Blessed & Grateful: Superstars & Camp

We have some exciting, awesome news to share!!

My boy (whom I really can no longer call a boy) has been nominated to be honored in a very special way!!

A few weeks ago I got a call from our Palliative Care Social Worker to share that they would like to nominate Chance to be a part of “The Night of Superstars” in our area!! The Night of Superstars is an event put together by an organization called Ragan’s Hope, and is a night to “celebrate the lives of those that change ours”.

From their website…”Night of Superstars is an “Oscar-like” red-carpet charity event that draws numbers of local celebrities, high-profile personalities, media, and hundreds of guests! This celebration is to honor the accomplishments of 20 amazing children, students and young adults in their respective geographical areas who are affected by varying types of disabling conditions, yet reach far beyond their adversities and excel in areas such as academics, athletics, extracurricular activities, the arts, and community service!”.

Our social worker went on to explain that they thought Chance was the perfect candidate because of his work at Camp Korey, his time with the Youth Advisory Council there at Cook Children’s, and most recently the time he spends working with patients in the music studio there at the hospital…and mostly because he does all of these things with such an incredibly humble spirit. Chance is so incredibly touched, and deeply humbled to be nominated, and we are just incredible proud and so grateful to have him honored in this way!! We will keep everyone posted on when and where this event will be happening, but if you think you might want to be there for it, we do know that the date is September 20^th, and would LOVE LOVE LOVE to have a whole crew of  our people there to share in this honor with us!!! So SAVE THE DATE!!

And there is more…we are cutting it close again this year, but we finally have the go-ahead to get the kids to Camp Korey!!!!

Medically, the last year has been busy, and at times disheartening. All three are struggling, and have been for a little while, and our attempts to get them back to a better place have been less than successful. It is at times like these that we are reminded how blessed we are. Part of what gets them through their tougher days, are the events and experiences we have been blessed to be a part of each year. Wish Night in May was another incredible evening for us all, and now we are a week away from going to Camp Korey for what will no doubt be another amazing, life changing week!!

I know I have said before how difficult it is to put into words what this week in Carnation, Washington means to us. Try as I might, I am still at a loss. This year will be Chance’s third year as Counselor, Madison’s second as an LIT (Leadership In Training), and Abby’s first year as an LIT!! The opportunity to be leaders is there for all three, more than ever before, and I can hardly wait to hear all about their week as life changers for others too. Such an amazing gift to be able to give back in this way!! I cannot begin to express our gratitude for the opportunity to be a part of the Camp Korey family.

More, I cannot begin to express my gratitude to you all…the people who make it possible for us to be there!!  If not for you and your help, this would not be possible. In a life where finding opportunities like this for our children are rare, having this opportunity each summer to look forward to makes all the difference in the world.

Getting the go-ahead to go to Camp this year has been as challenging as ever, and thus our late start fundraising. If you feel led, any contribution you can make is insanely appreciated.

Donations can be made at https://www.youcaring.com/mcnaircampfund or at the link in the right sidebar.

We are so very blessed to have each and every one of you in our lives. Thank you for being our village, and for loving us as we are. You all provide the greatest of gifts to us in this way everyday, and we love you for it.

BIG hugs,

The McNair’s

Michael, Heather, Chance, Madison & Abigail

Selfies with John Green…Yeah, That Happened

And fist bumps (complete with teaching Mr. Green the jelly fish add on). And hugs. And autographs. And …getting the chance to tell someone that their creation has touched you deeply.

Yeah…that all really did happen tonight!!

Earlier tonight, I posted the following on FB:

“The Fault in Our Stars author & actors meet and greet.....there is an amazing, wonderful story to tell for why Madison and I are here. Will share tonight...right now I am going to stand here watching my precious daughter have the night of her life. Life really is so good!!! — at South Side Ballroom.”

At the time, the story, while amazing, was still actually short enough to share on FB…Not so much anymore.

A while back now, Madison found and fell in love with the book, “The Fault in Our Stars”, by John Green. It was a story she could relate to….characters that are her age, medical issues, oxygen, bipap, wheelchairs, g-tubes, and the list goes on. The book touched her deeply, and she became a huge fan of John Green. Like a huge fan!! Heck, she even had this book as the theme of her birthday party last year!! She was SO excited when she heard that they were making a movie based on the book, and has been talking about, and anticipating the opening (June 6) ever since.

