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. 

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.

Your leg is cool

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Yesterday was the last day of school. It was an emotional day. Christopher “graduated” kindergarten. Charlotte almost refused to leave early because she did not want to miss time celebrating with her class. And Nicholas, well he was happy to leave early, and maybe the most excited about summer, still I believe he had a great day and more importantly a great year.

I had to take the kids out early regardless of it being the last day because Charlotte had to have her teeth cleaned. While waiting for her I sorted through the kids folders and envelops. The office has just enough curious toys in the waiting area to keep the kids occupied. The amount of paper that has come home in this last week is crazy. In Nick’s folder was an envelop that contained small notes written by his classmates and homeroom teachers. They were really heartwarming notes. They were so kind that I had a hard time not crying. Being at the dentist office helped. I asked Nick to hold one up so I could share it with you all. Hence the pic above.

Two notes in total mentioned his leg. The other one said:

“I like how you try to do stuff with a hurt leg and you were friendly and brave”.

I love these notes. The others centered around Nick being kind, helpful, smart, funny, respecting others and being a good friend. I love the leg notes but I also love that it’s not all about the leg.

Recently there have been some posts on Facebook regarding parents being scared of their children being teased. I had those fears to a great extent when Nick was little and still have them to a much lesser degree. These fears made me think about how I worried so much about treating Nicholas so “normally” that other people would to. I felt like I was setting the tone for others in my behavior and attitude.

I am or may not have been right about that but I now believe that I was in fact setting the tone for how Nick would see himself, which does dictate how others see him today. The way he expresses himself regarding fibular hemimelia, the way he lives his life without limits, the fact that he believes fibular hemimelia makes him more!!!

“The way we talk to our children becomes their inner voice”. Peggy O’Mara

As parents many of us worry a lot about the negative influence society will have on our children. Wether it be teasing, bullying, the media, friends, etc. I know I am still early in the game in many ways, I have yet to parent a teenager!!! However I do feel that my experience with Nick does shine a light on the fact that our influence can be greater than all of that. The solid foundation I have tired to build for Nick has held so far. I expect that if he was teased he would be hurt, but I do not believe it would crush him, so the worry about it does not crush me.

Plus, worrying about these things really doesn’t make it easier if it does happen. Here is what I think helps; build a solid foundation of love and acceptance, celebrate who your child is, acknowledge the hard parts of the journey but help your child focus on the light at the end of the tunnel and don’t automatically react negatively to people staring or questioning. If you react negatively eventually your child will too. That kind of reaction can create shame. Staring, in and of itself, can be totally benign. It’s usually curiosity or concern. People generally don’t mean any harm. I know I stare sometimes at people with differences. I try to smile at them when I realize I was staring. I know I have said the wrong things!! I also know in my heart I never meant to be hurtful. Intention is important to acknowledge. Smiling and answering people in an non defensive way puts everyone, and most importantly your child, at ease.

I know I have written about most of this before but these little notes from Nick’s class and watching how he operates in the world got me thinking. Nick’s classmate would never have thought Nick’s leg was cool if Nick didn’t, and what Nick thinks is what matters. I do feel like I need to be more mindful of this with all my children and not just about the big things but the little things too. The world will not always be kind. I hope they will know that they do not have to take in the unkindness, that it is never who they are that is the problem. I hope that the kindness that resides in their hearts sustains them through whatever life throws at them.

“It’s not our job to toughen our children up to face a cruel and heartless world. It’s our job to raise children who will make the world a little less cruel and heartless.” L.R. Knost

That’s the kind of people I am aiming to raise. I am certain that other parents are doing the same. Nick’s notes are proof of that.

This post is dedicated to Mrs. Goodnow. I am so grateful that you were Nick’s teacher this year. Thank you!!!!

 

Desperate Times

Nicholas was feeling really lousey this morning. He’s never happy to get up and go to school really but today was the worst. He wouldn’t speak to me. He tried to get back in bed after he got dressed. I had to convince him to eat. 

