Phase One Done

We are on the return journey. Delaware here we come. Here’s a bit of what we did in Washington:

But wait. We came for a reason. It wasn’t poke hunting. It wasn’t lunch on Gig Harbor. It wasn’t the wonderful time we had with our Seattle friends and kind hosts!


We really had a wonderful trip but the wonder is not why we were here. Here is why we were here:

On Monday Ryan casted Nick to make a mold of Nick’s leg and foot. Just meeting Ryan Blanck was pretty cool. It was maybe 4 years ago that I read about him and the IDEO. I didn’t imagine that Nick would be getting the device at age 13! When I first read about it I thought he would need it as an adult. I am so grateful it is available to civilians now!!!

We also had the chance to tour Hanger and it was amazing. Everything is made on site. It is remarkable. The gym is the center of the facility and there were people working out with prosthetics and ExoSym’s. It was so cool to see people using the device! Just being there and feeling all the hope that had been building and realizing Nick will have this device was emotional for me and Nick talking about his hopes for the ExoSym made me emotional as well. He is so ready to not have his leg limiting him!

I also met Pam and Koreen who I had been emailing with for the last two months or so and to realize that they are the office staff and doing everything themselves, was humbling and made me wish I had been more patient and I said so.

Trying the test device on Tuesday was an interesting process. As Nick stood and walked Ryan made adjustments until Nick was pain free when walking. This test device worked at only 40% of what the actual ExoSym will and already Nick felt a huge difference. The while process was quite technological and it was fun to see Ryan thinking and working things out, trying this and that and watching Nick move and understanding the way Nick’s leg currently works and what it will be able to do once he has the device.

I am feeling super sleepy now so this post will likely get an edit or two eventually. I just can’t fully express how grateful I am for this entire experience. I am so grateful that Nick will get this device. The insurance part is not worked out yet but it will be. I feel so sure of that. I am beyond grateful to Jen and her family for welcoming us into their home. It made it feel like a very different trip I am sure. It was wonderful to have someone to go home to and connect with. Jen’s presence was such a comfort to me and added another level of enjoyment to the trip.

Sleepy me is just basking in the gratitude as Nick fights for a Pokemon gym. Just another success to add to our list from our amazing SEA GIG adventure!

Up In The Air

We are on our way. Nicholas is next to me watching a movie. I slept some. He did not. It almost feels like a quite moment to reflect except the air system sounds to me like we are inside a tornado. So I write.

I wanted to share the heart of the Case for the Brace for me. Nick really nailed this when he called the brace “reverse amputation”. Of course amputation can not be reversed in any real way but he feels it is that because that was on his radar. To me it still fits because what the brace does it take the high tech prosthesis principles and apply them to a brace.

Essentially it let’s Nicholas have a prosthesis and have his foot.

If you know the journey he has been on that is everything.

It’s like both options in one. It’s the embodiment of the “there’s no right or wrong choice”,  line we heard but didn’t feel.

I don’t know if this option could eliminate surgery for some kids but I have to wonder. Nick has done all the lengthening he will need so I feel like he is very ready for this. He is not kid size and I am fairly certain that helps too since I have not heard of anyone younger than a teen having it yet.

His amazing attitude helps as well. He is just so positive and that makes me so hopeful. Even though we are literally up in the air I don’t feel like the outcome of this journey is. I feel very grounded and positive today. Maybe taking steps in what feels like the right direction alone does that.

Thank you to all our friends who helped us get to the point where we could actually be on a plane heading to Hanger in Gig Harbor Washington! Thank you Jen and family for sheltering us when we arrive. Thank you Reid Boyce Nichols for your support. Thank you friends for the offer’s to help with the kids at home. Thank you all for your support and encouragement.


This post was written in the air (not sure what time… or time zone) and posted from the ground. Nick is already sound asleep and we have had a really lovely day and evening in Seattle.

The Case for the Brace

So Jen from Cigna helped the case for the brace move up to Tina from Cigna who will bring it up to Dawn and after Dawn it’s just Amtrak left to work on…. This sounds confounding but it is progress!

The reason at the moment for all this is that the code for the brace ends in 999. 999 means miscellaneous and any 999 code over $500 must go through higher levels for approval and have additional supporting documentation.

