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.

Impatient, Emotional and Hopeful

It’s all about the feelings today and I am feeling them all. Nicholas is only feeling excited. He is ready to pack his bags to head to Washington for this:

http://www.hangerclinic.com/bracing-support/adult-le/Pages/Limb-Salvage-ExoSym.aspx

Here is some more info on it’s creator and why we have to go to Washington:

http://www.orthospinenews.com/military-ideo-to-be-manufactured-for-civilian-population/

“The inventor waived his right to the patent, gave it to the military. That’s the type of person he is.” Ryan smiles at the mention of it. “Even though I developed it, I’m involved with the purchasing of the very device that I developed, so that’s how the patent works, yeah.” But his role in this next phase of the IDEO, in both the military and civilian worlds is crucial. Because right now only Ryan knows how to custom-tailor each IDEO. He takes into account a patient’s specific injuries and strengths and then specially designs and tweaks everything, the carbon-fiber mold and struts, adjusting the thickness, stiffness, even the feel of it. “Each one of them is like a fingerprint.”

The original goal of this brace was to reduce pain and restore mobility. Those two things happen to be exactly what my son needs now. Right now. Yesterday actually. 

At the moment we are waiting on paperwork from Sinai to get to Hanger and then from Hanger to our insurance company. Our insurance company has been surprisingly helpful and seems to want Nicholas to have this. Hanger seems to be in plan for us and since we have met the in plan out of pocket maximum for the year it could be covered. “Could be” because it is durable medical equipment which is covered kinda different.

So I am impatient to get the ball rolling, emotional imaging what this could do for Nicholas and hopeful that we will make it happen. This is my new mission. This is the next right thing. We just need to start.

francisofassisi121023

 

“In times of war we have huge medical breakthroughs. I think this will be one of them. They’re manufacturing miracles there at BAMC.”

Since writing this post years ago a boy with fibular hemimelia was able to get an IDEO and it has changed his life. I set videos of Nick walking to Ryan who is now at Hanger in Seattle. I don’t know if we will pursue it or if we will be able to but I am wondering if this might be the long term answer we need! I also don’t know if our insurance will pay for it but if we think it is the answer will find a way.

No Fibula No Problem

People have always said that medical advancements often or mostly come from wartime. I’ve always been a grateful citizen in terms of appreciating the sacrifice the members of the armed forces and their families make! Reading about friends whose husbands deployment has turned them into single parents is heart breaking and inspiring at the same time. Never mind what these soldiers do.

Now the medical advancement factor is hitting so close to home. You can read a little about it below and check out the blog post but Time has a great article from last week’s issue. You cant read it on line unless you are a subscriber. I would bet your local library has the article.

Honestly it made me cry. The way they described a soldiers leg having a stiff ankle and lacking muscle sounded a lot like Nicks. Joe at Lawall in Harrisburg told me when he…

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The Next Right Thing

It is hard to believe we are mid summer or past mid summer! Things have been a little crazy. Sometimes you don’t get the summer you expect and that’s life.

I neglected to mention in my previous posts that Nicholas is not the only one on crutches. On July 4th Steven got hurt at our communities annual Games on the Green. It happened during a game of tug of war. He was one of three men injured.

Steven had a fracture in his tibia and ligament damage that we are grateful is not a tear. He will heal but he has to take it easy. Steven is not good at that. Within days of his injury he was up loading the dish washer and doing laundry. He can’t be still for too long. Luckily Nicholas takes after me and does not have this issue. Imagine all his recoveries if he had a hard time sitting still!

On to Nicholas….

I have the most amazing chiropractor in the universe. We shall call her Dr. T. She is a gifted person in many ways and I trust her implicitly. Nick happens to be friends with her husband. He is one of those people who cares and connects and was one of the first people to text me when Nick was in the hospital for this last surgery to see how he was. We love him. We shall call him Mr. J. I don’t like writing about people outside the FH world without permission so they will be “anonymous-ish” but only to those not from our community I suspect!

Anyway Mr. J and I  were talking about Nick before my last appointment and I expressed my sadness in not knowing where we go from here and Dr. T walked in and said “bring him in, there are things we can try” and a flicker of hope sparked in my heart.

