Back in the Saddle & Leaning In

I wanted to be a part of a group of bloggers writing something every day for November, but alas, here I am, 10 days in and it hasn’t happened. My intentions were good, but I knew with the month starting off  in Houston for appointments for a week, it wasn’t likely to happen. Let’s face it, intentions are only half of what it takes to accomplish something. I need the motivation though, and am still going to try to make a stab at publishing on more days than not for the rest of the month. Lord knows, it’s not from a lack of experiences to share!!

I am missing my time here. I am missing the chance to “get it out” and move on. I am missing the chance to share some of the really awesome things happening for our family. So here we go.

Although my inclination, at moments, is to run away, I am instead, leaning in.



Leaning in to finding a solution to our medical coordination woes.



Leaning in to enjoying the fun things we have happening, almost as often as the "not fun" things, and to the precious people in our lives that make them possible.



Leaning in to finding a balance again in our lives. Working real living in AROUND our medical lives is NOT the way this works best!



Leaning in to our volunteer opportunities, and making them as much a priority as all the rest, because they really MEAN something in our lives, and others.



Leaning in to the learning that comes with new ways to help the kids medically, and praying for the time and energy to give them a chance to work.



Leaning in to the opportunity to share the knowledge we have gained after so many years in this medical world, and, God willing, leaving a legacy for others.



Leaning in to working on being the best mother/wife/sister/daughter/granddaughter/friend I can be. 



On this list of items worth leaning in to, is this blog. It's part of the balance thing. It's worth my time and energy. 



Silence very seldom means nothing is going on over here, and actually means quite the contrary.

Silence often means, you wouldn't believe it if I actually wrote it out!

Lots to update on....some awesome and amazing stuff, some not so fun stuff, and lots in between. 



Leaving you with much love and hugs. We are good...crazy busy, but good.

Just need to keep leaning in to this exceptional life we have been given!!

As the holidays approach, where are you finding the need to lean in?

And So It Begins: McNair Kid's Camp Fund 2013

Thanks to the generous support of friends and family, we began our journey to Camp Korey Friday evening!! We continue to need your help, if you can. See the end of this post for further information.

Thankfully, Madison's reaction to the anesthesia on Wednesday came under control; all the packing and running around to collect supplies happened; and all the phone calls to ensure everything was in place on the other end of this journey were made. We were off to the airport and ready to be in Seattle!!

Mother Nature had a few plans of her own, and our flight to Seattle took a detour. From a planned stop in Albuquerque, to Lubbock, TX for refueling, and back to Albuquerque where we then had to wait for a new crew before heading on to our destination.  We were scheduled to arrive in Seattle at 10:00pm Friday, but didn't actually arrive until 3:00am Saturday!! Twelve hours from arriving at the airport in Dallas, to leaving the airport in Seattle, made for a long, long night.....as evidenced by our leaving a bag at the McDonald's in the terminal and not realizing till we were loading our shuttle to the hotel!! Not just any bag, but our medical bag....the one with every single important thing we needed for this trip!! After a mad dash back to where it was left (with a stop at the ticket counter for a pass to get past security, and the loss of a water bottle at security), Michael was able to reassure the security person just beginning to examine the bag, that it really was ours and we needed it, badly!!


 Thankfully, all survived the adventure, and gratefully we had a day to rest before anyone was due at Camp. We needed it!!!

Sunday could not get here fast enough for Chance & Madison!! Especially Chance, who both returned to his beloved Camp Korey, but also turned 20 years old!!!

It was, as always, amazing to drive up to the front of Camp Korey....to see the place we love so much. It only got better as we made our way to volunteer check in and started seeing the people we love so much. Chance and Madison could not have been happier than they were in that moment.

Abby enjoyed some time in the "only child" status that evening, and then was more than ready to get there on Monday. Arriving to cheers, and seeing the faces of the people you have not seen for a year, makes all smile pretty big. Spending the afternoon waiting to get Abby checked in was an opportunity to drink Camp Korey in again. To sit and look out over the fields, take in the beauty that is this special place, and to spend time reconnecting with old friends, and making new ones.

