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.

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.

Please don’t call me normal.

I didn’t always think I was special. The first time I thought I might be a special mom was the first time I declared I was like any other mom. I was attending Saint Francis College and was sitting in a lounge area of the ladies room. I had been attempting to pump breast milk and feeling sad and frustrated because pumping in the rest room really wasn’t working. Another student must have noticed my upset because she struck up a conversation. She thought what I was trying to do was awesome. I said I was just doing what was best for my kid, which is what any mom would do.

Her response was that no, that was not what any mom would do. She knew plenty of moms who didn’t put their kids needs first on a routine basis. In my mind putting Nick first was the easy part. She made me feel proud of the mother I was.

I can’t remember if we had even gotten to the topic of fibular hemimelia. This interaction happened in September of 2003 so I am not even sure Nicholas had seen the orthopedic doc and gotten a diagnosis yet. Recently I have read a few posts by moms of kids with special needs or differences in which they reject being called a special mom. They claim normalcy like a badge of honor. If that label is what they need then I would never take that from them however I suspect there are many other mothers that get through more than a few sleepless nights thinking they are anything but normal. They are in fact bad-ass-rock-star-moms and I couldn’t agree more.

I know there are moms that feel like god or the universe chose them to be mother to a special child. That is a beautiful thing and a beautiful way to forge meaning. Things happen that we wouldn’t choose. Some of us rise to the occasion, some do not. For me, to take away the meaning making we are left only with the struggle.

There are also moms (and dads… sorry dads I never write about you) that choose children with differences or medical conditions to adopt. Maybe they like the label normal but I couldn’t ever give it to them.

Normal just isn’t a label I would take for me or for Nick either. I used to worry about people treating him normal, not anymore. Fair, right and good treatment is not always the same treatment as others. In my mind claiming normalcy does not honor the journey we have been on. I can’t say that every other mother would do everything I have. How could I believe that Nick has gone on this journey to be normal. What is wrong with special?

When I first read the “I am not special” type of posts I felt a little bad. I wondered did I have a big ego. Was I wrong to think I was special and Nicholas was special… and what about all our fh friends and the moms with kids with more serious and life threatening conditions. The truth is I think they are way more bad-ass-rock-star than I am. This is not an ego trip.

To be honest I wouldn’t enjoy someone telling me I am just like every other mom. I know I am like many, many moms who put their kids first and do whatever they have to do (and actually have to do some things most moms could never ever imagine) but the fact that other moms are special too does not make me less special. It just means I am in good company.

Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, ‘Who am I to be brilliant, gorgeous, talented, fabulous?’ Actually, who are you not to be? You are a child of God. Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people won’t feel insecure around you. We are all meant to shine, as children do. We were born to make manifest the glory of God that is within us. It’s not just in some of us; it’s in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others.” Marianne Williamson

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!!!!

 

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.

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! 

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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. 

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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.