{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

Resurrection

1st time bearing weight on his left leg

“While you’re not a miracle, you are about as close to a resurrection as we ever get to see.” –Dr. Dunn, Vascular Surgeon

Leave it to a doctor to minimize the miracle part of this story.  Personally, I think Michael is both a miracle AND as close to a resurrection as most of us will ever be witness to.

Walking with a cane

Michael continues in his rehab over achieving ways. I am marveling daily at how normal our lives are becoming, how typical he is, and how blessed we are to continue to see him return to baseline (and dare I say maybe even a little better).

The Open House was amazing!!  It meant so much to us to have a chance to thank so many of the people that have been traveling this journey with us. It meant so much to have the chance to show my man off, for all to see that he really IS okay, that he really WILL be whole again.

We have another miracle happening here too, as amazing as that is to say…..My Madison is back!! After 4 years of extreme fatigue (a shower would be the most she could manage on any given day as of late), starting with contracting Mono & walking pneumonia, we seem to have found a big part of the problem…..and it could not be simpler to treat.

Because of a lab result that has continued to be abnormal even as we have gotten the other parts of her CBC back in the normal range, our beloved pediatrician pondered whether she might be deficient in Vitamin B12. We decided to try giving her an injection of B12 last Thursday, and I will admit, neither Madison nor I were all that hopeful.

Within 2 hours it was clear the B12 was making a difference…..by 72 hours later we were sitting here in awe.

We didn’t talk about it a lot, but Madison’s fatigue issues had become profound. This wasn’t like someone being tired or low energy, she was at times almost “bed bound” and even on a “good day” it might mean that she could manage a quick outing or a shower, but definitely not both. She was missing out on life, and while we were all making the best of a difficult situation, it’s been heart breaking to watch.

Since Thursday of last week, Madison has had as much, if not more, energy than her siblings. She has been up and moving more than sitting or laying down. She is bubbly and talkative. She is like a whole new person!!! She is a miracle!! B12 is a miracle!!

I am waiting to hear what the plan is to handle this issue long term, and reveling in thinking of all the awesome things we can do as a family this fall…..something I was not feeling good about at all with her, a short week ago…..something I wasn’t even capable to thinking about as a family, even a month ago.  Plans for the fall…..fun things to do…..time with the family as a whole…..how remarkable are those thoughts!! 

Open House

McNair Open House

Saturday, August 25th

11:00am - 8:00pm

809 Brookshire Circle

Garland, Texas 75043

214-535-7703 (Heather)

There are SO many that we would love the chance to thank in person for all the love, thoughts, prayers and contributions. With that in mind, we are having an open house on this coming Saturday and would love it if you & yours would like to stop by, if even just for 5 minutes, or to hang out for a while. The door is open!!