Ten Fingers & Ten Toes

Posted by: momtuition on: June 19, 2011

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I keep trying to remember when the perspective shift happened to me. I’m talking about the change in viewpoint that brings us to a happier, healthier mindset in dealing with Kuba and all his challenges. I still don’t know exactly when that happened. Or maybe it hasn’t fully happened which is why I don’t know. Know what I mean…? Perhaps it’s always evolving. But whatever it is and whenever it happened I think I’m ready for it – Unless I’m not when it happens and I ask for help – Which I have a difficult time doing sometimes. I’m sure you’re just as confused as I am right now :). SIDE NOTE: The therapist that I don’t have yet has their job cut-out for them. Anyway the point I’m trying to make is that for parents of special needs children, it (the perspective shift/change in mindset) needs to happen, and hopefully it does before too much time is wasted.

This is not something that we can wish or hope away – As much as some may try. And we certainly don’t want to delude ourselves and live in denial. Everybody knows that you don’t “live in denial”. You go there for a little vacation every now and then… Certainly not to live!

I once wrote that acceptance of Kuba’s disability was like mourning a death. You really don’t know until you’ve experienced it. So much hope and dreams that we place on ten fingers and ten toes. After all that’s what I asked his dad (Charlton) to check for when Kuba came out. Although between me and you I don’t think he checked for a damn thing – He was just so… I don’t even know what’s the word.

Ok… You know I can’t talk straight. I have to tell you a story about when I was giving birth.

So the hospital where I gave birth to Kuba had asked during my first appointment whether or not I wanted to have an epidural during labour – And of course I said no. WHAT THE HELL WAS I THINKING!

So I’m in the birthing room for what felt like TEN HOURS! My water bag broke (they had to do this). By the way; prior to this I was doing great. I was breathing in-through-the-nose and out-through-the-mouth like a pro. I can handle this I remember saying to my dad. Then my water bag breaks… You know in Popeye when Pluto hits Olive by mistake and she sees “stars”? I know the feeling (LOL).  Anyway a few hours after that, I feel like I’m beginning to lose my damn mind. I don’t know what to do with myself, the pain is so unbearable – And forget with the breathing… I’m huffing-and-puffing like the wolf in “The Three Little Pigs”.  So I begin to ask the nurse what they can give me for the pain. By now I had forgotten about my “au natural bullshit”. So the nurse says that she’ll see what she can do to get the anesthesiologist over – But it may be difficult seeing that I had said I didn’t want any meds. So they brought some paper-work for me to sign. Pretty much; “If this maims or kills you, you were the one that asked for it so you can’t sue us” (LOL).  Folks… If you only see the signature – I believe I could have proved in court that it wasn’t mine. Anyway, I’m moaning (PLENTY) now and I can hear everyone in the room (Yeah, it was a family affair) trying to talk me out of it (getting the epidural). Then I just hear this one voice over everyone… It’s Charlton

Charlton: Oh lord… Just give her anything! Anything she wants just give it to her! I just can’t bear like seeing her in all this pain

SIDE NOTE: I’m thinking… If only I can give you some of it 🙂 – Just kidding. I’m thinking… He’s so sweet. He can’t stand seeing me in pain – But the one time you’re moaning and asking for something and he’s ready to give it to me. Ok, WAIT… I know the “moaning-and-asking-for-something-and-he’s-ready-to-give-it-me” sounds “business-like”  but please get your mind out of the gutter (LOL). So the more-than-one-time I’m moaning and asking for something 🙂 and he’s ready to give it to me – And what do I ask for? Epi-fricking-dural – What about diamonds, a new car, house, vacation? No, I ask for an epidural… And come to think of it, he can’t even give it to me.

So, you see he couldn’t check for anything. Kuba could have come out with four fingers and one foot and he would have let me stay in “denial” where it would have been perfectly fine with me until the next day. He would have probably wanted to go to “denial” with me but he wouldn’t have been granted entry. You see the security at “denial” is very strict and once you’ve seen reality they don’t let you into “denial”.

Anyway so back to what I was talking about… The whole “acceptance” thing. Prior to getting to the point of acceptance, there’s a lot anger, sometimes depression, denial. You know; it felt like every mother I saw had the perfect child. Every other mother but me – When I saw them at the supermarket, at school, at parties… Perfect child, a child with no problems – They don’t have to deal with a child who acts differently or need that much help.

