arm was up in the throwing position.  

Shane was an active baby during the time he called my belly a home. I miss the moments where I felt his every movement, his every stretch and all of those frequent little hiccups.   Not a day goes by where I don't picture his handsome little face, and the moments where he held my fingers in his little hand.  And because of these moments, my mind, at times, will refuse to comprehend the rapid events that occurred after his birth.

My baby boy lived for 33 hours; they detected a severe heart condition just hours after birth.  To this day, I remember leaving for the hospital saying to myself, "When I come home, we will have Shane." but, in our reality, that didn't happen.  Two days after birth, after being airlifted from hospital to hospital, and after surviving a 5 hour open heart surgery, Shane's little heart just couldn't recover from the immense stress.  Two days after he entered this world, we returned to a home that was ready for an infant with nothing but plaster footprints of his feet.  My life had never felt so empty.

I don't want to consume this post with a discussion on grief.  I have dealt with my grief and continue to deal with it today.  But this entry is not about me...I want this post to be about this remarkable little guy.

What Shane did for me in the 33 hours that he was given, has made me a different person than I was before I had him.  He made me a better person.  But like I said this is not about me; this is for Shane.

Remember earlier I said that I had an inkling that Shane was destined for greatness?  Though Shane will never get a shot as a professional baseball pitcher, I truly believe Shane's impact on this world will be bigger than any professional career he might have had.  Shane's unique heart and his inspirational fight inspired us to start a foundation.  Shane's foundation supports pediatric patients at UCLA's Children's Hospital, as well as supports cardiology projects, symposiums and Congenital Heart Disease awareness.  In the 9 months since the establishment of his foundation, because of Shane's life, the foundation has already gone on to help other children, who too have unique hearts, receive the medical care they need.  Shane's life has inspired this foundation which has been able to sponsor a fetal cardiology symposium where doctor's emphasized the importance of fetal heart screenings with the hopes of making significant changes in the standard prenatal care of what may seem to be a normal healthy pregnancy.  With these significant additions to prenatal care, conditions like Shane's will not go undiagnosed until birth.  With proper monitoring of critical heart conditions, families can be properly prepared, doctors will monitor the baby and have immediate plans for after the child enters this world.  With these influencial changes and advancements, children with severe cases like Shane's will be given a better chance of reaching those "professional" dreams given to us in life.

14 months have passed since his birth and since his death.  I will not lie to you and say that life is easier because I still have my days.  There are still days where I get sad, no scratch that,  I am always sad that I don't get to have him here with me, but for the most part I have coped with this sadness and accept the fact that it will never really ever leave me.  I have days where I still get angry and don't understand why something like this would happen to us, to him.  But, when I take the time to reflect on the impact his life has left, I am able to navigate out of the fog of grief and I am able to smile with sincere happiness knowing that his life is helping others, through the work of his foundation.  With Shane's Foundation, I have been able to find a positive in such a sad situation.  Seeing the work of Shane's Heart and the significant impact that his life has left only makes me more proud of him.  Knowing that his life has inspired people to support patients with Congenital Heart Disease makes me see the positives of Shane's situation.  If Shane's life can help make a change to standard prenatal care, if his life can help another child receive the care they need so that they can thrive in life, and if Shane's life can help bring early detection so a baby's life could potentially be saved, then Shane's life of 33 hours has made more of an impact than my 29 years of life thus far.

I may not have him physically in my arms, but he is forever in my heart.  Like the poem says, "A dragonfly lights besides us like a sunbeam. And for a brief moment, its glory and beauty belong to our world. But then it flies on again and though we wish it could have stayed, we feel lucky to have seen it." I am lucky Shane chose me for his mom and that I was able to have the memories I have with him.  I'm lucky to have been blessed with such an amazing little man.  I feel like dragonflies visit me more often these days; perhaps it's because I take the time to notice; or perhaps it's my baby checking in on me; stopping by to say, "hello", in which case I welcome them anytime!

Truly Inspired

 

Though Shane passed away at UCLA, my love for that hospital and the doctors and nurses who work in pediatrics has not diminished one bit; in fact, my admiration for these wonderful doctors has only continued to grow with every interaction I have with them.

Reflecting back on those days in that hospital when Shane was under their care, I am reminded of the compassion displayed by those who tried to help him.  

On Saturday, Shane's Heart, the foundation established in his memory, was invited to attend a Fetal Cardiology Symposium at UCLA Medical Hospital.  I, who has had zero training in the medical field, had really no idea what to expect at a symposium, other than there would probably be many doctors and nurses there to listen to lectures on fetal heart screenings.  Little did I know how much this event would impact my life.

