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.

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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.

Today.

Now.

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.

Shoes

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.

shoes

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!

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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!

 

Why?

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!

 

 

Mission Possible

I owe you all an update on Nicholas and our ExoSym mission. The paper work has been submitted. His case manager from our insurance company now check’s in with me weekly to see if there is any progress. This week she said:

“Please don’t stop reaching out to me. You don’t have to fight for this. I will do that for you.”

Did I mention her name is Jen? Jen’s are fucking awesome.

These are words I never ever expected to hear from our insurance company. Really, you will fight to get your company to pay for this expensive brace for my son? Thank you. God bless you. You are my new BFF. Sorry old BFF’s. Jen at Cigna is a my girl now. Sorry Steven I am leaving you for Jen from Cigna. She hasn’t actually done anything yet but I love her because she is on our side.

Speaking of women on our side.  I took Nicholas to a new doctor about a week ago although this doctor is not new to us. I have known, respected and admired her for years. Her name is Dr. Reid Nichols and she is at AI duPont… basically in our back yard! She’s treated complex limb deformities for years including fibular hemimelia and at least one of her patients is part of our FH family. She’s brilliant and thinks outside the box. She will do whatever it takes. She treats all kinds of conditions so I feel like she has a really broad knowledge base as well. She is a kick ass doctor.

While we were at AI we also had Nick’s brace adjusted and met with an amazing gal from PT and who made some suggestions for the brace adjustment that blew me away. Dr. Nichols also had real time solutions for some of Nick’s issues. A small thing from the pharmacy for toe pain. Kinesio tape for his knee. The whole AI experience was awesome. To be fair I know AI. I am on the Family Advisory Council and spent some time as the parent rep on the Ethics Committee. I already loved the place and I felt totally confident in Dr. Nichols and I believe Nick did too.

I can not wait to get my boy to Washington to Hanger! I am so grateful to Dr. Nichols for being on our team. She always has been really but now she is in the trenches with us! She has actually met someone who has the ExoSym and connected with the creator of the brace. She is going to apply her whatever it takes motto to my kids situation and in turn I will do whatever it takes to make sure this brace gets to more kids who need it. My mission does not end with my son, though it surely beings there and is my current focus and forever first focus!

This mission is possible. This brace finally feels within reach for Nicholas. Hopefully my next update will include a date for our trip to Hanger.

 

Life (and limb) Lessons

This morning someone suggested I take Nicholas to Shriners when discussing the Exo Sym which we are trying to get for him. This was someone I respect and trust. Of course I gave my speech about researching Shriners when Nicholas was a baby and believing they have an orientation toward amputation. I mean I have research (research… my holy grail) to back up my assertion. My companion told me they had done the exact opposite for someone she knew, they really didn’t advocate for removing anything at all and her friend received excellent care. This was not about fibular hemimelia but that does not matter.

This reminded me of how much I have learned through being the mother of a child with a limb difference. Some of what I learned I didn’t necessarily want to learn and todays lesson was one of those…

I have learned about my own tendency to be rigid and judgmental at times. I have learned how much I take pleasure in being right. I know this does not make me a uniquely flawed human being, however I have also learned how to open my heart in these humbling moments and realize that I should not add judging myself to the list of judgments.

When doctors told us there was no right or wrong choice when we were deciding how to treat Nick’s fibular hemimelia I didn’t really believe them. I was determined to make the right choice and keep it right, make it right.

I didn’t realize that either really could have been right. I would have worked to make things right no matter what we chose, but that didn’t mean it was “right” in the larger sense. I was such an advocate for limb lengthening I made people feel bad about their choices or at least I was told that. I had parents write to me privately to share with me that they felt bad not choosing one of the expert docs I so vigorously recommended in our support group and everywhere else. I also made Nick feel like being “save a limb people” meant amputation was wrong. Talk about regrets!

And yet in spite of these regrets I don’t regret our path or the actual choices. I can take the lesson about rigidity and judgment and try to be aware when it’s happening again. I don’t know if there are any right or wrong choices anymore. I know many children who have been helped by Shriners. I know many parents who made the hard choice of amputation for their children. Their kids are happy and active now. That seems so right to me. My son is happy but I can’t say he’s active right now. We are working on changing that. We will make that right.