But when you really look at it you begin to realize that what you need to do is to just face the situation, as scary as that reality may be. Really look at it. Then just tell yourself that; “This isn’t what I expected. It’s harder. But I can do this. I love my child.”

You know… When you change your way of looking at things it means you begin to see past their autism, down syndrome, cerebral palsy, blindness, deafness, spina bifida, the wheelchair, the crutches… Whatever it is – And we begin to celebrate any milestone reached and appreciate that our child is making progress. I no longer look at the other moms in the supermarket. OK, that’s a lie :). I still look at them and their kids – But I’m no longer consumed with the thought of their perfect kids, perfect life. I now know that ten fingers and ten toes isn’t all it’s cracked up to be – And I love Kuba just as much as any other typical mom loves their child – And I recognize that he will chart his own course. After all isn’t that what most parents want? So there’s no more woulda, coulda, shoulda from me. I tell myself… “This is my life, and it will be what I make it!”

SIDE NOTE: When Kuba was first diagnosed Charlton and I were talking to all kinds of people trying to get help. I remember clearly that this one day we went to see a counselor. Not for us – We don’t need a counselor, do we? Well I’ve already admitted that there’s a therapist somewhere in my future, especially with this “gag order” (no business talk) he has me under – And he is going to lose his mind the next time someone calls him or stops him on the street and tells him about something that he’s wondering… How do they know this? SIDE NOTE in SIDE NOTE: “I have followed that “gag-order” to the “T” so he has nothing to be concerned about – Can’t blame me for being creative.” Anyway… Back to what I was saying. We were talking to the counselor (about Kuba) for a while then at the end when we’re about to leave and she asks…

Counselor: What do you as Kuba’s parents want for him?

Me thinking… Thinking… Nothing. I’m struggling with what to say. There’s so much stuff going on in my head.

Charlton has said nothing. He probably knows what he wants to say but hoping that I’ve somehow entered his mind and will say it for us. Ahhh… The power men sometimes want to give us that we actually can’t do shit with because (guess what) we don’t have it :). It was either that or he’s waiting for me to start and then he would (find his voice) and join in. BTW, if you haven’t figured it out by now… I’m the talkative one in this relationship. And what I just said (I’m talkative) will come back to haunt me.

Ok… So the counselor asks the question and Charlton and I are there just sitting staring at each other and at her like two idiots I’m sure. Then Charlton says…

Charlton: I just want him to be the best he can be. Whatever his best is

Me (Thinking to myself – In order of how it happened):

1st Thought: Why didn’t I say that?  I’m not going to lie – That’s the first thought I had. Then I immediately thought… “That’s what I want too.  Whatever his best potential, is what I want him to achieve.”

2nd Thought: “Do you want something else? Why didn’t you answer?”

3rd Thought: “Why didn’t I think of that?”

Final Thought: “Perfect answer hon”

Sometimes strangers would say to me, ‘You’re such a good mom, you’re doing a very good job with your son.” And sometimes (this was in the past) I would think; “Is it just because I have a special needs son why they’re saying that to me? Would they feel the same way if they heard me screaming his name like a lion was about to eat him and the only way for me to save him was to scream his name in my loudest most aggressive voice?” Yeah, he makes me a little “nut-so” sometimes.  Don’t get me wrong – I’m a damn good mom… one with flaws – But a damn good one – But I now wonder… Why would I think such a thing?  Why was I focusing on what I thought was pity in that compliment? I realize now that it’s all in our perspective –  And we’re all capable of looking at our own situations and choosing to see the good.

This enlightened way of viewing my situation did not happen overnight, it took some time. I can honestly say I no longer feel profound sadness over Kuba’s autism. It is what it is, and I’ve come to accept that – And we’re very happy for what we have and not sad over what we don’t have. I still remember the grief though. Parents, if you’re still in that grief place, please know that things can/will get better. Never perfect, but better. You have to be the ones to make that decision though. Stop focusing on comparing your child with others and on any disappointment you may feel. Happiness is there. You just have to make a conscious decision to look for it.

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Happy Father’s Day to all the dads who are making a difference and to all the moms who have no choice but to play this role because of all the “deadbeats” who continue to walk away from resurrection.