There has been a lot of posting and chit chat lately in my little WS community over what the future holds for our little peanuts. I am not, by any means, diminishing people's fears or worries over the future, but in many respects, I am not as concerned over that. Is that wrong? Should I be more concerned about Clare's future?
Shawn and I are in the process of updating our wills and setting up a Special Needs Trust for Clare. When she is an adult, to qualify for state services (such as SSI, Medicare, etc.), she cannot have assets totaling more than $2,000. That means nothing - no savings account, no savings bonds in her name, nothing like that. A Special Needs Trust will protect Clare when Shawn and I have both passed away by allowing Clare to inherit her portion of the estate in a trust form without running the risk of jeopardizing her medical insurance and income. This is how Shawn and I will be able to provide for Clare once we're gone, without that burden falling solely on Jamie or any other future siblings. Now I think that is very forward-thinking of us! I don't know how many 20-somethings (okay, one 20-something and one 30-something) do that. But being the product of a father who is one of the vice presidents of a life insurance company and a mother who is a wills and estates paralegal, there is some pressure to have this all under control! So I have thought about Clare's future, I am just not freaking out about it.
I don't know what Clare will be like when she gets older. Right now, I can only see the amazing, sweet, snuggly, loving, silly girl that we have. Her personality has exploded over these past few months. She has quite the little sense of humor. Clare thinks that putting any object in her mouth and holding it there, minus hands, is hysterical. She loves to play peek-a-boo. Her new favorite "thing" is Jack the kitty. She is usually attached at my hip these days (a little bit of separation anxiety going on here). Two days ago, she learned that a cow says "moo" and, yesterday, that a horse goes "neigh." (And she will repeat this for you if you ask her a zillion times first!) She has crazy curls popping up all over her head, a nice golden tan, and the most beautiful dark blue eyes. And, right now, she has a hacking cough and a high fever, so we are going to the doctor's this afternoon. That's all I can see right now. That's my focus.
Part of me knows that if I start thinking of Clare's future, I will most likely freak out. And cry. The future is uncertain for any of your children, but when you have a special needs child, I think there is even more of a degree of scariness out there. There is the question of how functional Clare will be. Will she ever hold a job? Live independently? Have friends? Have a boyfriend? And, if the answer to all those questions is "no," what does that mean to Shawn and I? Because, honestly, part of my worries over Clare's future would involve worrying over our future as well. Will we ever be "kid-free" again? Will we always have Clare to care for? And when we're gone, who will care for Clare? Of course, we are starting to get things figured out financially, but that's only a small part of the bigger picture. What about love, support, companionship? It's easier to just not go there sometimes.
Maybe all that worrying would be for nothing. I just don't know. And that's why I am choosing to live in the present. I want to just enjoy Clare's babyhood (what's left of it, since she is already almost 17 months old!). We will cross those bridges when they come.