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.

Surprise Surprise

Learning I was pregnant for the first time was a surprise. The calmness I felt in that moment was a surprise too. Pregnancy itself was full of surprises, most too gross to share here. And childbirth was an even bigger surprise. I will leave it at that, in case anyone reading is pregnant. I don’t want to ruin the surprises for you. 

Maybe it’s meant to be this way, but it seems to me that people least often share, the most significant things about life. We have a frame of reference regarding events and share that all over the place (hello twitter and facebook). But really, the real stuff is like a diamond in the rough.

I am often surprised when people enjoy my blog posts. When I reflect on which ones resonate with others, it’s really the ones where I open up the most. Sharing what hurts and what’s real is what others identify with and take interest in. It’s the identifying part that I am most interested in. Realizing I was not alone was a surprise. When I write a post and others say they have felt the same way, it is healing and refreshing.

Sharing my experience as Nick’s mom and Nick’s fibular hemimelia journey has had surprising results. I started writing because I wanted to reach out to families who were trying to decide wether or not to amputate their children’s limbs. I also wanted families going through lengthening and reconstruction to not feel so alone.

To that end I also created the facebook group Fibular Hemimelia and Limb Lengthening Awareness. I had been run out of a fibular hemimelia support group on yahoo, because it had a moderator that believed she knew what was best for everyone (amputation), and she didn’t want me telling parents that lengthening wasn’t torture and that my boy was running and playing and loving life with his own leg.

Awareness of and telling the truth about lengthening was key at the time. It is still important to me but it also surprises me to see just how much of a support group our group has become (over seven hundred members later). It is a place where people are so real. They open up for, and to others, to help them, and themselves. The blog and facebook group have helped me in ways I can hardly express. That wasn’t my intention but it’s a surprise I am grateful for.

I think having a child with a birth defect had a profound effect on my psyche. It dictated the mother I would become. That certainly surprises me. In the beginning it was all about minimizing the effect fibular hemimelia would have. It was about knowing Nick would walk and have a “normal” life. FH would not get in the way.

But what is a normal life? Before I had Nicholas, I think to me a normal life was being married, working, having kids, planning vacations and progress. Something like the american dream, ending with me as a grandma holding a baby rocking on a porch someday. That was success and I was relatively on track. House, husband and baby on the way seemed like a good place to start.

That may make it sound like I was some serious planner, but I wasn’t. I think that trajectory is ingrained in us in a variety of ways. Fibular hemimelia woke me up. Shook up everything I knew and believed.

The biggest surprise of all is that no one told me the progress really doesn’t matter (at least not back then… lots of people say this kind of stuff now). It’s what happens in between that does. Moment by moment living. It’s not about getting Nick’s leg fixed soon and quick. It’s about laughing at my baby joyfully dancing with a crazy hunk of metal on his leg. It’s about hearing his little sister tell him that she can be brave because of him. And for me it’s about connecting. This blog, the facebook group, emails and calls in which I am able to help someone, really help them, that feels like a kind of success I didn’t know existed.

Reaching out to others, opening up and really sharing is a gift. It’s being passed around all the time in the facebook group. For me it is an every day thing. Reading other’s struggles doesn’t get me down. It motivates me to try to think of solutions or to remind the sacred parent that we are here for them. Sometimes that is enough. Just being present in the moment. I can’t help everyone but I try.

Nicholas is as motivated as I am to help others. He loves that reading about him has given others hope. He loves that he has been translated into spanish. He loves that his experience has value beyond what it has been for him. And he loves being what he now calls “world famous”! That’s a surprise. The extreme pride Nicholas feels because of fibular hemimelia.

I didn’t know when I had a baby with a birth defect that that is what was possible. I didn’t know my son would be my hero. At this point though, that’s no big surprise.

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.

Normal Nick

I have dreaded writing on this blog. Sometimes it feels like every time I write something positive something bad happens. I know it’ silly but it worries me.

However I am taking a chance and writing anyway. Nick seems to be back to “normal”. Normal is not my favorite word anyway but still he is just living life like a regular kid. He’s walking and running. He’s going out to play with friends. He’s not in pain.

That’s the best kind of normal there is for us. Not in pain and moving freely. It’s good timing too because this weekend is the 7th annual save a limb ride. We have been there each year. We’ve not always rode or walked but we’ve been there. This year we will have a fibular hemimelia table. I am so excited to meet some of the families who I have known on line for months or in some cases years. This year will be so special because of this and because Nick had such a hard year and is doing so well now.

