Saturday, November 17, 2012

6 Months....


1st ride, Nov 15, 2012

As I watched Michael and Abby ride off into the sunset Thursday night, I couldn’t have been more excited. Such a milestone for Michael….for all of us really. We didn’t just survive the last 6 months since the accident, we LIVED, we had hope, we maintained optimism, we recovered, we were patient, and we loved….on each other and the many people in our lives that have stood by us, and at times, carried us.

Thursday was a HUGE milestone in this journey.

When Michael & Abby arrived back 30 or so minutes later, I walked out back and it was then, seeing the look of pure joy and happiness on Michael’s face, that I got choked up and cried a little as I put my arms around him and just stayed there for a while.  They were tears of joy, not of worry or concern, and honestly until that moment, I wasn’t for sure how I was going to feel when this day arrived in that respect.

It’s been asked, more than once, how I was feeling about Michael being back on his bike. Was I scared, worried, fearful, etc..

My logical side didn’t think so…..well, at least that I wasn’t going to be MORE worried or scared than I ever had been. I am not na├»ve…I have been aware of the risks all along….but in all honesty, I have always been just as worried about him in a car as I have been with him on a bike. The risks exist there too, but it’s tough to really LIVE if you spend your days worrying about things like this.

Emotionally though, I just couldn’t say for sure. Emotions just don’t play by logics rules.


I could tell you with no qualms that being back on the bike is exactly where Michael should be. I have been saying that since the day of the accident…..have advocated for him to have the ability to do so even. How I was going to FEEL though was something that I couldn’t know.

It felt GOOD…..it felt RIGHT…..and my tears were truly tears of joy and relief to finally see this day. Not even a twinge of fear slipped into that moment, and I am grateful for that.


At the six month mark, I can confidently say that we are all thriving. Michael is back at work full time and has been for almost a month now. We have continued to get released by his doctors, one by one, and in December we will see three more for the last time. By the start of the New Year we will be left with only ONE doctor we didn’t have before the accident, his shoulder orthopedic, and we have high hopes of getting rid of him (as nice as he is) early next year. Michael is walking completely unaided, is dealing with minimal pain, and felt really good on the bike Thursday night.  He has reconditioning to do of course, but what better way than on the bike!!

Mito Family Camp 2012
Life here at home is also getting back to “McNair Normal”, which translates as BUSY and FUN!! We have had some amazing adventures as of late, have had the chance to love on a bunch of our friends and family, and we are embracing living life to its fullest every chance we get. I promise some more posts about all that’s been transpiring over here soon. Suffice for now to say, life continues to be exceptional, and we are incredibly blessed.

Getting ready to ride 11/15/12


Thank you ALL for your thoughts, prayers and support. I simply cannot say this enough….


Monday, September 24, 2012

Stay Calm and Ride On...Abby's Army needs YOU!!


On Saturday, October 6th, Abby will be riding in the WISH100 again!! 

She is riding the 10 mile course, but unlike past years, her dad isn't going to be able to do this with her as he is still not released to ride since the accident. With this in mind, it would mean the WORLD to McNair and I if you would consider riding with her. 


Would be so awesome to see a whole team wearing pink camo bandana's as part of Abby's Army, supporting her as we all give back to an organization that means so very much to us


Cannot make the ride, please consider donating to the cause in her name!! Please share this with everyone for us!! Thank you....we love you!!

Sunday, September 23, 2012

The Faces of Mitochondrial Disease

To close out Mitochondrial Disease Awareness Week, and perhaps start a year of discoveries that might make a difference for this population, Abby created this awareness video with the help of our friends, who shared their heroic children with us. Take a moment to learn more. (having trouble making this IPhone friendly...forgive us!!)

http://www.youtube.com/watch?v=CJUiQpnyHms&list=HL1348412237&feature=mh_lolz
 
These young people face daily challenges that are difficult to even imagine.  They do it with incredible grace and courage. They do it because they maintain hope that someday there will be treatments that will make their day to day lives easier and more comfortable.
 Some people never met their Heroes......I gave birth to mine, and have been blessed to meet so many others. 

