Finances . . . could we not talk about this please?  I don’t like worrying about money, I don’t like thinking about money, and I don’t like planning for money.  When my daughter was 11 years old she asked me: “What’s going to happen to Joe when you and Dad are gone?”  My mother had recently passed away so I guess this question came to her mind in relation to her Down syndrome brother.  I have to admit that at the time that question had been very much on my mind too.  Leaving enough money behind for the children to be able to take care of their brother in the future is a serious matter.

kissing EmIt’s impossible to know how long my Down syndrome son will live. We had been told that life expectancy for Trisomy 21 folks was 45-65 years, so since I was nearly 40 when he was born, it is likely that a significant portion of his life will take place after I am gone. The burden of providing financially for that period of time has weighed heavily on me at times.  Mostly because I don’t want to leave it to be a burden on my other children in future years.  So the task of reconciling that with my originally stated distaste for financial planning has felt like a necessary but discordant evil in my life.  I don’t want to talk about it, or think about it, or plan for it, but it must be done.

Early-on my solution to the problem included denying ourselves of every seeming extravagance. Whenever the children would ask for a Slurpee or ice cream, I would say “No”, but I would be thinking “No, we have to save that money to take care of Joe.”  It was a weight on the top of my mind but because of my aversion to the process I never actually set aside that $2-$4, so all I did do was probably make myself out to be the meanest mom ever and with no giant bank account that I could one day reveal saying “See, isn’t this financial security much better than all those treats would have been?”  Very flimsy plan, zero productive execution.

All those years of Slurpee savings gone – – what next?  As time went by we tried various things until one day we were setting some goals with a financial planner and after I’d shaken off several projections he asked me this question:  “How much would be enough to make you quit worrying?”  At which time I realized that there was no dollar figure big enough to lift my concern for the future.

conservatorship celebrationIt was time for a paradigm shift.  There’s a very big reality there, and that is that there will be financial needs for my son after I am no longer around to satisfy them.  But the bigger reality is that no one knows what they will be or for how long they will go on so all I can do is set aside what I can, take advantage of programs that provide support, and educate my other children so that they can handle what comes.  

Will what I can provide be enough in the future?  I don’t know. Will there be governmental financial support for disabled adults when they need it?  I don’t know. Will he even live so long that these scenarios become operative?  No one knows.  It was time for these realities to become part of my way of thinking.  There was no plan that I could make that would cover every base and secure all outcomes.  

Unknowns can be frightening, but so far it’s worked out.  I’ve had to let go of “nickel-and-dime”ing ourselves over what we may or may not be able to do and just move forward step by step.  We feel like, one thing at a time, we can do this. We’ve set aside money where we could.  We will one day pay-off our home loan.  We have taken some vacations – others we’ve not taken.  So far we’ve handled each of our son’s health needs.  We’ve been able to buy new glasses every time he’s lost them.  We’ve tied up legal loose ends by filing for and being awarded conservatorship for him – – which we celebrated with ice cream.

drinking cropMy daughter asked:  “What’s going to happen to Joe when you and Dad are gone?”  My answer was: “Well, you’ll have to make all the decisions but we’re trying to leave enough money so that you can take care of him.”  These are her realities.  Fortunately she and her other brother are now older, and educated, and most importantly they love him more than words can tell.  I am not surprised at that because he is funny and he is fun, and he idolizes them in return.

Down Syndrome Days might be different but still sweet

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I have to believe that they will all get along okay in the future. Hopefully it will work for them taking one thing at a time as we have.  I can only hope that our efforts will provide them with, if not financial freedom, at least some financial wiggle room to enjoy an indulgence here or there.  I have confidence in them and I needn’t worry about Joey’s happiness because for him a treat can be as simple as one glass of water, one glass of milk, and two straws . . .

About Jane Thurston

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