Learning I was pregnant for the first time was a surprise. The calmness I felt in that moment was a surprise too. Pregnancy itself was full of surprises, most too gross to share here. And childbirth was an even bigger surprise. I will leave it at that, in case anyone reading is pregnant. I don’t want to ruin the surprises for you.
Maybe it’s meant to be this way, but it seems to me that people least often share, the most significant things about life. We have a frame of reference regarding events and share that all over the place (hello twitter and facebook). But really, the real stuff is like a diamond in the rough.
I am often surprised when people enjoy my blog posts. When I reflect on which ones resonate with others, it’s really the ones where I open up the most. Sharing what hurts and what’s real is what others identify with and take interest in. It’s the identifying part that I am most interested in. Realizing I was not alone was a surprise. When I write a post and others say they have felt the same way, it is healing and refreshing.
Sharing my experience as Nick’s mom and Nick’s fibular hemimelia journey has had surprising results. I started writing because I wanted to reach out to families who were trying to decide wether or not to amputate their children’s limbs. I also wanted families going through lengthening and reconstruction to not feel so alone.
To that end I also created the facebook group Fibular Hemimelia and Limb Lengthening Awareness. I had been run out of a fibular hemimelia support group on yahoo, because it had a moderator that believed she knew what was best for everyone (amputation), and she didn’t want me telling parents that lengthening wasn’t torture and that my boy was running and playing and loving life with his own leg.
Awareness of and telling the truth about lengthening was key at the time. It is still important to me but it also surprises me to see just how much of a support group our group has become (over seven hundred members later). It is a place where people are so real. They open up for, and to others, to help them, and themselves. The blog and facebook group have helped me in ways I can hardly express. That wasn’t my intention but it’s a surprise I am grateful for.
I think having a child with a birth defect had a profound effect on my psyche. It dictated the mother I would become. That certainly surprises me. In the beginning it was all about minimizing the effect fibular hemimelia would have. It was about knowing Nick would walk and have a “normal” life. FH would not get in the way.
But what is a normal life? Before I had Nicholas, I think to me a normal life was being married, working, having kids, planning vacations and progress. Something like the american dream, ending with me as a grandma holding a baby rocking on a porch someday. That was success and I was relatively on track. House, husband and baby on the way seemed like a good place to start.
That may make it sound like I was some serious planner, but I wasn’t. I think that trajectory is ingrained in us in a variety of ways. Fibular hemimelia woke me up. Shook up everything I knew and believed.
The biggest surprise of all is that no one told me the progress really doesn’t matter (at least not back then… lots of people say this kind of stuff now). It’s what happens in between that does. Moment by moment living. It’s not about getting Nick’s leg fixed soon and quick. It’s about laughing at my baby joyfully dancing with a crazy hunk of metal on his leg. It’s about hearing his little sister tell him that she can be brave because of him. And for me it’s about connecting. This blog, the facebook group, emails and calls in which I am able to help someone, really help them, that feels like a kind of success I didn’t know existed.
Reaching out to others, opening up and really sharing is a gift. It’s being passed around all the time in the facebook group. For me it is an every day thing. Reading other’s struggles doesn’t get me down. It motivates me to try to think of solutions or to remind the sacred parent that we are here for them. Sometimes that is enough. Just being present in the moment. I can’t help everyone but I try.
Nicholas is as motivated as I am to help others. He loves that reading about him has given others hope. He loves that he has been translated into spanish. He loves that his experience has value beyond what it has been for him. And he loves being what he now calls “world famous”! That’s a surprise. The extreme pride Nicholas feels because of fibular hemimelia.
I didn’t know when I had a baby with a birth defect that that is what was possible. I didn’t know my son would be my hero. At this point though, that’s no big surprise.