Sunday, July 31, 2011

McNair Kids Camp Fund


Two summers ago, Michael and I asked for help to make an impossible dream come true for our children…..and it was one of the hardest things we have ever done….asking for help is not something either of us is good at.  Asking for help at this level, and going on faith that we would somehow raise the money needed, was a HUGE leap….and so very difficult to do.

Two summers ago though, we learned that there was a summer camp that our children could attend.

It’s a right of passage…heading off to summer camp, at least once in your childhood.  Where you are independent, perhaps for the first time really, and experiencing the joys that are summer camp.  There is nothing quite like it.  And it was not something we thought we would ever see our children be able to do.  I had not realized how much it hurt my heart to think that, until the opportunity to make it happen presented itself.

The reality is, as amazing as our children are, as capable as they seem to be, and as healthy as they look to the average person….there is a tremendous amount of care, behind the scenes, that takes place for them to function so well.

Each day….
57 medications are doled out for a total of 95 doses given
Fluids are given via g-tube (permanent feeding tube) to all three, three times a day
Oxygen levels are spot checked 4-6 times a day and overnight 3-4 nights a week
The following equipment is needed:
            3 Oxygen reservoirs
            3 portable oxygen tanks
            3 pulse ox machines
            1 Bipap machine
            3 syringes and feeding tube supplies
            24 medication syringes to fill and administer liquid meds
And this is a TYPICAL day here….it’s even more intense when someone is sick or needing more support.  The work can almost double during those times….and I cannot even think about having more than one sick at a time.  It happens, but I deny those times in my mind…LOL.

While care and equipment was not as much two summers ago as it is now, it was still more than a typical summer camp could accommodate.  More though, a typical camp would not have been able to monitor and ensure the kids well being.  While there are medical camps here in Texas, the reality that the kids are not able to regulate their body temperature correctly, and thus cannot tolerate the temps we see here in Texas during the summer, even the medical camps were a no-go.  Finally, no camp in the country had offered a week for kids with Mitochondrial Disease before this time, because the truth is, they require so much more support than the average child with a medical condition usually served by a medical camp.

Two summers ago, Camp Korey in Carnation, Washington offered the first ever Mito Week…..and in a moment, the dream had the potential to be real.  In a moment, we had to swallow our pride and ASK FOR HELP.

In the weeks that followed, we were overwhelmed and deeply touched by the love and support provided by our friends, family, and strangers too.  In the weeks that followed, those friends and family gave from their heart and made this dream come true for our kids and us.

Even as it happened, and Michael and I struggled to find a way to deal with the mixed feelings we had about needing to ask for the help, we felt the love and support so intensely.  It took a chat with my precious great uncle one day, as I called to thank him and my great aunt for their contribution, for me to finally see the truth of our situation. When I told him how thankful we were, he stopped me and shared how thankful THEY were that we had given them a way to help and support our little family.

It’s still not something Michael and I are “comfortable” having to do, but for this one thing, we just have to find the humility to make it happen.

What we could not have fathomed was just how much Camp Korey would impact our children’s lives and ours.
First Day Camp Korey 2009

Two summers ago the blessings were cooler weather and a chance for them to rebuild the energy the heat here in Texas was sapping…..the chance to meet other teenagers with Mito and build friendships with others that “got it”
Madison, her roommate Casey, & counselors CK 2009

…..and the chance to be leaders within a group of their (true) peers.  Emotionally & developmentally the effects of that first year of camp was even more profound.  They left Camp Korey that Friday afternoon different children than they had been walking in.  They had found their independence, developed deep, real relationships, and found another “home”.  By all accounts, the Mito week farewell was the most emotional Camp Korey had all summer, and maybe ever.  There was not a dry eye in the house….every child, every counselor, and every nurse was in happy tears as they said their goodbye’s.  Not a single one wanted the amazing week to end.
Chance & counselors CK 2009

