If you are reading this…

If you are reading this chances are you like me have a child who has been diagnosed with Fibular Hemimelia.  It is a mouthful isn’t it?  When my son Nicholas was born almost 6 years ago I would have to spell it out for people.  Now he tells them himself and thankfully they never ask him to spell it. Maybe repeat, but never spell.  Nicholas has done a lot of explaining lately because his leg is in an external fixator being lengthened for the 2nd time.  If you look limb lengthening and external fixators up on the net you are likely to read some distressing things.   Nicholas could disprove all of it.  My son could be the poster boy for limb lengthening.  He climbs rock walls with his fixator on, swims, hops, dances and plays all day. He takes no pain medication. Simply put, he lives his life and he lives well.

Every two weeks we go to Baltimore to the International Center for Limb Lengthening to get x-rays and see Dr. Standard.  Nicholas loves him and I am not sure what he likes better seeing Dr. Standard or visiting the cafeteria.  Ok the cafeteria probably wins but I look forward to hearing how well my boy is doing and seeing the new bone growing within the rings, wires and pins that make up his frame.  His checkups thankfully have been joyful days.

I wish I knew 6 years ago when I was a scared new mom that Nicholas really would be ok.  We did not know until he was born that he had a limb defect. I consider this a blessing because I had an easy pregnancy. Had I known I would have been so stressed and scared.  Having him was amazing.  Not amazing in the way they portray birth on TV, certainly not pain free and not at all fast. What amazed me was the sight of him.  I know I had never seen a more beautiful face.  I know many moms say this, but really my son was gorgeous.  Not squishy, just beautiful.  Right after being born he lifted up his head and looked up at this father.  If you know anything about newborn’s then you know he should not have been able to do that. While they were checking his stats and cleaning him up I realized something was going on.  Steven told me there was something wrong with his foot. Everyone was really calm so I was too.  I delivered him with midwives and they were the best.  The first thing they told me was that I did not do anything to make this happen and that he would be ok. I tried my best to believe them.  Either way I was in love.

So if you are reading this because you scared like I was, I want to tell you that your baby will be ok. Fibular Hemimelia does not have to define your baby, you as a parent or your life.  There are options and choices to make.  But for now just enjoy your baby.  That was the best advice I ever received and it came long distance from my Mom.  We were on the phone and I was stressing wondering what caused this and what to do, and she said “Jen he’s a baby, just enjoy him”. So thats what I did.

7 thoughts on “If you are reading this…”

  1. Congrats on getting this site up and running! As a mom whose kids often play with Nicholas, I can attest to the fact that he plays hard! Nothing keeps him down!

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  2. What a great first post…it brought tears to my eyes. Your experience when Nicholas was born was very similar to mine with Lauren. I do wish I could just have a little peek into the future to see that she is okay like Nicholas. Thanks for your advice and encouragement.
    Heather (from FH support website)

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  3. Thank you all for your encouragement. Heather you are the reason I am writing this. Giving hope to other parents is why this blog is here!

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  4. I am so happy for you and other moms of children with Fibular hemimelia!!! I wish this had been available for you when Nick was born it would have provided a possibility when there seemed to be so few! But he is such a happy strong little boy, unless you see him in a fixator or see his bare feet you would never know he has been through so many experiences!! this will be a wonderful asset for other moms and a gift for nicholas to read later on! It brought me to tears remembering how hard it was for you guys in those first days….Im just so glad you made this choice for you and him !

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  5. I can’t agree more… the last comment – about “he’s a baby, enjoy him”.

    My son’s condition was a surprise as well… and for some reason, it didn’t phase me in the hospital. I think the doctors/nurses were way more concerned then I was. All I saw was my beautiful baby boy.

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  6. Kate I felt the same way. I think medical professionals sometimes just see the condition and not the person. I hated the way some would look at Nicholas like ‘ooohh what’s this we have here’. They are just beautiful babies like any other.

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