Yo soy La Lay

adventures in family, faith, and Down syndrome

Lesson #31: There is beauty in this change

This is the last post of the 31 for 21 Blog Challenge!

This is my most important lesson.

Upon returning from my summer Study Abroad program in Ecuador during college, I did something completely uncharacteristic of me: I got a tattoo.

Evidence.  And, a new ab binder.

photo (18)

If you were to line up my brother, sister, and I, I’m fairly confident that no one would peg me as “the tattooed one.”  I still wonder, on occasion, if the tattoo that my brother got was simply an effort to not be outdone by his nerdy sister. He would never admit it, of course, but still…

(On an unrelated side note, I think that my dad was more than shocked by this.  In the weeks following The Tattoo, he wrote the word “Hola” in permanent marker on his foot in silent(ish) protest and then showed it to me every time I saw him.)

In any case, the words permanently stenciled on my left foot are a quote from the Cuban revolutionary Che Guevara. Controversial, I know. In Spanish, it says, “Let the world change you, and you can change the world.”

Never has this been more relevant to me than it is now.

When I think back to my old high school yearbooks, I remember a lot of the signatures urging “stay sweet!” or “don’t change.”  Um.  Thank God I am not the person that I was when I was 17.  Seriously.  With time comes perspective and if I could re-sign all of those yearbooks now, from the eyes of my almost-thirty-year-old-self, my message would be quite different….

Change.

Change every day.

Don’t harden your heart when you experience struggles.  Grow.  Learn.  Experience.

Change.

Listen to the stories of others.  Open your heart to what they are telling you.  Seek to understand, to support, to love.   Be compassionate, caring, empathetic, kind.  Take what they have to show you and make a difference.

That is all we can do to leave this world a better place than how we found it.

When I think about little Miss Tessa and her place in this world, my prayer is that others will seek to understand when they interact with her.  She doesn’t have to perform any great miracles or bust through any stereotypes.  But maybe, just maybe, she will teach someone how to love.  Maybe someone will connect with her in a way that will open their heart to more patience or acceptance.  Maybe her smile will make a difference on a bitter day.  Maybe including her in a classroom of typical children will be a greater lesson for her peers than can be found in any textbook.  Maybe cheering on her successes will create advocates in unexpected places.

When we allow the experiences of others become a part of our hearts, we can change the world.

Will you let her change you?

J Sync 6 5 14

 

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Fruit Day

It’s fruit day.  Ugh.

Occasionally, when I find myself veering off the healthy eating path, I do a slightly modified week of this crazy diet (found here) to help get me back on track.  I have found that it really helps me cut a lot of cravings and brings me back on track.

However, day one is brutal.  24 hours of nothing but fruit.  Originally, I thought this sounded glorious!!  I love all kinds of fruits!  What could be so bad about a day full of fruit?

Except now it’s noon and all I really want is a pickle.  Or lettuce.  Heck, I’d even take a brussel sprout.  Anything but sweet!  The day just makes me really cranky.  Which makes it a perfect day for me to write vent about the financial future of my daughter and the ABLE Act.

This is long and complicated, but as the law currently stands, when Tessa is an adult, she will have to stay “poor” in order to continue to receive any services that she may need.  How poor?  She will not be able to have “resources” of more than $2000 or she will no longer qualify for things like Medicaid or Supplemental Security Income.  Under the law, she cannot have a college savings account, real estate, a retirement fund… the list goes on.  If John and I die before she does, we cannot leave money in her name to provide for her future.  There are some loopholes here, but with the advances that have been made in understanding the development of children with Down syndrome (and many other disabilities), the system in place is antiquated and needs to be replaced.  These children can go on to higher learning.  They can save for retirement.  They can do many, many things that we may not have thought possible!

Current legislation aims to make those changes.  A few days ago, I posted a link to a petition to urge the US House of Representatives to pass the ABLE Act (here’s the link) so that Tessa could potentially save for her own future.  And here is where I get frustrated.

Many, many, many people that I know, love, and appreciate, signed the petition and I am forever grateful that they have taken the time to do so.  The goal is 300,000 supporters and I’ve been watching for a week as the number has slowly ticked upward.  We are still short a little over 65,000 signatures to reach the goal.  And last Thursday, after the controversial Women’s Figure Skating Olympic medals were awarded, a new petition to remove anonymity from figure skating judges attracted over 2 MILLION supporters in less than 24 hours.

I’m sorry, what?

Which is the lesser cause here??  

Admittedly, I probably would not know anything about the ABLE act if it were two and a half months ago and Tessa was not here yet.  I would still support the darn thing, if I knew about it, but there has to be some way to make people aware of the bigger issues.  This act affects more than just people with Down syndrome.  It’s for all individuals with disabilities (or as we’ve come to call them in our home, different abilities).  It matters.  Certainly a lot more than some silly figure skating competition.

I think I’ll go eat a potato now.

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