Retreat to the Easy Ship!

Earlier this month I was fortunate enough to attend the Being Bold Women and Power Retreat at the Omega Institute in Rhinebeck NY. It was AMAZING. Truly. I feel like a changed person. I have a renewed interest in leadership and a curious peace within myself regarding my path. I was fortunate enough to receive a full scholarship!!! I would count this as one of the greatest blessings of my life. The women I met seemed to be just the people I needed. There were so many messages and moments that touched me. It felt like magic. 

Before the retreat I didn’t want to spend a lot of time researching and analyzing. I knew Elizabeth Gilbert and Elizabeth Lesser would be there but that was it… That was enough. Still I knew the rest would be amazing as well.

And they were! I would love to write a little about each one and I will, at some point, but since this is No Fibula No Problem I must share regarding the speaker that was born with Fibular Hemimelia. Did your jaw drop? Are you as shocked as I was? Bonnie St. John was born with fh, had her leg amputated at age 5, and became an olympic skier. She is a remarkable woman. I wonder how much having been born with fibular hemimelia drives that. She never even said the words fibular hemimelia but when she showed a photo I knew. 

Bonnie talked about needing a new etiquette to talk about differences and she is so right. Bonnie was talking about all kinds of differences and in particular race. She talked about being color-mindful instead of trying to be colorblind, which really does not work. I tried this out and had an amazing experience which I really want to share in another post. Regarding limb differences, so often in our support group we talk about wishing people would just ask questions rather than stare at our kids! I can’t speak for everyone but I know a lot of moms have felt this. Although those who ask questions don’t always do so in a kind or respectful way. I believe it’s possible to ask in a way that is not hurtful. If people could bring curiosity to those moments, instead of judgment, on both sides of the conversation it would be a game changer. 

It would be a life changer.

Which reminds me of something Elizabeth Gilbert said, that the creative life is living from a place of curiosity instead of fear. 

Which reminds me that I really need to do that right now. 

Nicholas was having knee pain, which is somewhat better, but he’s now having foot pain. It’s the bottom of his foot and not his ankle. It’s the part of his foot that hits the ground really. His foot has a rocker bottom. It’s just so unique and the thing is, there is not a surgical fix. The last time this happened Dr. Standard called it a “flare up”. I am hoping that is all it is, and it will stop. I want Nick to be able to walk pain free. He’s in school with crutches today because using the air cast (boot) he has used in the past makes his knee hurt. 

When he is in pain my mind tends to go straight to fear! I hit the fear bullseye like an expert marksman. What if it the pain does not end? What if his foot really isn’t going to work for him? What will happen as he grows if his foot can’t handle his daily life now? He’s not even terribly active right now!!!! 

Fear spiral. What if’s. It’s all bad news. It’s hard. Part of me wants whatever will make this easier for Nick. Make it better. Moms make it better. Help him. Keep him home. Push him. All these thoughts going round.

Can you feel the fear spiral?

Approaching this from a curious perspective means observing, questioning, but not judging and spiraling.  

Maybe Nick’s insert needs to be replaced? 

Maybe I should bring him to Baltimore to get x-rays and not think beyond that?

Maybe I don’t have to jump to the worst case scenario? 

Maybe I can have faith that things have always worked out in the past and will continue to do so? I can be curious about how exactly that will happen, being fearful about it surely does not serve me or Nicholas.

I try to remember that the easy ship sailed 12 years ago and we were not on it. Fibular hemimelia was never going to be easy.

Maybe the easy ship is an illusion anyway? Is parenting ever easy? No. I don’t really think it is, but I admit to occasionally judging other parents who act like it’s so flipping hard meanwhile they have never had to worry about whether or not their child will walk pain free again… fear spiral includes a judgement spiral at the moment…. it’s just a moment. I know there are a multitude of fears involved in parenting, for more reasons than I can imagine, and some far more serious than fibular hemimelia.

I know we all want to retreat to the easy ship sometimes. 

I want to retreat back to my retreat at Omega. Instead I will review my notebook filled with notes. I will forgive myself for the fear and the judgement. Judging my fear is particularly perplexing and fruitless but forgiving it… 

Maybe I don’t have to go on a retreat to access the magic. Maybe I just did. 

4 thoughts on “Retreat to the Easy Ship!”

  1. I wonder if what Nick has is nerve pain in his foot. It sounds like my foot and I’m still hoping its nerve pain and it will subside in another few months or walking on bare feet won’t be too likely for me. So it’s not unique to panic when considering the next medical “crisis” (that’s what it feels like) with FH. I’m off to meet a new pt group that will be in the same complex as where we will be moving this week.

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  2. Thanks for continuing to post, Jen. It gives me courage to hear from another mom 🙂 You probably dont remember but we met in Baltimore once. My son Clay is 2 and had the super ankle surgery this year. I think it was your blog that helped us find Dr. Standard. Clay is doing great. Thanks again to the moms like you for sharing your experiences.

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    1. Thank you for commenting! I hope your son has done well post super ankle! I actually have a terrible memory name wise but I bet if I saw you again I have a good chance at remembering! I love knowing this blog has helped! Maybe we will see each other again at Sinai some day!

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