Wait for Me

"Wait for me!" I called to my daughter as we headed to to bus stop.  Just like that, just like always, she did.  I watched her beautiful honey curls sway in the wind as she waited for me.  Her beauty astounds me as it always has.  I took a moment to take her all in. Suddenly I started to feel uneasy and it didn't take long to figure out why.

For the three years our little girl has been going to school.  I have always walked her in to her classroom, or her to 

her bus stop.  She can't be left completely alone because of her autism, but regardless, I would walk her, I just love that time together.  She has made great strides over the years in gaining independence and safety.  She no longer screams and cries in the street or throws herself on the ground.  She no longer runs around the bus instead of on it, and due to necessity she has a tracking anklet if she ever does wander off.  We have spent years building all the proper steps to create a safe environment for her to exert her independence.  I can say with confidence we are getting there.

This day when I called her to wait for me was different, it was no longer because she couldn't safely cross the street without me, and I knew that, it is because I am no longer able to keep up with the normal stamina of an eight year old, and emotionally I can no longer cross the street without her.

I try really hard not to let my illness get in the way of my children's development.  I never want to hold them back, as my mitochondrial disease progresses it is a constant check and balances to be sure that I am not asking them to be the mature one in our relationship, that I am not depending on them when they should be depending on me.  It is a careful balance, one we do very well with most of the time, but it is difficult especially since two of her siblings are also afflicted with the same disease.

I blinked back tears and she pressed her "I love you" sign on the window of the bus as she rode away.  Boy do I love her.  Like the whipping winds on a warm sunny day that girl fills my soul and keeps my sails afloat.  I pressed the mirrored "I love you" sign against my heart, I could feel the pitter patter that connects us.  

The next morning I got her bundled up and watched her as she took inventory of herself in the mirror.  She looked at me when she was done "Do you have your crutch mommy? Do you need me to help you with your shoes? Do you think you should stay in today, it might be too much, I love when you walk me but maybe you are too sick.  Maybe Miss Emily should do it? Are you sure you will be okay?" My heart broke inside piece by piece as I listened to her beautiful little heart pour out her worries, ones a mother should have for a child,not vice versa.

We stepped out the door.  She skipped up ahead.  As she got to the end of the driveway she methodically placed her hand out waiting for me.  I was still about eight paces behind her taking careful steps with my forearm crutches.  "Come on Mommy, I'm waiting for you." She said with a sweet calm to her voice.

"It's alright love.  Mommy will watch you cross the street.  Just make sure you look for cars." As the words left my lips a smile formed, a mirror of the guilt that I was able to release.

"No, Mommy, I want to cross the street with you.  I like to cross the street with you.  Even though you walk slow, I'm in no hurry."  She put her hand out again and shook it methodically.  She looked back over her shoulder and smiled.  "Now come on, I'm waiting for you."

I took her hand with purpose that day and crossed the street.  We both smiled until the bus rolled up.  From her bus seat she flashed me her "I love you" and her eyes locked with mine.  She didn't have to say a single thing.  I knew right then and there her heart could read between the lines of mine.  No matter what we go through or how much things change my baby girl will always wait for me.

 

One Thing I Wish We Within the Disability Community Would Stop Doing Today

Every day I turn on my computer I am met with the same thing.  In one form or another someone is presenting a blog aimed at telling people a list of things they should not say to someone who is disabled, or to a parent of a child with disability.  They get passed around quickly, eaten up with that comradery people crave so deeply.  They are haphazardly added to the list of good reads one can easily relate to, but I think they can be more harmful than good and here is why.

As a young woman with multiple disabilities and the mother of several children who also live with multiple disabilities we are no strangers to the off color and sometimes hurtful comments strangers and even friends and loved ones can make unintentionally during conversation.  There have been plenty of times over the years that I have been left in tears from a well-meaning person who just did not know better when they offered me an earful of what they thought was positivity and support.  It is true that people who have not shared similar experiences often miss the mark without even realizing they are saying something that could be potentially damaging to your feelings, and of course it hurts.  It is only natural to want to fix that for the masses and to save someone else in similar shoes from experiencing that same scenario.

Even if I have agreed with all of the items on one of the notorious lists of things not to say, I can only think of one occasion that I have actually shared one with friends.  The particular post was pertaining to grieving parents and it was all down right common sense and words that most of my grieving friends had trouble finding themselves in all of their pain.  It was written with an emotional appeal as to why a grieving parent truthfully could not handle hearing certain clichés and written from a very raw perspective thankfully many will hopefully never have to face.  Many of these lists, however, whether the author has intended for them to or not, have an accusatory undertone and really widen the gap between those with disability and those without.  They often contain a lot of “you” statements and instead of explaining the emotional sentiment behind not being able to hear certain comments, they call the reader out for their mistake and shame them for making it, with their negative undertones. 

Where this becomes the biggest concern to me is the fact that we as a community are trying our best to bridge the gap.  We are always trying to remind others that we are the same despite our disabilities.  We spend our time preaching about how we wish that people would ask questions instead of acting uncomfortable around us, we ask that they make normal human conversation instead of pointing and staring, we plead that they don’t leave our children out of activities that everyone else is invited to.  How are we going to succeed in any of those areas when we are constantly writing open letters containing lists of things they shouldn’t say, or do, and giving them the concern that they need to walk on egg shells around our families? 

I am not in any way saying that I disagree with what these lists are suggesting people don’t say.  For the most part I have agreed with about 75% of them and have been hurt by most of those very statements unintentionally.  My concern is that these types of pieces are setting us back in what we as a community are trying to accomplish.  They are all but demanding people tiptoe around us when we should be allowing them to learn through openly spending time with us and giving them the grace they deserve when a social error is made.  

I have not been disabled my whole life, and there was a point where I was somewhat uncomfortable around people who had disabilities.  It wasn’t because I felt there was anything wrong with those afflicted by disability, but I was very afraid of saying or doing the wrong thing.  I was curious about their differences as well as had a strong desire to befriend them just like anyone else, but I remember a huge anxiety burning deep inside of me that I would say or do something that would hurt their feelings, because I simply didn’t know what to say.  Reading a post such as “Ten Things to Never Say to a Child with Special Needs,” that had inflammatory and sarcastic undertones would not have helped to ease my anxiety at all, it would have caused me to clam up and give up.

Just as powerful as “you” and “I” statements, I feel these posts would be much more effective at getting their point across if they gave examples of what to say or do and not what to avoid.  There are always going to be those no matter what who are going to hurt you without meaning it, and some who just don’t care.  For those who do care, let’s show them we care by not treating them as if they have already done something wrong.  Telling someone not to do something naturally causes people to take a personal inventory and be unnecessarily alarmed that they may have done something to hurt you already, which isn’t fair.  Instead let’s give them the tools they need and the grace they deserve to truly be the friend/ family member you are hoping for.