Wednesday, September 19, 2012

{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

Tuesday, August 28, 2012

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!! 

Monday, August 20, 2012

Open House

McNair Open House
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!!

Tuesday, August 7, 2012

Update - Recovery & Gratitude

Forgive me for sending you to another site for the update, but I am still working on my update for here....soon, I promise.

Recovery & Gratitude - Day 85
http://mcnairfamily.chipin.com/mcnair-family-fund

Sunday, June 10, 2012

26 Days in ICU


Michael & Abby-Urban Assault Ride-Austin, Texas


In all honesty, my brain cannot wrap itself around it being our 26th day in ICU with Michael.  I cannot fathom how that many 24 hour periods of time could possibly have passed, or that there are things happening that we will someday need to tell Michael about, because he wasn’t with us to experience them.  Only two things are clear to me at this time…..Michael will be proud of how the kids and I have gotten through this time, and that he will be overwhelmed by the love and support that has been shown to our family.  Lord knows, there isn’t one without the other……the kids and I would be a mess if it weren’t for the thoughts, prayers and support of so many….it is literally carrying us right now.

Off on a bike/camping adventure
I knew just enough going in, to know that life in ICU is a roller coaster.  I have watched enough friends go through it, and experienced it myself almost 24 years ago the first time Michael was in ICU.  It does little to prepare you, at least for this length of stay.

Michael started out doing well, considering the extent of his injuries. He got through both surgery to repair his hip, as well as to rebuild his left rib cage in the week after the accident. However then contracted both MRSA in his right lung (the one not injured in the accident) along with yeast, and MRSA in his blood.  With this, the decision was made to do a tracheotomy since our time on the ventilator was already extended, and would continue for some time. We battled these infections for the better part of a week, and then finally started to see him turn the corner towards the next steps in this process.
Michael & Madi

Two days into the turn around, another set back, this one more significant than the first (as hard as that is to imagine).  Fevers started spiking, and while it was clear there was a “bug” somewhere, we had to go hunting for it.  Sadly, it was his lungs, both of them now very sick.  What progress we had made in weaning sedation and the ventilator were lost and we went back to square one.  We did so though with the knowledge that he could follow commands when the sedation was reduced enough, and that he has amazing lungs that, even with a significant infection, were able to tolerate a reduction of the vent.  These two tidbits have made losing so much ground at least a little easier to swallow. I can rest easier knowing them.

As of today, while I am not quite able to say we have turned the corner on this latest infection yet, I can say we are moving in that direction.  Each day his lungs look a smidge better on x-ray, his labs move a little more in the right direction, and we are all breathing easier with him.  He is still very sedated at this time, and the ventilator is doing all the work of breathing, but assuming we get through this weekend without any surprises, an attempt to reduce the pressure being given by the vent may start early next week.  Then the process of weaning sedation and the vent begins again.

His injuries from the accident have been healing during all of this.  The small brain bleed and lacerated spleen have healed…..the last of the chest tubes was removed from the left lung yesterday and the lung injuries sustained are healing…..and the many broken bones are slowly but surely doing their thing.

The doctors are still taking things very day by day with my love, and so, for sanity’s sake, am I.  I have some vague ideas of what the next steps in this process will be, but trying to put some time frame on it all continues to just not be possible.  It almost always is in cases like this.  My mantra of taking one day at a time and making it the best it can be is getting a run for its money J


I really am doing okay. I probably analyze myself and my reactions to things more than most, and do so mostly because I find it fascinating how emotions and the mind work.  This experience has been no exception.  My reactions and typical modes of operation have been turned upside down in this case, but not so much in a bad way.  Unlike my usual approach to something medical, I asked few questions and emotionally protected myself from the extent of what we had going on in the beginning.  I just simply could only deal with a little bit at a time.  It was days before I asked about or looked at any labs….actually, it was more than a week into it all.  I minimized my interactions with anyone I thought might have more information to share than I could handle, and slowly worked my way into this whole mess.  The difference for me from chronic care to traumatic is substantial, and far more than I could have ever anticipated.  It has thankfully all just happened without any real thought on my part.  I have been at peace from the beginning with how I was dealing with it, and how I needed to deal with it all has just been so very clear cut, I have yet to question any of it.  All this to say, I am coping.  I did talk with some people that would know this last week, and they confirm I am still sane (always good to know…LOL).

