25 Years of Wedded Bliss

Happy 25th Anniversary to the love of my life. You truly complete me.

Twenty five years ago on this day, I married the man I love. We were so young, and already facing such incredible trials, and yet, somehow we just knew this was what was meant to be. We knew that we grew stronger each day, together.

I remember the day far too vividly for it to have been so long ago. I remember it being the most amazing day of my life, even if it wasn't perfect, and even though you were sick. So very sick. I remember the flowers, the dresses, the people we love that were there for us. I remember the contingency plans "just in case", and how determined you were that it happen on this day, come hell or high water. I remember how grateful I was to have it official; how grateful I was to be your wife.

While certainly not the textbook perfect wedding, we never have done anything in the typical fashion, have we? All the parts that were important, were there.

I remember the early days, just you and I. We quickly became a pretty invincible team!!  We each grew into stronger people, independently & together. We faltered sometimes, and struggled, but we fought our way back to each other every time. It was together that we were strong, and capable, and whole.

I remember the dreams we had of having a family. Long talks about what our family would be like, what we wanted to share and teach our children, how we envisioned this life we saw in the future. And I remember the heartache of those early years, and how we supported each other through each and every one of them.

We have created an amazing family....far more amazing than we could have possibly hoped for. Way better than any dream we had....more complete than we could have envisioned. We have lived life more intensely, and more fully, than most, and we have never lost sight of each other.

It has never been easy, but it has always been worth it.

Last year, I faced the idea of a life without you in it. I was forced to contemplate how it all might look; how we would survive it. I realized that the strength you and I had built together would sustain us, but that I really, really need you. You always have my back, and I always have yours....and this is why we are so damn good together.

I love you.....to the depths of my soul....always and forever.
Thank you for loving me, flawed as I am, so completely.

On Turning 45 & a Year Later

We acknowledged the one-year mark of Michael’s accident on May 15th. It doesn't sound right to say we celebrated it, or for that matter, that we mourned it. It just was. And it was acknowledged.

Michael took the day off and we spent it together as a family of five. We delivered baked goods to some of our haunts from that time in our lives....Baylor Institute for Rehabilitation, brain injury floor; BIR's inpatient rehab floor; and our trauma surgeon’s office. There wasn't a total rhyme or reason for where we stopped by this time around, but it felt good to go by and say thank you, again. Afterwards we talked of how "at home" Michael felt at BIR, and how I felt some anxiety about being there, although I hadn't expected to. A reminder that although we traveled this path together, our experience was still different. A few weeks out now, I am not sure that we will feel the need to go back again. As it was, there were only a few people we recognized from our time there, and they were the ones we wanted to see, and for them to see Michael, so whole again. Next year we will take some food to the ICU families....or maybe we won't feel compelled to acknowledge the day in quite the same way we did this year.

We finished the day with Michael riding in the Ride of Silence for the first time, and no doubt with more meaning and emotion than it could have had before. My mom, the kids and I were there too, and it was a deep, meaningful way to end the day.

Seeing Day 365 brought closure, even more than I had anticipated. I hoped it might, but was afraid to put too much stock in that possibility. Instead we went into it wanting to acknowledge it, and get from it what we could, without a whole lot of expectations. I am glad for that. It made it even better I think. And now, again a few weeks out, I think it lifted some invisible weight Michael and I were both carrying around with us. I feel like I have sighed with some relief I didn't even realize I needed.

And at the end of the day, it was a day of gratitude. It's difficult to express the depths of gratitude we feel to get the chance to see this day come.

Friday was my 45th birthday, and memories of where we were, and what was happening, this time last year crept in. We really are nearing the end of "the firsts", but this was one we needed to get through and feel what we needed to. The feelings were all good ones, even if I am a little shocked that I could possibly be 45 years old. I am now the same age my mother was when Chance was born and she became a grandmother. It didn't seem like that big of a deal back then, but being on this end of things, I cannot even imagine it!! It's pretty remarkable to look back on four and a half decades of life, and perhaps even more so, with a great deal of respect for each and every moment that I have lived.

