Monday, March 28, 2011

Saddle Up Your Horses

The Rush Family is about to embark on a couple new "adventures" with Lily Bird.

It's always difficult to decide when to try something new or different.

There are probably quite a few people out there who think parents of special needs children are so desperate to "heal" their kids, that they'll try almost anything.

Parents travel the world seeking specialized medical treatment, attend healing services, feed their children unusual herbs and supplements, not to mention follow restrictive diets, and try treatments most people have never even heard of like hyperbaric oxygen chambers and chelation.

Anytime something new comes along, many of us jump on the wagon, hoping and praying this will be the answer we've been searching for.

When I come across a treatment that is new to me, I feel a responsibility to thoroughly research it, talk with other parents and medical professionals, and then make an educated decision as to what I'm going to do with this new information.  Do the pros outweigh the cons?  Is it going to hurt Lily in any way if we were to move forward?  Am I going to give it a try?

And despite the feeling that I might simply be grasping at straws, if it doesn't harm Lily in any way, I usually decide to give it a go.

I do this for a couple of reasons:

1 - I don't want to hear ten years down that road that such and such treatment would have "cured" my daughter and I was just too scared or lazy to look into it.

2 - I seek the best treatment for medical conditions all the time.  Why would I treat autism differently?

For example, when our oldest, Ryley, was diagnosed with Type 1 Diabetes at the age of 5, the first thing I did was seek out the absolute best diabetes clinics in the United States.  We were living in Virginia at the time and the best clinic happened to be in Boston - the Joslin Clinic.  We loaded up the family, including both sets of grandparents and headed to Boston.  We traveled there a total of three times, until we felt we had a good handle on how to treat Ryley's condition.

When it was time to choose a local endocrinologist for her, I again looked for the best a little closer to home.  I found Dr. Parker in Charlotte, North Carolina.  We would load up in the morning, drive 3 hours to Charlotte, see the doctor, then load back up for the 3 hour drive home.

People thought I was nuts, especially when there were plenty of doctors who could treat Ryley right in our own town.  But I didn't want to settle for the closest one.  I wanted the best.

Another example.

When Lily needed open heart surgery at the age of 4 months, we headed straight to Texas Children's Hospital in Houston.  I wanted a pediatric heart surgeon who looked at surgery on the tiny strawberry sized heart of a newborn as just another day at the office.  I wanted an expert - someone who did the exact procedure Lily needed day in and day out.  We found Dr. Fraser.  He was cool, calm, collected and he saved my baby girl's life.

I could go on and on about trips we have taken just to seek advice from the best doctors in a particular field of medicine.

In my mind, autism is the same.  There are experts in this field of study, too.  And I want them to see my daughter.  I want to pick their brains.  I'm never going to know if something works if I don't give it a try.

It's a risk.

I put my heart on the line each time I try something new with Lily.  Hope soars if I see a little bit of improvement.  Hope crashes if nothing at all changes or God forbid, she gets worse.  I can grow cynical quickly.  I lower my expectation for positive change in order to protect my heart.


I know that 1 Corinthians 13:13 says, "And now these three remain: faith, hope and love.  But the greatest of these is love."

I'm here to tell you that hope runs a very close second for me.


It's a gamble.

But one I'm willing to take.

A potential heartbreak for me is a selfish reason to not explore new options for treatment and give them a try.

After all, this is my kid I'm talking about.

And she's worth it.

3 comments:

  1. Good for you for trying EVERYTHING!!! Lily is very worth it!!! I mean seriously....if peeps will try EVERY diet and exercise program....then puleez... :)
    I'm proud of you for trying everything .....You keep trying everything...I'll be your biggest cheerleader...

    ReplyDelete
  2. Thanks for the encouragement, Espy. If you don't watch it, I'm going to get you some pom-poms!

    ReplyDelete

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