The kids are coping remarkably well too, each in their own way.  They ask a little more about what’s going on each day, and I suspect, like me, they are emotionally protecting themselves till they are ready.  I get it and can totally walk that walk with them.  They are being loved on and entertained (read: distracted) by amazing people that we are so blessed to have in our lives.  And they, like me, are gearing up for the long haul.  The stress of it all is taking a toll on their health, and each one is dealing with some issues right now, but we have an amazing team of doctors that are quite literally at our beck and call, and that makes a huge difference. 

What I know, without question, is that we will all be okay.  We will find a way to accept our “new normals” and we will continue to truly LIVE as we have for so many years before this.

Our gratitude for all the support of so many is immeasurable. There are simply no words worthy of describing it. Our friends and family are amazing!!

A few links to some awesome articles & blog posts about Michael.....


The ChipIn page (in the sidebar) will have regular updates posted if your not a friend on Facebook.


Thursday, May 17, 2012

It only takes a second for your world to change forever

This was not the post I was supposed to be struggling with tonight.  This was supposed to be the post about how this little blog has reached the milestone of 25,000 views, and an opportunity to share the other milestone in our lives....the amazingness of our 10th Wish Night.  I was supposed to be sharing that Madison has seen some stability as of late, something we all desperately needed to see, and that Chance had the opportunity to be a part of the new Teen Room opening at Cook Childrens where both Troy Aikman and Garth Brooks were in attendence for the dedication.  It was supposed to be a happy post.

Life changes in a moment.

Tuesday morning about 11:30, my dearest husband was riding his bicycle back towards home when he was struck by a vehicle, not two miles from our house.  Other than the location of the accident, we still have no information on what happened.

What we do know is what the aftermath is, and will be for some time.  Michael has a laceration to the back of his head, some mild bleeding on the brain, a broken neck (thank you Lord, no paralysis), all the ribs on the left side are violently broken, the left lung was punctured, his lower back is broken, his spleen is lacerated and the artery that feeds the spleen was "leaking", his pelvis is broken in multiple places, and his left hip was broken. Thus far they have repaired the leaking artery and the hip....still potentially to come, the pelvis and ribs surgically repaired, and more information on the neck injury.....and lots of time for healing.  He is currently in ICU on a ventilator, but vitals are staying stable.

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.

We are early into this latest journey and I am not stupid enough to not realize there will be hard days ahead.....my heart hurts, literally, thinking about them.  Right now though....right now I just want to hear his voice and see his eyes open looking at me.

Those amazing friends I mentioned above are already at work to help us get through this time.  In the coming days we will get together a calendar for things we need help with, from meals to whatever else we can come up with (any ideas are appreciated, my brain is still not up to speed yet), and as of this evening a dear friend set up a ChipIn account to help with any financial strain we might face in the immediate future at http://mcnairfamily.chipin.com/medical-and-incidental-expenses-for-the-mcnair-family  Until I am able to consistently update here, there will be updates on the ChipIn page if your not on Facebook with me and able to follow along.

The kids are showing us (again) how amazingly strong they are.  All three dealing with it in different ways, but dealing with it so very effectively.

Please keep Michael in your prayers in the coming days, weeks and months.  I know my man....he is amazing and strong and resilient, but this will test him and I both...perhaps more than we have ever been tested before (and thats saying a lot!!).  Thanks to all that have already been here for us, and for those that will hold my precious husband in their prayers.



Wednesday, April 11, 2012

Storms




Last week, as most of you know, we had some devastating storms come through our part of this world. Having lived in Texas most of my life, I am hardly new to tornados and bad weather.  In fact, I have been through a couple of very hairy experiences in my time, all of which very thankfully never resulted in anything more than property damage.  I will admit though that the storms last week were a little too close for comfort, and for the first time in a long, long time I actually got everything ready for us to take cover and pray.

