Monday, November 05, 2012

Mito Camp!

Oh, where to start?! Mito Camp was amazing, but it was also not completely without difficulties. I'll start with the tough stuff and then get on to the good stuff!

Tough Stuff:
KayTar woke up with a fever Friday morning...and camp started Friday evening! I was completely heartbroken. I thought for sure we would have to stay home, but the director encouraged us to still come as long as KayTar wore a mask to prevent sharing, in case the fever was infection related and not simply autonomic drama. It was an incredibly difficult decision, because when KayTar gets sick, it hits her hard and we keep her VERY chill to prevent it from rapidly progressing to a bad place. But Mito Camp promised to be so amazing and KayTar had been counting down the days and she told me "It would be like canceling CHRISTMAS!" Sooo, we decided to go. I'm going to assert that it may not have been a SMART decision, but it was a wise one. Life is short and this was such an amazing opportunity, we decided to make the most of the day we were given, even though it was an imperfect one. I'm sooo glad we made that choice. Medically, KayTar struggled all weekend and keeping her running was like patching a boat that kept springing leaks (wonky glucose, puking in the clinic, fevers, not tolerating feeds, UGH!), BUT she was having a amazing time in spite of it. Every time I saw her she was happy and participating! She passed out at dinner on Saturday night and we ended up having to leave early because she was so unstable...but she only missed out on 2 small things and got to enjoy every other experience to the fullest. She did everything that was on her list of must-dos! She was in rough shape yesterday and still struggling some today, but she has been happy and sharing camps stories with me and says she would do it all again in a second!

Good Stuff:
We got there a little late on Friday, but got checked in and made it over to the fire pit for s'mores and dancing...and FIREWORKS! It was awesome and KayTar was totally into it. BubTar IMMEDIATELY felt at home (which is not often the case for him) and made buddies with his cabin mates. KayTar's counselor was wonderful! Saturday was a full day and when I think about it, it seems like more than one day because of all the fun we squeezed in. We were all split into our cabin groups and went to a variety of scheduled activities. My day was: breakfast, horseback riding, barnyard, cooking, lunch, canoeing, rock wall climbing/ziplining, giant swing, then dinner...and then we had to go. My horse was such a character. He was very hungry and kept stopped to sneak a bite of food from the buffet of nature. I had to have the workers help me with him the first couple of times, but after I had been riding him for a while, I could tell when his mind wandered to snacking and could keep him on track. His little personality was endearing. Also, when we passed another group of trail-riders, he decided to try to follow them instead! Again, workers had to help me get him back on track. Silly, Hawk! It was so peaceful and fun, though! The kids got to do rock wall climbing/ziplining (K just watched...too high for her!), archery/nature, horseback riding, barnyard, canoeing, arts and crafts, and parachute play! KayTar also scheduled a "treehouse party" during rest time for her and her bunk mates.  Evidently, it was super fun! Josh got to do most of the same things and he caught 6 fish, too! Fun for ALL!

Of course all of the activities were SUPER fun...when I was flying down the zipline, one of the workers shouted "You have the grin of a kid in a candy store!!". But the more amazing part was the atmosphere at camp. There were a kids with a variety of abilities, a variety of medical interventions, a variety of symptoms...but it was the ONE place I have ever been that none of it was out of the ordinary. Nobody batted an eye at tube feeds or oxygen lines or wheelchairs or masks...nobody looked at me questioningly when my kid hopped out of her wheelchair to bust a move...we were all just NORMAL! I did take care of a lot of KayTar's care because she was struggling and nothing was going to plan and I kept having to readjust,  but it was okay and if she is healthy next year I will have NO worries about handing her over! If we muddled through this, "normal" KayTar weirdness will be no big deal at all. Both kids made friends and Josh and I got to spend time with our friends and it was just wonderful all the way around. Everyone is already counting down the days until next year!

I didn't get a lot of photos because we were all on different tracks, but we should be getting photos from the kids' counselors soon and I will be sure to post them! Can't wait to see more of my kiddos having a blast!

We climbed up and ziplined off this thing. See lawn chair for size reference!

Watching the down pour at lunch

Mustache Camp

Right before she crashed...still happy!!


dlefler said...

Mito camp looks awesome. I am so sorry KayTar came down with an illness right before it started, but YAY for still being able to attend!

I felt the same way when we went to the John Tracy Clinic in 2010 - it was amazing to be around other parents who "got it." This was when Nolan had just the hearing loss (for the most part), and it was great to be with a group people in a similar situation.

Keep on bustin' those moves, KayTar!

Becca said...

So awesome the way they include the whole family! Looks like a blast!

Elizabeth said...

So glad ya'll had a great weekend, despite K's struggles. I can't wait till we can go!

Gretchen said...

Looks like an amazing opportunity!

Anonymous said...

You looked to be having a great trip, how is KayTar now? I hope she is feeling better

Carolyn T. said...

I am from the Houston group that helps support the Mito Camp and a Mito patient too. I helped with the art projects. It thrills my heart to hear someone enjoyed the camp.

I did too. It was my first year. I had my crash afterwards because I had not walked so much in years. But I am ready to be there for the kids again.

It was my first time to see so many kiddos be so free and happy and as you say absolutely "normal" within this camp... Each child has their own personal caretaker so parents have a small vacation. We plan it this way. Yet there are many activities that the family share.

I am so happy you enjoyed it. I was totally amazed at the wonders of all children and each of the miracles and achievements.

Melody said...

I am thrilled you listened to me and brought her..... Every day is precious and you must live is to the fullest-whether or not she is sick. Like I told you. She can have a Mito fever at home or at camp. So why not bring her and let her have FUN! So nice to meet your entire family.

Shellye said...

I LOVED the pics from Mito Camp! I feel bad that KayTar wasn't feeling well, but she looked like she had an amazing time in spite of it. Hope she's doing better, now!

Kyla said...

Yes, were right! It was infinitely worth it for all of us!

Carolyn: We are so thankful for you and ALL of the people who worked so hard to make camp happen. It really is a miraculous gift!