It does seem fairly reasonable to want documentation before shelling out over $10,000. I did point out to Tina that this is way less than the cost of another surgery. $10,000 would not even likely cover one day’s hospital stay post op.

In the mean time while we wait for approval Nick and I are going to Hanger! We fly into Seattle on Sunday, visit Hanger Monday and Tuesday and fly home after midnight. This trip is just for Nick to get fitted. This is the first step and we will have to fly back and stay for a week when the brace is created but this gives insurance more time to authorize it and Nick is just dying to get moving on this.

We are blessed beyond measure to be welcomed by a friend in Seattle. Remember how I wrote that Jen’s are awesome… Well of course her name is Jen! I have only met her in person one time but she is one of the kindest souls and I really can’t express how grateful I feel. It reminds me that we have support and things work out.

This is happening.

Instructions for when you forget you are a bad ass:

  1. Call people who know who you are so they can remind you.
  2. Help others!
  3. Post of Facebook. I know this may seem counterintuitive but I will explain.
  4. Do things you enjoy and can get lost in.
  5. Make a to do list containing at least 3 things you have already done so you can check them off at the start.

This is not meant to be an exhaustive list but these are a few of the things that have helped me recently. I have done other things like go to therapy, try to get more sleep (maybe the most difficult considering my 3am wake up routine), try not to drink whole bottles of wine on my own and maybe most important try to stay in the moment.

Just today.

Just now.

Just right this second. 

Right this second I can inhale deeply and exhale slowly and repeat. Right this minute I can call a friend or family member and express how I am feeling and ask for help or just ask him or her to listen. There are people who are almost always able to bring me back to what is real and true.

“A friend is someone who knows the song in your heart, and can sing it back to you when you have forgotten the words” Donna Roberts

I can’t help but not want to reach out to the same peeps over and over and since writing helps me I sometimes post my most personal stuff to Facebook.

I know many advise against this but I can say with confidence I have never regretted sharing there. Never. There I have a community of people who know just the right thing to write. I can hear their voices in my head as I read their responses.

This week I was feeling overwhelmed and ill equipped to handle what life was handing me or more accurately what I am worried life is handing me since at this moment I find myself somewhat trapped in the vortex of the unknown. I was trapped and felt like I was fighting so hard to stay afloat in my life that my head was going underwater but no one knew because I was keeping up my calm and capable facade.

That’s not true though. Someone knew for sure I was going under and that someone was my therapist. This week she told me she thought I was a couple steps away from a panic attack. I am fairly sure I have never before had a panic attack and I didn’t want to start now. She told me I needed to stay in the moment and think of ways to calm down. I just so happened to have registered for a T’ai Chi Chih class which started this week. It felt like a fool proof meditation and movement combo. I am pretty hopeful that starting a regular practice will help.

I also went to Batik class last night at Highlands Art Garage with Linda Celestian. Linda is a friend which made me much more inclined to try this for the first time a few months ago and again last night. I love Batik! Here is my unfinished product which will be boiled to get the wax off (where it is yellowish it will be white when completed). It’s not perfect but I enjoyed the process and I am totally happy with the outcome so far. Life isn’t about perfect and for me art is a great way to practice that belief in real time and with some context.


Making a to do list that includes things you have already done is just fun. I just love to check off things and I know I am not the only one. Why not start your list feeling accomplished. Here are some I use:

  1. Drink Coffee
  2. Brush Teeth
  3. Create To Do List

Helping others is a no brainer! I have tried to take opportunities that naturally arise to be of use and service to others. My heart feels good when I am helping. The world needs more helpers and I want to be counted as one.

“When I was a boy and I would see scary things in the news, my mother would say to me, “Look for the helpers. You will always find people who are helping.” To this day, especially in times of “disaster,” I remember my mother’s words and I am always comforted by realizing that there are still so many helpers – so many caring people in this world.” Fred Rogers

We don’t need to wait for disaster to look for or be helpers.



This second.

We can be helpers.

We can be helpers even when we feel our own distress. Sometimes when I am feeling the most tender myself is when I can most readily see the tenderness in others.