Thankfully, things stayed just far enough away that Chance and I never did have to actually go to our safe space.  The girls were with my mom in East Texas, so at least I was not worrying about them at the time, and Michael was at work where they spent more time than he liked standing in the stair wells.  When all was said and done, we were safe and had no damage.

As the danger passed for us, my attentions turned to our friends & family who were still in the line of fire.  It is in these moments that you sometimes realize that you have far too many people you love in one area, something I realized as I texted each one to make sure they were okay. One by one I was hearing back from these precious people that they were okay and the danger had passed, each time sighing with relief.  But as time passed and I realized some of our family had not responded, my concern grew.

After what seemed like an eternity, some news started to trickle through.  Most importantly, our family was all okay, but the neighborhood where both my Great Aunt & Uncle, and their daughter and her husband live had taken a direct hit and there was devastation. My great aunt & uncle’s house is completely torn apart….but they are okay.  Miraculously!!! My cousin’s house is one of the few still standing, and they were right there to help when it was needed most.  Thankfully the rest of our family in the area escaped the wrath of this devastating tornado.

Please keep our family, and all the others affected by the storms, in your thoughts and prayers as they attempt to rebuild their lives.



Sometimes, life feels a bit like springtime weather in Texas.

You have sunny, beautiful days where all you want to do is revel in the moment, feeling the warmth of the sun on your face and the perfect breezes.  Then, sometimes without much warning, you suddenly see something brewing in the sky and feel the winds shift as a storm starts to blow in.  It might blow over quickly, might just provide some needed rain, could be a gully washer, and sometimes it’s something much more. 

You can see the signs, just cannot know exactly what your in for.

This place, where you see something brewing but just cannot say for sure what it’s going to turn into, is where we have been with Miss Madison (medically) for a little while now.  Like last week, I haven’t wanted to say we were “okay” till the storm had passed, so I have been waiting for some sign from Madison that we have either seen the worst of this, or whether there is more to come.  It’s STILL not clear at this point. She is not in crises, but keeps flirting with the edges of that place far more than I would like to see. 

Last week, I lost a whole afternoon, watching the news and listening for signs that we should take cover.  Likewise, our days the last month have included gathering all kinds of medical information in an attempt to watch for signs of needing to do more to support our girl.  Much like a tornado, where you have just enough information to know that one might form, but cannot know where or when till moments before, we have been watching her like a hawk, looking for the signs that we might be seeing something that we need to take action to avoid.  Like a tornado, her body is sending signals, but we are (thankfully) still waiting to see if there is going to be a touch down and whether it will be a little tornado with no damage, or something bigger and more ominous.

At the same time, there has been a storm brewing regarding the kids care, who we are seeing, and between some of the physicians on our team.  This has not helped the general uneasy feeling I have, however, I truly believe some streamlining is in order and may make a positive difference for us all in the long run.  The stress of it all though has been intense.  I loathe making changes in the kids care team, in part because I have pretty carefully and meticulously built the team to where it is now, but also because it means new doctors and the process it takes to get them to the point where they have a vested interest in my children and our family.  It’s never easy, always takes time, and doesn’t always work the way we would like for it to.  The reality is though, while what we have in place has worked for us thus far, there are gaps that we have no choice but to get filled at this point.

In the midst of all of this, there HAVE been many sunny days (or at least moments), literally and figuratively, and for those I am so very grateful.  We are attempting to adjust to this new normal in some way, and with that is coming all kinds of changes.  In general, changes can be good, but they almost always come with some trepidation as I move out of my comfort zone.

Thank you all for the continued prayers…..please keep them coming!!!

Thursday, February 23, 2012

*Courage*



Courage
Noun:            1. The ability to do something that frightens one.
                      2. Strength in the face of pain or grief.

A few weeks ago Madison had an appointment with Hematology at Children’s to discuss options for treating her anemia, and while the appointment was a bit of a bust, one aspect of our morning there was very good.

As we sat in the small room doing Madison’s vitals she noticed a poster on the wall and was intently studying it, trying to figure out what it was about.  Before I even realized what was happening, the nurse asked her if she was a part of the “Beads of Courage” program and upon realizing that Madi wasn’t, she insisted we needed to get her “hooked up”.  We left the little room with what I think is going to be the start of something pretty awesome.