The symposium was a full-day event.  I met so many people who came up to our table to learn more about what Shane's Heart was all about.  We were even introduced to other families who have also been affected by congenital heart disease.  

The best part of the day for me, was when we were invited to sit in on the lectures.  Perhaps it is because I have so many unanswered questions regarding my own prenatal care, when I was pregnant with Shane, but I found these presentations and lectures fascinating and so educational to those who do prenatal ultrasounds.   For me, I still want to understand how such a severe case like Shane's would go undiagnosed when in my head, it seems so obvious. I've learned that it is not uncommon for cases like Shane's to go undiagnosed because only cardiologist eyes are trained to see certain defects; with that said, the procedures that the doctors were teaching at the symposium are simple enough for any doctor, or ultrasound tech to do they just have to be educated on what to look for.  Unfortunately, heart screenings are not a huge part of standard "low-risk" pregnancies and unless a doctor or ultrasound tech finds an abnormality, they will not be referred to a cardiologist (who is trained to examine the heart) for further heart screenings.   I learned so much while siting in on these lectures.  The doctors that spoke are remarkable individuals who go above and beyond the standard care of treatment, and I know this is what sets them apart for others.  Being able to listening to these doctors teach about the importance of: fetal heart screenings, the most effective techniques in doing such screenings and looking for the proper red flags, only helps me to renew my trust in prenatal care.  I have always felt fortunate for the relationships we have established with the cardiologists at UCLA, but after this weekend I am beyond thankful for doctors like them.  

Since Shane's passing, I have had a hard time stepping into a doctor's office.  I try to avoid any route that would force me to pass by the hospital where Shane was born or the medical plaza where I spent 9 months visiting while I was pregnant.  It's not that I blame anyone for what happened to Shane, but I still cannot make sense of the situation.  I am not going to get into my confusion and frustrations as they are things that I cannot change.  Please don't get me wrong as I will always appreciate my delivery nurse, the cardiologist who diagnosed him, and the NICU team who figured out that there was a problem.  There are some incredible individuals who work at that hospital and by no means would I blame any of them for my apprehension.  

But, what is ironic about this whole experience is UCLA was where Shane was taken, and that was where he died.  I have been able to go up to the floor where I saw Shane for the last time and though it brought back sadness, I wasn't apprehensive to return.  Perhaps this is because of the compassion expressed by every doctor I have met since the days Shane was there.  Every doctor who I have had the privilege of meeting at UCLA has never treated me inferior or spoke to me as if I was a little girl who just didn't understand.  They have understood every emotions I've encountered and they allowed me to just ask the question I needed to ask.  Every doctor who dealt with Shane has offered their time to sit down with us and discuss any questions we have.  We have established wonderful relationship with many of these doctors who first met Shane on September 10, 2010.  In fact the day Shane went through surgery I was introduced to a pediatric resident who works at UCLA; he happened to be off that day and he knew my aunt who also works at UCLA.  Today I feel so grateful to have met him as he as become a great friend who has helped me through the process of understanding Shane's complex case and his diagnosis while also just being a support system like many of our amazing friends have been.  The cardiologist, who was the very first doctor we met at UCLA has become a wonderful support for Mike and I, and I am so fortunate for the relationship we maintain with him.  At the symposium, I was able to listen to Shane's surgeon talk  and I was lucky to have an opportunity to just thank him for what he did for Shane. Though I have not seen or spoke to him since the day Shane went through surgery, I still reflect everyday on the interaction we had with him before surgery and after.  He and his team of doctors took the time to keep us updated throughout the entire 5 hours of surgery, an act that is not required from a surgeon but done anyways.  He got Shane through a very difficult surgery and got I am so grateful for that, and I was very glad I got to see him again this weekend.  He also offered any answers he could give me and expressed his willingness to talk with me further if I so choose.  These doctors are just incredible individuals who really stand apart from so many, not only in their work but in their interactions with their patients.

The symposium really made an impact in my life.  Listening to such incredible doctors speak about making changes in our medical world only proves that there are incredible people who strive to make a difference.  There are too many people in this world who just do their jobs simply by going through the motions, and unfortunately, sometimes those individuals overshadow those who go above and beyond.  But this weekend, I was inspired.  Not only by these lectures, but by the actions that these doctors provide for their patients.  These individuals inspire me to keep trying to make a difference in this world so that other people's lives will benefit.  I truly hope these men and women who I speak of know how much I truly appreciate them and I hope their patients know how privileged they are to have them as their doctors and nurses. It makes me realize that we often times forget to say "Thank You" for even the smallest acts of kindness and that often times we take these acts for granted and feel entitled to it.  Today, I am not only inspired but extremely thankful.  I think it's time we take a lesson from those who do what they do, who do it well; they do it without the expectation of being recognized; they just do it because these are the types of people they are and because they are passionate about what they do.  Whether it's a doctor, a teacher, a parent, friend, or boss, take the time to get inspired by their work and just say THANK YOU.  These people are truly heroes and people who I truly look up to.