For me this week I needed to be reminded of my strength. I needed to be reminded to stop letting my imagination go crazy. I needed to be reminded to breath and be in the moment. Here is one example of getting what I needed from someone who truly knows me and knew I needed reminding. My current anxiety isn’t all about Fibular Hemimelia but this was the first kick ass reminder I received:

Also, remember how far you’ve come how much you’ve learned! Your so far away from the young girl with an enormous journey in front of her with no one to lead the way! YOU created the effin road that made the journey easier for you, Nick and so many others! I’m biased but I know you got this! Take a minute refuel and kick some ass! Whether with insurance or with the help of all those who love and support you, Nick and the entire FH world! Xoxo Meg

I hope with all my heart that you all have a “Meg” and a community of friends to remind you that you are a bad ass, that you’ve got this and that you are not alone.


As a mom of a child with fibular hemimelia I have had to do some hard things. I have left my son in surgery 15 times. I have watched as physical therapists make him walk post op and listened while be begged me to make them stop. I held him as he screamed in pain when a nurse denied him pain medicine. I have taken off bandages as he screamed. I have rubbed pin sites which are essentially like open wounds with wires sticking out as he begged me to stop. I have raged at the fact that he still has pain despite all we have done. ALL HE HAS DONE! My son is brave and positive and so fucking strong!!!! (The f-bomb is my word of the month I think so please if you mind it try not to).

So what is my point in sharing all that… My point is I have dealt with all of that and pushed on and pressed through. Getting through that made it seem so hard to believe that what could bowl me over in pain was a trip to the shoe store.

Other parents in our support group have expressed the same. Something about not being able to get your kid shoes or having to tell them they can’t have what they want because we can’t put a lift on it or get an AFO in it. There is something about having them not even able to wear shoes.

When Nick was a baby I put him in a ton of “feetie outifits” or rompers or whatever you call them because socks and shoes were both impossible to keep on.

Finally around age one we had to get him shoes so that he could walk outside. You just can’t walk outside in socks or feeties forever. Nick’s Curley Grandma and Grandpa financed this first pair. I am sure lots of grandparents gift children their first pair of shoes but this was more significant and sweet and also so like them to just step up and help and give.


Believe it or not getting these shoes was a triumph but also a tearful experience. Nick had to have a mould of his leg done. Holding babies still for any reason is akin to torture. So we both cried I am sure and at this first shoe appointment we met a FH family! How crazy is that!

This however was not the first or last time tears were shed over shoes. Nick’s never cried about shoes since but I have. I believe it’s sometimes the regular every day things that get to us. I can turn into mama bear and fight for my son and be strong through his pain but for goodness sake getting shoes used to bowl me over.

Shoes are an every day reminder. The ability to wear shoes and choose shoes is something that is so taken for granted. Because of this I have not really been into shoes for any of my kids. Usually they only have at most 2 pairs because Nick only ever has one.

I will say the shoe situation has been much improved for Nick and he wears a brace that allows him to wear two that are the same size. I let him buy $150 Jordan’s to make up for all the years he had no choice. He does not know thats why I do this. This drama is entirely mine.

So to the parents who are struggling with this, you are not alone. I know some kids are upset about shoes and I know it’s easier generally to be a boy in this situation. I don’t have all the answers on this but I can tell you that feeling bad for feeling bad sucks and doesn’t help. So many of us have been there. We buck up for the tough moments we expect but no one expects shoes to hit ones heart so hard.

Maybe shoes are just a metaphor for what we expected for our kids. It’s ok also say fibular hemimelia sucks at times! I have felt that many times. 99% of the time I wouldn’t change my boy for anything but the 1% when I want to is because I do not want him to suffer! I don’t want him to suffer little things or big things and sometimes shoes or lack of is an in our faces reminder that we don’t have control over that. No parent does but as I have written in the past fibular hemimelia give us some of the biggest parenting lessons much earlier than most.

Still it gets better! Here is Nick’s most recent pair. I don’t know that he will have as many options once he gets an ExoSym but I am not going to stress that now. All the beautiful shoes in the world are meaningless while he still has pain. He so loves these sneakers though!



