Resurfacing ~ CHD Boston Med

Resurfacing - 1. To rise to the surface again.  2. To emerge after concealment.

This word would describe they way I'm feeling right now.  Many resurfaced emotions.  Deeply hidden emotions in the secluded places of my heart. 

Did any of you watch the Boston Med show tonight?  I had never seen this show until tonight.  I watch very little TV to begin so its's no big surprise I have missed it. I had heard of it before however, but thought it was just another ER show on the block.  Once I learned that this show was a real-life medical drama featuring real stories highlighting the lives of real doctors, nurses and patients then my interest level peaked and to top things off today they were featuring a fellow heart family.  It can't get any more special than that, okay unless they were featuring someone I know or our hospital and/or doctors.  So, it was still pretty special for me, so to the front of the TV I was glued for one hour.  Very rare for me indeed.   

 

A too familiar pain.  Baby Sam and his parents featured on Boston Med. 

No surprise I cried through out the show. Many past emotions both joys and fears resurfaced.  I remembered how I felt when we were first told of Alexa's heart, I remembered how I felt when I gave birth and saw her for the first time, I remember how beautiful and normal she looked and was panicked to have anything happen to her.  I remembered those same polar opposite emotions, Renee, the mom from the show was having.  Both in wanting and needing to be close to and love your baby but at the same time feeling like your placing some undesirable emotional distance between the two of you for fear of losing them. 


I faced it all by my husbands side and it was still a rough road.  She faced many emotions, doctors appointments and diagnosis alone as her husband was away in Iraq while she was pregnant.  Thankfully he was able to make it back for the birth and be there for the sugery and a least a short while after.  I remember how many times I cried on my pillow while I was pregnant.  And sometimes my hubby would wake up and console me.  And other times I would leave the room so I wouldn't wake him.  It was a very emotional time. Pregnancy regardless is an emotional time but facing something like this just rocks your world like it's never been rocked before. 


They showed baby Sam after his surgery being home with an NG tube down his nose for feeding.  I rememered how Alexa needed an NG tube for about a month after coming home.  First because her heart was still tired from surgery and she hadn't yet learned how to handle sucking and swallowing and breathing all at the same time plus she was silently aspirating probably from being intubated.  Those first few days and weeks at home were crazy busy times, and I wondered how we would get through them but we did.   


As I watched the show I heard them before a commercial break announce a website to learn more about mesothelioma as one older man on the show was having surgery for this.  I thought to myself for sure they will share a site before the next commercial to obtain more info about CHD  ...  but sadly none was shared.  A great opportunity was missed.  And I wondered, why?  Is it because they just didn't think of it?  Is it because they couldn't decide which of the CHD organizations to feature?  Is it because there isn't ONE set UNITED group leading the way for the CHD cause?  I wish I could rememeber what the mosothelioma website they featured was so I could analyze it.  I then proceeded to look up CHD.com and congenitalheartdisease.com and .org and nothing came up.  Then I was reading a little bit through the most recent posts in Blog4CHD and came to a post by Nichole, Abby's mom, entitled Ten Wishes, that in part read:

"I wish the CHD community could come together and rally for this cause. I dabble here and there in CHD awareness. I would love to do more; however, I wish that pride and anger or self-serving indulgence did not corrupt our efforts. The squabbles and bickering scare me away enough that I am not as involved as I would like…I want to be involved enough to help change the world, not fight over board policies, presidents of organizations, and which organization has the “rights” to do what they are doing. I wish it was easier to be involved."

I have to say that, thankfully, I have not experienced these sort of the issues with the local group of people I have come across involved in CHD support and awarness.  But I have heard other similar complaints, mostly on-line, about these types of issues occuring.  I know progress is being made.  But I'm pretty sure we (all heart parents) really wish there was at least ONE BIG LIGHTHOUSE lighting the way. 

As the surgeons in the show kept pointing out, this is a journey.  A long journey with a series of steps.  We are on this journey together.  A journey for life in all sense of the word.  I wish and try to offer my own little bit of support and awareness through this blog and will also be donating a proceed of my photography sales to a couple of the CHD organizations like Mended Litte Hearts and/or Children's Heart Foundation or maybe another.  Have not ironed out the details yet but am working on it.  I just know that like my cousin Al ( Hi Al!) recently posted on his fb profile:

"One person can do great things. But people together can do even better."

I know and have faith that the true releif will come at the hand's of God mesianic kingdom. But meanwhile, we have met many wonderful people on this journey, many who are striving to make a difference.  Thank you.