Celebration

September was a month of remembrance as we celebrated the 1 year birthday of Shane Shimatsu McCusker.  There is not a day that goes by that I don't picture his sweet face and remember the moments I spent with him.  Everyday I picture those moments where he held my fingers and looked into my eyes as the doctors rolled him into the operating room.  It was the last time I would ever see that beautiful face so awake and full of life.  Every morning I wake up and wish I could pick him up from his crib and kiss that sweet little face.  There is not one day that goes by where I don't wonder and imagine what Shane would look like.  I think about him everyday, whether I see a beautiful dragonfly visit his garden, or I take the time to let the warm sun shine upon me.  I miss him more than anything in this entire world and everyday I wish he was here with me.

For Shane's birthday, his foundation, Shane's Heart, dedicated the entire month of September to raising money for families and patients of the UCLA pediatric cardiology unit.  The fundraiser was a huge success and we raised nearly $5,000 in donations and gift cards to support families in need.  Seeing the success of this event brought so much happiness during a time of such difficulty for me.  I cannot express my gratitude for the support that we continue to receive.  To those who participated and who thought of him on his special day, I wish I could give you each a hug and say thank you for remembering our son!
Mike and I decided that for Shane's birthday we would go to Disneyland.  We decided on this because we wanted to make sure Shane's birthday was a day of celebration.  My parents and Mike's mom joined us as we enjoyed a day at the Happiest Place on Earth.  Mike and I plan to visit Disneyland every year on September 9.  We look forward to the visits with Shane's younger siblings to celebrate their big brother who watches over them.

The O.C. Walk to Remember took place on October 15, 2011, which was also National Pregnancy and Infant Loss Awareness day.  My good friend Angie (who I always talk about in my blogs) got involved in this amazing event last year after the passing of her baby boy Aiden.  This year, Mike and I too wanted to be a part of this event.  It was so heartbreaking to see all of the families who have had to go through something similar to what we went through with Shane, but it was a beautiful day of memorial and comfort.  I met some great people while on our walk; we were able to share stories about our children and it was comforting to feel like we aren't alone.  Before the 5k walk, they held a memorial service where each child's name was read off and each of the parents received a white rose.  The emotion of being a part of that event was so touching and though there were many tears, it was wonderful to be a part of such a huge memorium.  I was once told that when you lose a child, you are part of a "fraternity" that no one ever wanted to be a part of, and though no one should ever feel the pain of such a loss, there are so many other people in the world who are part of that fraternity and understand what you feel.I was able to walk with Kevin (Angie's husband) for a while on our walk.  They are expecting their second son in 2 weeks and the nerves from losing Aiden is weighing heavily on them.  We talked about what "we" know as our first pregnancies ended so tragically.  They lost Aiden at 37 weeks and now that Angie is approaching that same period of time with little Kevie, it is causing some anxiety.  It's been great to watch Angie go through this second pregnancy after having to deal with such a devastating loss and I wish I could take away their anxiety as they await the birth of Aiden's little brother.  I know parenthood is always full of worry, but for families like us, we are just hoping to even make it through the front door with
 our healthy newborns.  It made me reflect on my own experience with Shane and made me wonder what my life will be like when that time comes to have our next child.  It's scary to think about all the possibilities, but I am hopeful and positive that things will be ok.

Every day I miss my little buddy.  When I close my eyes and think, I see a chubby little 1 year old with curious eyes taking in all the new things life has to offer him.  Whenever I think of Shane I see him happy and I hope that is because he truly is.

After yesterday's event, I am truly so grateful for the friendships and relationships I have made with the many people who are a part of this undesirable fraternity, because without the support and the examples set by those who had gone through this before us, I don't know if I would be able to see hope in my life. No one chooses this life, but it is the way one chooses to deal with it, that make us able to move forward.  I am so grateful for the examples set by so many other moms and dads out there and I am continually grateful for the ability to talk and remember our children every day of our lives.  I do not wish this upon anyone, but if I can help someone else who has to go through the loss of a child, I will embrace the opportunity to let them know, they aren't alone!