Last summer, Chance was asked to come back as an LIT (counselor in training) because he had aged out of being able to be a camper, and the girls returned as campers.  Again, our friends, family, and strangers came through to help us make this dream come true.  Last summer, while I could share how profound the experience had been for the kids the first year, the reality is, words don't REALLY convey it I am afraid.  Last summer we thought we knew what the blessings would be…..and yet again, we were surprised.
Chance LIT CK 2010

Last summer our son found his “calling”.  At the ripe old age of 17 he spent a week being selfless and truly giving of his spirit in a way he’d never done before.  A week later he came home a different child…..he came home a young man with the realization that his destiny includes helping special needs kids.  I knew the week had been profound when for the first WEEKS after camp he didn’t share much of anything HE did, but shared every moment he had with “his” kids, every accomplishment THEY made, and I watched as his heart was touched and changed in a moment.
Chance & one of his campers CK 2010

Last summer, my girls came home that much more mature, more confident, and with incredible relationships with some amazing young people they have been able to maintain from afar in the year since.  
Abby & her BFF CK 2010

We saw Abby go from struggling some the first year, to a young lady walking away strong and changed, inside.  
Our Super Hero, Madison CK 2010

We again saw Madison nurture every other child there in such a sweet way, and have a chance to be “typical” for a change…only at Camp Korey during Mito week can that happen!!  We even saw their relationship with each other strengthen and mature in that week. 
The Girls CK 2010

The memories created during this single week at Camp are the very thing that they cling to during the rest of the year.  Not a single week goes by that something camp related isn’t talked about or shared.   Mito Week at Camp Korey is so much more than “just” a week at summer camp for our kids, for so many different reasons.
A few of the people that make this week happen CK 2010

In some ways I feel silly when I try and convey how profound these last two summers at Camp have been for our children.  It’s summer camp for goodness sake!!!  How profound can summer camp really be!!??  The truth is, I cannot possibly convey it with words….they simply do not exist.  It has changed our lives.  YOU ALL have changed our lives, because without your support it’s not something we can make happen on our own.
View from Camp Korey 2010

This summer, Chance again returns as an LIT….a more mature LIT, one that “knows the ropes” this year, and I think his impact on the kids there will be even more profound than it was last year.  More, I think their impact on him will be even greater.

I find it interesting that we sometimes think we really are grasping how important something is to us or our loved ones, only to realize when it is in jeopardy, how far you were from REALLY getting it’s worth. 
View from Camp Korey 2009

A few weeks ago, after submitting the girls applications, we were contacted by the medical director at Camp Korey.  She was writing to let us know that as of that moment, they were not able to accommodate the girls needs at camp this year.  I was devastated…..all that love us and knew what was going on were devastated.  The thought that the very thing that makes them eligible for this camp (fighting an illness) might be the very thing that would keep them out, was more than I could even grasp.  The truth is, this is why no other medical camps offer a mito week (at least in my opinion)….the care level needed is just so much higher than is typicall.  In this case, they simply did not feel that they had enough nurses or doctors lined up for the week to make it possible for the girls to be there.

My heart sat in my throat for almost 2 weeks.  I couldn’t bear to tell the girls until we knew for sure what was going to happen, and the amazing people at Camp Korey went into overdrive doing ONE thing…..working, networking, and begging for more medical staff to come on board for this one week.

A 900 pound weight was lifted from my shoulders, and my heart finally went back where it belongs when I got the call that they had been able to find the staff needed…..that my girls WILL be able to attend camp this summer!!  The amazing staff at Camp Korey went above and beyond to make this happen, and somehow I hope I can someday convey to them how much I appreciate it.  Again, words just don’t do it justice.

SO, this summer, my girls head back to camp a little more mature, with incredible excitement and joy knowing they are going to be seeing their friends again and meeting new ones, and with HOPE and JOY already in their hearts just thinking about it.

