iPearlsky
I want to take a moment to welcome some new readers. I have noticed comments on various posts, some rather old, and have received some emails. Unfortunately, your email addresses did not come through if you sent me a message via my contact page, so I could not respond (that has been fixed). And speaking of which, thanks a lot Allison, I’ll never be able to watch an episode of I Love Lucy again! So, welcome to all.
How much are we defined by our children? Understand, I have never had a normal kid, so I have no idea what “normal” is in reference to a family, from a parental point of view.
Who am I?
There was a time in my life when my signature was on several thousand CPR cards. That defined me. There was the time that the entire student body of the College of Engineering in the big city university voted me Professor of the Year. That defined me. There was the time when I was seconds from blowing some guy’s head off during this thing with lots of bad guys and not enough cops and an OT got called (“officer in trouble”) and five police forces responded and, well, that defined me for a while. There was a long time that I was defined, within my profession, by a white paper that I wrote that every design and debug engineer read, or so it seemed when I was repeatedly stopped at trade shows and conferences and told “wow, I read your paper, it is fantastic!” That defined me.
Then, about 18 1/2 years ago the definition shifted. Pearlsky was born. I brought my business into the house. Pearlsky’s mother continued to work outside the house, I did most of the childcare. Then David was born. Now I was caring for two severely messed up kids. Business people needed to know since it is difficult to hide the sounds of such a household. Some unexplained sudden absences and missed calls and meetings gave away the fact that at times a three day (or longer) stay at the hospital just happens. Even though I knew more about my niche of the market then just about anyone, even though the likes of Motorola and IBM had me help design a key piece of their best computer chips, I was more likely defined as the poor schmuck with two disabled kids. But did they define me or did I define me?
My house happens to be a ranch style house (all on one level). That is great having two kids in wheelchairs, but the house was purchased before children. There is a handmade redwood ramp. It is very nice, but alas, it is a ramp. For wheelchairs. Parked next to it is the modified minivan. With handicap sticker. When you walk into the house, you actually enter into the living room. On your right is a very small kitchen with medications, Pediasure, and the like filling it. We have two kitchens actually, Pearlsky’s and the regular one. In full view in the far corner of the living room is her blue table and lift. The bathroom has a large walk in shower, no walls, no hindrances. There’s a shower seat in the bathroom.
Am I defined by Pearlsky?
For those of you that don’t know, I have a blog. Yeah. And my nom de plume is “Single Dad.” That kind of defines me, but the blog’s URL is … DisabledDaughter.com Talk about defining! I am single, I am a dad, and she is disabled. That’s me.
Would I be Single Dad if, in fact, I run away to Mt. Olympus with a goddess? Well, I’d still have Pearlsky and still write about her, so I guess so. Will I be Single Dad if Pearlsky lives elsewhere when she turns 22?
Pearlsky (and, I say with great sadness, to a much lesser degree, David) is a major force in my life. Does my life revolve around her? More than I would admit.
I am in the midst of a major contract with a major company to do a major marketing thing. It will be a ton of fun, some travel, I am actually working on my carnival talker (aka barker) persona, yet, through it all, I am still Single Dad, no? Pearlsky’s dad.
I am the one that feeds her. Wipes her ass. Puts her in bed. Gets her ready for school. Buys her clothes. Makes her medicines. Worries. Advocates, voraciously.
Is it bad that our lives revolve around our children? If she was normal, I cannot imagine it would be like this, but I don’t know. Do I cause my own definition to be defined by Pearlsky? Will I ever be anything else? Does it even matter?
Please make sure to let those nearest and dearest to you know that your tombstone is to read exactly that.
While you have clearly accomplished much in life, let’s face it – being just about the greatest dad Pearlsky and David could have tops all else.
By the way, I can say from (little) experience that the whole normal kid thing is great, but overrated in many ways. Seriously.
By the way, I sent you a couple of emails… not sure if you were able to get them, as I sent them via your contact page.
our epitaph made me laugh my head off.
I hope this doesn’t offend you. Not to belittle your accomplishments, but millions of people are professionally successful. But very, very few people could claim to be as passionate, devoted and disciplined as Single Dad. Even if Pearlsky later ends up in a home, the battles you have fought, the sense you’ve tried to make of the circumstances, your trying to do the right thing for the past 18-1/2 years, and this other world you have invited us to into…. Well. Yes, I can’t always remember what ‘other shit’ you do 🙂 because the story of Pearlsky (her brother) and what her dad does is remarkable, one in millions.
Meant to say, YOUR epitaph made me laugh my head off.
IMHO, though we have a tendency to identify with outer circumstances that surround us, it is, in the end, our actions that define us. Possibly, if we look carefully, we can notice a consistent pattern in our actions, in our re-actions or responses to situations, that are common: deceit, manipulation, fear or honesty, strength of character, seeking truth, in all our daily dealings (with, of course, the fact that sometimes, we don’t always “deal” optimally). Then, **that** is who you are…always…and the outer becomes fundamentally irrelevant in terms of “definition”. As an aside, I have never found being the parent of a “normal” kid to be “overrated”.
