Mish-Mash

Spirited

Not actually a word that I’d normally associate with Madison….her sister, yes….but Madison’s qualities have not usually lended themselves to that term.  Madison is my “old soul”, cool, calm and collected kiddo.  But right now….right now the term “spirited” feels right.

Seattle/Camp Korey restored my girl to me.

I knew….we all knew…..she was not doing well before heading to Seattle.  Her energy levels were at an all time low, she was declining to do things she typically loves to do, and, I realize now, her spirit was just not there.  She wasn’t smiling like usual, wasn’t laughing, just was not herself.  Her doctors that see her regularly were noting it too….the usually chatty Madison was laying on the exam tables, half asleep, not interacting at all.

Sometimes you don’t realize how bad things are until after the fact.

What it is about going to Seattle that does this for my girl I cannot say for sure.  The cooler weather no doubt plays a part, and forces us to face the reality that summer’s in Texas are so very hard on her (on all the kids, but especially her).   The air quality is better, and that likely plays a part.  Perhaps Camp Korey just has a healing power that we may never understand.  Whatever the reason, the fact that my kids improve so much while we are there is one of the biggest blessings that comes from our ability to be there every summer.

We watched as Madison “woke up” once we got there!!  And so far, she’s maintaining some of that energy.  Meanwhile, I & her doctors are realizing just how down she was before we left, and rejoicing in seeing her with a bit of spunk.  Mostly, it’s the smiles that make my heart happy. 

My girl is smiling again.

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Houston Trip #4

I am also rejoicing in the fact that we have actually managed to stick to our schedule for Houston this year!!  After two years of being down there 12 times each year, I needed to find the schedule that had the potential to work, and going every other month seems to have been the ticket.  We have NOT had to return unexpectedly at all this year so far (hoping this didn’t just jinx it!!)!!

We did have to head back down a short 6 days after getting back from Seattle, and while I would have loved to postpone it, I realized we just had too many important appointments and tests to get away with it.

Overall, things went well.  We got some additional testing done that was needed, saw a few of the kids doctors, and made some changes that we are all hopeful will improve quality of life for all three. 

We also were able to spend some time with our family and friends while we were there, and that ALWAYS does a heart good!!

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Adjusting

I am, slowly but surely, adjusting to having oxygen in the house and our new routine.  All three are wearing it at night, and Madison is wearing it most of the time during the day too.  This could explain some of her improvements as of late, and she’s dealing well with wearing it in public.  It’s not quite old hat to me yet, but we are getting there.

New med routines are getting easier too.  As soon as I say that, we are making changes again, but we are making the adjustment pretty well.  Just need some time and we will all get it better.

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Disjointed

And all over the place tonight.  We have some big (non medical) changes happening in our lives right now, and it has me stressed out, and in my world, stress = a lack of creativity!!  In other words, I tend to ramble!!!!

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Mito Awareness Week

September 18-24 is Mito Awareness Week and the kids and I are working on some plans for spreading the word about Mitochondrial Disease all this month.  Watch for it here and on Facebook!!

Check out the piece that ran on Channel 8 here tonight about some friends of ours that are making a difference and getting the word out!!

http://www.wfaa.com/news/health/Teen-raising-profile-of-little-known-disease-128652233.html

Way to go Delaney!!!

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Finally, Some Prayers

For our precious friends, Ali & Alex, who are in California as I type, starting the process of getting Alex on the study drug I’ve written about before.

For the McNeil’s as they prepare for Gary to get his new kidney.

For the Andrew’s as TJ fights a line infection.

For us for wisdom as we make some big decisions, faith that we are heading in the right direction, and peace in it all.

Happiness is……

Besties..Kara, Abby & Madi

Truly….a week at Camp Korey!!  I have decided that while Disney World may say they are the “Happiest Place on Earth”, for one week in August it is really Camp Korey that holds that designation….without question.

One VERY happy group of Mito kids and their peeps

What an amazing week!!!  I picked up very bittersweet children on Friday…..still reveling in the joys that came from a week together in this amazing place, and so very sad to be leaving it and seeing the week come to an end.  It is, for the most part “easy” emotionally to get there (I won’t comment on the difficulties of logistically making it happen), and it is consistently hard emotionally to walk away, knowing it will be another year before we see this beloved place, and have a chance to love on the people who make it so very special.

As I drove up to the gate, two of the counselors asked who we were there to get. I said “the McNair’s” (because really, they are a package deal now aren’t they) and both counselors let out a big “OOOOHHHHH”….one that momentarily made me wonder how naughty my children had been during the week…LOL.  They quickly explained though that it is because they LOVE my children….and I believe that they really do.  They went on to share how amazing the girls were to make sure everyone was included in everything, and that even the shy or quiet ones were a part of the craziness that my children bring to wherever they are.  This was tear’s # 1 for the day.

Madi, Kara & Bri

Abby & Josie (photographer and Abby's Fave)

Chance & some of his fellow counselors

Michael and I could not wait to see our kids!!!  We missed them a ton, although they clearly were too busy to miss us much…..just the way I want it!!  All three were alternating between laughter and tears as they loved on their friends, counselors and nurses, wanting to extend this moment for as long as possible.  Needing to extend it for just a little bit longer.

Chance, Madi and Counselors

Kara, Abby & Lauren

Madi, Kumar, Chance, Abby & Josie

The girls and one of their nurses

Repeatedly Michael and I were approached by the counselors and nurses, and listened as they shared how incredible our children are, and how they impacted every single person there last week.  Tears # 2, 3, 4….I think I almost cried as much as they did!!  I KNOW I have some great kids, but to hear so many share how much they truly impacted everyone there, well, that even blows me away.