As part of the movie promotion, a Tumblr contest was held to pick the four cities Mr. Green and the actors, Shailene Woodley (Hazel Grace), Ansel Elgort (Augustus Waters), and Nat Wolff (Isaac) from the movie would visit this week to kick things off, and Dallas was one of them. So a week or so ago, Madison asked about going and I told her we would play it by ear.

I desperately wanted her to be able to do this. It’s been a rough few months and she so needed something like this to give her spirit a lift, but when I asked about it again this week, she said she had heard it was drawing huge crowds and she didn’t think it was something she could probably do.

My heart sank.

And in that moment of desperation to find some way to make this happen for her, I went to John Green’s website, found a contact person, and composed an email that I sent on Wednesday. I shared a little of Madison’s story, and a lot about how much she loves this book, and then hit send and figured I wouldn’t hear anything back. It was just 2 days before the event after all, and I wasn’t even sure there would be time for them to see the email, much less respond to it. And I didn’t say a word about it to Madi. I knew the odds were against us, and didn’t want her to be disappointed.

I checked my email regularly. Just in case. And hadn’t heard a word.

Madi and I walked in the house late this afternoon after a long day, that ended a really, really, really long week. All I could think about was sleeping as soon as possible, and Madi was about the same.

And then my phone rang, and I didn’t recognize the number. Normally, I’d ignore the call, but something made me answer it.

It was “Josh”, with The Fault in Our Stars (TFIOS) crew, and he asked if Madison and I were there at the venue yet!! I told him we weren’t, and he went on to say that he had a VIP pass waiting for us, and to call when we got there and he would get us situated!!!!!

OMG!! OMG!! OMG!! OMG!!

I so badly wish I had captured Madison’s face when I told her she had to get ready because we were going to the TFIOS meet & greet, and we had VIP passes waiting for us!! It was absolutely priceless, and something I will think of to make me smile forever!! She was OVER THE MOON!!!

We rushed out the door and to the venue, where there were literally thousands of young people circling the block waiting to get in…it was INSANE!! We made our way to meet Josh, got our VIP arm bands, and were escorted in to a special section just to one side of the stage, but with an amazing view of what was going on. Madi and I just kept looking at each other in disbelief!!

My precious girl was SO happy…and so, I was about as happy as I could be.

We got to see a sneak peak of the movie, and then watch as Mr. Green and the actors answered questions. Their enthusiasm was contagious, and all four endeared themselves to us all (Ansel even did some break dancing for us!!). It was an amazing hour, and it was so cool to have been able to be a part of this special event. There was something like 3000 fans in the room, and it was loud and full of energy!!

And then we found out there was more…the small group of maybe 20 in the VIP area were going to be taken back stage to meet Mr. Green and the actors for autographs!! We had NO IDEA, and were again pinching ourselves to make sure we were not dreaming!! Seriously, how in the world could this just keep getting better!?!?

And yet, it did. It got amazingly better.

We made our way back, and as soon as we were in the room back stage, we had the chance to meet the lady that had ultimately gotten my email just TODAY!! She kept thanking US for coming, and telling me how much it meant to them, and all I could say was that we needed to thank them!! It was a HUGE honor to be there!!

Mr. Green was incredibly gracious, and spent some time talking with Madi, which thrilled her like nothing I have seen before!! In fact, while I might have thought that she would be at least as excited to meet the young men involved in the movie, she truly was most deeply touched by her encounter with Mr. Green. And then I had a chance to thank him….for writing this book that means so much to my daughter, and for giving us the opportunity to be a part of this evening, and for making my girl feel as special as she is.

There we photos taken, autographs (with ad libs) done, and an incredible moment that neither Madison nor I will forget anytime soon.

And then…as they gathered this small group of VIP’s together for a photo, Mr. Green & the actors joined the group, and he got right next to Madison for the photo. Then there was a fist bump, then HE TOOK A SELFIE WITH MADISON ON HIS PHONE, then he asked for her Instagram name and allowed HER to put it in his phone for him, and then I got a hug, and then Madison did!!!!

Our cheeks hurt from smiling, and we kept literally pinching ourselves as we made our way home. I earned the “Mother of the lifetime” award this evening per Madi…

More…I saw my girl smile, and be happy, and love life tonight.

So, so, so incredibly grateful. An exceptional life indeed.