Another thing I have realized is that I have actually helped a lot of people by writing this blog and creating the Fibular Hemimelia and Limb Lengthening Awareness Facebook group. We didn’t raise as much money as we wanted to this year (it was a hard year for us as a family) but we are working year round to support the fh families. I get multiple messages each week from folks looking for advice or support and I am always happy to help. I am so grateful to these families who reach out to me. Helping them has been so meaningful. Everyone likes to feel useful and it makes me feel very useful. I also appreciate all the appreciation! Reading about how I have helped someone warms my heart so much.

Nick has been though so much. This is all about him after all but it is actually about our whole family and me as a mom (that’s a lot of what I write about). Being able to make the most of what life gives us is something I am proud of. Being able to take it a step further and help others gives my life additional meaning. I don’t know how many families have been touched by this blog. I don’t even know how many I have emailed with but I know that I am thankful to them for reaching out to me. My life and my heart are fuller because if it. I believed this is something I am meant to be doing. Call it a calling or call it whatever you like. It is, next to parenting, the most important thing I have done with my life.

Check out the No Fibular No Problem Fundraising Page and please give if you can! You can help save limbs too!

Special Needs Mom

I’ve written about the word disability in the past and how I’ve not felt it was an apt word to describe Nicholas. I don’t think I’ve written about the label “special needs”. I’ve resisted this one in the past as well.

The first time I heard it used to reference Nicholas is when a mother I met at a play group was asking me about Nicks’s leg and she said “My daughter Ann’s special needs too”. I was taken aback. I wasn’t insulted but I simply had not considered Nicholas a speical needs kid. At that time the only special thing his leg required was a shoe lift. That didn’t seem so special to me.

At the same play group another mother was starring at Nicks shoe and very loudly said “Wow, that kid is wearing moon boots”. She somehow failed to notice that only one shoe had a lift! I wanted to scream! I wanted to punch her! What I actually did was nothing. The “special needs mom” changed the subject and over five years later it sill bothers me. Mostly because I didn’t say anything! I froze.

Thankfully I never saw the rude mom again! She really was aweful beyond the moon boots comment. Still I was left with more to consider. Was Nicholas a special needs kid? Was it just another label? What did it mean?

Physical Disabilities by Lynn Moore
Physical disabilities include a wide variety of conditions that affect a child’s movement or ability to accomplish some physical task. A physical disability might be a condition that is addressed with physical therapy or some assistive device, or it can be serious enough to be life-threatening. Defining Special Needs at Netplaces.com

I guess a shoe lift isan assistive device. Sometimes Nicholas also needs an AFO (brace on his ankle). Plus the external fixator he is wearing right now looks pretty darn special to me…

Terri Mauro on about.con writes quite well on the topic and points out the functionality of the term right away. One Term, Many Definitions:

“Special Needs” is an umbrella underneath which a staggering array of diagnoses can be wedged. Children with special needs may have mild learning disabilities or profound cognitive impairment; food allergies or terminal illness; developmental delays that catch up quickly or remain entrenched; occasional panic attacks or serious psychiatric problems. The designation is useful for getting needed services, setting appropriate goals, and gaining understanding for a child and stressed family.

Common Concerns:

Although every special-needs child is different and every family is unique, there are some common concerns that link parents of challenged kids, including getting appropriate care and accommodations; promoting acceptance in the extended family, school and community; planning for an uncertain future; and adjusting routines and expectations. Parents of children with special needs are often more flexible, compassionate, stubborn and resilient than other parents. They have to be.

“flexible, compassionate, stubborn and resilient”… If that is how a special needs mom is defined sigh me up because I hope I’ve got those qualities down! When you have to face surgeries and stares from strangers and your sometimes suffering child you need have those qualities just to get through the day! Moms of special needs kids have to hold it all together. We also have to know how to ask for help but that’s another blog post!
You can read the entire article here:Special Needs About.com

So where does all this leave my boy? Probably the same as he has always been. Eight surgeries in as many years, regular two hour road trips to The International Center for Limb Lengthening probably speak for themselves. It’s been a pretty special journey and Nicholas is beyond special and beyond my wildest dreams of what a son could be!

And if I had any doubt about wether I am in fact a special needs mom here’s some evidence… Plus Love That Max is a great blog by another special needs mom. As far as labels go I sure am in good company!

More good company… my fellow readers choice finalists!