On Monday Nick had myofascial release and cold laser therapy. These are things I had never heard of but I trusted Dr. T.’s suggestion. Nick had no pain during treatment and was really happy I think to be doing something! In the days since he said his pain has been less and he has even been misplacing his crutches around the house because he does not always use them. He’s been doing more. We all feel hopeful.

A wise friend shared something with me that her children’s pediatrician shared with her that applies to just about everything…”One of two things will happen. Either it will get worse or it will get better”. If it gets better we great, if not we deal with it.Only time will tell which it will be for Nick’s foot. All we can do is whatever the next right thing is based on where we are.

Nicholas wants to keep his foot as long as he possibly can. I want to support his choice as much as I possibly can. This is only hard for me because pain stopping him from living his life is not an acceptable outcome and it seems to me that to him at times it is an outcome he would accept to have his foot. As a parent I have to honor his choice. What a journey!

So next we will try a new brace based on Nick’s ideas and whatever the brace guy can finagle. We are not giving up. We are never really giving up. Just moving on to the next right thing, whatever that may be.

The Stream of Destiny

We are all little pebbles in the stream of destiny. To change destiny we have to gain mass (other pebbles joining us) to move the stream in a different direction. An example is Martin Luther King, he wanted to change destiny for people of color so he started to gain mass which changed the stream of destiny. Donald Trump is trying to gain mass for the opposite purpose but people are holding him back in the stream because he is doing the wrong thing.

This is the philosophy of Nicholas recounted as well as my memory will allow from a conversation we had a week or so ago. Nick also noted that he and I gained mass in the stream of destiny through my sharing his story and creating the Fibular Hemimelia and Limb Lengthening Awareness Facebook Group. Nicholas is really proud of the positive impact he has created. One pebble… many ripples in the stream and quite a bit of mass as the group has grown so much! In fact he got to hear first hand that a family at RIAO today was there because of the group. It’s a beautiful thing!

Nicholas had a good visit with Dr. Standard. His foot is healed however he is still having pain. We are working on coming up with non surgical ways to manage it for now. Nick has brace augmentation ideas of his own. I am not sure that we will be able to do it. I am not sure about a lot of things except I know that Nicholas will have a good outcome. However we have to get him there he will. Dr. Standard will do whatever it takes and so will we.

We spent time with several fibular hemimelia families today which I love! Seeing other children at various points in the journey reminded me of Nick at those ages and stages. Now my boy is growing into a young man and somehow amazes me more and more as he does so.  He is so brave and strong. He is beautiful and kind. I am so fortunate to be his mom and in the stream of destiny beside him.

Break

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The word of the day is BREAK. Today is the first official day of summer break however Nick’s began on Monday at a RIAO appointment when we learned, as I suspected that he had a broken bone in his foot. In case the film is not clear enough Dr. Standards handy drawing illustrates it quite clearly.

Nick’s above break happened while playing “basketball” in the pool with Steven. I say “basketball” because it was some kind of crazy wrestle basketball game in which Nick smashed his foot into the side or bottom of the pool.

The swelling after and constant pain let me know it was broken. I was a little overzealous in my excitement at RIAO when learned I was correct about this and it appeared to some that I was happy Nick had a broken bone. Dr. Standard offered a quick save and stated that a break was better than a sprain because it will heal faster. Dr. Standard is such a hero and I was honestly just happy to be right. I appreciate the little things in these moments. That makes me a hero too.

Of course the real hero is always Nick who takes it all in stride. 

So Nick is in another cast. Another cast. Family Cast Tally Total for 2016: 6, I think. I am actually not even sure between Nick and Charlotte how many they have had.

In other foot news Nick’s foot was not happy about weight bearing prior to the new break. I am concerned about that but trying to just be in the moment, let him heal form this break and then see. He did get an AFO recently but he needs it adjusted which we can’t do till this break is healed. It would just hurt too much.

The bottom line is this summer break which we had hoped would be a stage of freedom from foot stuff is not panning out that way. I am still hopeful that this will heal and maybe Nick’s whole foot will enjoy the break from weight bearing and feel better about weight bearing when this cast is removed. Anything is possible. Only time will tell.