My sweet celiac and youngest, Izzy

Wednesday, September 21, 2011

A special new friend….

I picked my “blog name” for a few reasons…Living without for this family means living without a sick heart, living without gluten and peanuts, living without a beach close by, living without a good grocery storeJ,  living without regret, living without family and friends close by and a myriad of other things….it also means sometimes living without normalcy.  I will not pretend that all families don’t go through their fair share of craziness but man this one does not know normal in the sense most people think of it.  That’s not always a bad thing…..

I can think of very few times in my life that I wished for something more “normal” and it is usually in the midst of a crisis I wish we weren’t in.  I love having my big crazy family and I wouldn’t trade any of them for the world. 

Sometimes though, there is a need for something more normal in a crazy sea of complexity….even if it’s something simple.  Lana wanted to have a job like her friends were getting, most of all her BFF was applying for a job at an ice cream shop.  With the upcoming flu season and being in contact with all those people and handling all that money, it just wasn’t a good idea.  I hate to tell her no since she’s been through so much in her short life but this one I had to push back on.  It just wasn’t a good idea to expose her to all that in the first year of her transplant, although most areas of her life went back on schedule already.  It was upsetting, I think on a couple of different levels but prompted a good talk and some mother daughter bonding;). 

Ironically this fall when I was looking to sign Isabelle up for ballet class I had a neighbor tell me I needed to meet this wonderful owner and dance teacher in town. Come to find out, Laine, has a son born with the exact same heart condition as Lana.  It is rare to meet someone outside of a hospital setting that has her exact same condition (hypo-plastic left heart syndrome) and required a heart transplant much sooner than Lana did.  They ended up having heart transplants in the same hospital.  He is 3 years old and has been through so much.  Hypo-plast babies are very unique, when Lana was born the statistics were one in every million children were born with it….the oldest child surviving at the time was 15.  These kids are special.  Some of you are new to this blog and do not know what hypo-plastic left heart syndrome is, basically the left ventricle of the heart is non existant or severely underdeveloped.  The left side of the heart is your pumping chamber so if it is not there……. you understand the severity of the situation.  We were given three options at birth for her, let nature take it’s course and she would have passed away within a week or less, a heart transplant or a 3 staged surgery to be completed by 2 that essentially rerouted everything through the right side.  We chose the surgeries with a fall back plan of the transplant.  She had a 40% chance of survival and has defied every odd I know of to this date.  There were women who found out in-utero of the condition and were given the option of aborting the pregnancy because the quality of life was so unsure.  THIS is why I say these kids are really special and they are. 

Laine and I have become fast friends and Isabelle is LOVING her as a dance teacher and Noah is now in her hip hop class!  Well, long story short – hahahaha – Lana’s new job will be babysitting sweet Leighton.  He and Isabelle are almost the exact same age so Lana will be quite used to the babysitting aspect but he requires a little more than Izzy does.  This is different though, they share a bond that is amazing to say the least.  They will be linked for a lifetime and will share things that not many people in this world can.  They will help each other in a lot of ways but today, it helps this family be “normal” – whatever that is;).

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