 

SHANE- your 1st birthday should have been a party in the park with bright balloons and Snoopy decor. Your birthday party was about showering you with more gifts than you would know what to do with and everyone would be swarming around you as your smashed cake all over your face.  I wish that I could walk 3 miles with you everyday, and instead of waking up and walking past your room, I could go in and find you giggling in your crib.  Every morning I picture my life with you in.  I know in my heart you haven't left me, but I wish I could turn back the clock of time to just be able to spend 10 more minutes with you.  I've seen more dragonflies than I have ever seen before, and every time I see one, I am reminded of you and feel your presence closely.  I still can't believe that you are gone.  I am sorry you never got to experience the wonderful things in life.  I wish more people could have met you before you left.  You are an amazing little person who I am so fortunate to have been able to know for 38 weeks and 3 days.  I hope you realize the impact your life left on this world and because of you, so many lives will be touched. Happy birthday Shane!  I love you always my dear so
-Mommy

Remembering Aiden Bailey (Shane's Best Buddy)

A year ago today, Heaven received one of the most beautiful little boys. I was 8 months pregnant with Shane and completely devastated for our friends Angie and Kevin.

Angie and I were nearly 4 weeks apart in our due dates. We had gone through almost every aspect of our first pregnancies together. We shared so much, from stories of cravings, morning sickness, sober bachelorette party nights, and the excitement of having our little boys, Shane and Aiden grow up together. To this day I can still picture the image I had the day Aiden was born. We would have drove down to Orange County to visit the new Bailey family and I would get to hold that beautiful little baby boy who was the perfect mix of his amazing parents. I would sit there holding him, as he rested on my very pregnant belly telling him about all of the adventures he and Shane would soon have. Angie would be telling me stories of labor and we would laugh, as we so often did, about the awkwardness of childbirth.

Unfortunately, this day is just a day that will live in my imagination for the rest of my life. Losing Aiden and watching my friends grieve the worst pain, was tough enough, and then 3 weeks later, having to live the exact nightmare of losing my baby, was something that was NEVER a part of our plan. Shane and Aiden should be here together, not in Heaven, NOT away from their parents who love them more than anything in this entire world.

I woke up this morning and I called Angie. I know the pain of today, as I am anticipating that same pain on the 9th of September. I called to see how she was and to tell her how much I loved them. I just wanted to cry as we talked about Aiden because HE SHOULD BE HERE!

I know in my heart that Shane and Aiden are in a place where they will never have to suffer; where they will never have to feel the pain that we are dealing with here on earth, but that doesn't mean I don't wish for both of them to be here today. I wish that I was dressing Shane in his best Monster outfit, getting him ready for Aiden's first birthday party at the park. I wish I was putting batteries in my camera preparing to catch each moment of Aiden diving into his first taste of sugary cake. I wish that I wasn't writing in this blog about how I wish this day was different.

As Angie and I talked this morning we laughed about at the image that we shared about what our boys were doing. I told her, knowing my son, I bet he has prepared the best monster cake for Aiden to share with all of his special angel friends. I have this image of the 2 of them with their party hats on, smiling down on us, wanting their parents to celebrate this day, because today is a celebration of a life, of a very special little boy, one who was just too special for this world. I am thankful for Aiden and I know he and Shane are running the town in that special place called Heaven!

I know that a year ago today, the out pouring of support for the Bailey's was huge, and I ask every one of you who read this today, to take a moment to remember the life of their little boy Aiden, because Aiden's life, though short, was a life and a life that should live on in our hearts forever! Aiden Kenneth Bailey ♥ August 13, 2o1o.]

The REALITY of reality

Ever since the Real World New Orleans aired back when I was in high school, a secret ambition of mine was to be on a reality show. It's true. I love reality TV, The Bachelor/ette/pad, Dancing with the Stars, Giuliana & Bill, Hell's Kitchen, The Next Food Network Star, Keeping Up with the Kardashians...I guess you could say I am a reality junkie. Unfortunately for Mike, he hates reality TV and can't stand that I watch my DVR'd shows every night, when he would rather be watching syndicated episodes of Friends. I know people laugh at me for my love for Reality TV and of course I get sucked into the drama of everything. Mike can't believe that I hold onto the hope that 1 guy will find love after he dates 25 women, eliminating them week after week (for 6 weeks) and on the final day, gets down on a knee when he finds the love of his life. Call me a hopeless romantic, but I think anything is possible and for the record, there have been couples that HAVE made it. But this is all besides the point. I know that reality TV is not "REALITY". Of course production has the ability to cut and paste audio to make a positive statement come out negative. As an English teacher, I have to teach my students about quoting because removing on word from a particular statement can alter the intention behind it.