A Strange Thing

A Strange Thing

I am sharing the above video because the song A Strange Thing is a favorite and popped up unexpectedly in my life this week. I thought it worth sharing.

Christopher had to have blood work done on Friday. He has a neuromuscular thing going on and we don’t know what it so we are investigating. Chris was so so brave during the blood draw. He barely winced! Later at dinner I was telling everyone how amazing he was. His responses was:

“Mom all I did was think of that song you used to play everyday about the needle.”

I was blown away. A Strange Thing was really my calm down song. On mornings driving to school or anywhere really. It set a great tone for day. I’ve been playing it for a couple of years but I wondered if it really stood out to him last spring when Nick had surgery. I am not sure but he is not the first Curley kid to notice the song. Bess used to request the needle song on the way to preschool.

Now I know I am not as big a music fan as some people but Flagship Romance’s music just speaks to me. I have had the pleasure of seeing them live a few times and I think I need to bring the kids the next chance I get. I am so grateful that my little guy had Shawn and Jordan’s words to ease his mind in a hard moment. Being able to help himself is a powerful thing. Christopher is only 8 years old! I think he is remarkable. This is only one of the ways I think he is remarkable though!

Chris needs another blood draw today so maybe I will sing to him. Maybe not. I don’t want to mess with what works. And my voice, to be honest the kids at times have had to ask me to please stop singing. Sometimes I do and sometimes I don’t because for me it’s about the feeling I get when singing and not whether or not someone else can enjoy hearing me. Poor kids!



Do you ever wonder why you do what you do? Why do you feel compelled to do some things and repelled by others. I wonder these things more often than most I suspect. As a social work intern I do all kinds of things and get to watch others do things and although this seems weirdly vague it comes back to fibular hemimelia pretty handily.

For one, why do I write on this blog? Why do I feel compelled to speak our truth? Why do I share? One reason is venting and connecting for sure but another, a deep intent is to help others get what they need. I knew early on that fibular hemimelia parents needed support because I am one and I needed support.

Over time though it became clear that it’s not just fibular hemimelia families that need support. All parents do. Then I realized it’s not just parents that need support. It’s all people. It’s all human beings. It’s all beings.

In terms of parenting I feel like the rise of mommy bloggers and their success illustrates this well but sometimes they veer too far into the complaining about how hard parenting is zone and that can be annoying. Especially as a mom that handles more than the usual mom stuff and manages to mostly not complain. That sounds like judgement and maybe it is but I can’t help it. Yes parenting is hard but if we focus on the hard we can really miss the joy. Not that I am against venting as a whole! And what I realized after hitting publish is that everyone has something! Something weighing on their heart. Something they are working out or wondering about. Maybe their kids don’t have an obvious difference. Maybe they are caring for an aging parent. Maybe they have work stress. Who knows. What I do know is that judgment is as wrong in this place as it is anywhere else. Judging others isn’t going to make me feel better about what is happening in my life or make it less stressful.

Connection is such a big thing for me and I know it is for others too. There is nothing like someone saying “Me too!!!!” when I share my feelings. It totally makes my heart feel like it’s going to overflow. I know that is not unique. We all want to be understood.

The other reason and original intent of this blog was to help other parents find what they need. To help them know there are options. To help them understand that they can ask questions of their child’s doctor. They can ask and tell! They are the expert on their child.

The connection/venting reason is big lately though. Taking Nick to a new doctor has been interesting. Seeing someone else’s take and a fresh set of eyes is cool and having a partner in the ExoSym adventure is awesome. Dr. Nichols was trained at RIAO so it’s not a big jump and Dr. Standard totally supports families partnering with their local docs. Dr. Nichols is special though. She is a stand alone expert at this point. I would not have known how good she was had I not taken Nick to her and seen her in action. She also happened to help me when I needed it most. Christopher needed a consult with a neurologist and Dr. Nichols helped make that happen with the right person. We are still figuring things out and it may be that he just needs some pt but we just don’t know. I hate not knowing and I hate not sharing and that is why I am writing it here. I need to tell the truth. Life is crazy and getting crazier but I will leave additional crazy for another post.

Maybe the “why” does not matter. Connection, venting, information sharing… what ever the reason I feel compelled to do this. I hope it feels worth reading!