Please don’t call me normal.

I didn’t always think I was special. The first time I thought I might be a special mom was the first time I declared I was like any other mom. I was attending Saint Francis College and was sitting in a lounge area of the ladies room. I had been attempting to pump breast milk and feeling sad and frustrated because pumping in the rest room really wasn’t working. Another student must have noticed my upset because she struck up a conversation. She thought what I was trying to do was awesome. I said I was just doing what was best for my kid, which is what any mom would do.

Her response was that no, that was not what any mom would do. She knew plenty of moms who didn’t put their kids needs first on a routine basis. In my mind putting Nick first was the easy part. She made me feel proud of the mother I was.

I can’t remember if we had even gotten to the topic of fibular hemimelia. This interaction happened in September of 2003 so I am not even sure Nicholas had seen the orthopedic doc and gotten a diagnosis yet. Recently I have read a few posts by moms of kids with special needs or differences in which they reject being called a special mom. They claim normalcy like a badge of honor. If that label is what they need then I would never take that from them however I suspect there are many other mothers that get through more than a few sleepless nights thinking they are anything but normal. They are in fact bad-ass-rock-star-moms and I couldn’t agree more.

I know there are moms that feel like god or the universe chose them to be mother to a special child. That is a beautiful thing and a beautiful way to forge meaning. Things happen that we wouldn’t choose. Some of us rise to the occasion, some do not. For me, to take away the meaning making we are left only with the struggle.

There are also moms (and dads… sorry dads I never write about you) that choose children with differences or medical conditions to adopt. Maybe they like the label normal but I couldn’t ever give it to them.

Normal just isn’t a label I would take for me or for Nick either. I used to worry about people treating him normal, not anymore. Fair, right and good treatment is not always the same treatment as others. In my mind claiming normalcy does not honor the journey we have been on. I can’t say that every other mother would do everything I have. How could I believe that Nick has gone on this journey to be normal. What is wrong with special?

When I first read the “I am not special” type of posts I felt a little bad. I wondered did I have a big ego. Was I wrong to think I was special and Nicholas was special… and what about all our fh friends and the moms with kids with more serious and life threatening conditions. The truth is I think they are way more bad-ass-rock-star than I am. This is not an ego trip.

To be honest I wouldn’t enjoy someone telling me I am just like every other mom. I know I am like many, many moms who put their kids first and do whatever they have to do (and actually have to do some things most moms could never ever imagine) but the fact that other moms are special too does not make me less special. It just means I am in good company.

“Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, ‘Who am I to be brilliant, gorgeous, talented, fabulous?’ Actually, who are you not to be? You are a child of God. Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people won’t feel insecure around you. We are all meant to shine, as children do. We were born to make manifest the glory of God that is within us. It’s not just in some of us; it’s in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others.” Marianne Williamson

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!