Forged Narratives

Personal narratives have been on my mind lately. Mine, your, ours… they influence all of us. What we tell ourselves about what has happened to us and around us influences who we are much more than the events themselves. Sometimes I think we think ourselves into being, and as a person who often feels that I think to much, this can be scary.

In my own life I was reaching for a positive narrative regarding some difficult past events, not related to having a child with fibular hemimelia and I could not find one. During a discussion a friend said something to the effect of “they made you who you are.” I wouldn’t be me without everything that has shaped me. I have had this realization on my own before. It is part of my imaginary learn and relearn life lesson list. I should really write these lessons down instead of having an imaginary list. Might save myself some time and sanity.

This morning I woke up and realized something else. The positive part is not necessarily that the experiences made me who I am, it’s that I like who I am. Wishing my story to be different or even wishing the present moment to be different would be like wishing myself away. I don’t want to do that. What a liberating realization.

The sad narrative can be a tempting one to cling to. Perpetuating it and feeling sorry for yourself can be a form of attention seeking that can feel like a way to get emotional needs met, but it doesn’t work. Being brave enough to forge an identity out of what looks like a sad story at face value can change your life because it changes your mind.

And this brings me back to fibular hemimelia and Nicholas. I realized at some point that I could not wish FH away because that would be like wishing who Nick is away. Years ago I thought parents who said they wouldn’t take their kids fh away if they could were crazy! Hello! Wouldn’t you do anything to keep your child from suffering. Now I am in their camp and able to see this lesson applied more expansively.

Recently in our support group someone was struggling with their choice of treatment for their child. They chose lengthening and wondered if they had chosen amputation would their child’s life be easier. Reading over their post I began to wonder if the struggle was not so much about the choice of treatment but with the reality of fibular hemimelia. Taking away the leg doesn’t make it all go away and neither does reconstruction and lengthening. That is a hard reality. We can’t make everything “all better”. As a parent that is a lesson we all have to face. Regardless of wether a child has limb differences or not.

I have no idea what the last almost 11 years would be like without fibular hemimelia. It molded our whole family. It forged Nicholas in a way that I would not have chosen for him but now I wouldn’t change for anything. I also believe that like me, he likes himself. I don’t think he would wish it away either.

I believe we are all forged, if we are lucky. Seriously lucky. Life will throw things at you that you never wanted and you will use it. You will mold it into meaning. Or you will wish it away, wish you were different, wish your child was different and never find peace. Disclaimer: These are my personal thoughts and opinions. I am sure there are other paths to peace but I am also sure mine was forged in fire and I am grateful for that fire today. I didn’t feel that way yesterday and I might not everyday but I choose it today. Today I am proud to be forged and I am proud to see the forging of my children unfold.

I know how hard this is for new fh parents. I know because I was there but if I can get to here from there, you can too. You wont always want to wish it away and it could open your life up in surprising ways. I never planned to blog and moderate a support group. Having a child with fibular hemimelia brought together my desire to write and my desire to help others.

Creating a place to help parents new to fibular hemimelia became a dream. This blog and the Fibular Hemimelia and Limb Lengthening Awareness Facebook Group are the realization of that dream. I had no idea when I started if anyone would find this blog, would read it, would find it helpful. But I wished it to be so. Sharing our family’s journey and at times my personal journey has helped me forge meaning and build identity in a way that, when I am open to it, brings me peace.

“Difficulties we don’t deserve happen to all of us. Yet, when we dream, we begin to make meaning of these challenges. We give ourselves hope, and we can hope that the sorrow and pain we’ve walked through will help lighten someone else’s load.” Whitney Johnson Dare, Dream, Do

If you are interested in forging meaning and building identity check out Andrew Solomon’s TED Talk.

Fibular Hemimelia Support Group Greatness

I am proud of many things in my life. I wont go listing them in order of importance or anything but one I have to mention is the group Fibular Hemimelia & Limb Lengthening Awareness! It really is at the top of my list right now! I started it. I try to check in regularly and help when I can. I know I don’t know everything about FH. Who does? Still the thing that makes me most excited is to see other mothers and fathers sharing and supporting one another.

Tonight a mom wrote to the group about her new baby’s fh. Her post was touching on many levels. The responses she received within minutes were amazing. It sends a clear message: YOU ARE NOT ALONE.

Sharing information and supporting one another is why I started the group! Thats it and it works.

https://www.facebook.com/groups/fhlla/