I have a theory: If a life event dictates that everyone you know has to buy you a present, there must be a catch. So I should have known that being a parent, just like being a wife, was going to have it’s moments. I bet any new parent (who isn’t a big fat liar) would admit to thinking from time to time that they’ve made a pretty major tactical error.

I always reminded myself during Simon’s first few months that it was going to get better, it was going to get easier. And it did. Soon he was smiling more, sleeping better and was just generally more fun. So when Ramona was born under difficult circumstances I just kept saying, “Just wait, in a few months things will be so much easier. You’ll get a routine going. Enjoy this time, it won’t last long”.

The carrot at the end of the stick for me was Simon’s first birthday which is coming up April 9th. Ramona would be four months old, rolling over, sleeping through the night. They would be able to parallel play. Someday they would be best buds, maybe even in the same grade. They would entertain each other and I would take long, uninterrupted baths and decoupage things. So when the cardiologist that first night at the hospital told us of Ramona’s heart defect, I actually asked him, “Are we talking wheelchair? Will there be drooling?”. He must have a lot of experience dealing with mentally unhinged parents. He simply assured me that most tet babies lead normal lives after their final surgical repair.

I did a little soul searching when Ramona miraculously survived the surgery and came to terms with this major detour in our plan. It was just a detour, Andy and I were used to that. So when Ramona got her diagnosis of 22q, you’d think I’d be a little less transparent and insensitive. No dice. That very evening I took a nurse aside and said, “Are we talking about the short bus here?”. What is my problem?

I think, as hard as it is to admit, there is part of me that thinks that raising a child with special needs will change my life in ways I’m not cut out for. And I don’t want to be pitied. And I don’t want to be different, unless it’s good different.

So, I’m waiting at the valet stand today for my car and there’s a mother there with her son who has obvious special needs, he’s about ten I think. Normally I think I would have looked at her with pity, thinking, “Boy what a burden that must be”. But my first thought honestly was, “Looks like they’ve been through some pretty rough stuff and they came out the other side. Good for them!”.

So, what I’m trying to say is, I don’t care if Ramona drools, has a wheelchair or takes the short bus. I don’t care if she grows a third eye. I just want her to come out the other side. I just want to get to know her for who she is. Not who I thought or hoped she might be. And I bet I’ve got some surprises in store if she survives. I bet she’ll delight us with small victories, astound us with her gifts and scare us with every setback along the way. And I just hope and pray we’ll get the chance to find out.

Love, Jane.