What's funny is I got a stint in a reality show last summer. It was a wedding day makeover show that aired on TLC and my friend Jessica was selected to showcase her wedding on the show. Not to ramble on about my reality stardom, but we taped over 10 hrs of footage for a 15 minute segment, and reshot interviews repeatedly, so needless to say, the editors had lots of content to pick and chose from.

To this day I refuse allow myself to believe that Reality TV is 100% fake. Perhaps this is because I really want to believe that people are capable of finding love, or I am entertained by the way these people really live, I don't know. Of course I know that production has the ability to alter scenarios, of course people are going to fall in love when they are in the beautiful country of Fiji not to mention when there is a competition to win a prize, the natural instinct to compete will take over. If a show strictly aired a person's entire day, of course, NO ONE would watch it. Even if you followed the Karashians for an entire day, I'm sure you'd be checking your watch for time. Let's face it, in everyday life, a happy cheerful song doesn't magically start playing when you walk down the street and suspenseful music doesn't play when you get a dramatic phone call from a friend. I know these are all ploys in what makes Reality TV so AMAZING!

I've now just rambled about my love for reality TV when my intensions of creating this particular post was to share the new blog design created by my creative designer, Franchesca Cox. But as I started typing, my mind wondered off and I wanted to share the meaning behind my blog's title, Reality Unedited. The story behind this title, is because I've always thought my life would be kind of entertaining to watch in a TV show. I have some amazingly awesome and unique (in such special ways ;) )friends who would make extraordinary reality TV stars and I'm positive with the proper editing, we would be just as exciting to watch as the rich celebs out there :). But in all honestly, I know that Reality shows are "altered" for viewing purpose and yes they are not 100% accurate, I get it!

To be honest, I could not imagine having to have this last year of my life documented over a reality show. Who knows what kind of editing would have come out from it, nor would I have wanted such a personal life event showcased over TV. I don't even know if a reality show could capture the emotions of the journey we've fought through over this past year. As much as I want to wake up everyday to a healthy (almost 1 year-old) Shane, I know this is my reality, and I know how real it is. Reality Unedited is my way of sharing my real life with people who want to follow it. It doesn't air every Monday at 8 and it is not edited for content, this is the true story of my life.

With that said, I am so excited to share with you all the new design of my blog. Thanks to my wonderful friend Angie, for gifting me a "bloggy makeover" and putting me in contact with her creative blog designer Fran. Fran did an amazing job of designing my blog to truly capture who I really am. Thank you for capturing so much in this new blog design. When I look at it I truly see the unedited reality of my life.

If you would like to learn more about Franchesca's blog designs please visit her website. I hope you all enjoy this new design as much as I do. Thank you again Angie and Fran! xoxo

I should be there

I'm not going to lie and say it isn't hard to see other moms with their babies. I'm not going to pretend that it's not difficult to see children who are relatively the same age as Shane would be. Yes, life is getting better, but it doesn't mean that I don't have my days.

It's tough to be in this situation. To have to play this waiting game of when it will actually be our turn, I mean, we should be there right now. We should be parents to a rambunctious little boy named Shane; we should be making plans for his first birthday coming up in a month or so, but instead those plans are on hold until our next one. It's so hard, because we should be there! I went though the 38 weeks of pregnancy, the 10 hours of labor...I should be a mom! And I know in my heart I am a mom, I just don't feel like one.

Perhaps these feelings are coming from the fact that Shane's 1st birthday is nearly a month away, that this time last year I was pregnant about to celebrate our 1 year wedding anniversary, so looking forward to being able to celebrate year 2 as a family. My friend Angie said the month out of Aiden's first birthday, she hit a wall, perhaps I have found that same obstacle that I need to overcome...

I know my life is happy or is at least getting there, but not a day goes by that I don't feel sad for what happened. Sometimes I get the feeling that some people think "Why isn't she over this already? He was just a baby" and to be honest, some people will just never get it. Yes, he WAS a baby and maybe he didn't live 5, 10, 20+ years of life, but he was MY baby who had 33 hours of life, but it was a still a life and he had my heart.

I wrote an entry about my Friends who allow me to feel the way I feel and how appreciative I am for them being there for us and never making me feel like this is something that I should "just get over". This experience has opened my world to a whole new set of people as well. People from all over the world, of all different ages and ethnicities. I've met some pretty remarkable women out there, who have had to deal with the same situation of losing a child. Where I've met them are through blogs and through baby loss organizations. If you have never had to go through something like this, or never really been affected by something like this, you may not know that there is a world of people who have had tragedy hit them too. No person is ever deserving of losing a baby, and I would not wish this upon anyone. But through it all it's been inspiring to me to read how other women have felt and how they have dealt and it's a support system for this shitty situation. Writing these blogs are a way for us to support each other and ourselves, so that we don't feel so alone. Some postings might be too hard for people to read, but perhaps to someone who truly needs the truth of the reality, it will help them to know they are not alone.

