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!