Sunday, August 5, 2012

Drafting, Trisomy Style

A couple of weeks ago, a speaker in church talked about how others help us, and we help others through challenges.  He is an athlete and used the example of drafting in bike racing.  This is where the racers rotate to conserve energy.  The lead racer exerts the most energy and the others, riding closely, benefit significantly.  Energy savings are  up to 40%.

Similarly, when birds fly in formation, they also save energy.  The lead rotates so that no one bird carries the burden too long.  When one tires, he drops back and another takes his place. 

A recent (really, groundbreaking) study suggests that Trisomy 18/13 parents "draft" as well.  This study (which I wrote about here) had over 300 trisomy parents who said that their life with a medically fragile child was a good life.  Get that?  Not bearable, not okay, GOOD.  It was suggested that perhaps one of the reasons (NOT the only reason) was because of significant support from other parents.  I know I could not do this without the support of family, both those I was born to/married into, but also my trisomy family.
I relied on the strength of others when we told them our baby wasn't expected to live, that he was "incompatible with life."  Family, literally all around the world, joined us in a special fast for our still unnamed, little boy, only 20 weeks into the pregnancy.  

A friend allowed me to rest my wings for a minute when I called her out of the blue and told her I needed help.  I told her first of all two ground rules:  "No questions and no crying."  She repeated my instructions and said, "So what do you need?"  I told her my baby had something called Trisomy 18, I needed a lot of tests in hospitals, and because it was flu/RSV season, my four-year-old needed to be watched, a lot.  "Okay, when's the next appointment?  I have it on the calendar.  Let me know for the rest of them, too."  And by the way, her youngest was already in school full-time.  She just took Michael under her wing and he had a great time.  So much fun that once Aaron was born and he wasn't going over to her house on a regular basis, he really missed her!

Then there's my trisomy family.  I can't express how much help and lift they've given me.  From my first set of questions:  "When do I need help?  Do I call 911?  How will I know?", to heart failure, trach surgery, pneumonias and so on.  They've been there.  They've been there with advice and questions.  They've been there with prayers.  They've called me, even in the midst of their own mourning, to try to help find answers that were stumping doctors.  These are moms whom, most of them, I've never met in person.  But they're my family, my sisters.  And along the way, the family has expanded to other medically fragile parents and kids. 

Now that Aaron is getting bigger, more stable, I hope I am helping some others.  I hope that I can give strength to moms just starting out on this journey.  Because when you're pregnant, it never crosses your mind that something might be "wrong," unless, of course, you've already walked that road.  But when you're told that there is something wrong, terribly wrong, your whole world crashes in.  And to add insult to injury, all of a sudden it seems that wherever you turn you see pregnant women and healthy babies.  And all you want to do is hide, bury your head in the sand, and pretend it will all go away. 

So now that I'm stronger, have been built up by so many others, and have a few races under my belt so to speak, I have the responsibility to take the lead, sometimes.  But knowing that just behind me, when I tire, there is someone else is still a huge pick-me-up. 

So, to everyone who has ridden point for me:  my family, blood or trisomy, my friends who have helped out so much, people who have prayed for Aaron (because those prayers are HUGE), thank you.  You've given so much strength and respite.  And I don't think you can know how much.

The sincere friends of this world are as ship lights in the stormiest of nights.
Giotto di Bondone  


  1. I agree so much with this post. Our children no matter the label placed on them are a blessing and inspire all around them AND they have a life worth living. Connecting with others who have the same disease and with others who have walked a similar path makes this bumpy road smoother. This is hard in every way but so so worth it

  2. What a wonderful post! We just had family come from Oregon to take care of Zane for a few days. It helped tremendously and made me appreciate him all the more.
    It's so great that you're at a place now where you can help others walk the same path and share the wisdom you've gained through your journey.