Fused and Fancy Free

I am about to loose any street cred I had regarding knowledge of fibular hemimelia. Seriously. Maybe just stop reading now. Why come here if I don’t know basic information such as…

Nick’s ankle is fused.

I didn’t know that.

My only excuse is that I swear Dr. Standard never used the word fused to describe Nick. Confused yet? I certainly am.

Dr. S basically said Nick’s ankle is very typical for his type of fibular hemimelia. “His type” hmmm… I know it’s type 3 and I know there are subtypes but I have no idea which of those it is. I knew it was the type that needed the super ankle surgery. I knew that there were bone cuts and all kinds of things done in that surgery that I never cared to ask for details on. I have never claimed to understand that stuff. Thank goodness! 

What I do know is that I usually referred to it as on the severe side. That was the type according to me. Severe or maybe I said moderate to severe. Because he’s done so well and we had options. In a way severe sounds like the worst. Nick isn’t the worst it could be. He had bones in his foot to work with.

Anyway the fact that I had to ask Dr. Standard if Nick’s ankle is considered fused felt really dumb. I write about fh here, I support other families through email and the Facebook group. They come to me for information. Like I know what I am talking about, meanwhile I missed this bit of info about my boy. 

We have always focused more on what the result of what was being done would be. The last surgery Dr. Standard put Nick’s foot in a better position and he straightened out his tibia which had a bit of a bend still and lengthened to the point of Nick being even! Thats what that mega fixator did. That’s what I know. But I am thinking I missed something (since I didn’t think Nicks ankle was always considered fused or was that word just not used?).

It also doesn’t matter. Nick has what he has. It is what it is. His fused ankle is working for him. He has a stiff but stable joint. I knew that already. He has no pain. He walks and runs and swims. He talks about trying new things. He does not feel limited by this fused ankle. Fused sounds like a bad word at times in the fh groups… “It might have to be fused”, “Better to amputate than be fused”, and so on but it’s not a failure and not a bad word and just because I am using it to describe Nick now doesn’t actually change anything. 

Except now I can tell parents who fear fusion that it’s just fine! Nick is fused and fancy free. Nicholas will likely tell me tomorrow “I bet fused and fancy free sounded cooler in your head than it did out loud”. And I will tell him it doesn’t matter cause I don’t care about cool and since my street cred is gone already, I’ve got nothing to loose.

 

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.

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.

My first mothers day.

In 2003 I celebrated my first mothers day. I was a completely different person then. I was a newlywed and a college student. I still lived in Brooklyn. And unlike many fh moms I did not know Nicholas had a limb difference. 

It seems that 20 weeks is the time moms find out. I did not have an ultrasound till 28 weeks. I was seeing midwives and they said it wasn’t really necessary. I only did it so I could have a picture of my baby. I even told the sonographer this when they started. “I am just here to get a picture of my baby.” Sometimes I wonder if she saw his limb difference and didn’t tell me because I said that. 

I could tell from this first photo that Nicholas would be exceptionally good looking! 

It’s really fine with me because I had a relatively uneventful pregnancy and had I found out something was wrong I am sure I would have worried about things way beyond his leg. I have read about countless moms having this stress and fear. But I have also read about moms who felt such a shock because they didn’t know before birth that their baby had a limb difference. 

There is no easy way to learn this information. 

In fact I kind of learned before Nick was born but I didn’t. Because I was past my due date I had to go in every other day I think for non-stress tests and such. At one test when they were measuring the amniotic fluid the gal said “Is there something wrong with his leg” and I said “No” and that was that.

When Nick was born Steven told me after they took him from me that something was wrong. I didn’t notice when I held Nicholas for the first time. I had my magical, untouched by fear moment. I am grateful for that. I am lucky I got that. 

A little later someone brought over his footprints but said they would have them redone because they didn’t turn out right. I looked at the piece of paper and said “No, that’s how his foot is” (I think that’s what I said I am not sure of the exact wording). I hadn’t seen his foot or leg yet. The imprint was my first time. 

I thought I was a mom already when I was pregnant on my first mothers day. Now I don’t really think so. Before Nicholas was born I was not one of those women who would have said “if something goes wrong forget about me and save the baby”. I didn’t care more about his life than my own. I didn’t really know him yet. I wasn’t a mom. 