I sometimes find myself praying for calm, for a time without trials set in my path. But the truth is, without the trials, the beauty of life, and the blessings sometimes hidden within those moments, would never be as sweet, nor as profound.

So I am grateful.

For each and every moment of these 45 years I have had the privilege of living.

For every wrinkle.

For every gray hair.

Hello 45... ...let's do this!!

The First Ride To Work

While he has been riding for a while now, today Michael rode all the way to work for the first time since the accident.

Starting out way too early for me!!

An incredible milestone, even more quickly than I thought possible. And let’s face it, I was unnaturally optimistic about this recovery!!

I have gone back and read that initial post I wrote, just two days into this journey, and can see in hindsight that I was WILLING him to be okay. I actually have laughed at myself a little for being so sure about things, and then amazed at how right I actually was. I wrote:

We are SO lucky......

as always, he was wearing his helmet and it no doubt saved his life.

the 150+ miles of riding every week for the last 7 years is going to make his ability to recover from this devestation possible.  I am convinced of it, even if the doctors don't seem so sure.

his bull headed stubborness and obsession with riding will make this recovery possible.  The doctors just don't know who they are dealing with yet.

we have the most amazing friends, family & work-family who are literally holding us up through this time.

The doctors just don't know who they are dealing with yet.

I do know my man.

I honestly didn’t even feel a twinge of worry as he walked out the door this morning.  Granted, it was painfully early and I was only half awake, but the truth is, I was happy to see him on his way. I prayed for safety, and prayed he would feel good as he took on this challenge, but knew in my heart of hearts, this is EXACTLY what he is supposed to be doing.

"Lucy" (short for Lucinda from Don Quixote), sitting exactly where she should be this morning

 May is National Bike Month, and this week is "Bike to Work" week. You can read more about it here......http://www.bikeleague.org/programs/bikemonth/

Another Milestone (of the Bikey kind)

Saturday, thanks to some very special people, Michael’s new bike was handed over to start its new life in the McNair household. She is oh so pretty.

Some of those special people met the family at Dallas Bike Works to surprise the old man, and we did. In an awesome, amazing kind of way!!

A quick ride around the parking lot brought a BIG smile.

After formalities were taken care of, we were all off to the house for a little celebratory cook out!!  As I shared on FB, this here…..

THIS is how a backyard should look!!

It was a lovely evening that included a few jaunts out on the new wheels with friends….there is nothing better!!!

Sunday, a quick run to the store for some last minute things needed for the second party of the weekend (I had a Lia Sophia jewelry party), became another excuse to get out on the new wheels. He is a happy man!!

Another example of how amazing the Dallas cycling community really is. We are so blessed to know them and be a part of this group of people.

WC Day 29: It’s Always Something…..

Hospital prep again!! Argh….why didn’t I make notes when getting Madison ready a couple of weeks ago?

This time, Chance is going inpatient.  Not sure if you all remember, but he and Abby had an appointment with our GI doctor when Madison was inpatient, and from that appointment, tomorrow’s admission is taking place. After some talk about where we go from here in dealing with Chance’s large bowel dysmotility, it was decided that we need to do Colonic Manometry again, and see exactly where things stand. So at least this admission is a little more “planned”, as if that somehow makes it less stressful, right!?

To do the Colonic Manometry, we need to admit him the day before and do a mega clean out while supporting him with IV fluids. Wednesday morning he will go under anesthesia and they will place the probes needed for the testing. Because anesthesia can slow intestines down, we then need to wait till the following morning (Thursday) before doing the testing. The testing Thursday will take a big chunk of the day, but then we should be discharged and head home.

