There is a lot to write - about Lilly, about New York City, about our daily lives and our adjustments. I need to post pictures. I need to actually take some pictures. Where to begin, I don't know, but I'll start writing again regularly soon.
But for tonite, I want to say how blessed and grateful I am that I have my Lilly. For the past week I've felt like I've had a split personality, of sorts, dealing with a loss. A girl that I've never met, but I followed the family's blog, passed away from cancer. She was in her twenty's and had Down syndrome.
I never knew her, and yet it's affected me so much. We have been lucky with Lilly's health, but with any child (or adult), Down syndrome or not, life and health are fragile. We never know what the future will hold.
I think of her mom. I haven't been in her shoes, but thinking about it, I can't breathe. I don't know how you go on when you lose your child.
I've never had a child who isn't Lilly, so I don't know for certain; but Lilly and I are intertwined so deeply. Since day 1, I have been Lilly's greatest supporter and advocate. I have loved her so deeply and so fiercely I would do anything for her. I know her thoughts and I know her needs, as it's taken longer for her to express them than the typical child, so I read her mind. And she knows me. She trusts me with her life, her future, and her desires. She knows I understand her when no one else does. She knows I will guide her and teach her and love her without condition. I know she will do the same for me.
I've never had a child who wasn't Lilly, and I know every parent has a special bond with their child. But I think there is something extra special when your child has special needs.
This week I've had Kristen on my mind. I feel for her family even though I don't know them. It must be so hard to lose such a precious gift.
So I am grateful for Lilly. So grateful for each moment. We don't take anything for granted. I am so proud to be her mom. This week she learned how to read, say and sign the entire alphabet, and she can now spell her name (out loud and in sign language). These are the days to remember.