My real first mothers day in 2004, I can’t even remember. I am sure I was worried about what was to come. I am sure I was grateful for my beautiful boy and I know I wished god could take away one of my legs and give him a complete one. I know I would have done anything for him. I was a mom. 

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.

Confession: I am not a soccer mom.

Today someone posted an article 10 Most Inspirational Athletes With Prosthetic Limbs to the Fibular Hemimelia and Limb Lengthening Awareness Facebook group. These are amazing examples of what hard work and a little technology can do (or in some cases no technology). They are all very impressive.

Personally though I am more inspired by the videos of children with standard prosthesis learning to walk and living their lives. Or kids with fh whose parents chose lengthening doing the same. I guess I feel like there is an over emphasis on athletics in the limb difference world. On both sides to an extent. This is not an attack on anyone for sharing these stories with me or in our group (they’ve been arriving in my inbox for years). Some of those athletes have inspired me too. Amy Mullins in particular, but not because she is a gorgeous model and athlete… it was her TED videos that I have shared on this blog. Because it’s how she thinks about differences and how she inspires others to think differently that inspires me.

Will my child’s overcoming a limb difference be less inspiring because he’s not an athlete? I don’t think it has been so far, but so many people ask if he can play sports. It’s the first thing that’s often asked and I don’t get it! I guess I do get it to an extent, at least when it’s parents of a child with fh who ask. They want to know that if they choose lengthening their child will not have limits. But doesn’t every child have limits? Not everyone is athletic. Not every family can afford all those organized sports.  Not every kid wants to do it anyway.

Look if athletics was my first priority I suppose I would have chosen amputation for Nick. Preserving his own functioning leg was more important to me. Yesterday Nick spent 3 hours outside walking and playing! That’s the stuff I wanted for him when he was a new baby and I didn’t know what the future would hold.

Does Nicholas need to be an athlete for his treatment to be considered successful? Is he less awesome if he is not an athlete? Nick just started swimming lessons. He already knows how to swim but he is learning the strokes and such. He loves it and has already mentioned the possibility of joining our local swim team. I am excited that he wants to do this, I will support him and cheer him on, but it’s because it’s a healthy activity and it makes him happy. Not because I want him to be an athlete or to be able to say that my kid is an athlete.

What about the children who could not possibly ever climb a rock wall or kick a soccer ball? Some children’s bodies come with limits that in the physical sense can’t be overcome. Are they less important or less inspiring? I don’t think so.

What message are we sending when we put athletes on pedestals over and over again and what’s the price?

Fibular Hemimelia Research 2003

I recently found my folder of fibular hemimelia research from when Nick was a baby. I was in college and able to search the academic databases. I am greatful I had access to so many articles but it was not always easy to understand them and almost all of them pointed toward amputation. It feels like a lifetime ago and I guess it was. Nick will be 10 this year.

What one missing fibula can do.

Yesterday I posted our Save-A-Limb fundraising page. It feels early to me to start fundraising for an event in October but other teams have gotten started and I wanted to create a No Fibula No Problem team early so other families can join us and represent fibular hemimelia.

I registered Nick for the one mile walk figuring that is something our whole family can do for sure. Nick donated $10 from our family and when the donation was entered it gave the option to do it in honor of someone. I decided to ask Nick if he wanted to do this and thought he might just say no or as me who to pick. Instead he said he wanted to walk in honor of kids with fh who can not do the walk because of their leg. 

There were times during treatment when a one mile walk would not have been possible. Thankfully for most of his life I believe Nick would have been able to do this. The times when he could not stand out for him at times. He knows that there are kids who will be in fixators or casts or for some other reason wont be able to do it. He knows what it feels like to not be able to move around. This respect and empathy that he expressed in choosing walk for this purpose touched my heart. Nicholas is the kind of person I always wanted him to be. The best thing that could come out of his having fibular hemimelia is just that… Empathy, Compassion, Kindness and Love. He is strong because of what he has been though but he is also sweet because of what he has been through.

And by the way Charlotte likes to draw (actually she likes all arts and crafts) and she would like to sell her drawings for 10 cents a piece and give the money to children’s hospitals. This was her idea a few months ago with no prompting from me. She has such a big heart! Seeing Nick go through surgeries has had a positive impact on our whole family. I am so proud of my children! They want to give and help and support others. Watching them grow into these awesome people is a true gift. Maybe they would be exactly the same without fibular hemimelia in our lives… we’ll never know.

Save-A-Limb fundraising begins!

