Tuesday, March 31, 2015

Looking Forward to a Chance of a Lifetime

Some 28 years ago, I left high school and headed off to college.  I was exited to go to BYU, excited to be (mostly) on my own, to be a "grown up" (hey, I didn't say I had a grasp on reality) and to start "real life" (again, that reality thing).

I was also excited to be with other people like me.

See, I'm a member of the Church of Jesus Christ of Latter-day Saints, a Mormon.  Always have been.  But frankly, Mormons aren't too plentiful in New Jersey.

Please don't get me wrong.  I loved high school as much as anyone else.  I had fun times, good friends. I still keep in touch with one after all these years, and count knowing her as one of my greatest blessings.  But believe me, I was considered weird.  In my whole high school, there were three other members of the church, and two of them were my siblings.

Yeah, I was different.

And when I went to college, it was amazing how great it was to have such commonality.  I didn't have to try to explain basic beliefs.  We all shared them.  And it was so freeing to be with people like me.

It's kinda the same way with the Trisomy community.  I've got lots and lots of "normal" (whatever that is, right?) friends.  Friends whose kids have 46 chromosomes, all in the right place.  Kids who ride bikes, dance, play soccer, sing, and can't keep a room clean.

But I'm different now, 'cause I've seen way more than most of them have.  It doesn't make their friendship less valuable, really, it doesn't.

But it makes me yearn to be near others who are like me.  Other moms who've heard the statement, "Your baby is incompatible with life."  "Your baby will not, cannot live."  Other moms who've learned how to live in a hospital, speak medical-ease, open their homes to nurses.  Others who've planned funerals along with births, and sometimes, often, carried out those plans.

From time to time in the Trisomy community we talk about how it would be so great to all live in one place.  We'd have street names like "Warrior Way" and "Angel Path."  "Trisomy Turnpike" would run through the center of our town and the grocery store would carry feeding tube supplies along with bottles, and maybe even onsies in bigger kid sizes!

Well, for a few short days this summer, I have the chance to be part of a group like this.  Every summer, SOFT (Support Organization for Trisomy 18, 13 and other related disorders) holds a major international medical conference.  Since Aaron has been born, it's been held in Maine, West Virginia, and St Louis among other places.  But those are places we really can't get Aaron to very well.

This year it's going to be here, in Salt Lake City, and I've been so fortunate to be on the committee.  There will be workshops for families on CPR, genetics, dietary needs, and support.  There will be medical clinic visits held at Primary Children's (yeah, Aaron's "vacation home").  But most of all, it will be five days of being with other families like ours.  Families who've been through the fire, who are still in the furnace, who know what it's like.

And my kids will get to hang out with other kids who've been through the same things.

I think Aaron was one when I first heard that the conference was coming to Salt Lake, and I started making plans then.  If you want to help us get there, I'd sure love some help.  I hesitated to put up a "go fund me" page, because I really hate asking for help.

But so many people have asked how they can help, and this is a way that would really benefit us, and Aaron.  We're over a third of the way to our goal, and if we exceed it, any extras will be used to fund some therapies and equipment that insurance doesn't provide for.

So if you'd like to help us out, if you have some to spare, we'd sure be grateful.  The link for the account is in the upper right hand corner, or you can click here:   Gofundme.com/CompatibleWithJoy.  

Or if you'd rather send it directly, you can always paypal it to: rebekahkpeterson@gmail.com  (Yes, this is a different email than I usually use, it's my work one.)

We'll also be participating in a 5K on Aaron's birthday (June 13, Liberty Park) to raise money for the local SOFT chapter.  There will be more details coming on that later.  But I know I've got a lot of runner friends out there, so I thought I'd give you a heads up on it.

This is such a great opportunity, and probably the only conference Aaron will ever get to.  See, with his medical equipment, specifically his oxygen requirements, he cannot fly.  Not that it's hard, it's not possible.  You can't fly commercially with oxygen tanks, and he can't use a portable concentrator with the vent.

I can't wait to be with my trisomy family.  This really is a dream come true.

Friendship is born at that moment when one person says to another: 
‘What? You too? I thought I was the only one. – C.S. Lewis

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