This testing is not fun from start to finish…..clean outs suck; anesthesia makes Mom worry; laying flat on your back and not being able to get out of bed for the better part of 2 days has it’s issues (although I wouldn’t mind some forced bed rest sometimes); and getting through the testing itself is not pleasant.

I am proud of my son.

This was HIS decision, and he made it even knowing what it means. This will be his third time getting through the testing. He knows the information is invaluable, and that we need it to guide treatment decisions, so he is going into it with a good attitude.

He is a pretty awesome young man.

Now, in other news…..

Madison is continuing to heal like a (piggy) super star!! My mom (who is again saving our butt by being here with the rest of the kiddo’s while I am away) will bring Madison to me Wednesday for her 3 weeks post op check up. This latest dressing allows for us to see more of what is going on there, and as of Saturday, I swear it’s all but healed!! Our other big news on the Madi front is that my amazing daughter learned how to do her own dressing changes, even with some changes that made it a little more complicated, so she was able to go out with her siblings and visit my mom and dad for a few days!! I can and do a whole lot of medical care around here, and mostly with pleasure, but really do not like wound care. Not sure why, but it is one thing that will get to me faster than anything else…LOL. So for Miss Madison to be able to do it herself, just means it’s not all on me, and I like that….a lot!!

Miss Abby is my favorite child right now, with little drama (well the medical kind) and lots of hugs for her tired mom. She completed a painting for Wish Night last week and did an amazing job. We cannot wait to see how it does at the auction. I may have to pay her to keep being drama free for me ;-)

And finally, Michael, my love.

He, like Abby, is mostly drama free, medically speaking. Also like Abby, drama in general still sometimes happens. I still love him though ;-) He took a nice long ride yesterday with friends, and thoroughly enjoyed himself, even if the ride was cut a little short for him due to ostomy appliance issues. A dear friend wrote about the ride on bike forums and said it so well, I am going to quote him here…..

"The old worn out saw about a picture being worth 1000 words would apply to that photo above. I bet there are 1000 people who if they saw that picture would smile from ear to ear. All day. All week.

That's what courage looks like. I could never do that. Michael McNair can. He did. That takes some kind of special spirit to overcome adversity and soldier on. It was 11 months ago that through the large bay windows of Baylor's ICU unit that I looked down on the spot along the Wetland Cells near the Freedman's Town of Joppa, Texas where we were yesterday. Michael was on life support in the worst way, on a breathing machine and in a coma after being hit by a car while riding his bike. Month and a half in a coma. With all the noise of the machines keeping him alive, frankly I thought this day would never come. But it did. The sun never shown brighter. The wind never calmer. The wildflowers in full bloom."

It certainly made me smile from ear to ear…..thanks for sharing this, Ben.

So, a first ride back down to some his old stomping grounds. 

Another first since the accident happened over the weekend.....all three of our children were gone from home, overnight, at the same time, for the first time since last spring (at least). Yes, Michael and I enjoyed some child free time together!! 

Michael saw a new PT on Friday and should be starting some sessions with her soon. He see’s the orthopedic doc on Thursday, and barring anything unforeseen, we should be able to get the needed script from him then, and can get going with this. I have never had to work so hard getting something dealt with as I have this cramping issue with Michael’s shoulders. I am reminded sometimes how much more frustrating adult care is then pediatrics…..and that is sometimes saying an awful lot. I think we finally have something happening though, and will just be happy when it’s a done deal.

Okay…..dinner is waiting for me, so I am going to go eat and then start packing for tomorrow’s admission. As always, thanks for the thoughts and prayers.

WC Day 3: Infection and 50,000

Phew....just going to get this in under the wire!!

It’s been a long, dreary, cold day.  Where did spring go? Oh yeah, that’s right, we will hit 80 this weekend. Gotta love Texas weather.

Madison has another abscess around her g-tube tract…her third since September. Not good…not good at all. We spent hours with the pediatrician yesterday. That visit resulted in an urgent call to our GI by our ped, in part because not only was there an ugly abscess, but our girl wasn’t looking good in general. Our ped is not an alarmist and has a lot of medically complex kids, so when she gets concerned, well, I do too.