Chance & Gordon

Tears # 5 came while talking to Gordon, Chance’s mentor.  Gordon lost his wife to Mito a few years ago and was instrumental in making Mito Week at Camp Korey a reality.  He has been there every step of the way, and has truly taken our son under his wing.  He was one of the counselors that recommended Chance as an LIT (Leader in Training/Assistant Counselor) for last year, and he makes sure Chance is able to be at his best while there.  He is a REMARKABLE man, and we adore him. 

Chance's Cabin

Chance and some of the campers

Chance, fellow counselor, pup and camper

Fishing!!

Each evening at Camp, the kids and counselors sit and have a chat, called Cabin Chat.  They share about the day, share about themselves, and generally build each other up in an awesome way.  Gordon shared that on the third night there, Chance’s impact on his campers became obvious, and even shocked Gordon as the process had been subtle enough to miss in some ways.  One of the questions for the night was who the kids hero was…who they looked up to the most in their lives.  After several of the boys struggled a little to come up with who that person was, one of them, quickly followed by several more, said that their hero is Chance.

Just wow.

But there was more….when asked, if they could go anywhere in the world, where would they go, several said it would be to Dallas to visit Chance.  Gordon just wanted to make sure I knew we needed to make some space at the house for them all…LOL.

Wow again.

Abby & Kara getting ready to perform

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Beautiful smiles!!

The girls cabin & their wall

We ended our time talking with Kumar, a new counselor Michael and I had gotten to know a little when we dropped the girls off on Monday.  He is a medical student finishing his training up there in Washington and was so excited about the week to come.  So as we talked on that last day we started out joking about my kids “directing” things there at camp that week.  I was laughing and saying something about them being bossy or something, when Kumar stopped and got more serious for a moment.  He then went on to say that in fact, yes, my children very much led the week, but that they led it in the exact right way the whole time.

Tears # 6.

The Warm Fuzzy Wall

Then, there was the Warm Fuzzies.  Warm Fuzzies are awesome and I smile just thinking about them!!  In fact, I am tempted to hang Warm Fuzzy bags here at the house for us to experience all year long.  Each child makes a Warm Fuzzy bag their first day at camp and they hang on the wall in the Hippodrome.  At any time another camper, a counselor, or a nurse can write a little note  and place it in the bag of the intended recipient.  These are THE NEATEST THINGS ever!!!  Just think….little notes that remind you how amazing you are all the time….we ALL need something like that daily!!  The girls Warm Fuzzies make me, well, all warm and fuzzy!!  So many kind words, so much support and love, so many wonderful words to hang onto.  In Chance’s, there were no less than five from other counselors either sharing that Chance was the “best LIT” they had ever worked with, or that they already considered him a full fledged counselor.  Just awesome!!!!

Chance doing the dance

The greeters Day 1

Lauren, Kara & Abby singing a camp song

Kara, Abby & the Llama

Oh that SMILE!!

Poochy Pete (portable O2)

Astro Angels...the girls cabin

If you ask the kids what they love the most about Camp Korey and their week there, the response is consistent….everything.  Every moment….every adventure….every person.

Madi about to Zip Line

Madi on the Zip Line

Each year they have a goal to “try something new” and this year Madison succeeded in trying the rope swing, and Abigail did the ropes course (no small feet for a kid that doesn’t like heights!).  They have new camp songs, and some old ones, to sing and make us smile.  They have new memories to share and hang onto.  They have pictures….oh so many pictures….to look at and remember, and even feel the joy that was happening at that time.  They have new relationships to nurture, and old ones that were strengthened during this week.

Abby & Bri

Bri, Abby, Kara & Lauren

Best Friends

Favorite nurse

Bri & Madi

Scratching behind Cat Man's ear

In a nutshell…..it was another life changing week.  It was, in their estimation, the best year yet.  And ya know, while I always wonder if the previous years experience can possibly be topped, I am starting to realize it just gets better and better.  Next year will, without doubt, be even better than this year.  How that’s humanly possible I don’t know, but somehow it happens every time.

To quote Camp Korey’s website (www.campkorey.org): “For a few days or more at Camp Korey, children enjoy the novel experience of being defined not by their medical diagnosis, but by their spirit, their creativity, and their own potential.”

Thank you Camp Korey….all the staff & volunteers…..for giving my children the chance to be defined by such wonderful things.  We are already looking forward to next year!!!

View from Camp Korey

Thank you to our friends and family that supported us in making this happen for our children.  You really cannot have any idea how much it means to us…..but know that it is because of you that these kids can flourish and be amazing, at Camp and in their world in general. 

Incredibly Blessed

The Kids Day One Mito Week Camp Korey

Thanks to all of you, my precious children are at Camp Korey at this very moment, no doubt having the time of their lives!!!! 

We took Chance out on Sunday so he could attend orientation, and by Monday when we were there to drop the girls off, he was in full counselor mode!!  Meanwhile, the girls were about to burst with excitement!!!!

There are no words to express our gratitude for allowing our kids to have this experience….thank you just isn’t enough!!

I hope a few pictures will tide everyone over till the end of the week when I can share all about the kids experience this year!!!

Enjoy!!

Chance arrives at Camp Korey

The Girls and I picking berries on the overlook above Camp Korey (the red roofed bldgs in the distance)