1 year ago. . .

1 year ago yesterday Isabelle was diagnosed with Kabuki Syndrome.  The doctor told me that day to let go of the hopes and dreams I had for her future and prepare myself that she may never be able to graduate from high school, may never be able to live independently, may never be able to do most of the things that a normal child can do.

Its been a year now and the tears that came that day and many days after are gone.  A lot has changed and while I know that Isabelle's story may not be the one I expected, I realize now that she is writing her own story and it is more amazing than I ever could have imagined.  She is more amazing that I ever could have imagined.  She is beautiful and perfect and more than I ever hoped for.

In honor of her 1 year diagnoses, I wanted to repost this story from Kelle Hampton's blog.  It is the story of her daughter, Nella's, birth.

"I knew the minute I saw her that she had Down Syndrome and nobody else did. I held her and cried. Cried and panned the room to meet eyes with anyone that would tell me she didn't have it. And all I can remember of these moments is her face. I will never forget my daughter in my arms, opening her eyes over and over...she locked eyes with mine and stared...bore holes into my soul.

Love me. Love me. I'm not what you expected, but oh, please love me.

That was the most defining moment of my life. That was the beginning of my story.

I remember my pediatrician suddenly walking in and my heart sank a bit...I knew. I need to tell you something.

...and I cried hard... "I know what you're going to say."

She smiled again and squeezed my hand a little tighter.

The first thing I'm going to tell you is that your daughter is beautiful and perfect.

...and I cried harder.

...but there are some features that lead me to believe she may have Down Syndrome.

Finally, someone said it.

I felt hot tears stream down and fall on my baby's face. My beautiful, perfect daughter.

And then, Dr. Foley added...

...but, Kelle....she is beautiful. and perfect.

When Lainey [our oldest daughter] was in the hospital with jaundice, I remember hugging Brett and crying. I told him if God would make her better, I'd do anything. I'd live in a box, I'd sell everything we had, I'd be happy with nothing...just make her better. When she did get better, that feeling of raw gratitude was real, but it wasn't long before real life set in and I was complaning once again about the dirty grout in our cheap tile and how much I wanted wood floors.

I've often thought about how quickly that feeling left because we have a perfect, healthy little girl running around that erases all the painful memories of when we thought something might be seriously wrong.

I felt that feeling again last week. And as the pain has slowly disipated, I've realized...I will always be reminded. My Nella, my special little bunny, my beautiful perfect yet unique girl will be my constant reminder in life. That it's not about wood floors. No, life is about love and truly experiencing the beauty we are meant to know.

Life moves on. And there have been lots of tears since. There will be. But, there is us. Our Family. We will embrace this beauty and make something of it. We will hold our precious gift and know that we are lucky. I feel lucky. I feel privileged. I feel there is a story so beautiful in store...and we get to live it. Wow.

The story has begun..."