There is nothing more right than having options. Limb or no limb there is nothing more right than kids being as active as they can and want to be. It now seems to me to be less about how to you choose to get there so long as you get there. Not to discount the journey itself because the journey, the path, is where the lessons are after all. I am so grateful for the lessons on mine.

Faith Sans Fibula

Lately I have had some moments of fear and frustration trying to figure out how to get Nicholas this life changing brace that requires not one but two trips to Washington and still has uncertainty about whether insurance will pay for it. However I decided he would have it no matter what.  

Thirteen years ago when Steven and I were trying to decide if he should keep his leg, I took finances off the table as a decision making factor. We would make it work. I was not going to let money decide if my son could keep his leg or not. I don’t know if that sounds foolish or immature… maybe it was a matter of faith. I knew we could work that part out. I didn’t know if Sinai would be covered by insurance. I didn’t know if we would have to spend months in Baltimore, like so very many families do. I didn’t know what any of it would be like really. 

What I did know is that I could not decide to amputate my sons limb if it was functional. I am surely more open minded on that front now and I do think amputation can be the best option for many kids. Its not just a last resort. But in Nick’s case, for 12 years his leg certainly functioned as needed. Then last fall he had to start using crutches to walk because of pain and the words symes (amputation) came out of his docs mouth somewhat causally when discussing options. To be clear he didn’t think Nick was there yet and he presented other options but for me there really has been no going back from that moment.

It has made me question the viability of Nick’s foot like never before. Dr. Standard came up with a surgical plan which had about 5 parts and most of that any reader of this blog knows. Nick needed that surgery for various reasons and it was a success except for the fact that he still has pain in his foot (and knee at times). Pain that keeps him from being active. Pain that even happened when he was swimming. He was supposed to be free this summer and it has been anything but.

So again I questioned the viability of Nick’s foot. I refuse to give my son pain medication so he can be active. So he has spent a lot of this summer, way more than I would have liked off his feet and it made me think about the option we did not choose more than ever before. I still think it’s crazy that we even had to make that choice. I don’t regret the choice we made for our beautiful baby but his case of fibular hemimelia is not mild. His foot deformity was not solved with the first super ankle or subsequent corrections. He has had more than double the number of surgeries we were told he would need. That number means nothing to Nick and he has said so. Nick said he would gladly have surgery every few years to keep his foot functional. For him avoiding surgery is not part of the decision… speaking of decisions…

There is a huge difference between today and thirteen years ago. Today the choice is not mine and Stevens. Today the choice belongs to Nicholas. He wants to keep his foot. I have to make that happen. Thats what moms do.

The Exo SYM is where I have placed my hope. Since it has worked so ridiculously well for others I believe my faith is well placed. I can’t do it alone and I wont have to. As stressful as trying to figure it all out has been I have faith. Just like 13 years ago I knew if we made the choice we felt was right the rest would work out. Money will not, and will never decide if my son keeps his leg.

And so as the universe seems to provide what’s needed (or God or love or whatever you like to call the force that so many of us feel in our lives) I have had friends near and far reach out….

“Start a funding page and I’m in.”

“I might be able to help you.”

“I might have friend who can help you.”

“If I can help let me know.”

“I too will help.”

“I have a relative who may be able to help.”

“Go fund me. There are tons of us who would like to see Nick not in pain.”

“Benefit Concert?”

“I have your back.”

“Nick will have what he needs, I promise.”

Do you know what this does to fear and frustration? It neutralizes it. Whether or not these offers are needed, though I feel fairly certain they are. Whether or not they materialize for whatever reason they all create this avalanche of of kindness I feel washing over us. They remind me that as hard as it can seem and as dark as the world itself can get in moments (my Facebook friends know I have had some lately thanks to a political rant I shared), I know, know, know, know, know that Kindness is Everything, that Love Wins that we will make this happen for Nicholas. We have so much love and support behind us and beside us and holding us up. This is why my moments of frustration are moments! Just moments.

Our faith requires no fibula.