TBH… to be honest. I am usually quite easily honest so I do not use this acronym much. But today I need to.

TBH Nick is feeling down today. I know it will pass. I reminded him of this and of how “normal” it is to feel this way but in the moment it does not make it easier for him necessarily.

Sometimes things are hard for me too. I posted on my personal Facebook page yesterday that things are hard because they are, but that we are not letting it get us down, which we generally are not.

But it is hard. Nick had a big surgery. He has a rod in his leg and we will use a magnet to lengthen it 3x per day for the next 60 something days! That’s kinda crazy. He will not be full weight bearing till maybe August. Maybe. Thats a big deal. He is still on round the clock pain meds. Thankfully at a lower dose but that means more frequent doses so we are waking up at night more. I’ve also added doing laps around the house to his home physical therapy because his leg is really weak. This is normal (I got to ask Dr. Herzenberg about that on the web chat last night. He’s not Nick’s doc but he is brilliant, kind, pretty funny and a fibular hemimeila expert like Dr. Standard). I want to be doing everything we can to help Nicholas gain strength. He is feeling bored and frustrated today at not being able to move his leg. He’s not in the mood to talk about it. He feels like doing whatever it is he can’t do. His emotional health through all this requires attention too and sometimes he just needs space. I get that.

TBH this lengthening will be harder than the others in an important way. Yes it is not an external fixator and yes we are so flipping grateful for that but seriously. Seriously, that does not mean this will be easy. Easier in some ways, yes, but not all ways. This is a femur lengthening which Nick has never done before. Nick’s hip and knee will not like this lengthening. They will want to contract and he will have to work so hard to keep them from doing that. There will be pain. Growing two inches or so in 67 days will do that. We will do everything we can to manage it but that does not mean this is easy.

We are positive people. We are super grateful not to have pin sites. We are super grateful that everything has gone as well as it has. However we still need to be able to say this is hard. I need to be able to say it. Hard does not mean something is wrong. Hard does not even mean bad.

TBH I think we rock the hard times like it’s nobody’s business. I will never forget that. Nicholas has come so far. This journey has strengthened us all. We know how precious every day existence doing what you want is. Every day existence is precious in and of itself of course!!!

There are a multitude of reasons why some people can not live each day doing what they want. Many are far harder seeming than fibular hemimelia. Some things can be overcome and some cannot. Some people keep going even without a light at the end of the tunnel or without the light at the end that they might have originally hoped for. They can become the light.

If fibular hemiemila is the hardest thing Nicholas ever has to go through I would still count him a very fortunate person! I know I am a amazingly fortunate mom. Part of me will always want to make things easier for him but you can’t take away the hard stuff without taking away the light too. TBH I would never want to do that.

3 thoughts on “TBH”

  1. Oh, I’m sorry it’s hard. and I’m glad you haven’t taken on the burden of syrupy cheer. It is what it is, as our sage says. And Nick’s come a long way. and oh, my goodness 2 inches in 2 months. And through it all, we love you. We’re standing by you, behind you, around you, even when we’re far away, because we love you all. So keep talking to us. And keep telling Nick, I’m so proud and I’m clapping and clapping for him! Let us know what you need if we’re not good at hearing! love you, so much. so proud.


    1. Thank you Ann! Nick loved yesterdays comments from you and Mariale! I really worry that people don’t understand that it is ok that it is hard. I am no sure if I am making that point accurately. I love that Nicholas has this option. His down mood didn’t last long at all. Love you too!!!!


  2. Its ok to be honest with your self and aknowledge that it is Hard!. But i come to realize that life with or without FH is hard. Kids need to find their own way of making it trough the hard spots. Ive noticed that it is now a way of life that parents try to do EVERYTHING for their kids, so it would be easy on them. And in the long run it turns out to be a bad idea, because they grew up thinking that everything will be solved by someone else and Its not their responsability.
    With that said, you, your Family and Nick are one of the few exceptions to this rule.
    Nick knows he has to work hard for something everyone else consider a done deal, a pair of equally long legs. Its not going to be easy But you have thought him right and with a smile on his face he Take up the chalange to do so.
    It is always going to be hard, in one way or another But to be strong to face this and go past it is what makes all of you a remarcable family
    Love you, and this too shall pass


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