It's shocking when we realize how different our children's lives will be from our own, and the milestones that you obtained as a child may or may not come to fruition in the same way for your children. Today, I wrote down each girls' SSN on a federal application form. At 2 and 5 I've already had to apply for them on their behalf as a federal government identifier.
I remember getting my SSN application form and being excited when I received the little white card that meant, to me, that I was allowed to join the workforce. Now that I'm older, I know it means more than that - and I also know that we have one as soon as we're born, but I've never really thought about it until my kids needed theirs. When I saw the request on the form, I did a double take - then I called the office to be sure. "Yes" i was told, "It is better to have them early in your situation, than later on - this way they can be properly identified always".
So, I sit here and quietly mourn the "loss" of that experience for my girls, at the same time knowing that its a loss they will never realize - so therefore not really a loss at all... There will still be moments where they'll feel that hype and excitement, that feeling of wonder and growing up, but that particular moment - the same one that I had, is lost to them.
This seems like a small thing, and one may wonder "Why is she going on an on about this one little card?! Its so silly, just let it go already!". But, its these "little losses" that we're faced with day in and day out. The little things that our children won't experience the same way as us, or even as other children their age. At each little loss we take a moment to ourselves and we mourn that loss. We mourn for our children yes, but we also mourn for ourselves - the loss of the experience for them, the loss of the added experience for us. Who doesn't want to share an experience with their child that they once had?
This constant grieving is a mainstay in the lives of those with disabled children. Yes, we enjoy the wonderful moments that we have with our children, but we do mourn what could have been. This is not to say that our children aren't amazing and perhaps more so because of their disability, but that the expectation of the child that may never be is always there.
However, in this grief, it's important to remember that there is a light. That moment may be gone, but our children have a future, and their future is as bright as the shining stars in their brilliant eyes. In this future, we have time to make our own moments, experiences and memories.