Getting It

It was another "routine" trip to the hospital today for Marissa and I.  We do them all the time, nearly every week or sometimes several times a week for one reason or another.  Sometimes it's just a clinic visit, sometimes it's for an outpatient procedure, sometimes we're there to stay a while.  In any case, every time we go, we experience something new and I learn a little.  Today was a kind of a big one.  Today we entered and registered through the adult side since Marissa was just having an upper GI and swallow study in radiology. On our elevator ride up, I was greeted by a mom with a very rambunctious what I assumed to be two-ish year old boy. She looked at me, looked Marissa up and down, and said flippantly, eyes diverted, "nice custom stroller - wish I could afford something like that for my kid."   I politely informed her that it was, indeed a wheelchair, covered by insurance, and that my only wish was that my child would be able to walk someday and wouldn't need it.  Then, I kissed my daughter and politely exited the elevator.  I get these comments all the time and for some reason they bother me more and more.  I shouldn't care what people think and normally I don't, but when it comes to Marissa, comments upset me more. Why do people feel the need to open their ignorant mouths?  Did their mothers never teach them that if they didn't have anything nice to say to say nothing at all?  People don't know what Marissa has been through.  She deserves respect and she doesn't get enough of it.  People still call her a baby, they (strangers) still come up and touch her, it drives me crazy!  I've talked about this before it in a post called Secretly Disabled. 

I digress.

So, blood boiling ever so slightly, we headed off to radiology where we found our usual spot in the far corner of the pediatric section of the radiology waiting area (as far away from everyone else's germs as I can get her) and there was one other mom and her daughter in the room.   The mom was, I would guess, in her mid-late 60's and her daughter in her mid 20's.  She was in a wheelchair, had spastic CP and was significantly delayed.  I couldn't help but watch this mom, the way she very gently placed her daughter's splints on her wrists, they way she fluidly stretched and exercised her muscles, they way she stroked her hair, the loving way she wiped the drool from her chin.  I was in awe over how slow and patient she appeared, how softly and kindly she touched and talked to her.  Then, it hit me.  She has likely done these things every single day for over 20 years.  I can only assume that she rarely, if ever, has trusted anyone else to these critically important tasks.  She will never be an empty-nester, she will always care for her "baby".  Other people in that waiting area saw her and no doubt felt very differently than I.  Pity is the word that comes to mind.  I don't believe that mom has ever felt pity for herself or her daughter.  I don't believe she has ever looked at her beautiful girl as a burden, but rather as a gift.  She looked over at Marissa and me a few times and smiled and I know she knew.  I am her twenty years ago.  I recognize that look.  It's a quiet, personal glance shared between parents of kiddos with needs, an unspoken understanding that says "I get it-you will be okay".   We may be strangers, but we are living a life that few understand and we can look at each other and at each others' children and see things that the average person doesn't see.  I have no doubt that she looked at us and saw the scars, the nystagmus, Marissa's McKee and AFOs, her CP posture, her wheelchair and she got it immediately.  I have seen parents in clinic and in the hospital and a few I have talked to.  I have given "the look" to some who needed it and I have received "the look" a few times when I needed it.  It's amazing what simple understanding can do for the soul when you feel all alone.

I looked at my little girl who has gone through so much and who, at times if I can be brutally honest, has pushed me to the brink of patience lost; and I want to tell her that I am in it for the long haul.  I will never turn my back on her.  I will be by her side until I take my last breath and I am okay with that.  I understand that she will likely not leave home to go to college or get married.  I understand that she will be with us forever.  I understand that will not be empty-nesters planning vacations and moving to a condo.  Our lives will forever revolve around caring for our child.  A burden?  Absolutely not!  An incredible, amazing, beautiful gift!!