The last year has brought more changes to their lives and care needed, and with this, we continue to strive to focus on QUALITY of life, and this week at Camp is all that we could ask for in that respect.  Quality of life IS being at Camp Korey during Mito Week…..I only wish I could see it all unfold and have you all there with me watching!! 

It IS going to be another incredible week!!!

With the uncertainty of the last few weeks on whether the girls would be able to attend camp, our fundraising efforts have been hampered.  We didn’t want to ask for help for something that might not be happening, and we didn’t want to tell the girls what was going on until we knew for sure what their status was.  With that, we needed to delay the request for help, at least on a broader scale.  Even with the delay, some funds have already come in, and we are making progress towards our goal!!

If, and only if, you feel led to help, we would appreciate it more than we can possible convey.  While Camp Korey is free for the kids, finances are needed for getting us there and home, lodging, transportation and food for the week.


  1. In the side bar to the right, at the top of the page, there is a “Donate” button.  By simply clicking on this you can make a contribution online, safely and securely, to the cause. I will update our progress towards our goal daily!!
  2. In the coming days, paintings done by Abby and I, as well as some of Madison’s photography will be featured here on the blog and will be up for auction.  Each original piece will go to the highest bidder, so if bidding is your thing and you see something you like, this is another way to contribute.
  3. Feel free to share a link to this blog with anyone you think might be interested in helping us make this happen for the kids. There are links in the right side bar that allow for easy sharing on Facebook and Twitter.
  4. Finally, if making an online donation is not something you feel comfortable with, please feel free to contact me at, and I will get you an address to send it to.

Every dollar makes a difference, no amount is too small.  It’s amazing how quickly small contributions add up!!!

Thank you all.  Thank you for allowing me to share the amazing experience Camp Korey has been for our family. Thank you for the support and love you have given us in previous years, and the time in between camp.  Thank you for considering helping this year.

Again, words just are not able to express how much it means to us.

BIG hugs,
The M’s

Thursday, July 28, 2011


I am shocked how long it has been since I posted last.  Have things really been rough for THAT long now??  No wonder I am frayed and handling it all with less grace than usual.

This post has had three names now…..

It started as “Ch-ch-ch-changes” and I was going to share the changes that have been taking place here at our house, and why, even though some of those changes have been “good”, it still requires an adjustment. And when it’s lots of changes at once, well, the adjustment takes longer.

It was then called, “Romans 12:12”.  I had one of those moments last week when a scripture SPOKE to me.  They all mean so much to me to read, but once in a while, I stumble on one that touches me deeply and profoundly, and last week, Romans 12:12 was it.


Words I desperately needed to hear and feel.  Words that have become my mantra as of late.  They are, quite literally, keeping me from losing it multiple times a day right now.  Thank you Lord for leading my friend Breanne to share this scripture, at the exact moment I needed to hear it.

Applying the verse is taking some time, but I am determined.  I NEED to live and breathe it right now.

When all is said and done though, “Silence” seemed to be the right title today.  Silence is not all bad…..oh how many days have I prayed for it since having children!!??LOL….but sometimes, well, silence happens because I don’t even know what to say anymore.  I have realized this last month that when stressed and overwhelmed, all creative juices cease to flow.  They just stop.  And I just don’t even know where to start, much less, finish.

Today, let me start with….we are okay.

Stressed, overwhelmed, and adjusting to the “new normals” here slower than I would like, but we are okay.  We WILL BE fine….in my heart of hearts, I know that….have faith in that….the journey to get “there” though is taking a winding, twisting road that has me more than a little discombobulated.

Much of what has led me to this place has actually already made the turn toward “good”….

A week and a half of thinking the girls were not going to be able to attend camp in Seattle this year was, so very thankfully, resolved this week.  They were able to find the additional medical staff needed to handle the care now involved in having my children there.

