Sunday, October 16, 2011

Day 16

So I remembered my topic from yesterday.  The future.

As Tera was sleeping on my shoulder yesterday morning, I look around her room and remembered how we had thought about and planned all the little details of her room.  We picked one of the cheapest, but highly safety rated, cribs; used hand me down dressers, searched out the perfect bookshelf and bed/dresser system, had a very crafty friend make the curtains, picked out completely gender neutral bedding, Tom refinished the floor, and then we worked on the details.  We chose two of Tom's Star Wars movie posters (ones I had actually bought him) and hung them carefully.  We also custom ordered three character pictures (Princess Leia, Chewbacca, and R2D2) that we found from an artist at the ComiCon.  We even put quite a bit of thought into the specific characters we wanted in her room (while very open minded, I wanted only characters that represented good in there).  We even bought the piece de resistance, a pricey but necessary Wampa Rug.  Then we went through our old belongings in our crawl space and Tom picked out the perfect figures and collectibles that would fit in and I picked out my favorite and most meaningful stuffed animals to include.  We joked all along that we spent more on her rug than on furniture and more time choosing the details than most people would, but that's just how we are.  We thought about how Tom's love all things Star Wars would pass down to her and how we could influence her style of music by choosing our favorite songs and artists and playing them constantly in her room (which we do).  All of this planning went into her future; albeit minor planning, but planning that we enjoyed doing and made us unique and would make her unique.

We met with our financial advisor and picked out life insurance policies and discussed when and how much to contribute to a college fund.  We discussed parenting techniques and what things we would allow and when we would put our collective foot down. 

And then she was born.  And then we were given the news that would change our lives in ways we definitely had NOT planned on.  And one of the first things we thought about was, how this was going to change the future we had talked about for her. It wasn't that we didn't expect that her personality or life choices could change that plan anyway, but we certainly didn't expect that plan to be removed from our hands at so early a stage. 

And so I sat there yesterday and thought about how so many new parents plan their kids' lives carefully only to have that thrown in their face, but then I thought about how our plan was thrown in our face an hour after Tera was born.  I know it shouldn't seem that way, and I don't necessarily think of it that way now, but I definitely did then. 

So many of the moms that post in my forum in the DS community talk about how thoughts of the future are probably the scariest and hardest parts of DS to deal with.  Whether those fears and thoughts are medical, developmental, financial, or something else, the fear of the unknown is debilitating in those first hours, and days, and months.  And even for years I'm guessing.  So we try now to focus on the present, but still those thoughts creep in.  When we talk about our current house or a new house, we have to consider that Tera could be with us for the rest of her life.  We don't know if she will, but we have to plan for that possibility and when we promised her we would always do whatever she needed, that falls under the living situation category as well.  We have to rethink a college fund so that if she doesn't go to college, the money that we have saved for her isn't penalized. 

So many of the things that we thought about have changed, but the idea that she would be her own person, with her own quirks and unique traits, has not.  She has an extra chromosome that makes her different, but she has her own little personality that does also; and that, we did plan on. 

1 comment:

  1. Melissa, In Illinois and many states there is a type of irrevocable trust intended for folks who may not always be in a position to speak for themselves. It allows for money to be put away for all kinds of reasons like school, healthcare, healthcare extras not covered by insurance or green cards, living expenses, tutors, aides..........and so on. It can also provide income at some point in the person's life and that income can be protected so it does not interfere with any kind of social security, disability, medicaid and so on. My daughter Sarah Lellman (Sera Erynis) has seen several of these when she was in her internship for DRS in DeKalb. I am going to send a friend invite for both of you. I bet I am not explaining it correctly so maybe she can add her 2 cents......I love your blog! Jane Lellman

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