I started this blog to document things in my life, and right now this is my life. I write because it is my way of getting through this. I write because people ask how I am doing and sometimes this is the only way I can answer. I don't expect the world to read it, but if people want to, they are free to read about what goes on in my mind. I don't do this for sympathy, or for praise; I write because I want to, plain and simple! I don't intend to only write about the fact that I lost a son, but right now, this is what I am going through. Shane will always be mentioned in my posts because he is part of my life regardless of whether he is here physically or not.

I wish I could write about our trip to the park and how Shane slide down the slide today, but it's not my reality right now. The reality of today is that I am sad, because I just feel like I should be there already..

To My Friends:

My husband loves the show Friends and while, I can't truly say that it is or was ever my favorite show, I will sit and watch it with him, as long as the Bachelorette is not on at the same time. But this post is not about the show Friends, or about the fact that my husband could probably beat anyone in the Friends Scene It game :), this post is dedicated to all of my friends, and I bet if we had a show dedicated to all of our friendships, it would be so much more entertaining than that show ever was. (haha)

I have always felt that I had some wonderful friends. Some of them I've known since the age of 2, some of them I have grown up with, and some of them I've met in my adult life. But time doesn't define a friendship, nor does a "family" title. A true friendship is defined by the bond that is shared and I am so fortunate to have some of the best friendships anyone could ever wish for.

Since Shane's passing, I've come to realize how truly blessed I really am. Yes, we've had a very tragic thing happen in our lives, but tragedy does not have to define me. I've been to some very dark and sad places since Shane passed away, and there were day's where I thought I might never see the light again, that I would be trapped in this darkness forever. But when I felt that all hope was lost, I would see the flicker of light being carried by a friends coming to find me.

My friends have walked beside me in my journey of grief. They have allowed me to feel the way I wanted to feel. No one ever pressured me to feel a certain way, they just allowed me to undergo the emotions I experienced. They listened when all I did was cry. They allowed me to be angry and upset, they called to be there for me, and they were accepting of whatever I felt on that given day.

I particularly remember a conversation that has resonated with me over the many months that have passed. It took place about a month or so after Shane passed, when one of my friends called. He would call me at least once a week on his way home, he would always tell me he just wanted to say hi and he just wanted to chat and see how I was. Since Shane passed, I had always tried to be strong when I interacted with people; I didn't want anyone to feel uncomfortable around me, so I tried my very best to be strong. This friend and his wife had just had a son, a month or so after Shane was born and every time he called I always asked about the little guy. But I remember this one conversation in particular. After we had chatted some about his baby and we talked about the plans for Shane's Foundation a little, he stopped me and he said: "You always seem so strong, but I want you to know that if you don't feel like being strong and you just want to be sad, you can call me, and I will be sad with you. We don't always have to talk about my son if you don't want to, I won't be offended and if you just feel like crying, I will cry with you." I don't think I ever told him, but hearing him say those words allowed me realize that my friends didn't want me to just "get over it". He helped me realize that those who truly loved us, weren't going to pretend like it didn't happen in order to help us heal. They wanted to be there for us, to hold our hands while they helped us navigate through this difficult time together. It is because of my friends that I write this post.

I have no idea who will read this but my hope is that it will reach each one of my friends who has made an impact in my life.

To My Friends;

Thank you fore being the best friends I could ever ask for. For giving Mike, me and especially Shane so much love and support. The fact that you sat with me, you let me cry, you let me laugh, you let me do nothing, is appreciated more than you will ever know. Thank you for being there for me at 2 am. when I called to give you the news. Thank you for driving out to my home to just hang out with me, go shopping with me, or to sit with me, during those very difficult first days. Thank you for coming to Shane's memorial, to remember the life of this special little boy and for just giving me a hug on one of my saddest days. Thank you for reaching out to me, even if we haven't spoken in years, or have never even met, for sending your thoughts and prayers; for walking with us on Thanksgiving, for supporting Shane's Foundation, and for showing us your love. Thank you for wearing those blue wristbands, on the softball field, in your weddings, and in your everyday lives. Thank you for calling, writing letters, sending messages and for your prayers. Thank you for allowing me to talk, to express my emotions, and most of all for your understanding. I know without all of you, I would be lost in a tunnel of darkness. Without your light I might never have been able to feel happiness again. Thank you for reassuring me that Shane will never be forgotten, for talking about him, remembering him, and for loving him. Thank you for being you and for being my friend. I wish I could find another phrase for Thank You, a more powerful one, to truly articulate my sincere appreciation, but I hope you know how much I love each one of you.