I, on the other hand, was determined to be positive and kind. I have always said that I am not a morning person but I figured if I put that thought out of my mind, downed a cup of coffee, put on some groovy music, I could fake it. IT WORKED. I beleive I could have passed for a morning person, and had I not been trying to be positive, Nick’s awful mood would have turned me into mean morning mommy. 

By the time we got to the bus stop he was still miserable and I was feeling sad. I always hated going to school. I do not want this to be his fate. So I did what almost no other depserate mother would or could do. I burped the alphabet. 

IT WORKED! He smiled. Burped some himself and got on the bus seemingly feeling much better. In fact I just recieved a call from him letting me know he would be staying after school to play basketball because his team needs him. This is his first game since he had surgery and I am not even sure if he was able to attend any practice because of surgery but he sounded happy on the phone. 

I have seen Nick in school and he seems fine once he is there. His teacher has not observed him being miserable. Although I was really good at suffering in silence as a child myself. I really never tried to think about school differently. I did’t usually do well. Nick gets all A’s so I know it’s not academic stress. I think he would rather be home doing his own thing and I can’t balme him for that. So my quest to make him think differently about school will continue. I hope I don’t have to burp every day to make him smile but if I have to I will. Desperate times call for despreate measures and a little grossness in the morning is a small price to pay to brighten his day. 

Defining Nemo

Nicholas and Nemo were both “born” in 2003. Nemo with his little fin. Nick with fibular hemimelia. This could have been a lovely coincidence. A match made in heaven. Except it wasn’t.

One conversation really turned me off the movie (though its not at all fair to the movie). Someone was telling me about why they did not like the movie. They said it was depressing because “all of Marlin’s kids die except for the gimp”. In that moment I froze. Then I changed the subject, and felt awful for not calling this person out on their ignorance. They had actually watched the movie and that is what they took from it. I know cruelty was not the intention. I know this person was not thinking of Nick specifically. Maybe this was a horrifying attempt at humor. It did make me wonder what they thought of my son.

Back to Nemo… The main plot of Finding Nemo is about Marlin finding Nemo, obviously, but it’s also about learning to let go. Finding and letting go. They do seem to go together.

Dory: There, there. It’s all right. It’ll be OK.

Marlin: No. No, it won’t.

Dory: Sure, it will. You’ll see.

Marlin: No. I promised him I’d never let anything happen to him.

Dory: Huh. That’s a funny thing to promise.

Marlin: What?

Dory: Well, you can’t never let anything happen to him. Then, nothing would ever happen to him. [Marlin stares at her] Not much fun for little Harpo.

If we focus too much on preventing the bad things from happening we will prevent the good things from happening as well. That’s a repeat theme from a few blog posts ago. I also think we need to find out who our children are, in order to be able to let them go. Realizing that Nicholas is capable of handling the questions and interactions that come with having fibular hemimelia, on his own, keeps me from being terrified of what might happen every time he is away from me.

Meanwhile Nemo is trying to prove himself to his over protective Dad. Although his fins smallness, seemed small to me, compared to Nicks leg, Nemo still needed to learn that he was able and capable. The difference between Nemo and Nick, is that Nick was always told that he was capable and able. He still needs to live it to really know it. However he will not ever have to prove anything to me. For Nemo, seeing Gills damaged fin helped him believe he could be capable too.

Gill: Nobody touch him! Nobody touch him.

Nemo: Unh! Unh! Unh! Unh! Ah, can you help me?

Gill: No, you get yourself in there, you can go yourself out.

Deb: Ah, Gill!

Gill: I just wanna see him do it, OK?! [Nemo panics a little] Calm down, alternate wiggling your fins and your tail.

Nemo: I can’t! I have a bad fin!

Gill: Never stopped me… [Nemo sees Gill’s scarred fin] just think about what you need to do.

Nemo was brave and capable. Kids with differences will hopefully identify with that (though hopefully they wont take risks like Nemo did to prove it). It’s also a wonderful way for kids without physical differences to be introduced to a character with physical differences.

