Wednesday, June 12, 2013

Off to Learn....& Worry

Just a little.

Year before last, a friend asked me to co-lead a new support group here in Dallas for those with Mitochondrial Disease. I was hesitant, only because my life is so unpredictable and I didn't want to commit to something I could not follow through on. She talked me into it....and if I am honest, I am glad she did.

She has the youth and hope to make this happen.....I have the age and experience to know how tough it is to make one work here.

I have been down this road, a couple of times now.

I have theories why it's a difficult endeavor for this location, but there is no question it's needed. We just need to be clever enough to make it happen and be successful, in whatever form it might take.

Each year, the United Mitochondrial Disease Foundation holds a symposium in different parts of the country. Some of the top doctors and researchers in the field of Mitochondrial medicine convene in one location to share information with the scientific community for 3 days, and then the families for two.

It has only once been in this part of the country, in 2002, and I was there for that one. It's the only one I have attended, but can say, it's a pretty remarkable experience, and an awesome way to learn more about this disease we are living with.

With a new group here, the UMDF offered us a scholarship to be able to attend this year, to have the chance to learn more, to network, and hopefully find some ideas on getting this group going. I could not have done it without them covering my travel costs, and I am incredibly grateful!!

In all honesty, I don't love leaving town without my crew. I worry a little that someone will get sick and I won't be here to manage it. I worry a little that I will miss some moment, or that we could have created some together had they been able to come with me. Needless to say, I worry a little. And I miss them....a lot.

I have two of my three "acting up" some medically right now, and this makes me, well..... apprehensive. However, I am leaving them in awesome hands (thanks Mom, Michael & Stephanie!!), and I just have to have some faith that this is meant to be.

I am slowly warming up to the idea of three days on my own ;-) (but seriously, way more slowly than I think I should be....LOL)

Please say an extra prayer that my family behaves while I am away.....that my brain can stay engaged enough to learn as much as possible....and that I can get there and get back with no complications!! I fly out tomorrow, and get back at noon on Sunday, just in time to celebrate the man I love.

I am officially declaring that I take NO responsibility for what my crazy family may do while I am away!! You have been warned!!!

Saturday, June 8, 2013

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!!
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