Sunday, August 20, 2006

The Future

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.

6 comments:

Grand Dad Jim said...

Tree, this is my first attempt at posting a comment to "Clare's Journey". Although I tell you (and Shawn) this regularly, I want to say again how proud I am of you both for all your courage and inspiration. Talk about the "kids" teaching the "old man" great lessons about life!! I have been so greatly blessed by your family and your exa mple of true Christian marriage and devotion to one another. Love to all, Dad

Aunt Joan said...

Teresa & Shawn - I believe that you are living life as it should be lived. I know there is a lot of uncertain future out there, especially for Clare (& other special needs kids). However, with it all uncertain I think you are taking care of what you need to now. Remember Grandma Ruegg's favorite prayer ".....accept the things I cannot change....". God bless you and all parents with a long road to walk. Love, Aunt Joan

Lisa R said...

What an amazing post . . . I could not agree with you more. Actually from your advice and others we are also in the early process of setting up a special need trust and Will. It is a very real process and I suddenly feel more like a "grown up.”

As overwhelming the last six months of my life have been I think a big part of getting by is day to day. There are good ones bad, terrific, average, and some are ok but sad spells . . . and on all of them I make it by laughing at least a dozen times . . . I bet more then that, I laugh a lot :)...My kids and Chris make me happy. Although I have looked to the future and the uncertainty that we share bothers me; your right; it’s no fun to dwell... I hope you all make it out this way I would so love to meet you all...Love You, lisa

Nancy said...

You are such a strong pair of people and great parents. Of course we have no idea what the future will hold for any of our kids, really. As you know, I have made it to the next stage in dealing with this but am still in a lot of shock about this diagnosis, to say the least, now that I am fully understanding it. There is a 19-year-old girl here in town with WS who is quite happy, has had jobs and significant others, and is planning on attending college next year, so I wonder sometimes if Erik will do those kinds of things. However, I have stated quite clearly to everybody that I have no interest in meeting that family yet as it could upset me and serve no real purpose at this time, as she is not my son or who he will be. As for looking into the future, we have to in order to provide for our kids and be educated, but it sounds like you have a good balance of getting prepared and yet enjoying each day as it comes. I am working on that myself, but it is still pretty early for me yet this far into it. Thankfully, it is pretty darn hard not to enjoy the smiles and cuddles I get from our son daily. I feel less freaked out when he is climbing all over me and giving me cuddles. I hope I get to where you are soon. It is a great honor being able to follow along with your family and watch Clare grow. It would be a lot harder to get through this without you.

Aspen said...

You are such a strong example to all of us Teresa! Thank you for letting us watch the growth and development of your precious Clare. It is wonderful to know other moms that walk in my foot steps on a daily basis. Enjoy TODAY!

LOVE LOVE LOVE

Kerry said...

I think your outlook is great and you make a lot of sense on where you are in your life right now. It is hard to think of the future and not worry about what is to come... so let's enjoy these little peanuts as theya re. They are awfully cute! :)