Sometimes the best advice is the hardest to hear.

I started this blog with what I felt was the most important piece of advice I’d ever received.  “He’s a baby, just enjoy him”, came to me by way of my mother, via telephone when Nicholas was maybe 2 days old. That advice changed my mind in the best possible ways. That advice made me the mother I am.

In the years since I have seen other moms share this advice in various ways and I’ve come to believe it is a universal truth we could all use. Birth defects or not.

Another bit of advice that deeply moved me in my early days as a mother came to me through my Auntie Liz. This one was harder to hear but no less valuable.  In fact this one stung a little. 

My aunt was Nick’s babysitter while I was in college. This worked so well for so many reasons. One thing, that was great for me, was getting to see my Aunt a lot more than I would have. One afternoon we were talking about Nicks surgery and such and I said it would be harder on me than it would be on him. Auntie immediately disagreed. I can’t remember her exact words but she said something to the effect of “This is all happening to Nicholas. He is the one with fibula hemimelia.” 

That truth hit me like a punch in the stomach. Hard and fast I realized I was making it about me. Of course it would not be harder for me than him. Maybe I needed to believe that. I was so scared of him suffering. Maybe in that moment Nicholas having fibular hemimelia was harder for me than it was for him but only because I made it that way. I didn’t totally get all of this at that moment but over time I have realized the importance of putting myself aside and honoring fh as my boys journey.

Of course fibular hemimelia, Nick’s surgeries and my sharing here and in the support group have impacted me. I have been on my own journey as mom and we have journeyed as a family. Ultimately though fibular hemimelia is Nicks. It’s his life and his leg. As hard as it might have been to see him in pain, the reality is, it is much harder for him to actually be in pain.  I believe I was able to handle these situations and support Nicholas through so much because in the moment I was able to put my feeling about what was happening to him aside and do what he needed.

I am not saying it was or is always easy.  I am not even saying I always succeed. I am saying you have to try. You have to realize the difference between supporting your child through something and taking it on as your own. It may not be simple to see our babies as their own people. It’s probably mostly fine that we don’t right away. Fibular hemimelia offers us the chance to learn this parenting lesson, that I believe all parents eventually need to absorb, on the early side.

I remember Nick saying at some point “It’s my leg mom”. I am sure whatever I was doing or saying, in the moment he said that, was not honoring his experience as his own. I know I didn’t and won’t always get it right, I stilI try. I speak so often and write so much about our experience but I have never worn an external fixator. I have never had surgery (other than dental), I don’t live my life with a limb difference. My son does. Believing that any of that would be harder on me than Nicholas might have been easier for me l but it doesn’t serve anyone.

Dr.Standard sometimes says that early surgeries are hardest on the parents because we remember them and our kids don’t, but in the moment it is happening it is our child’s experience. As parents we need to be present to support, encourage, care and sometimes fight for what our children need. I believe we are better able to do all of that when we put ourselves aside. We are better able to put ourselves aside when we take time out to honor our own feelings and experience whether through therapy, talking to a friend, crying, exercising or doing whatever it is we need. 

Taking care of ourselves can’t be last on the list. That advice might be hard to hear for some of you. I’ve spent plenty of time living that way (last on the list) and it comes with a price but that’s another blog post for another day.

I am not saying it’s not hard for us. We deal with parts of the process like choices, daily care, insurance and finances in general that can be so, so hard, and totally our own. But our kids are having surgery, our kids have fibular hemimelia.

7 thoughts on “Sometimes the best advice is the hardest to hear.”

  1. I love reading your posts. They always get my mental wheels turning. And actually they apply to being a mom in general. Thank you for sharing them!! I think both you and Nick are just so inspiring in so many ways!


  2. Hi!
    I just found your blog. My son is born with FH, he is now 2.5 yers old and has been through one surgery and the second one is this spring. Not lenghening, just reconstruction of the foot. But thats what we are planning for. A very hard decision to make and I’m not sure it’s the right one.. He will be so locked up during the lenghtening, not be able to do any sports. With a prosteticleg he would be able to do anything, but his little foot would be missing.
    We live in Sweden by the way.


      1. Yes, so I have heard. Active in what way, just play? I don’t want him to feel that we stole his childhood in forms of sportactivites (we are a active family). A few months during the lenghtening (turning the screws). But what if he wants to start a sport and then the brace comes on again and again.. And in the end he might not have so good mobility in the foot anyway and chooses to amputate! I guess we just have to make a choice and live with it. I can not imagine to go to the hospital to cut off his foot..


      2. How active? Just plan?
        I am just so scared that we Will steal so much of his childhood.. Say that he wants start ride horses like me and his sister, then he wont be able to do that for almost a year during The leg lenghtening. And it Will not be enough with just one! But at the same time I can not imagine to schedual a surgury to remove his fort and throw it in the trash! I guess we have to make a choice and live with it..


      3. For Nicholas I felt that sometime during childhood with limitations was worth a lifetime of having his own leg. Most of Nick’s childhood has been free of limits and he has had three lengthenings and other procedures.

        Another way I biew it is that if I had an accident and I could choose years of reconstruction or amputation I would choose reconstruction. No doubt. Why should my child’s leg have less value? Becaue kids adapt to prosthetics well? Its just not a reason to remove a limb. If you are doubtful I would do surgeries to correct joint issues and then try a foot on foot prosthesis. To me that is an excellent short tern answer and has been a long term/life long answer for some.


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