“You’re Here Too Much”

After spending all morning at Cook's today for Madison to have a procedure done, I remembered that I had written this post and in my busyness, failed to post it back in November when it was written. Working on getting back into the swing of things here on the old blog. It may take a little different direction from here, but it desperately needs to be revived.

Cook Children's Hospital
Ft. Worth, Texas

November 2013

Cook Children’s, compared to other children’s hospitals we have been in, is medium sized and laid out in such a way that we run into many of the same people in the hallway, regularly. It is also...probably because of this main hallway concept...a place where we see not just our nurse’s and child life specialists, but also our doctors. It’s also an incredibly friendly place, so these amazing professionals don’t hesitate to stop and say hello.

Occasionally see celebrities too!!
Garth Brooks with Chanel,
one of two therapy dogs now in residence
 at Cook Childrens

The truth is, we spend a lot of time there, wandering the halls from point A to B, and sometimes just wandering as we kill time between appointments. Add in our volunteer time, and yeah…

We are there frequently, and we see some of the same people in passing more than others, with our Palliative Care doctor being one of them.

He always smiles and acknowledges us, and always appears to be on a mission to get somewhere expediently, so we smile, say hi, and move on.  This week though, the comment was not “Hi, nice to see you.”, it was…

“You’re here too much.”

And the truth is, I couldn’t read the intent behind it.

As in, was he saying this out of concern for us? Was it directed at me in an accusatory way? Or, was it just an observation?

I really don’t know.

At the time my thought was, HA!! You have no idea!! We see him, in passing maybe once every 4 or 5 times we are there. And even if, out of curiosity, he’s checked the schedule to see what it looks like, he doesn’t know about the times we are there for volunteer activities, or unexpected appointments. He really doesn’t have a clue how much we are really there.

And then I wonder, what if he did actually realize how much we are there?

The truth is, this schedule we are keeping is not happening without contemplation. There is a rhyme and reason if you will, and while it remains something that should be regularly re-evaluated, there is little that happens in our lives that I have not considered in great detail.

Early last year we were in a difficult place. Madison was quite unwell and really needed to be inpatient, however, the specialists we needed to be involved were at two different hospitals here in town, and our pediatrician and I spent hours contemplating what was the best course of action. Ultimately I decided that we honestly did not have a place to go where her needs could truly be met…where I was not likely to be insane from the experience, and most likely bringing her home no better than she went in. I realized in that moment that while our way of doing things had worked remarkably well for a long time, we were moving into a place in this journey where having a “home hospital” was critical to the kids care.

We will always be split to some extent, with our Houston team needing to be a part of what is going on, but here locally, it was time to commit. Our local team was too scattered, and as coordination of care became more important, this scatter was hurting us, not helping us. We needed to pick a “team” and go for it, as scary and overwhelming as that seemed at the time.

So as I cared for my daughter here at home, with the support and guidance of our pediatrician, I formulated a plan to slowly and deliberately start building our team at Cooks. We already had some awesome, key doctors there, and it is definitely the hospital I prefer being in if we need to spend some time inpatient. So while not the closest hospital, and not the hospital our beloved pediatrician has privileges at, for a whole host of reasons, it is where we need to be.

Iron infusions x 2

This decision comes with sacrifices (don’t they all), and in this case, we went into it knowing it meant more time on the road, being further from home, for more hours than we had been. It meant being patient as I worked with schedulers and found ways to get more than one appointment scheduled in a day to make it a more worthwhile trek. It meant building a support system there that allows us to incorporate the fun, worthwhile things to do as we accomplish the medical side of our lives.

Construction wall the kids have helped paint

story at http://dfw.cbslocal.com/2014/01/16/young-old-transform-construction-zone-into-art-masterpiece/

This decision also comes with some awesome advantages!! Some we have seen, some we are still working on, but the potential is there. It is truly becoming our “home hospital”, in more ways than it being where the bulk of our doctors are…

and this is vitally important.

This place, where there is the potential of spending hours per week, needs to be more than just a building and medical professionals…needs to be more than just a place where we know we can get good quality care. Unknowingly at the time, I have come to realize that a “home hospital” needs to be a place where…wait for it…

we feel AT HOME.

Where there is, at least potentially, more to be had from a visit there than good medical information (as vitally important as that is). As strange is it may be to contemplate for most, the reality is, when you spend half or more of your life in the medical world, it’s in the medical world that you find your friends.