The first day of the rest of the next 10 years

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.