The afternoon ended with meeting the nurse and counselor that are assigned to Abby. We went over all her medical paperwork, and chatted about my girl, and as we were wrapping things up, Abby's nurse shared the most amazing thing....She shared that she is there this year because of our family!! I wasn't quite sure what she meant, so she went on to explain that a friend of hers, a fellow nurse who has volunteered at Camp Korey before (and whom we adore), had been asking her to volunteer for a couple of years. Last year this friend shared our blog with her, and it convinced her she needed to be a part of this years Mito Week!!! Not only is she there, but she even got one of the McNair kids to love on and take care of!! How awesome and amazing is that!!

I cannot even begin to express how much this meant to me to hear.

Each year we wonder how our time at Camp Korey could possibly be as good as the previous year....and each year it just gets better and better. This year has already proven to be no exception!!

In part because of what happened Tuesday evening.

Michael and I were asked to attend a "friend-raiser" for Camp Korey, and to share our story. It happened at an amazing historic home on top of Queen Anne Hill, and was attended by some incredible people here in Seattle....people we hope will become a part of the Camp Korey family. I shared our story, and how profoundly Camp Korey has touched our lives, and was reminded how difficult it is to find the words to convey how life changing this week in the summer has been for my children....for our family. I did my best, and it seemed to have been well received. It was SUCH an honor to have this chance to give back, just a little, to this place we love so much. I hope we have a chance to do even more in the future!!

We have received a random text here and there from Chance & Madi, and there were pictures posted on Facebook of what appeared to be another totally messy food fight today!! Promise to share pictures when we get home!! We cannot wait to see them all on Friday and hear all about their week!!!

We still need your help to make this life changing time possible. We are about $575 from our goal amount, and desperately need to raise this money if at all possible. I am extending the fundraising time, and I am so sorry to have to continue asking. We are so incredibly grateful for the amazing support so many have already shown. Any amount is helpful, and it adds up quickly.

Donations can be made at www.youcaring.com/mccampfund or by clicking the link at the top right of this blog. If you prefer to send us the donation directly, please contact me at kass@swbell.net and I will get our address to you.

Again, thank you. More updates to come!!!

WC Day 1: Ideas

Help!!  If you will……I need ideas on things to write. 

Is there something you have been wondering about and dying to ask but just haven’t had the chance, or maybe even haven’t quite known how to go about asking? Now is your opportunity. 

Is there something about our family you are interested in? An organization we are involved in that you would like to know more about? Questions about Mitochondrial disease or how it affects our kiddo’s? More information about Michael’s accident and the aftermath? Our experience being a medically complex family? Our experience being a wacky, weird family?

I cannot think of anything off limits, although I will (as always) run anything written about the kids by them just to make sure they are okay with the content.

Some ideas for things to write about on my list:

I finally went through all the recipes I have pinned on Pinterest and started making them!!  We are about a month into this experiment and I am happy to say almost all the dishes have been a success. I am contemplating sharing some of our favorites here at our house with all of you. Foody Friday sounds like a possibility!

Some updating on the kids and how they are doing is definitely in order.

Recounting some of the awesome adventures we had last year.  It was a rough year (obviously), but there are some stories and pics to share of the good times too.

Some special needs related posts….need your ideas on this one!! I always said, as I struggled through the process that is being a special needs parent, that it is all worth it if I can share with others and save them from having to go through the same struggles I endured. In some ways I am far enough removed from it all that I have a hard time knowing what I could share that might be helpful, but if there is something you can think of, let me know.

The Challenge

Photo by Madi McNair 2009

It’s time.

Time to get beyond this writer’s block I have and get this blog rolling again. 

We are fast approaching 50,000 hits (318 to go!!); we are closing in on the one year mark since Michael’s accident, and I suspect that will hold some significance (even if I am not totally sure in what ways yet); and, if I am to continue to claim that things are back to “McNair” normal, writing here, sharing our exceptional lives, continuing to document our days is important to that normalcy, for me at least.