Someone said, ask yourself who you are, not what you are. I like what Claire had to say about looking for patterns of behavior, actions and reactions to understand who we are.
My life revolves around Daniel, too. I love taking care of him, I look forward to getting him up and dressed in the morning, kissing him when he comes home from school, even checking his poops and wiping his ass. Sometimes I’m annoyed with his noisiness, sometimes I need a break and time away from him (and he from me, I’m sure).
I also have a typical teenage daughter, and my life revolves around her, too! I even had to take a peek at her poops recently, when she was complaining about constipation to the point where we had to schedule a doctor’s visit. I love being a mom.
I also have a full-time job and a new husband and my life is pretty busy with all of it. Maybe another good motto is it’s not what we’re doing, but how (in what spirit) we’re doing it.
Good post, I like being forced to think about this kind’ve stuff, Single Dad! Liked your epitaph, too!
SD – yes – I am the parent of a “normal” kid but it is not all that defines me. I am a friend, a sibling, a work-out partner, a daughter, a niece to many. I am an employee to some and a boss to others. I think Gimky says it best that you are a sum of your definitions – those from before the births of your children to those that follow all of your growth. Don’t sell yourself short – your character and sense of purpose (in all things) amaze me (and most of us who read this).
And I love the epitaph~
C
@Claire – Perhaps “overrated” wasn’t the correct wording, but what I meant to say is that, in *my* opinion, raising a “typical” child isn’t more wonderful or rewarding than raising a child with a disability/different abilities/special needs/whateveryawannacallit. I didn’t realize that until I became the parent of a “typical” child. A conversation best saved for another time, though. Cheers.
Remember, we are human BEINGS, not human DOINGS. And I think Claire said it very well.
You explained how you have defined yourself so well, you ought to start a new business where you just define other people. Hell I’d sign up for that since I have been floundering around like…well, a flounder…for two years seeking self-definition. And rock-hard abs.
@Jo…thanks for the clarification. You make a lot of sense.
A great post SD. The epitaph made me laugh as well 🙂 I think to some extent we are all defined by our disabled children, although hopefully not entirely. We all need other things in our lives to stay sane, and I’m sure you work gives you a lot of satisfaction, not to mention making a living. But… it’s still a fact that our kids come first, before work or anything else if they need us. I guess that is just being a parent, kids disabled or not. (seriously, you should put that epitaph in your will…)
You’ve done other shit?
Honestly, that last photo made me laugh aloud. I’m proud to know you in some small way, whatever you’ve done and whoever you are.
I’m totally defined by my kid. If it makes you feel better, I was totally defined by Daisy (who is “normal”) before I had Aria. Of course, before Aria, I was “Rachael – overeducated SAHM of the adorable little girl”. Now I’m “Rachael – that chick with the jacked up kid”.
Sadly, I feel like people define me mostly by Aria now (“…and she has another kid too…what is her name?”). Of course, I think I’ve brougt that mostly on myself
Love the tombstone, btw.
I find that I don’t want people I’ve just met to know that I have a severely disabled child, but then I feel like they don’t really know me unless they know. I’ve seen people change their view of me when they find out about my disabled son, and this comes with mixed reactions. Have you ever felt kind of naked when you are out without the wheelchair? It kind of disgusts me that I feel that I am not properly portrayed without people knowing, and yet I try so hard to not be that woman that drives the blue wheelchair van. Do you look for the wheelchair access in every building you enter even when your child is not with you? Maybe we do other shit, but maybe this is the most important shit we do.
I’m the same way, Kandee. I want people to get to know ME before they see me through a lens of preconceived ideas about profoundly disabled kids (whether those conceptions are good or bad). And yes, I feel the way you do when I’m out and about with the wheelchair.
I remember reading in “Changed by a Child” when Daniel was still a baby, that as he grows, even the untrained eye of a toddler will be able to see my child’s differences. That has definitely come to pass! My fifteen yo daughter gets pissed when a little kid says, “what’s wrong with him?” or worse yet, “what’s that?” Sometimes I’m up for a friendly conversation, sometimes I feel like joining my teenager when she says, “I hate little kids!”
It’s a rare and nice thing when I meet someone else pushing a w/c and they make contact with me. I was in the mall once, and a woman with a boy in a blue w/c like Daniel’s, AFO’s on, walked by and just said, “I feel ya, sister.”
Aren’t we always defined by our relationships to other people?
My dad is a music teacher in loads of schools, and used to be a personal trainer and PE teacher. As a result, HEAPS of people knew him, and by extension, me. I would tell someone my last name, and they’d say “Oh, are you Phil’s daughter?”
Anyone who didn’t know dad, knew mum, who was the admin person in a respite care facility. So for my life people have been introducing me as “phil’s kid” or “Margo’s kid.”
For a time I lost many friends, and made new ones through my boyfriend. I was then known as “Jeff’s girlfriend.”
but now, I have a son. I am still phil and margo’s kid, but almost any new friends know me as “Toby’s mum.” My life entirely revolves around him.
Talk to any new parents, or stay at home parents, and much of what they say will be regarding the children. It’s not a bad thing.
I define myself as Toby’s mum.