A few weeks ago, I posted about my struggles with verbiage to explain to strangers, or new members of our circle, Madeline’s seemingly “typical” appearance.  It even began when she started having seizures for the first time.  The neurologist and children’s hospital staff did not believe me that my daughter had had 7 seizures in 2 ½ days.  Because she looks “typical."  The doctors even said that, clinically, what they see physically does not match her diagnosis.  I’m not sure how I am supposed to react to something like that.  Is it supposed to make me feel better?  That even though my daughter has a life-shortening, unpredictable, incurable, incredibly rare condition, I should somehow be encouraged that she doesn’t look like she does.  Um …

I guess this is another lesson I am supposed to learn on this journey–to educate people that special needs does not have a certain look.  For example, yesterday, my husband and I went to our local bank to start a savings account.  We had to sit at a desk with the banking associate and she asked a lot of questions and Madeline was getting a little restless, so I put her on the carpeted floor to stretch out a bit.  The banking associate said, "Well, she must not be walking yet because I don’t see her running around."  Enter the conundrum.  I used to just say that she’s "delayed due to her epilepsy,” but I began to feel that this did not do her condition and daily struggles any justice.  She is not just delayed because of her epilepsy.  She is globally delayed in every single facet of development.  She fights tooth and nail every day to maintain balance.  I sometimes fear that she is a prisoner in her own body.  She is not just delayed.  So, yesterday,  I told the banking associate that “she’s handicapped."  The look she gave me was intense–"but she looks great!"  Well, her "disability” is not external; it’s internal.  I try not to take offense when people say this.  You’re right.  She does look great.  In fact, she’s stunning.  (and those curls are to die for!)

But, being special needs does not have a certain look.  This morning, as I was perusing the usual support groups, I found a quote that I really liked.  The words “disability” and “handicap” do not come easily from my lips.  It’s tough.  Though, I saw a sign that “the only disability is a bad attitude” and there are no disabilities, just “different abilities."  This, I like.  Madeline has tremendous ability.  That she works her little booty off to achieve.  I cannot imagine the internal struggle that she faces daily to just do the simplest of tasks.  Here’s a video of her manipulating a spinning ladybug on one of her favorite toys.  This took months of practice for her to perfect.  You can even hear her grunts of concentration as she does it.

Here’s a video from M’s last OT session.  She has on her orthotics, her compression vest, and is being assisted by one of our most favorite therapists.  You can see how difficult it is for Madeline to support herself and to maintain balance (as well as how awesome her OT is!).

All of this to say, that appearances are very deceiving and going forward, I will refer to my daughter as "differently abled” instead of “disabled” because it is important to focus on the ability.  I mean, just look at this little girl.  There is so much vibrant life and innocence in this sweet baby.  I took this video while we were waiting for OT to start.  I want to do whatever it is I can do to protect this sweet, sweet soul.