What would you do if
you won the lottery?
A perspective from a special needs parent.
A couple weeks ago the lottery jackpot was about 1.2 billion
dollars. Of course we, like most people, bought a ticket in hopes of striking
it rich. (Yes, we realized it was not likely that we would win, but one can
dream.) My husband and I talked about
the things we would do if we won
this huge sum of money. We had an entire plan laid out in minutes. It was easy,
we both knew how we could use the money and we were in complete agreement.
That evening, our good friends came over for a visit. We got
to chatting about things we usually talk about, our kids, our parents, the good
times we used to have in our 20s, what our other friends are up to… the usual.
Then, the conversation turned toward the lottery and what we would do with our
money if we won. My husband started it off with listing our most wanted wishes.
He says the very first thing we would do is:
-
Get William into an intensive speech program at a
speech therapy center near our home. The one I am referring to is known
nationally for working with children who have Apraxia. Our son suffers from
this disorder and makes it nearly impossible for him to speak. We are so
blessed that this center is only 25 minutes from our home while people travel
from all over the country to send their children there. The problem is that we
can’t afford it. At $70 / half hour of speech instruction it’s just not a
possibility. They currently do not accept insurance. As a parent, we look at
our child knowing he needs help. It is basically sitting right in front of us,
yet we can’t give it to him. It maddening.
-
We would purchase a hyperbaric oxygen chamber
for William (or take him for dives at a participating facility.) I know some
people reading this might think that is a little wacky of us…. But you wouldn’t
think that if you saw what it did for William in the past. A few years ago, we
charged $3000 to a credit card to get him in an oxygen chamber for two months.
William went in with no speech and was able to put together some speech after
the dives. Everyone around him saw the remarkable change. It’s extraordinarily
expensive, but it works. I know that someday, conventional medicine will
realize it helps these kiddos and it will be covered, but right now, insurance
does not cover it and it’s so expensive.
-
Occupational therapy, physical therapy, social
skills programs, the list goes on and on. William needs them. Again, insurance
only covers some…. after we meet our deductible, of course. This year, the best
insurance offered through my husband’s company leaves us with a $3,000
deductible and an $8,000 max out of pocket. Combine that with what is taken out
of our pay check and that leaves us spending a minimum of $16,000 on health
this year alone. Maybe I need to write another blog on how awful health care
coverage is in our country right now. We are certainly feeling the burn on
this.
-
We would get our oldest, who has type one
diabetes, the newest in insulin pump technology.
I could go on, but I think you get the point. We were over
the moon excited dreaming of a life where we could get our children what they
need for their medical conditions. As we
shared our excitement and our wish list with our friends, the response was,
“Wow, we were thinking of what vacations we could go on and what cars we could
get. All you want to do is provide the treatments for your kids that they
need.” The moment blew by, but I have to
say it took my breath away for a moment. It really made me realize, once again,
how different the life is of a special needs parent. I remember a time when I
would have been dreaming of a beach house, a convertible, and a trip to the
Hawaiian Islands. Don’t get me wrong, all of that sounds wonderful!!! But, I
have different dreams now. I dream of a time when my son won’t be trapped
inside of a body that prohibits him from communicating. I dream of a time when
he can tell me his tummy hurts instead of screaming in my face at the top of
his lungs with no language behind it just to let me know there is a problem. I
dream of a time when those screams have words, words that say ‘my tummy hurts,’
or maybe they just say, ‘I’m mad that I can’t find my favorite toy. ‘Sure I want to take my kids to Disney, my 11 year old asks nearly every day when we will be able to go. He even watches the Disney Vacation Planning DVD that was free in the mail… thanks Disney :-/ And sure I would love to take my husband to Hawaii for his 40th, a birthday that has already happened for him and the dream I had of taking him on this trip when we made the plan in our 20s is long gone. But, the reality is, that if I ever came into extra money to go to Disney, Hawaii or wherever else sounds magnificent, we wouldn’t be going to these places, we would be getting medical help for William.
Yes, the dreams of a special needs parent are much different than most. The struggle is constant. Yet at the same time, we treasure what we do have to offer our children so very much. We have ABA therapy covered for our William and, for that, I feel extremely blessed.
What will you dream about when you lay your head down on your pillow? What would you do with 1.2 billion dollars? For me, I just want to be the mom who was able to give her sick child everything available that could possibly help him get better.
…. And if there is some left over after all of that, I would definitely take them to Disney. I think they deserve it. ;-)
(We ended up not winning anything with our lottery ticket, there’s always next time…)
