Gabriel is swiftly approaching double digits. In a few short weeks I’ll be the proud parent
of a 10 year old and all of the accomplishments associated with keeping a child
alive for an entire decade. The next 10
years will be markedly different from the ones we are about to close. The baby that he was lives only in my memory
and on my Youtube channel and, like every Mother, this causes me equal parts
joy and pain.
I am so proud of the little man he has become, but I would
give almost anything to have just one more day with the sweet toddler that he
was. One day when I could still completely rock his world with a cookie and
make him laugh like a maniac with mouth farts.
An afternoon playing in the sun, his sticky little hand in mine, back when
he only ever called me Mommy and spoke that word like it was the secret of the
universe. Just one more night where I
could snuggle him to sleep, confident that everything was ok with him, knowing that
he was happy and safe and then dream my dreams for him after I tuck him into
his crib.
This is something we all have to deal with as we watch our children
grow, but I think it’s especially poignant for parents with disabled children.*
When our kids were little it was so much easier. We were able to cater their world to better
suit their needs. We had the luxury of
explaining to them that they were different without having that fact constantly
thrown in their faces. The people we
spent the most time with understood our kids and how to behave around them.
Fast forward 10 years>>>>>
Gabriel has had 2 major surgeries, lost both of his
Grandfathers and last year he had the worst teacher in the world, who
frequently shamed him and made feel bad for being blind. He’s been bullied, he’s been teased, he’s
been left out… In short, he has fully come to grasp what being disabled means
in his life.
We all start out life with what my dear friend, Laura, likes
to call an ‘emotional basket’. This is a
term she uses to describe how much pain a person can take before they fall
apart. Some people have big baskets and some people have smaller ones but we
all have a tipping point where the things we have to carry become too much for us to
bear.
I was struggling a few years ago, around the time my Father
passed away, and Laura advised me to realize that when things get bad in my life,
I should try and remember that my basket (which is pretty big – if I do say so
myself) is never completely empty because blindness lines the bottom. I never get to fully empty my basket. She suggested that I occasionally cut myself
some slack, and every once in a while acknowledge the heaviness of the load I
carry.
It was sound advice and I’m not
sure I ever told her how helpful it has been in my life, but it’s almost like
that one little phrase ‘emotional basket’ gave me permission to have days where
I can’t be: Stacy - the ultimate warrior mother who can deal with everything life
throws at her and still make a fabulous dinner.
I still strive to be Warrior Stacy every day, but over the
years I’ve come to embrace that fact that sometimes I have to let Wimpy Stacy
(who just wants to cry and drink wine) out so she can grieve and allow Every
Stacy some time to heal.
But what about Gabriel?
What about my baby’s basket?
Gabriel gets up every day in a world he has never seen. He gets dressed, brushes his teeth, finds his
shoes and shambles into a school where every other person there has eyes that
work. He knows that he’s the odd man
out, but just in case he momentarily forgets, there are 26 other kids in his class
to remind him. Kids who can write with
pens instead of Perkin’s braillers. Kids who can run and play freely during
recess. Kids who seldom want to play with him.
In the event that he makes it through the day without indecent,
half the time he has a younger stepbrother in the house who can do many things better than
he can and isn’t shy about pointing out that very fact. These days it seems like my kid just can't catch a break and I find myself wondering
what the hell does his emotional basket look
like?? I'm starting to suspect it’s made of titanium
and roughly the size of a Buick.
To top it all off, he’s got me (Warrior Stacy) cheering him
on, encouraging him and telling him that he can’t let his blindness get him
down, that he shouldn’t worry about the fact that other kids are mean to him
and that he has no real friends. He’s
experienced snatches of Wimpy Stacy over the years, but she mostly does her
wine-crying in private.
Do you see where I’m going with this?
These last 10 years, I’ve held the emotions I feel over my
son’s condition close to my heart to protect him from it. I never wanted to stain him with my sorrow. I stand by that. However, I’ve recently come to realize that I
need to help him learn to deal with his own feelings about being blind. I have to help him understand about his
emotional basket and accept that it has limits. I have to help him find that
fine line between ‘feeling sorry for yourself’ and ‘feeling appropriately sad
sometimes’.
Since I’m from New Jersey, I’ve decided to go for
straight-up violence.
Today after I pick-up my Little-Big Dude from the ‘bad place’
(aka:school) I’m going to take him to a deserted beach and give him a pile of
rocks. I’m going to ask him to name each rock after one of his problems and
then I’m going to let him throw that son-of-a-bitch-of-a-rock as far away from
himself as he possibly can. I might even let him drop F-bombs while he does it.
Today I’m going to give my boy permission to be angry, or
sad, or scared…in whatever way makes him feel better. I’m going to let him be nothing less than a blind,
little boy who is allowed to feel sad because of all the things he can’t
see. I will let him embrace that sadness
and make it his own, for a little while - just a little while, and then we’ll
resume our regularly scheduled programming where I am a Warrior Mother and he’s
the Badass Blind Guy.
There’s no way that I can ever have another day with my
baby, but today I’m going to help my son take a big step toward being the well-adjusted
blind man I know he will one day become. A man whose unseen face, for me, will always
contain the shadow of my little boy.
* The word disabled still makes me shudder, but I have
decided that fucket-up is also not appropriate.
I’m pondering this still, all suggestions are welcome.