I had heard of the program, and thought it sounded neat, but didn’t fully grasp what it was about or, more importantly, the impact it might have on my children and I. 

It is sometimes the simplest of things that make me stop and think….really think.


Every bead tells a story of strength, honor and hope.

What is the Beads of Courage Program?

The Program is a resilience-based intervention designed to support and strengthen children and families coping with serious illness. Through the program children tell their story using colorful beads as meaningful symbols of courage that commemorate milestones they have achieved along their unique treatment path.

Telling the story…..tangibly!!  This, in and of itself, is an amazing concept, no matter the age of the child.  We talk about “owning” what our lives are around here all the time, as in that the kids have to own their treatment plans for them to work….they have to “buy in” if its going to have a chance to be successful….and while this was easier in some ways when they were little and much less involved, it is at the same time easier now that they can play such an active role.  This concept extends to all areas of our lives, but the truth is, “owning” something is easier when there is something tangible to attach it to.  So this part of the concept of Beads of Courage (BOC) feels really good to me.

The bigger revelation though, for me, was the idea of honoring, piece by piece, the kids strength, honor and hope.  RECOGNIZING all the things they do and get through, and not taking for granted that they will, or just should.

I am SO guilty of this….

After hundreds of blood draws, I expect them to just deal….It’s “just” a blood draw after all.  After so many doctor appointments, I expect them to handle what’s being talked about (with as much forewarning as I can give them) and “keep it together”.  After so many times being put under, going through a procedure, having their g-tube changed, etc., I just expect them to get through it unscathed. 

I realize that, in part, this is how I cope with putting them through it all.  Allowing myself to recognize how these things truly could affect them was too heart breaking and other than telling them I am proud of all they get through, there isn’t much more I can offer.  When they were little I could “reward” them for getting through some of these things, and in those early days, a Beanie Baby from the hospital gift shop was the ticket.  As they got older and endured even more, the “little” things like getting through an appointment with good behavior was no longer something I acknowledged, just expected. It needed to be something more, like a blood draw or anesthesia for them to be tangibly rewarded.  At some point, even those things were so commonplace that they were no longer considered significant, and besides, as the kids got older, the things that once gave them a goal to work towards (getting something), no longer held much worth to them either.  Oh sure, the promise of cash helped some, but the reality is/was, rewarding them had lost its charm and really wasn’t needed anymore.  They were giving their best just because, and I have grown to expect that.

I love that the idea behind this program is not to “reward” them doing something the way we want them to, but to ACKNOWLEDGE that they got through something….that they were courageous in facing their challenges that day, that they are strong each and every time they are enduring these things, and that we HONOR that courage and quit taking it for granted.

For me, it goes even further in allowing me to RECOGNIZE that courage. That its tangible, something we can put our hands on and see, that those in their care can SEE their story, and that they have the chance to tell their story fully, well….I think it has amazing potential.

The simple concept behind this program has changed me.

It has made me realize that I wish I could go back on some things and handle them differently….and not in a guilt inducing way, but rather, in a way that instills in me the desire to remember and make different choices next time.

I wish I could go back and deal with Madison giving herself a shot weekly differently.  It HAD to happen, and while it broke my heart to see her scared and upset about it, especially after handling it for so long without a peep, I wish I had stopped and acknowledged more how courageous she was to get through it each and every time.  I won’t ever take her composure for granted again, and I will acknowledge her bravery in the face of something like this.

I wish I could go back and handle Abby’s emotions in the midst of doctors appointments differently.  The good news is, I did this last week when we had a GI appointment.  Instead of asking her to “keep it together” till after the appointment and then we could discuss it, I shared with her that we all want her to express how she is feeling about potential treatments and that her emotions are legitimate, but the calmer she could be while talking to the doctor, the more her feelings could be expressed and considered.  She was AMAZING in that appointment…her precious voice cracked as she started talking, but she took a deep breath and finished strong, and the doctor listened!!  She will always be the one wearing her emotions on her sleeve, but she will also be an incredible advocate for herself when this is all said and done.