Accepting differences is my favorite theme of Finding Nemo. I think it’s illustrated best in Marlin and Dory’s relationship. Dory is different. Dory may not be able to remember short term information, but she has other abilities and gifts. She can read. She can understand a little whale. She is remarkable really despite her mental illness. I don’t know if kids get that but they know Marlin would not have found Nemo without her. What she had, mattered more than what she didn’t have.

And lastly what is called the tao of Nemo “Just keep swimming”. Even if we help our kids to gain confidence and feel able, that doesn’t mean things will be easy. I don’t think life is easy for most of us and I don’t think it’s supposed to be (which I know I have written before). But fibular hemimelia does not have to be the thing that makes it hard.

For Nemo it’s really not the fin, but how he thinks about the fin that matters. I think it’s the same for Nick. It’s not the fibula or lack of fibula. It’s what he thinks about the fibula. This reminded me of Thich Nhat Hahn’s quote “No Mud. No Lotus”. Maybe FH does feel like “the mud” sometimes but the outcome of it so beautiful. And without it, we would view life so differently. Maybe we would have more problems. Maybe we would view the little things as problems, that are just little things.

No Fibula No Problem. The tao of Curley.

This didn’t start out as a fibula hemimelia post and yet it seems to sneak in anyway…

So this year was our first and our last year homeschooling. At least that’s how it seems right now. Honestly I think it’s impossible to know for sure what the future holds. Homeschooling certainly taught me that.

The reasons I think it didn’t work for us are many. My kids really liked regular school. They had good experiences and great teachers. If we had started homeschooling with some anti-school fire in our bellies that might have changed things.

I also have to consider my motivation for doing it in the first place. For one thing moving, and some anxiety over that, was a factor. They went to a lovely school. Fear of the unknown and wanting to shelter the children was certainly a factor. In terms of education I think for the right family homeschooling can be a wonderful experience. I think you have to actually enjoy teaching for it to be a success (IMO). I know some of the homeschooling community will disagree but the ability to turn every day moments into enriching educational experiences involves teaching. Opening up a curriculum and making it come alive involves teaching. And if you are 100% unschooling (which Nicholas eagerly requested over and over) then thats something different altogether.

I realize I have been teaching my kids things for their entire lives but seriously it is not the same as teaching phonics or multiplication or even addition for that matter! We ended up switching to an online based curriculum in October and did that along with grade level work books and other things like plain old copy work just to improve their handwriting.

Trying to literally be everything all the time to my children was a lot though. Doing lessons with big kids while little kids were around was hard. Doing the regular mom stuff like keeping them from burning the house down and being teacher mommy was hard. The kids found my lessons boring and the computer lessons boring and they missed seeing the same kids every day. The routine of school had worked for them.

And the ultimate truth is I found it boring. I love my kids but I don’t really want to be their entire world. I know it doesn’t have to be this way but it’s how it felt for me. I think I jumped into it really trying to almost make it my “career”. I think I have been ready to work outside the home for a while but felt guilty about it. How could I choose to work if I don’t have to? Wouldn’t that make it seem like I don’t love and want my kids enough? Nick has surgeries (here’s where fh comes in) I need to be available for. Working would bring stress to everyone.

Well most of that isn’t true at all. I know lots of working moms who I think love their kids as much as I love mine. Wether they work because they choose to or because they have to. Nicks big surgeries are done for a long while. He’ll never have an external fixator again. Things will come up and he will have internal lengthening but truthfully lots of families work through surgeries and it all turns out ok. Their kids legs grow. They survive.

The true part is working would add stress. That is true. However my being fulfilled in another way will make me a better mom. If you are fulfilled by at home motherhood more power to you. Keep doing what works for you but for me it really doesn’t anymore. It actually wasn’t my plan. I wanted to be a psychologist. I graduated magna cum laude so I could apply to grad school. But life happened and grad school didn’t.

Back to schooling. The kids are excited to go back. Nick did express some anxiety today and this is where the fibular hemimelia comes in again. “I probably wont fit in because of my leg but then they’ll say ‘wow he’s had a lot of surgeries he must be a tough guy’. This time I’ll be more open minded. The last two years I just looked for someone like me [to be friends with]”.