By this morning I was being asked to bring Madi to Cooks for an ultrasound and possible surgery to drain the abscess, and had started working in that direction before waking her.  When I did, thankfully, the abscess was…..how do I say this delicately….it was taking care of itself, if you will. With that, another call was made, knowing the ultrasound would be less than revealing, and we were not going to need “help” with draining the abscess after all.  Madi LOOKED better too, so I was feeling a little less concerned than I had been.

A little.

Problem is…she has already been on antibiotics for 6 days and while on them, the abscess continued to grow. We got to where we were yesterday while ON the antibiotics. All possible indications that maybe the antibiotic chosen wasn’t the best one for the infection…..or worse, that perhaps she is becoming resistant to this particular one (our options are already limited because of the mitochondrial disease)…..or (not sure if this is worse or not) there is a chance that the abscess is walled off enough that the oral antibiotics are having a hard time getting to the infection. Regardless of all that, she is due to be done with this course of antibiotics tomorrow and we have obviously not cleared the infection yet. Yes, it’s good that the abscess is draining on its own, but it’s not “all better” quite yet, and I am not sure stopping the antibiotics now is the best thing.

With all of that, we went over today and had a culture of the area done. While not ideal to do while on antibiotics, it might give us some useful information.  It’s probably staph….the kids are all colonized…..but maybe not. We might be able to see if it’s responsive to what she is on, or if there is something more effective.

Tomorrow we will head back over again to see our GI and talk things over. At this point I suspect we need to continue antibiotics for at least a few more days,  but we also need to try and determine why this keeps happening and how we might avoid it in the future. Clearly the infections take a toll on her, so avoiding ones that we can kind of see are going to happen again, well, those need some special attention. Praying for some wisdom for all involved!!

In other news……we officially hit 50,000 hits sometime today!! Thanks to all for reading and hanging in there with me!!

{McNair Normal}

Blessedly, 128 days since we “hit the reset button”, we are starting to really feel “normal” again. 

I shared this with a dear friend the other day and his response was so perfect…..”McNair normal maybe…….but at least it’s not “crazy a$$ McNair normal.””

Indeed.

We have officially completed all our initial follow up visits with the doctors Michael now has on his roster, and are starting to do final follow ups with a few of them. I will be glad to take a few off my list!!  Not because we didn’t like every single one of them (we really did amazingly), but because it gets us one step closer to where we were before.  The Vascular surgeon, Neuropsychologist, and ENT have all signed off at this point, and we have at least one more that should sign off by the end of this month. 

Four months since that life changing day and here we sit, feeling pretty dang normal….for us at least.

Today I dropped my precious husband off at work for the first time.  While still a little ways from being ready for full time, that I watched him walk in the door of his building, knowing he was ready and able to go back finally, well, it was amazing. Nothing short of a miracle.

Every once in a while it hits me……something will trigger the realization of where we have been and how far we have come.  How we have defied the odds….over and over again.  How blessed we are that Michael is still with us; that he is not in constant pain; that he is walking and talking; that he has recovered both physically and mentally so quickly; that we have amazing friends and family that have supported us; that he has an incredible employer that has waited for him and done so much more; that the kids are okay (mentally and physically); that we have exceptionally good health insurance;  and the list goes on and on. 

Clearly, there is something more here we are meant to do.

We are in the midst of Mitochondrial Disease Awareness Week, and considering “McNair Normal” is usually quite wrapped up in all things Mito, it too is a return to our normal.  We are all doing our part to spread awareness of the disease that is so very much a part of our lives.  As I have said before, while mito is a part of who we are, it does not define us. However, Chronic Badass is not such a bad way to be defined, huh??!!

Take a moment and learn more…..www.umdf.org   www.mitoaction.org