Tuesday, July 14, 2015

A SOFT Place to Land

Ever have so much to say, you don't know where to begin?  And so you end up not saying anything?

Well, when it comes to speaking, that really isn't much of an issue for me.  But writing, well, that's a whole 'nother thing.

All tucked in for the night in his tent in the room.
There wasn't time during the SOFT conference to really get online much at all.  Certainly not time to write.  But oh, what an experience.

From driving up on Wednesday and realizing that the car ahead of me was a friend who I hadn't met yet in person, but had talked with on the phone and many times on Facebook over the past few years....

To saying good-by to a sweet princess and her family as they got ready to drive back to Delaware (yeah, all the way across the country!), it was an experience I can never forget.

Someone else isn't quite ready to give up and sleep yet.  

In fact, the kids are already asking about Seattle next year.  That one might be possible, but we'll have to see.







One huge unexpected highlight was attending Grand Rounds at the hospital where I got to listen as our cardiologist presented a case for providing surgery for Trisomy kids who could be surgical candidates.  Not all are, like Aaron.  For him, his pulmonary pressures have always been too high.  But some are, and they should be given the chance.

He used a couple of pictures of Aaron in his presentation, and everyone got a kick out of one section.  He was talking about the language that is sometimes used in speaking to families.  Words like "Incompatible With Life" and "Vegetable."

He put this picture of Aaron up (having previously introduced him), then he put up a carrot.  "This is Aaron Peterson, this is a vegetable.  Notice there are no similarities."

I think he made his point.

We had workshops on a variety of subjects, some for families looking for new ideas to strengthen living kids, and others for those wanting to remember their angels.
Welcome dinner.  With us is Dominic (32) who is the oldest
male with mosaic Trisomy 18.

Thursday night was a more formal type dinner where our heroes were presented with medals.

Aaron and Deborah dancing at the dinner.
video




Hanging out at clinics with two cute girls.


Then Friday were medical clinics.  Aaron was being a bit of an oxygen piggy, so we only made it to two of our three visits, but they were very good, and I now have some more ideas and techniques to use in physical therapy, and some cardio/pulmonary goals.









Friday night was a night out on the town.  We all went down to City Creek Center, and Aaron loved riding the Trax.






































Saturday was the Stroll for Hope, the picnic and balloon release.














We went with an All American Boy theme and won the Family Theme award.  It was a lot of fun to dress up his stroller in patriotic colors.

Super Hero for a Super Sib.












A very tender moment when I went to get some tags for the balloon release.




The next one coming up was for a dear friend's baby.  I had hoped to see them when I was back in D.C. in 2011 for my grandparents' internment.


But things got busy with our family, and their family was starting to come down with colds, so it didn't happen.  The day after I flew home, her daughter went Home.  Not getting over to see them has been something I've always regretted.  But we were privileged to be able to send her balloon to her.





Playing with Big Sister at the auction.  Good thing he didn't
have a paddle in his hand.  We would have bought out the place.
Saturday evening was the auction with some incredible things, and then Sunday morning we got up, had breakfast and came home.

All of us were exhausted.  Poor Aaron had to deal with a mama who kept forgetting to either open his oxygen tank or turn it on. By the end of Sunday, he may have been wondering if he needed to trade me in for an upgraded model.  Fortunately, we all slept soundly Sunday night.

I'm afraid I wasn't very good at taking a lot of pictures with the camera, but I sure took a lot with my heart and sealed them away in there.

With all the struggles, heartaches, and loneliness of our journey, it was such a blessing to be in close contact with so many others who experience a similar path.  Sometimes you feel like you're in a free fall, and SOFT (Support Organization For Trisomies and other related disorders) is definitely a soft place to land.

In everyone’s life, at some time, our inner fire goes out. It is then burst into flame by an encounter with another human being. We should all be thankful for those people who rekindle the inner spirit. 
~Albert Schweitzer

1 comment:

  1. So glad that Aaron stayed well and the whole family could go. Wonderful to see all your smiles.

    ReplyDelete