Of course fibular hemimelia plays into my desire to shelter the kids. The truth is Nick has had moments where he has had to stand up for himself and he has done fine. Most kids will have these moments wether they have two fibulas or not. I have to remember my goal of providing so much love and acceptance at home that he is strong enough to handle what the outside world dishes out. I hope he is strong enough to come home and tell me when someone or something hurts his feelings, strong enough to allow himself to feel bad sometimes but to keep going. I hope that for all of my children.

In the end I do not feel like I am being the best mom I can be in the homeschooling mom role. A homeschooling mom I really admire asked me to consider what my ideal day would look like. She helped me to see that it was ok for me not to want to homeschool. She has fabulous kids that I adore. They are kind and smart and lovely. But the truth is she is a fierce mom who is doing what she wants to do. That has to factor in there somewhere. My fierce momma skills lie elsewhere.

I still think school sucks in some ways but now I know homeschooling does too. There is not a perfect or easy answer. This time it’s my turn to be strong enough to say this is not working and we are ready to make a change. If I follow my children’s example I know I’ll get there.

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These photos are from mothers day 2011. When people hear that I have four children they very often say “That’s a handful” or some version of that. So I reply “It’s a happy handful”, which it really is most of the time.

Pushy, Judgmental, Know-It-All

I try to be nonjudgemental, not a know-it-all and not pushy, but sometimes I feel like I fail at some or all of that. When I hear about children with ankle and/or knee issues that have had lengthening but never had their joints addressed, I get upset (any doctor doing lengthening for fh today should know enough to take care of the joints as well. I know not every kid will need the surgeries Nick did but most will need some!). When I see things in photos that are so clearly wrong, I get upset. When I read about doctors telling parents that lengthening is ruled out because of total expected discrepancy or number of toes I get upset.

Yes I have a been there done that attitude sometimes but that’s because, as a parent, I have. I have been on countless web chats with the RIAO docs and had countless conversations about fh and read everything I can about fh and tried my best to support others the best way I can. But like I said sometimes I get upset.

When I get upset I type fast. I make a lot of typos (actually I am typo filled even when I am not upset… it’s the tiny iphone screen I swear!) and I sometimes sound like a pushy judgmental know-it-all. That is not what I want to be and I believe it does not serve parents at all.

The truth is there are parents who will and do choose to amputate a leg/foot just like Nicks. Even though lengthening and reconstruction are possible. It’s their choice and there’s no right or wrong. I also cant view their choice as a judgement of my choice.

It is upsetting however when the choice is made with inaccurate or outdated information.

The group and this blog are intended to be resources for parents and outlets for me (the blog) and all FH parents (the Facebook group).

I received an email this week from a new fh parent. One comment made was that my blog posts make it seem like Nick’s life has been chock full of doctors appointments and surgeries. The thing is, I post to the blog primarily when Nick has doctors appointments and surgeries. I don’t post much when things are just “normal” unless there is something on my mind or something going on in the group or just a limb related bit of news I want to share.

If you look at the time frame of posts you can see, I think, that Nick’s life is lived in between surgeries for massive amounts of time. Even during surgeries he played and lived and laughed! I post about the hard stuff usually. I probably do it to help myself make sense of it and so others who have been there or will be there will not feel alone.

This week I sent an apology email to a parent from the Facebook group. I made a comment that was more general than anything but it was in the comments of her post. She has a child who loves athletics and is having a hard time. I went on a rant about how athletics aren’t everything, every kid wont be Oscar Pistorius even if they have an amputation… blah… blah… blah! She never said she wanted to amputate her kids foot to make him a better athlete. My comment was pushy, know-it-all, and judgmental sounding. It wasn’t my intention but it was how it was received and that’s on me.

So I take a deep breath and a step back. I remind myself that it’s about support and caring and not doing what I think is best! I do not know it all. However if I do know more about fibular hemimelia than your child’s doctor you need to find a new doctor. I don’t know the difference between the calcaneus and the talus but the way I see it I don’t have to because Dr. Standard does. He’s got that part covered and actually knows it all.