Tuesday, August 31, 2010



I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
a young man who's family is going through the same thing we are shared this with me and i thought id share it with you too... this is how i feel and i am not alone ... our dreams of what could have been have been shattered  and it is time for us to make new ones.
Best of luck to you Little Will your journey starts soon and when Olivia is here we will have to have you two meet ... :D
thank you Kohn family for sharing your journey with us .
update a little later on the doctors appointment today... i am starving and dont have the energy right now.

The day we learned that "Its a GIRL"...and a few days after...When it changed.

AUGUST 9 2010             
 We woke up early this day.. I remember being super excited about going to our appointment this would be the first appointment and ultra sound that Chris was able to be at so both of us could not wait to see our little angel moving around. By this point all bets where in and Chris was dead set on the FACT we where having a boy, but I had a good feeling we where having a baby girl. We got in pretty fast and the tech was very nice and chatty with us. She got a lot of really good pictures of our baby it was so exciting. When she asked would we like to know the sex i think both of us screamed yes :) and she rolled the wand over my belly and as clear as day you could see two little legs... by this time i had a huge smile on my face and i knew that was my little olive in there! she tells us i have to tell you we think it is a girl but i am almost 100% sure it is! "HA I TOLD YOU!!!!  I tell Chris and both of us where smiling so big at this point.
             I guess about this time is when we should have realized that the tech was having some issues (but i think the excitement of her findings put us on cloud nine) she had me roll into different positions to try to get a picture of Olivia's heart but couldn't get ones she liked ... she said "she is already very stubborn!" i think they say these thing so you don't freak out by then we had already been in the room for 45 minutes... this isn't normal. she tells us that she needs to get another set of eyes to try to take a few more pictures. this woman takes a few more and you can tell in their faces that something wasn't really right... but like i said we didn't seem to even notice at the time i mean come on we just got great news we are having a little girl.
AUG 13th 2010
After dropping Chris off at the airport to return home to England I drove back to my parents house to get some sleep and try not to think about missing my husband...besides i only had a few more weeks left in California before i was planning on returning to our house in England. Or at least that's what i thought. i must have been napping for about 3-4 hours when my dad came into my room to give me a phone call. it was my obgyn Dr. Bippart. He goes on to tell me "i don't want to alarm you but the ultra sound results came in and i want to send you to a specialist. they had issues getting clear pictures of your baby's heart and we need to get some good one. don't worry though the machines here are not as good as the ones where i am sending you. they will be calling you to make a appointment." about ten minutes later the people down at Sacramento maternal fetal medicine called me and set me up for the 19th ... why do they do that to you call with unsure/bad news and make you wait so long... ??? by this point i am pretty sure i knew something was wrong. i tried to tell myself that nothing was wrong and that our little girl was perfect that she was being stubborn like me and made it hard to see her heart.

AUG 19 2010
My mom went with me to this appointment and thankfully she did. On this morning i woke up feeling pretty normal but something was irritating me in the back of my head. i guess i sort of knew it was coming. while the tech guided the wand around i took in every little image of my little girl because something in my heart told me that this is the calm before the storm and boy was i right. when the tech had pulled up the images of Olivia's heart i felt my stomach sink. it really didn't look right... but what do i know i am not a doctor so i tried my hardest to shrug it off. when she was done getting the images she needed she said that the specialist would be right in to talk to me. I remember reading about him online the night before so i knew that this could not be good. he took a few looks at her heart and moved her around a bit and then this is when my life changed forever. He helped me sit up and told me "I'm sorry but there is an issue with your baby's heart... it is called HYPOPLASTIC LEFT HEART SYNDROME" ... i had no idea what this meant but i could feel the tears welling up in my eyes and my body began to shake. he explained to me what this was and i knew that this was serious and that my baby girl in fact was not okay. that day i had an amino done where they take a large needle and poke you in the belly and get fluid from the sac where your baby is... it was so scary and you cant move or you can possibly kill your baby... and i don't care what anyone says but IT HURTS!!!!!!
after all of that we went and talked to the genetic counselor she wrote a lot down and explained more about what was going on.
Calling Chris: telling Chris had to be one of the hardest things i  had to do that day. the day before we had found out that we would not be able to have his daughter Evelynn come to stay with us and that she would not be able to live with us until she was 7 if we where overseas. with him being in the air force and him having no choice in the matter really hurt us both and now this..... plus that day the 19th he missed staff by one point. talk about a rough day... we both cried while i explained to him what was going on and what would happen. This day will be always remembered as the day that changed our lives forever.

i think both of us are still struggling to stay positive and hopeful but when faced with something like this it is easy to breakdown and cry. We ask ourselves why did this happen .... why Her? but regardless we love our baby girl and we are going to fight for her as long as she needs us to.

our first family picture