Wonder Woman Wednesday

I am so excited to introduce you to Candice and Dahlia

{aka: Cooper's girl #1, seriously is it in poor taste to arrange marriages in this day and age?}

 

I can not put into words how much Candice and Dahlia mean to Cooper and I. Candice was the very first Williams Syndrome Momma that I met in person. She lives in our area and we had the pleasure of meeting at the Williams Syndrome Christmas party. This was less than 2 months after our diagnosis and meeting her was the first sense of peace that I had. I remember thinking  "oh.. see... I am not alone and look how happy and strong and lovely she is. I can do this too" It was like meeting her gave me the permission to me "okay" I love her and I know you will love her.

 

I am seriously, Dahlia is to die for!!! Candice is a professional photographer so all of these images are credit to her. Want to hear some good news? She is going our family photo's this year so I know they will be amazing!

 

Please visit her site here.

 

From Candice: As with all my other Wonder Women this is so well written. It pulls at your heart strings.

 

 I knew something was wrong my entire pregnancy, but I couldn't get anyone to listen. I am a plus size girl, and I had gained only a couple of pounds during my pregnancy, and I knew this wasn't right. When Dahlia was born via a scheduled C-section, the cord was wrapped around her neck five times. She wasn't breathing and was only 3 lbs and 4 ozs. The doctor actually asked me if we could have misjudged her due date by several months (obviously, this wasn't the case, we had sonograms starting at six weeks, LOL!) They called a code, but just as everyone rushed into the room, she began to breathe and I heard the tiniest, sweetest sound. Her first cry was so small I wasn't even sure it was her. She sounded like a muffled kitten.

They found out pretty quickly that Dahlia had some heart problems and she began to turn grey-ish and really bright orange. She had really severe jaundice She was transferred within a day and half to a higher level NICU in SF, about an hour and a half from our home. They checked me out of the hospital early and we followed her there. For the next ten days, we both underwent extensive testing; every theory from a virus to simply just being small, to all kinds of complicated and rare diseases were checked out. After meeting with the genetics team, the decided to do a micro-array test, just to be sure, but they assured us that this was just a precaution as they didn't think she looked like she had any sort of genetic syndrome.

 This made us drop our guard. We were still on a quest for answers but didn't think the answers would come from them. Ten days from our arrival at the SF NICU, we arrived at the hospital a little late as we had had to battle some pretty awful rush hour traffic for a couple of hours. We heard the genetic team was looking for us and we didn't really think too much of it. They met with us in one of the NICU parent breast pumping rooms and slowly began to tell us about Williams Syndrome. I have a hard time explaining the utter and complete devastation that hit me. My stomach hit the floor and I couldn't cat my breath, everything around me went fuzzy and narrow. The genetics team was telling us things like "developmental delays," "cocktail personality," and "heart and other health problems." The ended with telling us that we were looking at her functioning at "about 12-13 years old," and "she may be able to hold a small part time job and might be great at music." It was too much and not enough. They also didn't want us to do any research on the subject until they could meet with us again the following week.

Of course we didn't listen. We spent every moment that Dahlia was sleeping or having testing done in the NICU on the internet looking for any sign of hope. I cried all day, everyday, in the NICU, driving to and from the NICU, while taking a lunch break, while reading about Williams Syndrome. I have no idea how I actually made friends with the other parents in the I wish that they had left us more room for hope when they had spoken to us. There really is so much more hope than we were originally led to believe. We were able to leave San Francisco when Dahlia was three weeks old and weighed four pounds.

 

In my short time of being special needs parent, I have learned so much about myself, others and most especially my sweet girl. I have learned that there is so much hope and beauty in the smallest things. Dahlia is our first child and we knew we would get excited about her milestones, but now, they hold so much more depth of meaning. I had never felt more excitement than when she cruised for the first time. When she waved to me, I cried. When she gains even the smallest amount of weight, we cheer so loudly. She is an amazing, smart, and sweet little person who doesn't need me to feel sorry that she has a syndrome, she just needs me to push her a little harder and cheer a little louder when she accomplishes her goals. She will do everything that she wants to do and I will be there to makes sure that this happens for her. I have also learned that there is so much kindness in unexpected places and in strangers. Especially within our Williams community. We met our first family within a couple weeks of coming home from the hospital!-an ex-coworker of my husband's heard a group of friends discussing what was going on with Dahlia and contacted him immediately, her boyfriend's brother had Williams Syndrome!-and it turned out that they lived less than two miles from us. Another family also reached out to us, they lived in the next town over, and they had us over to meet their wonderful son. And then, at a Christmas party put on by our amazing WSA Regional Area Representative, we met a few families at one time!-and your family was the first that we met with a little one so close to Dahlia's age, Cooper and his sweet and bright personality really lifted us up!-this meeting and the previous ones were the turning point in how we felt about Williams and made us feel normal and happy for the first time. Thank you so much for your part in this. We had felt that we were never going to a normal part of a community again, and now we are :)

Seriously, can you handle how cute she is?!?