Be Encouraged

Be Encouraged!

People mostly come here looking for advice. Of course some kind friends and family like to check in on Nicholas but thats not where all the action comes from. It’s those parents of new born babies or expectant parents who heard something they never wished to hear.

I wanted to share the above which I saw on Facebook today because it is solid advice for anyone but when you are facing an unknown challenge, when you know you will have to choose a treatment for your child when none sounds particularly easy, when you are hurting it is easy to loose sight of the big picture.

The big picture is that life is too short to dwell in the details. I had planned on a post recapping the last year in terms of fibular hemimelia treatment but that serves no earthly purpose. If you want a recap you can look back and read old posts.

What I can say is that this was our hardest year. 2012 will not be missed. I wish I had spent more time looking past the hard moments to the finish line. It felt too far sometimes. There is nothing worse that seeing your child in pain and not being able to do something or having that something not work or just waiting for something to work. In those moments I would try to still myself and hold Nick and be at peace. Sounds crazy yes but hugging him full of tension would not have helped. Thankfully there were not too many moments like that but it is easy to get lost there.

Right now Nick is doing great. Great enough to be playing football outside with a friend and to run to another friends house to play (by himself!!!). These are the details I could stay in for a while but truth is even these are not the place to be. Nick will have another surgery this month to put a small plate in his knee and take the big plate out of his tibia (hopefully). I can’t hang my hat on my kid playing football but I can focus on the fact that through it all he is still my loving and happy boy. Through it all he has grown (oh my goodness has he grown) into an amazing boy.

The big picture for me includes a little picture I’ve had in my mind since we chose the lengthening road. Nick getting out of bed in the morning with his own two feet hitting the floor. Nothing more.

I know he would be ok without his leg. I love reading about all the kids who are doing amazing whatever treatment they have but for me that little picture is important. It’s his leg and he worked really hard in 2012 to keep it that way. His legs are still nearly even!

So please be encouraged. Even if you go back and read about how hard 2012 was in some ways it may turn out to have been a great year looking back. It’s too soon to tell. We’re still too close to it. I think Nick and I both learned that we are even tougher than we thought. Though he will be the first to say he’s actually soft on the inside. Of course I am too (we are so much alike) but maybe that softness is actually where the strength comes from.

8 thoughts on “Be Encouraged”

  1. Thanks – I really needed to read this. My daughter was born with bilateral FH last July and we go for our first consult next week. I often find myself dwelling on what is to come instead of enjoying who she is becoming and I hate that I do that. My 2013 resolution is to work on acceptance of the challenge God has given us and to just enjoy my beautiful daughter.


    1. Enjoying your baby girl is the most important thing. Good things are to come as well! Its harder in the beginning and scary but it will get easier. Are you on the Fibular Hemimelia and Limb Lengthening Awareness group or FH Support? Those are really helpful and supportive communities. If I can help in any way I am always here!


      1. Thanks Jen. I love reading your blog and seeing how Nick is doing. We did not know anything until Eloise was born and the unknown still scares me. I am looking forward to our appt next week because I feel like things will be a little less scary (at least for the moment) once we know what surgeries she will need and we have a tentative roadmap. In the hours I spent researching I did find the FH and Limb Lengthening Awareness group and joined. I am going to look up FH Support and join also. The thing that has helped me the most is seeing kids with FH walking, running, happy and able to do most anything they want.


      2. Seeing kids living their lives freely is the best thing. Eloise will do that too! There really isn’t anything we were told Nick couldn’t do but some things I have avoided out of my own fear. Like ice skating. But then again I am bad at it myself so I would be useless to help him. Other kids with fh have done it plenty. It is helpful to have a roadmap. Just mentally to be able to say ok this is how we are getting from a to b etc.


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