And So it Began...

Telling our story has been difficult. And for some of you reading this, it will be the first time you've heard the true, unrated version.

Dino & I met in 2000 when we both worked for the same company. One beautiful and sunny day I left work and discovered a single yellow marigold tucked under the windshield wiper of my car. It was to be the first of many incredibly sweet and romantic gestures that he would surprise me with over the years.

We were married on April 27, 2002 - bought our first home in July 2003 - completely renovated it during 2003-2004 - and decided to start trying to have a baby during the summer of 2004. Kasia was born on April 7, 2005 weighing in at a not so hefty 4 lbs 3 oz.

But....I should probably back up a bit in order to properly tell the story.

I've never been the most observant person, so it still confounds me that I somehow knew I was pregnant immediately at conception. (I was always the girl who was surprised every month by her period...go figure.) But there was no wondering, no guessing, no maybes. I turned to Dino and with a feeling of impending doom washing over me, told him how I felt we had gotten pregnant too quickly (the first time we actually tried) and with all the conviction of a 4th grader, said I wished we could have a "do over". Something was wrong and I knew it.

By my first ultrasound, it seemed I was correct. The baby was small and as the months passed , she fell further and further behind in growth. In February I was forced to leave my job and put on bed rest to "grow my baby"...like I hadn't already been trying really hard to do that?? Fearing stillbirth, at 35 weeks our obgyn induced labour. Incidentally, throughout the pregnancy he blamed the baby's growth restriction on everything from an inaccurate due date to placenta previa, to a calcified placenta, to a faulty cord. There was never any mention of the possibility of a chromosome problem.

Kasia was born at 35 weeks gestation and came into the world gray and not breathing. There were no shouts of "It's a girl!" and no offer for Dino to cut the cord. Most of all, there was no little cry to tell me she was okay. Instead, for one brief moment my daughter's lifeless body was laid across my stomach before she was whisked off to the neonatal intensive care team and resuscitated right next to me. Dino held my left hand, my mother held my right all the while whispering in my ear that she was a beautiful little girl and that it would be okay. I didn't actually get to see her until an hour later, but when I did, she looked perfect! Ten little fingers and ten little toes. I was so proud of her.

The next 3 weeks were spent in the intensive care nursery and I can recall wondering why exactly we were there. Sure, her birth had been scary, and there were still many questions about why this term baby was so small. Turns out my placenta and cord were perfectly healthy - finally freeing me of the guilt that my body had produced inadequate equipment. But then the question would pop into my head now and again.....why? Why so small? It's funny how we push those questions away so easily.

And then it happened. On the afternoon before we were scheduled to take our daughter home, a doctor that I didn't even know came up to me while I was alone, holding my daughter and thinking about how wonderful it would be to have her all to myself at home. No nurses, no gowns, no constant beeping from all the monitors. And then she kicked me in the stomach. Well okay...not literally, but she may as well have. She flatly announced to me that they had done tests on the baby and that she was missing part of one chromosome but that was all she could tell me. It was enough. I knew all too well how important chromosomes are. Most of the remainder of that day is a complete blur though I do remember telling the nurses that I no longer wanted to take Kasia home the next day and asked them to keep her. Then, God help me, I had to go home and tell Dino.

All I can remember from those early days is being sad. I got through the visits from family and friends wanting to see the baby, made up birth announcements and went through the motions of daily living, but was most often filled with grief that is indescribable even today.

The news however, continuted to get worse. Her actual diagnosis, which I rarely talk about, is a genetic condition with varying degrees of severity, and is the true reason for her tiny size. We were told that Kasia would have significant disabilities and that her development in all areas would be delayed, both physically and mentally. We were told things like she would probably never walk, talk, toilet train, would likely need a feeding tube, and would probably never be capable of much interaction, oh yeah...and that she may die before the age of 2 years.

The news came as a complete shock. Why?!? There was no history of any genetic disorders on either side of our family, but just to be sure that Dino & I weren't hiding anything funny in our own DNA, we had testing done. Nothing. So, as we've come to learn, Kasia's chromosome abnormality had no known cause. It was just the luck of the draw. The scary part....it could happen to anyone.

By the time she was 6 months old I was probably somewhere between the 3rd and 4th stages of grief...somewhere between anger and depression. I should have been well on my way down the long road to acceptance when curveball number two came and hit us smack in the face.

To be continuted....