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.

3 thoughts on “Faith Sans Fibula”

  1. I’m with you. I spent 4 hours this weekend filling out forms and Paul used our home fax machine to send them to Gig Harbor.
    I called them in Friday. To my dismay I found out they just did a National media thing and their office person is overwhelmed with responses.
    Ryan is going on vacation this week. Hopefully the forms I faxed went through and he will review them on Monday am so I get his approval.
    I emailed Dr. Nelson and he responded that he is out it town for another week but he instructed some person I never heard of to get the paperwork ready for me and he’ll sign it on Aug 22.
    The money, and getting a shoe to fit over it is such an issue.
    I keep reminding myself it’s one step at a time.
    Paul is on board, so is Dr.Nelson, and I think Ryan is so slow progress is happening.
    I hope it’s worth the money.

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  2. Jen, this is one of your most powerful pieces. Not only does it reflect the woman, mom, kid, family, that I love but it’s so profoundly what people need to hear. I continue to believe this is one of your greatest gifts, not just to Nick but to all the families who struggle with hard decisions about their beautiful, perfect children. Keep writing! I love you and I’m so very proud of you. (And Nick. And Steven. And Charlotte. And Chris. And Bess.)

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