Monday, October 24, 2011

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.

Sunday, October 16, 2011


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


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