I opened this post by talking about Friends, the T.V. show, so I feel it's only appropriate that I quote the famous theme song to end this entry.

No one could ever know me, no one could ever see me.

Seems like you're the only one who knows what it's like to be me.

Someone to face the day with, make it through all the rest with,

Someone I'll always laugh with, even at my worst, I'm best with you.

But, I'll be there for you, when the rain starts to pour...

...I'll be there for you, cause you're there for me too.

Celebrating Beautiful Lives

July 10,2011- Shane would have been 10 months and 1 day old. God I miss that little boy and I often catch myself daydreaming about what that handsome boy would look like. He'd be capable of smiling and laughing, maybe even walking, and definitely talking, maybe not real words, but words of his own. There is no denying the sadness in my heart but for as long as I live, I will never forget his life, his lesson, and the impact he has left on this world.

Yesterday, UCLA held a memorial service for the children who have passed away at the Children's Hospital. It was a celebration of their lives, whether they were 17 years or 2 days old, each one of them had a beautiful life and it was a touching service dedicated to honor the individual lives of these very special children.

Sitting in the auditorium, staring at the table covered in roses, listening to the music of IZ's "Somewhere Over the Rainbow", it was difficult to not find myself remembering the memorial service we held for Shane, nearly 10 months ago. The sadness of that day revisited my soul and I was mourning the loss of Shane. It was a difficult situation. There was Shane's photo on a board next to other children who were also no longer with us here on earth. We were surrounded by other families who knew too well the pain that I was feeling. I remember sitting there and revising that day of Shane's memorial service. But something was definitely different. Reflecting on that day was like watching from the outside of a snow globe (if that makes any sense). I watched Mike and I grieve, I saw myself hugging my friend Natalie, bursting into tears saying "This is not fair!" I remember that raw pain, but I knew this was a memory.

I knew that life has changed from that day because when I opened up the program to the service I found a poem. It was a poem I have never seen before and for once this poem, being a poem dealing with loss, didn't seem so cliche. As I read it, I found myself liking the message, instead of feeling like it was some stupid saying made just to make me feel better. The poem brought me to tears; it was as if I could hear Shane's heart speak to me. The poem reads:

"And if I go, while you're still here...

Know that I live on, vibrating to a

different measure behind a thin

veil you cannot see me through.

You will not see me, so you must have faith.

I wait for the time when we both

can soar together again, both

aware of each other.

Until then, live your life to its

fullest.

And when you need me, just

whisper my name in your heart...

I will be there."

Ascension by Colleen Corath Hitchcock

The service was absolutely beautiful and touching. Each child's name was read aloud and a message from their parents was made. When each child's name was called, the families were able to come up and place a rose in a vase in the child's honor. It was definitely surreal to be surrounded by other parents who have had to deal with such terrible tragedy. I remember right after Shane's service, I was told by my former coach, who had also lost a son, that we were now part of a fraternity that no one wanted to join, but that we weren't alone in this world. I couldn't help but think about what he had told me, about that fraternity, because here we were, surrounded by other families who have had to deal with the same kind of pain.

Along with the tears of sadness, there was comfort and smiles. We met some wonderful people and were able to share stories of our children. I loved hearing stories of other children as I love to talk about Shane. It's ironic because I remember having a conversation with my good friend Angie, who was my pregnancy buddy. We went through nearly our entire pregnancies together. We shared so many stories, discussed our crazy emotions, and dealt with interesting cravings. We looked forward to our futures filled with mommy dates so Shane and Aiden could play together. I envisioned visiting her in the hospital, seeing precious baby Aiden for the first time, me 9 months pregnant. But the world that we had envisioned and talked about for so long wasn't the reality of what it was going to be. Aiden Kenneth Bailey, was taken from this earth far too early and Angie and Kevin were far too young to have to say goodbye to him. I wasn't sure what was going on in the world when nearly 3 weeks after Aiden had passed, so did our precious Shane. Not only did Angie and I go through our pregnancies together, but we now shared a similar grief.

