I found out that there was a local group of people with marfan syndrome who got together often in the beginning of 2009, shortly after Giraffegirl's genetic test came back positive for marfan syndrome. And so our connection and involvement with the Minnesota Chapter of the Marfan Foundation (at the time the Twin Cities Chapter of the NMF) began. I knew if I was going to successfully raise kids with this condition I was going to need others who understood what it was to walk this path. I didn't know it then, but I was going to need adult women who had been through growing up with this to put my fears at bay, and I was going to need other moms raising kids with this to talk about fears and share experiences. I needed community.
When we first started in the Chapter, I was the only one with young kids attending, and although lifelong friendships and some of my favorite adult marfs were met in that first year, there was still a hole. I wanted those other moms to share this experience with. Fast forward 7 years, and our chapter is a mix of parents of affected kids and adults affected themselves. It is exactly what I longed for, but I had no idea what I was asking for with this.
You see, I'm the first to admit that compared to so many we have been lucky in the symptoms my family experiences from marfans. Yes, the kids have dilated aortas, but they are well managed with medications. So far none of them show signs of scoliosis. They both have flat feet and pronating ankles and use orthotics, but that is such a minor thing in the realm of possible treatments. And the only surgery either of them have had is Giraffegirl's surgery for ambylopia (twice).
But it isn't just the people in my own house that I love affected by this anymore. There are adults in my chapter affected who are sisters to me as we navigate the role marfan plays in our lives. There are children affected growing up alongside my children, whose mom's are some of my closest friends, and with whom we cry at each struggle together and celebrate each small victory together. It is family in every sense of the word. It's my local Marfamily.
And so, though my own children have never had surgery, and though my own husband has only had (and I mean that only for the sake of numbers because I know it was a huge surgery) valve sparing aortic root replacement, I have been through so much more with this Marfamily of mine.
In the past two years we've been through two adult valve sparing aortic root replacement surgeries, multiple eye surgeries in both kids and adults, a spine and kidney surgery for one of our 11 year old kids, and a valve sparing aortic root replacement surgery for one of our 4 year olds. It's alot for any family to handle. And every time one of these loved ones is under I sit and wait, anxious for the all is ok, the news that they are fine. I talk to the mothers and offer words of encouragement, not having sat in their seats but knowing the possibility is there and it could be us someday. And we've been incredibly lucky with surgeries here, with story after story of success and happy endings. It's an emotional roller coaster to be sure, but one that has always turned out good in the end.
I'd never personally known anyone who died of marfan syndrome directly before. I've known people with marfans who have died, but always either from other causes or they were friends of a friend, so far removed that I could choose not to deal with the reality that their deaths were from this condition. And so I have. I've chosen to believe that if we followed the doctor recommendations and had surgeries when people should, those I love with this would be ok. It's kept so many of my mom fears away, this refusal to acknowledge that which somewhere deep inside I've always known to be true.
A week ago that which I refused to acknowledge happened, and I was forced to confront my biggest fear head on. That little 4 year old in my Marfamily who had heart surgery this year passed away due to heart failure caused by marfan. He was a brave, determined, tell-it-like-it-is, no nonsense little kid, one who refused to even say hi to me when I visited him after his surgery in the hospital (and who can blame him, when you have heart surgery at 4 I agree manners are over rated!). He was loved by so many including me, and the hole he's left behind in our hearts seems vast and wide. I was there with his family the night he died, and I can only describe the experience as holy. It isn't mine to share everything, but amid the tears was laughter, and present everywhere was love.
He's left behind an amazing gift for the Minnesota Marfamily too. We just came off a magical weekend at the National Conference, and so many from across the country commented on how close our chapter was while we were there. I don't know that we truly appreciated the blessing that was before this. In the last week I have had more phone calls, texts, Facebook messages, and other communications asking how the Marfamily can help. People have looked to me to know what to do, and although I am so unprepared to give any advice on this I've answered the only way I know how. We move forward together and we help with love and without fear. We follow the lead that little boy left us. Without hesitation and with hearts open and our walls down I have felt that love and care this past week radiate from everyone in our chapter who knew him and knows his amazing family. This loss has brought us all closer, and we've exchanged more I love you's and I'm grateful for you's than I had heard in all my years with this family.
My relationship with this condition has changed, that much is true. I no longer look at it as something that can't take those I love. I understand the panicked fear I see in the mom's of newly diagnosed kids so much better then I did. There are so many people with this condition that I truly love, that I would be devastated to lose, both kids and adults, and it's a choice I make to expand this family of affected individuals I helped to grow. Life is about risks. It's about faith. It's about love. It's about picking yourself up by your bootstraps when you don't think you have anything else to give, and it's about holding each other up when the grief is so consuming that you can't stand.
I wrote on a sign we had a picture taken with at the Marfan Conference Walk for Victory that Victory is having a local Marfamily. And that has never been truer than this past week, when our local Marfamily stood side by side united and broken hearted surrounding a beloved family as they celebrated the life of an amazing little boy. For sure, that wish I had so long ago to raise my kids in a marfan community has brought so much more joy and pain to my life then I ever imagined. But it has been an amazing blessing, and it's a group I am so grateful to be a part of. And so with renewed vigor and determination we move forward in our efforts at awareness, education, fundraising, and above all support. We will remember this little boy as we go forward, and his life will continue to make a difference through the continued efforts of all of us who loved him.