Save-A-Limb through the years. The Curley’s have been at every one so far. We are so excited for 2013! Click the collage to get to Nick’s fundraising page!

Fibular Hemimelia Family Potluck

On March 23rd the first Fibular Hemimelia Potluck was held at Hackerman Patz house in Baltimore. On of the moms from our Facebook group planned it and several families came. There was even mom with a new little baby with fh! We also enjoyed the company of some of the families who were staying at the house. Having so many kids with differences together kid of made it so that no one was different at all, if that makes sense. Of course we also had siblings of kids with limb differences and they fit in just fine too!

My favorite moment was when Nicholas and another little girl pulled out their legs to compare. It felt so great for me to see these legs, different from each other but also so similar. Most people are surprised by the sight of Nick’s leg. But not this crowd! 

Sitting around a table chatting with parents who absolutely understand what you have been through is awesome! I think there were 6 fibular hemimelia families altogether. In addition to the newborn there were two little ones, one in an external fixator and one having just had his taken off. Then there were the kids who had had a fixator or a few! 

I loved meeting families in person that I had known on line for a while. Some folks we had met a few times already and it is always a joy to see them and their children too. One family we had met at the RIAO and saw at Sinai when Nick had his last surgery and their son had his fixator put on. Now this sweet little guy was in a cast. Thats another rough adjustment in many ways but seeing him and his parents post fixator was great. It is a long road in so many ways but it’s special to see families on the journey you have been on. To see them at all stages of treatment offering each other encouragement or just the listening ear of someone who has been there was amazing. It is something we will be doing again for sure. 

 

A Functional Foot

I mentioned in my last post that Nick’s foot should not need additional surgery or it wont need the surgery I totally thought it needed. It’s in a good position or maybe as good as it gets? From here on out the goal will be to solve any issues from the outside and not with surgery. Hmm new territory for us.

Along that vein Dr. Standard gave us a script for a shoe insert. The insert will make up some of his 2cm difference, provide some cushioning, and be a shoe filler. Nick will get a shoe a few sizes bigger than his foot. I am not sure about this. I heard from another family that their son did not like the shoe filler but Gary (who we met with yesterday at the Lawall AI duPont location) assured me that he could cut the filler off if Nick does not like it. Making an insert smaller is always an option.

I brought this x-ray with me so that Gary could understand Nick’s foot and Dr. Standard had said Gary could call him so that he could explain what Nick needed.

Gary didn’t need to see this and he didn’t need to talk to Dr. Standard. He seemed very confident that he knew what Nick needed. Nick has what they call a “rocker bottom” foot. It’s that middle bump that needs attention. The insert will make it so that all the weight is not all placed there. Nick’s foot did hurt on the bottom one day last week but other wise it has not hurt at all. I am hoping that this insert keeps it that way.

Nick and I actually had a fun afternoon at AI duPont. He said it did not seem like the same place we went to when he broke his arm (we had only been in the er and he really hated it that day lol). Yesterday we had snacks in the lobby and had a great time jumping and hopping on the multi color tile floor in the hallway. Nick said the next time someone breaks a bone we should play that game because it made waiting much more fun. I didn’t bother explaining that when his arm was broken he was in no condition to hop through the hospital.

I wasn’t sure if someone was going to tell us to stop the game. It was not a particularly busy hallway and it was mostly hospital staff around and it’s a children’s hospital. Why not have children (or more accurately mother and child or as Nick would say in our case child size mother and child) laughing and hopping through the halls. I am so grateful Nick could do that. One of the best parts of our hopping game was the smiles it elicited from people walking by. No one told us to stop. I had been in a rotten mood myself and the hopping really cured it. Movement can be magical in that way. I am not a mover by nature. I am like an object at rest that wants to stay at rest and I have always loved sitting still but I can’t deny that movement has huge benefits mood wise. Nick being able to move freely is the point isn’t it?

Back to the functional foot. All the lengthening in the world is pointless without a functional foot. I am so grateful Nick has one. There is no guarantee that it wont have issues in the future. As you can see from the drawing on the image above that middle point where he bears weight could be better… maybe could be shaved down some day where Dr. Standard drew that line. His heal would be better off if it weren’t so high as you can see by the arrows. I don’t know if that can be fixed. But for now the plan is just to work with what he’s got and if all that jumping and hopping yesterday is any indication then what he has is surely enough.