I miss this commitment…..miss giving myself permission to come here and write down the things that are rambling around in my head (and sometimes my heart)…..miss sharing the blessing every day is for us.  So much from the last year continues to pop into my head as something I want to document, for me and for the kids, and for anyone else that might feel blessed by it.

So, with that, I am challenging myself.

A post a day for the month of April.

Something….anything…..but writing and sharing and moving onto this next stage of our lives together.

It’s time.

So bear with me. Not sure exactly how this goes, but I am committing myself to it. Please hold me accountable!!

Supermoon, Housekeeping & Gut Instinct

Photo by techgenie.com

What an amazing sight!!  I wish I could take credit for the photo above, but I am not in possession of a camera capable to capturing it so well, so I am happy to rely on others for preserving the memory.

It WAS a beautiful moon to see and we enjoyed talking about it.  Did you know there are lunar time zones?

We enjoyed it even more because we were with friends for the evening.  Yes, Madison and I ventured out of these four walls for a little while Saturday night.  It was one of the few times in the past week with Miss M, she is just feeling THAT bad right now. More on that in a bit though.

We were invited to come and help celebrate a friends new US citizenship (he’s a Canadian), and jumped at the chance to spend some more time with this couple, as well as several other co-worker’s my dearest husband has that we LOVE.  Good food, a little wine (for me), and lots of entertaining conversation is so very invigorating.  The kids were the only young people there, and as always, thoroughly entertained all the grown ups….even if they did share stories and songs I thought were for our ears only…LOL.  Oh what people must think sometimes after a few hours with this crew!!  LOL  It was a lovely evening and Madison did “okay” with the exertion.  Emotionally, she and I both needed to get out, so in that way, it was the perfect evening.  Sitting on the back porch, enjoying the weather….laughing as the dog jumped in the pool or had the ball thrown over, and over, and over….laughing and loving on our friends….AND a supermoon!!??  Awesomeness.

{Housekeeping}

Just a couple of things before I move on…..

PLEASE join us or donate to our teams for the Race for Wishes and St. Baldrick’s at the links at the top right over there.  We only have 5 more days and need some help!!

Note at the upper left that Blogger now has an option where you can enter your email and receive notifications as well as the latest blog post in your email box!!  Go ahead, go for it, I know you want to<grin>.

{Gut Instinct}

I really have a love-hate relationship with my gut instinct.

When it comes to Madison, it’s just far too right most of the time, and it’s never what I want it to be.  I successfully ignore it far too frequently…..or wish just once it would be all wrong.

At the moment, my gut is screaming at me.  Continuing to ignore it doesn’t seem possible, and I suspect I will be calling our pediatrician tomorrow morning to see about getting Madison checked over.  We are one month out since the mono diagnosis and she is just getting worse!!  She hasn’t felt up to aquatic therapy two weeks in a row, has not felt up to going out and spending a couple of days at my mom’s, and really just has not moved much at all.  I insisted we get some school work done last week and while she had been struggling to get more than an hour in before, after about 20 minutes last week she was in an autonomic crises…flushing, overheated, nauseated with increased blood pressure, heart rate and respirations!!  And it hit fast and hard and took her at least 15 minutes to settle back down again.  Not good.  And as telling as anything else, she is being cuddly, wanting to snuggle regularly….while I LOVE me some snuggle time with my girl, this is SO NOT Madi anymore and I know it’s because she is just feeling so cruddy.  She actually managed the outing Saturday night better than I expected, no doubt in part because Brandy was letting her snuggle with her, but as we started working towards getting out the door she hit her wall and needed to leave right then.

My suspicion is that she might be anemic……far too much bleeding the last week or so between an insanely heavy cycle, 2 GI bleeds, and she’s bruising at her injection site again.  This might actually be the easy, best answer, but we won’t know till we get some labs done and see. 

It’s times like these that I worry the most about her heart having something to do with what’s going on.  It’s just so incredibly complicated to have a child with cardiomyopathy AND mito……the overlap in symptoms is just too insane to even begin to know what to look for.  The thing is, there is just no way to know….and I hate that….and it scares me.