I don’t want to hang on to the things they have to get through daily, but I DO want to meaningfully acknowledge their courage in the face of the exceptional life we lead, and I think we have found a way to do that with this program…..and I am grateful!!!

A little more about the program….while it started as an oncology program, it has now grown to include several different diseases, as well as most recently, Chronic Disease, which is where we fall for the purposes of the program.  And while it is hosted by only a couple of handfuls of hospitals in the country, they have created a “Distance program” for those that are not affiliated with, or don’t fall under the auspices of their program locally.  While all of the hospitals we have affiliations with are involved, we haven’t had the chance to be included just because we didn’t quite fall into their criteria, so the distance program is ideal.

Finally, YOU have a chance to be involved…..

If you’re a family dealing with illness, I encourage you to look into the program.  I am seeing the impact it’s having on my “big” kids, and have seen others with smaller children that really get something out of this also.  Even if you choose not to participate, I hope sharing my story will help others take the time to acknowledge ALL these kids face daily, and not take their amazing courage for granted.

If you’re an artist, there is a role for you also, making beads for these amazing children.  There is more information at the website if your interested in participating in this way.

If you would just like to contribute monetarily to the program, that option exists also.

And finally, even if all you do is share this with a few people, there are families out there that could be so incredibly blessed to know the program exists.

Thanks for letting me share my excitement over this perspective changing program!!!

I promise an update soon.  Things are busy and kind of crazy here, as usual.  As I prepare for us to see our local Epileptologist we haven’t seen for a year, I suspect what all has changed will become even clearer to me, and this may not be pretty.  We are okay though….getting through each day and living by the mantra of taking things one day at a time and making it the best it can be.

Monday, January 2, 2012

Pomegranate Jelly



I have been a part of Michael’s family now for 26 years, and for as long as I can remember, every Christmas, Mammaw (Michael’s grandmother) has given him a jar of her homemade Pomegranate jelly.  It’s something we have both looked forward to, something we savor, and something we eek out through the year to try and make it last till the next batch.  We never, ever make it much past June.

Long before the pomegranate rage, we appreciated them and this amazing jelly made so lovingly by his grandmother.  Long before you could buy ANYTHING made with pomegranates, we were savoring the flavor, not even knowing it might be good for us in some way.  We were into pomegranates, before pomegranates were cool!!

I just placed the very last jar of pomegranate jelly that will be made by Mammaw, from her pomegranate trees in her back yard, in my refrigerator…..and it makes me sad, and melancholy, and just generally blah.

I won’t share Mammaw’s age because, well, she doesn’t (at least not willingly)…I will only say that she has been “39 and holding” for more than 50 years now.  She is exactly who I hope to be as I age….active, involved, engaged and, simply put, full of life. She is the epitome of growing old gracefully and I can only hope to do it half as well as she has.


Mammaw fell and broke her hip this past July.

She has recovered amazingly well…..no doubt because of all that graceful living she has been doing for so long…..but in the end, the fall has brought with it all kinds of changes, one of which is that she is now living locally in an assisted living apartment.  This means, at some point in the near future, her house will be on the market and there won’t be pomegranate trees to pick from and make jelly. 

This house has been theirs since Michael’s mom was a child at least, so saying good bye to this house is so much more than saying good bye to pomegranate trees (after all, it’s not like they are the only pomegranate trees out there!!), but in some ways, that yard Mammaw so lovingly tended for so many years, those trees that she took the fruit from every year, these are the areas that I personally will miss the most, the ones I grieve for as we move towards getting the house ready to sell.

I have already asked her to show me how to make the jelly, and I will find some trees somewhere to get the fruit from, but that little jar of jelly, so lovingly made by her, will never be the same being made by me.

Truth is, when all is said and done, we have one last jar to savor, Mammaw is here closer and we will get to see her much more, and she IS making amazing strides to getting back to where she was before…..all of which is way more important than a jar of jelly and some pomegranate trees.  Counting the blessings!!!

Sorry for being so MIA……updates to come…..working on getting back into a groove and getting out of the funk I seem to be in right now!!  It’s a new year and I just need to get psyched for new adventures and the promise a new year holds!!!!!
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