The perhaps peculiar – but beautiful – part of being a part of the Marfan syndrome community is the intense bond that is developed among affected families. I’ve never seen else anything like it. Every time a newly diagnosed, scared family contacts me my eyes get teary as I welcome them to the “Marfamily.” Like a biological family, we didn’t get to choose the members of the Marfamily, and in many respects few to none of us would have signed up to be a part of this group had we had the choice. However, being with, or even just talking online to, other members of the family brings about a feeling of “coming Home.” In fact, there are times I feel more comfortable with the Marfamily than I do my own biological family.
The bond we share goes beyond pleasantries and emails asking for advice on medication and activities. We keep up with each others’ doctors’ appointments, surgeries, personal trials and joys. When one person in the family is going through something, we ALL know and feel it. Keeping up with everything and the emotions that come with that can be exhausting at times, especially the more involved you get within the community.
Last week, my friend Laura died. Grief and support flooded our social networks. Though many did not know Laura (I “only” knew her online), they mourned her passing because she was one of us and even without ever talking, we’re bonded together in a way most people do not understand. Unfortunately, Laura’s death was not the only one in our community recently. Two of my dearest friends lost their babies in the fall, and there were other deaths and some intense surgeries besides. I’ve lost more friends than I care to count and experiencing this type of loss does NOT get easier with “experience.” At times it leaves me wanting to retreat and I have to step back from the Marfamily for awhile. One friend told me she is reluctant to make friends lest she lose them, and I understand that.
At this point you may be thinking, “geesh, why cultivate relationships with any of these people when it brings exhaustion, heartache, and loss?” It’s a fair question and, Heaven knows, one my mother has asked me often enough.
Yesterday morning, Danny finally had his open heart surgery to repair his mitral valve. Danny is, as I’ve mentioned before, severely affected with Marfan syndrome. In fact, two hospitals had refused to perform the surgery and many doctors had advised his mother Sarah from the start to only engage in palliative care because he surely would not live to see his second birthday. Sarah refused to accept this and quickly found herself drawn into the Marfamily. She assembled a team to give Danny lifesaving treatments, including this surgery. Although the “experts” said he should be dead, Danny sailed through his surgery. He is doing amazingly well, better than any of us could have imagined, I think. Yes, he has recovery ahead and needs continued prayers and good thoughts, but what we have seen so far is a miracle, a beautiful miracle.
And THAT my friends, is why I keep coming back to the Marfamily, why it is a community so dear to my heart. Although having a rare disorder brings sorrow, it also opens the door to countless miracles. It is an amazing thing to watch your friend’s son beat the odds. The support I’ve seen online brings a tear to my eye. The miracles are in Emri, who had a lovely 2nd birthday last week, a birthday she was given a 5% chance of seeing. They’re in E and Brody, who courageously handled intense surgeries of their own last year. They’re in the stable echo reports, the 2nd+ generation Marfs and in their parents who give birth to them, despite being told they should never have children. They’re in the adoptions, the college graduations, the Marfs who are elderly, the teenagers who can look in the mirror and say, “I am beautiful.”
How many people can say they get to truly experience these celebrations? These joys occur frequently, and they buoy me. I feel blessed to be a part of the Marfamily, for better or for worse, in sickness and in health, and I am grateful that Baby J will grow up in its loving embrace. It’s a bond different from blood but in many ways just as thick.
How do you feel about the Marfamily? What role does it play in your life?