I'm not going to talk about the journey of grief or the pain that we experienced, as this was not why I brought this up. But I remember during one of our conversations, Angie and I were talking about how hard it feels sometimes to interact with the "normal" world. Not many people know the pain that we've dealt with, and no one, including us, knew how to truly navigate through it. We often talked about our interaction with people and how we both knew that the mentioning of our boys' names might not be brought up by other people because they feared that it might upset us. We both knew that people don't mention them, not because they don't care, but because they just don't know how it will affect us. But for me, and her for that matter, we enjoy hearing their name. I would rather someone acknowledge what happened then pretend like it didn't. I know it's weird for people, especially ones who we may not have seen in a long time, to wonder whether they should say something about him and if you want to truly know, it is TOTALLY ok. Infact, I would prefer it.

I remembered that conversation with Angie when the Chaplain read a poem. It is something that speaks from the heart of many parents who have lost a child. The poem she read went like this:

"The mention of my child's name may bring tears to my eyes,
But it never fails to bring music to my ears.
If you are really my friend,
let me hear the music of his name!
It soothes my broken heart and sings to my soul!"
~Author Unknown ~

 

Revisiting the feelings of Shane's memorial was difficult, but being at that ceremony was the right place for me. To remember Shane along with so many other parents' children, who love their child the same way we love Shane was SO special. I cried because I miss Shane, but I will always miss him, and I am ok with feeling that, because I love that little boys so much, it hurts.

"A dragonfly lights besides us like a sunbeam.

And for a brief moment, its glory and beauty

belong to our world. But then it flies on

again and though we wish it could have

stayed, we feel lucky to have seen it."

Life: Press Play

I'm ready to live life again, to see the world in color; I want to look forward to the future. For so many months I've felt frozen, like my life had been put on pause while everyone else's life went forward at full speed. I was fully coherent, I mean I saw everyone else's lives continue, but mine...mine was stuck and I didn't know how to get it going again.

I think the initial realization came when one of my best friends gave birth to her daughter in May. She had found out she was pregnant shortly after Shane had passed away and her pregnancy just seemed to fly. I remember when I was pregnant, thinking that time passed so slow, but watching her go through her pregnancy was like someone pressed the fast-forward button and BOOM, she was a mom.

It takes roughly 40 weeks to have a baby...40 weeks! It was roughly 40 weeks since Shane had passed away, and I couldn't remember anything but the month of September. My mind lived in that month for so long. All I was capable of doing was reliving those days with Shane over and over again. I look back on these days and realize I was living life by just going through the motions. To be honest, I can't remember half of the months that have passed. I was stuck grieving, I was scared to live life and I was missing my baby boy.

Grieving is a nasty thing! Right after Shane died, I remember wanting to fast-forward 6 months, so that the initial pain would be gone. I figured by 6 months things would be better. But like I said, grief is nasty and at 6 months, I hit rock bottom; the 6th month was the worst month for me. I couldn't figure out if I was sad, or angry, depressed, or all of the above. People would ask me how I was doing and sometimes all I could say was " I don't know". I remember asking Mike: "Will I ever be happy again? Will I ever know what it's like to genuinely laugh, rather than force myself to smile?" I was so scared that I would never feel those feelings again.

Today, as I write this I reflect on the passing 10 months. In 2 months will be Shane's 1st birthday and also my 29th. I feel like my 28th year has been lost, thrown into a world of oblivion;. I have no idea what it feels like to be 28. I mean, it's probably nothing special by any means, but I have no idea what it even feels like to say I'm 28 and truly believe it because the majority of my 28th year has been frozen in time.

Luckily for me, I have amazing people in my life who have been there for me/us through this difficult time in my/our lives. Our family and friends have stood by us and have helped us pick up the pieces to our shattered life. They have been patient and understanding and the most wonderful people in the world. So many people have shown their support of Shane's Foundation and they continue to wear their blue wristbands. To see Shane's wristband still being worn has meant so much to Mike and me. Shane's band has been seen in engagement photos and wedding ceremonies; I can't find the words to express our gratitude and how honored we feel that people would show their love for us and especially Shane in such a huge events in their private lives. I know that without the love and support from these wonderful people, I would not be able to find myself in the place where I am today.

Recently, I've started to see the beautiful colors of life again. I know that I see things much differently now, but I am also not the same person as I was before I had Shane. Shane will always be a part of my life, and I know that everyday for the rest of my life I will continue to miss him. I know I will never feel completely whole without him here with me, but I also know I can feel happy again. I realize that there will be days where I will be sad, but that's a part of me, and I don't want that to change. If you ask me about him, I will speak of him proudly, the worst thing we could do is forget him or try to pretend this didn't happen. I am so proud to be his mom and I am so grateful for the time I had with him. I know he is with me everyday and when I need him, in my heart is where I can find him. With my guardian angel by my side, I'm ready to press "play" on this thing I call, my life...