Wednesday, August 8, 2012

Our Marfcation- AKA NMF Conference 2012

If this past weekend was a Visa ad it would go something like this:
Conference registration fee for 2 adults- $600 (thanks MN chapter for the scholarships!)
Cost of 3 nights at the Pennisula Hotel (conference rates) - $620.
Cost of Parking in Downtown Chicago for 3 days- $82.00.
Being surrounded by hundreds of other people who have connective tissue disorders or raise children with connective tissue disorders - PRICELESS!

Many of my friends and family asked me how conference was, or have asked me to describe the experience. I've struggled to find the words to do so, maybe because the experience is so unique, and it is so rare in this world to encounter people as openly accepting as the marfamily. But I think it is more than that. How do you explain to those closest to you how lonely it sometimes feels to raise children with this condition, and how sitting in a room with a hundred + other marf mothers for an hour who are walking this road with you can momentarily make you forget those lonely times? How you don't even have to say your struggles out loud, but when you do you can look around and see the tear stained faces of so many others who have faced them too? How do you explain the experience of spending three days with your heart bared open and your walls down, on emotional overload but not wanting the time to end either? How do you tell them that a complete stranger can understand what you go through better than they who have been there year after year? How do you describe the healing power of being with people who are empathetic to your situation, not just sympathetic? How do you describe the indescribable?

This isn't my first NMF conference I have been privileged to attend, but it is the first one I got to be at fully with no responsibilities. Our first one was in 2009 in Rochester, MN, and as part of the MN chapter it seemed I spent as much time with "behind the scenes" things as I did enjoying the experience. I spent Saturday at that conference with the kids instead of attending general session and the medical workshops. On Sunday I even led (really badly, mind you) the session for unaffected spouses that year. It was a different experience all together for me, and I spent so much time trying to make sure I didn't forget any responsibilities I forgot the most important thing about conference that year- making connections.

I didn't miss the chance this year. Before conference had even begun I had met at least one marf family in our hotel swimming pool, and we had walked the streets of Chicago playing "who's a marf" (be honest, we all did it). Day one, I got a chance to get to know some of the other chapter leaders from around the country. They are an amazing group of men and women, and I left the leadership session inspired to get moving on some new ideas. At dinner that night I got to better know some other parents of marfan kids, as well as a few of the teens and young adults. Day two, I had the chance to learn about some of the newest research, and I was excited to learn that they are studying how marfan affects pregnancy, giving us hope that some of the dangers may be gone before giraffegirl is old enough to consider starting a family. Day two also gave me the chance to meet the famous Dr. Dietz, as well as some of the other top marfan doctors. I also met many other parents, including two moms from our home state of MN who are relatively close by and have kids my children's age! And day three I got to participate in the emotional sessions, and got to talk honestly about the experience of being a marfan mom. It was all amazing! I can't count the number of people I met and the connections made.

It wouldn't be right to blog about conference without talking about the very best part. It happened before the pediatric orthopedic session on Saturday. I was waiting for it to begin when I heard my name. It took a minute to recognize her, but when I did I couldn't believe she was there. The wife I spent the long day with as our husbands had aorta surgery in February of 2010 was there. I hadn't seen her since we had left the hospital, only talked to her via email a handful of times, but the bond made those five days left us family. It was amazing to see her and to finally meet her husband. Even my husband, Mr. Shy Guy, really liked them (I kept forgetting he didn't know them-it just seems so weird because she played such an important part of my life- what was he thinking sleeping through all that?!) It was wonderful to see them, and to reconnect and catch up on their family. We will forever share that special bond, and have that lifelong friendship formed so quickly. It was the best surprise ever!

It's been two days since we returned home from our trip to conference. Two days of the normal routine, but I feel anything but normal. I've been busy, finding people I met at conference on NMF Connect, making sure that the initial connections I've made remain. I still feel a little raw emotionally, but I think there is a part of me that wants that to stay. I don't want to put my emotions about marfan back in the little box I keep them in. I don't want to put on the false smile of everything is OK that I can put on in an instant. I don't want a pity party, but I do want honesty. I don't want to have to smile and celebrate with my friends their children's athletic accomplishments without feeling able to express my sadness when registration time comes around. I don't want to bury feelings because I feel the need to protect those around me.

When my husband first went to conference 3 years ago, at the age of 33, the experience of being among so many other marfs healed a part of him that was still suffering from the teenage years experience of feeling different. We vowed at that conference we would do whatever it took to get our kids to conference during their teenage years, whatever the cost, wherever the location. Seeing the magic that happens between the marfan kids is worth it to us, especially the teenagers. Until then we'll go when it is doable, when it isn't too far, when we can afford it. I do think that the teenage years are the most important time for kids to go, but I'd say that for parents, the years now, as we are starting to negotiate our children's school plans and preparing for the future challenges, are the most important time to go. I feel incredibly lucky and blessed to have had this experience.


  1. you summed up the experience beautifully! for me, conference is when i feel truly whole. it was so great to get to meet you in person :-)

    1. It was wonderful to meet you too Maya! I'm so glad I got the chance to talk to you at conference!