I am just going to keep thinking anemia and try to get some help figuring it out.  She is worrying me though….and I hate my gut instinct at times like this.  And am, at the same time, grateful it’s so good when it comes to Madison.  UGH!!!

Grateful for a good one with Madison, in large part because it sucks so badly when it comes to Abigail.  I just cannot get a bead on that girl, and am regularly surprised when I learn she has been dealing with something for a while that she has failed to mention and that I have failed to pick up on.  It all eventually comes to a head though and I learn more than I ever wanted to know.

This last week, it came to a head.  Abby’s tummy is just barely working and it turns out she has been having headaches regularly, something she conveniently failed to mention to me.  She is an ignorer that girl…..and it’s enough to make this mom a little crazy.  I always understand her so much better when the real story finally comes out, but boy does she hate to give the medical stuff even a moment of her attention.  I am SO with her, but know it has to happen.  I just wish I could read her better.

We have a busy week this week….at least compared to the last couple.  All three see their motility GI tomorrow, Chance has an appointment with the pain clinic Wednesday, and I suspect I’ll be getting Madison in to see the pediatrician sometime this week too.  Please pray she can tolerate what we have on the agenda, and that we come away from these appointments with useful information.  Thanks as always!!!!

New Year, New Blog

We wish all our friends and family peace, love and health for the New Year!!!  We have been, and continue to be, so very blessed to have you ALL in our lives.  There is not a day that goes by that I don’t have a moment when I feel the warmth that comes when you know there are people out there lifting you in prayer and keeping you close to their hearts.  There are no words that adequately express the depth of my gratitude to you all.  We love you and are so glad you have joined us here.

Please forgive the lackluster appearance of the blog at this time.  It will, as a whole, be a work in progress, but will eventually get to where I want it to be.  For now though, I want to get started on the real reason for being here and start posting. 

What’s in a name? 

I won’t even reveal how long I have been thinking about a name for this blog.  It wasn’t on my mind constantly, but was one of those things that would slip in to my thoughts when I was looking for anything to think about other than whatever was dominating my thoughts at the time.  Most were forgotten as soon as they came to me, sometimes to my frustration!!  Other times it just wasn’t the right one.  It was too cliché, too similar to someone else’s blog name, too random…you get the idea.  For reasons I am not even sure I can explain, it was important to me.  If I was going to embark on this new adventure, it needed to have a name that meant something to me.

When I got my IPhone in June (and finally figured out all the goodies I have on it) I realized that instead of trying to remember the different blog names that “came” to me, I could add it to a note in my phone and have it to go back to and contemplate.  There are probably a dozen or so names on that note, and I would occasionally go and read through them all just to see if something worked for me.  In the end, it was none of those names that I chose.

One day not very long ago, “Our Exceptional Life” came to me and for the first time since I started thinking about this, I felt a flutter when I said it out loud.  It FELT right!! But there were still hurdles to overcome.  Would it be available?  And really, what does the word “exceptional” literally mean?  While I knew the meaning in a general way……i.e, I can use it appropriately in a sentence….before branding the family blog with it I figured I ought to find out the dictionary meaning of it.

As you can see at the top of the page, it is defined as 1. Unusual; not typical. 2. Unusually good; outstanding.

Oh my, is that us!!!  Pretty sure anyone that knows us would agree that we are, as a whole, pretty unusual and definitely not typical…..and the kids are, without question, unusually good and outstanding.  As I read the definition, the flutter in my stomach intensified a little more.  Finally, maybe I had found the right name.  As I signed onto blogger and plugged the name in I held my breath.  With all the blogs out there, what were the odds the name I wanted would be available?

And here we are!!  The name feels right….it’s comfortable, means something to me, and is, dare I say, even a little inspiring to me!!  Considering I am still trying to figure out my purpose here, the idea of sharing the exceptional life we lead really does do something for me.

So, welcome……welcome to our exceptional life!!