The Great Outdoors?

While there was a lot that went through our minds when Juniper was first diagnosed, I think the thing that worried us the most was how her lymphedema would impact our lifestyle.  I guess that sounds kind of shallow, but it's true.  We were prepared for how a baby might impact our lives, but we definitely were not prepared for a baby who could get a severe infection from a bug bite or a scrape.  We just sort of assumed that baby would come on all of our adventures with us; that we'd just throw him or her in a carrier and we'd keep hiking and camping just like before.  When we found out that Juniper had lymphedema we were both really scared that all of that would end.
Pre-lymphedema, when J was just shy of 3 weeks old

At our first therapy session, we learned that we shouldn't bring Juniper to altitudes higher than where we live or take her on an airplane until she has compression garments to wear.  This was a huge blow as D and I have been going to the Sierras together every summer since we met 12 years ago.  We were also planning to fly to Denver for a friends wedding at the end of the summer.  If the lymphedema didn't feel real before that day, it was definitely starting to.  After that first session, we both went through a lot of ups and downs.  In some ways, we got a lot of perspective that the lymphedema wasn't really that big of a deal, but we also saw how much our lives would change in small ways to keep Juniper healthy.  
Maybe not the biggest lover of the outdoors

A few days ago, we were talking about going on a hike with Daniel's brother, and it occurred to me for the first time that we couldn't go on one of my favorite summertime hikes because the trail went to too high of an elevation.  For the first time in a couple weeks, I got really sad.  I know that there are lots of things that could have happened that would mean we wouldn't be able to go hiking together as a family;  Juniper could have hated to be in the carrier, she could have had colic and cried all the time, when she gets older she could just not like the outdoors in general, but that doesn't stop me from feeling really angry sometimes.  I know that as Juniper gets older, it will be a really fine line that we'll have to walk between making sure that she's as protected as she can be while still letting her enjoy being outside and doing the things that I think all kids should get to do, and that we really enjoy doing.  
At 10 weeks.  Note that you can actually see her head over the top of the Beco!

We did find a hike to go on.  It's a bit higher than where we live, so it's probably not ideal, but not quite as high as some of the other trails around us, so it's a compromise, and everything was fine.  Her leg didn't balloon up to twice it's (already increased) size,* and we managed to keep the bugs off of her.  

I hike with her in a Beco carrier and Daniel sherpas all of the extra crap we now need for her in his pack.  We have an awesome pop-up tent for her called a peapod that we bring, and we set it up wherever we stop to hang out for a bit.  

I really like it because it gives Juniper a chance to stretch out and have a break from being in the carrier and she's protected from bugs.  I put her in one-piece outfits that cover her arms and legs from Kicky-Pants.  They're made from bamboo and are super-thin, so they give her some sun/bug protection and I think are not as hot or clammy as a cotton outfit would be.  

This part of August is usually when we take our Sierras trip.  Someone on Facebook a couple days ago posted some pictures of the sunset over Tuolumne Meadows and it was hard to realize I won't get to see that this summer.  Honestly though, I am just now starting to feel like camping would be do-able, so in some ways I think that being forced not to go has saved my sanity a bit, and hopefully next summer we can make it happen.  

*The reason we can't take her on a plane or to higher altitude without compression garments is because the thinner air at higher elevations has lower pressure than the air at low elevations.  The result means less pressure on your body and skin which can make lymphedema affected limbs swell even more.  Most of us have experienced this on a long flight.  She needs the compression garments to maintain the pressure on her leg.  

1 comment:

  1. You all look so beautiful! Wonderful pics.