“Perhaps Mommy you love me more than I love you”.  Nicholas said to me last night to which I respond “In fact I think you are right”.  I can’t imagine that there is any love greater than the love I have for my children.  Nicholas is particularly emotional, just like me.  We both bawled our eyes out while watching Ice Age.   We are very much in tune to each other.  I cant be in any kind of mood without him noticing.  Like earlier today when he said “Mom are you getting frustrated with us”.  I think I know his feelings just as well but sometimes he surprises me.

Nicholas has been in his current fixator for almost four months.  I can’t believe he is more than half way through this lengthening.  The rhythm and routine of days goes by and we don’t always remember what a big deal this really is. He does have this hunk of metal attached to his leg every moment of every day.  I think we are so focused on being positive that we forget that this is hard for him even if he seems fine.  A few weeks ago he told Dr. Standard that his knee hurt sometimes and he had not told me that before.  Later at home I told him that if his leg hurt he needed to tell me so I could help him. His response was “Mommy it only hurts sometimes and you distract me with your love and hugs”.  I was speechless.

You would never think he was in pain at all the way he moves constantly.  We went to the local pool with family today and he was in the pool for over 2 hours and I don’t think anyone would know there was a fixator on his leg while it was under water.  When we got there I asked Nicholas if he wanted to let the life guard  know about his fixator. So he went right over and said “I have an external fixator.  It’s for leg lengthening.”

Nicholas wanted to take his cover off.  We had never been to a public pool while he was in his fixator and I was worried about peoples reactions.  I told him that if he took his cover off people might ask him more questions about his fixator but he was fine with that. He just wanted to swim the same way he swims at home. It was no big deal to him. He did not even notice the few people who stared at his leg or the father that took his toddler daughter away from where we were as soon as he saw the fixator.  I cant say for sure if it was on purpose but they never came near us again.

Later in the evening Nicholas started complaining that the big toe on his left foot hurt.  He was literally limping up the stairs trying not to touch his big toe to the ground.  How he walked that way is beyond me. Balancing on his left heel and his fixator on stairs!  When I told Steven about this he asked why I am so worried all the time.  I tried to tell him that just because Nicholas can do something, does not mean he should.  I think I am getting anxious about something going wrong.  The actual lengthening portion of the process is done and he is in the consolidation phase.  This is just time for the bone to harden.  He already has his 6cm.  His ankle has been corrected.  So now we wait and I worry. Perhaps thats what happens when you love someone so very much.

2 thoughts on “Perhaps”

  1. Thanks for the blog. I’m from the FH group with baby Jenna (almost 2) with left FH. I felt soooo many of the same emotions the first year….either choosing to torture my baby with amputation or torture my baby w/ all these procedures to correct her FH. And many, many, many hours spent on the web. Now, she’s just a bright and shiny toddler who enjoys life to the fullest and nothing slows her down!! We look to LL in her future but prob. several more yrs away and my heart feels much more peace about it and she truly is a gift from God. Best, Kathryn


  2. Kathryn you are so right. Our children are gifts indeed. And I think when that feeling overrides the fear that is when peace comes. I like the fh group and others because I think it is wonderful to know that our children are not alone and that as parents we are not alone either. When I communicated with parents who had been through the lengthening process and surgeries I was able to believe we could get through it and that Nicholas would be ok too.

    Thanks for reading and commenting.


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