Michael’s 94 year old grandmother is already in rehab after falling in her backyard last Wednesday and breaking her hip.  She was found by the neighbor so help could be called, has gotten through surgery, a few days in the hospital, and is already standing and walking with help at rehab as of today.  That’s ONE week folks and all I can say is that Mammaw is simply amazing.  Her spirit is just as strong as usual and she’s knocking everyone’s socks off.  She is the epitome of a ROCK STAR!!

Madison’s recent hospitalization led to the start of a new medication that is increasing her blood pressures and decreasing her heart rate in exactly the way we wanted to see….and she is EVER so slowly perking up a bit.  Heck, she’s actually sitting here at home fighting another g-tube site infection without crazy low blood pressures like we have seen in the past.  At this point with the Miss, I will take ANY glimmer of hope of improvement, and we are getting a little one right now.

While the van is still not quite fixed, we were able to baby it home from Wichita Falls, able to borrow my mother’s SUV so the kids and I have dependable transportation, and at this moment there is hope that a good tune up is going to get her up and running well enough to get us through a few more months.  We know a newer vehicle is something we will need to figure out a way to get, but just need a few more months before making the leap and this seems to be very possible at this moment.

This is just the tip of the iceberg that is the craziness here right now, but you get the idea.  Just a little stress!!!

Today, while there were complications to deal with, it was a day to celebrate Chance and his 18th birthday, and we did!!  Today was a GOOD day…..a good day that was very needed and will not be forgotten anytime soon.  If nothing else, the bad days remind me of how much each good day is to be cherished.

Tomorrow, a post I have wanted to make for several weeks now, but needed to wait.  Camp is LITERALLY around the corner (we leave a week from Saturday!!) but we were not able to fundraise till we knew for sure the girls were going to be able to attend.  We now have the go ahead from camp, so tomorrow I will share how, if led, you can help us get the kid’s to Camp again this year.  Excited to share the story…..and while I could have done without the stress of not knowing if they would be able to go, I was reminded how very important this week is for them….how VITAL it is to their quality of life….and how hard I will fight to make it happen for them.  So stay tuned and check back in tomorrow for more information.

All the prayers that so many of you have said, not even knowing the turmoil we have had here, have been felt and cherished.  Thank you for them….please continue them….and know many, many are being said for you all from here too.

BIG hugs,
The M’s


Today my son turns 18. 

I am, quite literally, looking back on a whole childhood with this boy of mine…..and finding it difficult, if not impossible, to believe that it has really been EIGHTEEN YEARS!!!  Yeah, I feel old. No, I cannot fathom how this is possible.


In part it feels impossible that you could be 18 because the day you were born is still so vivid in my mind.  Every moment, every feeling is so clearly remembered that it simply could not have been that long ago. And yet, 18 years IS a long time ago.  A whole childhood has occurred since then.

I am quite sure that neither your dad nor I had any idea what we were getting ourselves into.  We could not have imagined how completely we could love and cherish another human being.  We could not have fathomed the lengths we would go to protect you.  We couldn’t know how much you would make us smile, and how completely you would change our lives.

Our first born…..our only son.  You will always be special in this position you hold in our family.

What I know now, with the ability to look back at this childhood of yours, is that your existence in this world is my everything. Having you, raising you, makes me who I am today.  Each joy, each challenge, we went through it together, and while some of the challenging times are vivid in my mind to this day, the joys and moments of triumph outweigh those hard times 20 to 1.  You have, to coin a phrase, come a long way baby!!!

Your Dad and I could not be more proud of the young man you have grown into.  You show us daily your strength, compassion, resiliency, fortitude, wisdom, and character.  Every virtue I could have hoped to see in my child, my son, I see in you.  Fully formed, solidly a part of your every day life, and destined to change this world we live in.  Your future is so very bright and we are so privileged to be along for the ride.

Hang on to your dreams son……and work and fight to get to them.  Know your Dad, Sister’s and I will be right there supporting you, loving you, and reveling in your amazing accomplishments!!!!  I simply cannot wait to see what the next 18 years has to bring…..the next 80 years even better.

With LOVE and Pride,
Your Mom
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