The Difference Between You and Me: Raising disabled children
/In between loading and unloading Jumby's wheelchair into the back of my SUV for what seemed to be the millionth time in a day, (and I wonder why my back is perpetually on strike,) I had a conversation with a stranger about what my daily life with the Jumbster entails.
While there was nothing particularly special about this conversation in and of itself, what struck me as I was yapping is that I will be doomed to repeat this conversation over and over again for the rest of my life like some poorly scripted Canadian version of the movie Groundhog Day.
"I don't know how you do it, Tanis. I couldn't do it. Most people couldn't do it. Most people can't look past the disability and see beyond their sympathy and discomfort to parent a child like Jumby."
"Parenting a disabled child is so much harder than raising healthy children."
"You and your family are very special people."
I've been having this dialogue since the day I gave birth to Shale and with the adoption of Jumby this discussion resumed once again.
Miracle Children and Altruistic Parenting Part 17 trillion! Now available in Version 2.o, completely not new with absolutely no improvements since the first installment!! Whoot!
Early on in Shale's life, I had to make a decision about how to deal with people who had no experience in living with disabled children. I had to choose between being driven crazy from the ignorance around me, or being driven crazy from trying to educate and alter public perceptions about raising differently-abled kids.
Since I've always enjoyed the sensation of beating my head against a brick wall, I went with the latter choice.
I actively choose to take the time to try and dispel any misconceptions or myths about raising these rock star children because, well, someone has to. I do it not just because I have a soft spot for challenged children but because I am trying to teach my family and the world around me that just because you can't see the value of something doesn't mean it doesn't exist.
However, this week, I'm a wee cranky when it comes to repeating this conversation, mainly because no matter how many times I repeat myself, there will always be another wave of new people crashing against my shore who will need to hear our truths.
There will always be someone who sees Jumby and looks away in fear or disgust. There will always be someone who can't see his beauty beneath his drooling smile or slumped frame. And just like there will always be people who insist on using the word 'retarded' in a derogatory manner, there will always be people who can't fathom the love and rewards involved in raising these children.
This saddens me, especially when the real untold truth of the matter is, these children hold the secret of true joy and pure love clutched tightly in their tiny twisted hands.
The real secret to raising handicapped children is there is no secret to raising handicapped children. Like healthy children the basics are the same. You feed them, water them, shelter them, love them, clean up their messes and hope like heck that they leave your heart intact at the end of the day.
Just like you would any child.
My husband and I didn't plan to raise health-compromised children. The only thing we planned was the orgasm that gave us said kid and even that was more of a 'playing it by instinct' action than any real choice.
When we discovered our third-born was severely disabled, we did what anyone would do. We cried, whined and railed against the injustice of it. But once the tears ran dry we got down to the business of raising our baby. The same way we raised the first two children we hadn't planned (to this day I still don't understand what birth control is).
Raising Bug was different from his siblings only in that he came with more equipment and different expectations. It required more patience, more prayer and a completely different set of milestones. And while the mechanics of raising a medically fragile child were different than raising a robust child, it felt the same. Triumphant, frustrating and rewarding. With a heaping side of guilt and self-doubt.
So it was an easy decision to choose to adopt a special needs child after Shale passed. And while we blindly ticked off every box describing every available handicap known to mankind when we filled out our adoption application, neither of us actually thought we'd end up adopting a child who had every darn disability known to science. But when Jumby came to us, we knew that regardless of how many disabilities he had, or the severity of those disabilities, we could do it and it wouldn't be any more frustrating than trying to convince my 12 year old son to embrace personal hygiene and use some darn soap.
Most people believe they can't raise children with disabilities simply because they never had the opportunity or experience to be around them. People fear the unknown. I, personally, was less than enthusiastic about Bug's diagnosis when I learned about it because holy cannoli! I don't know what to do with a disabled kid! I can barely handle the two healthy kids I have now!
But the thing is, I adapted (sometimes willingly, sometimes less so,) just like most people would. For every mother who gives up and ships her child to Russia with a note saying she doesn't want him any more because he's broken there are a thousand parents who rise to the challenge of learning how to parent a child with a disability.
In the end, parenting these children is not a whole lot different than raising healthy kids. Yes, there can be moments of extreme stress but those moments are guaranteed with healthy children too. Life comes with no safe guards and no assurances and it doesn't matter how many precautions you take, bad stuff still happens.
Children die; children get hurt. Monsters hide under everyone's bed no matter how many times you try and shine a light on them.
But what kind of life would any parent have if we focused on the fear of the unknown instead of embracing and appreciating the known?
The day-to-day aspect of my family to yours isn't all that different. We have temper tantrums and laughter just like regular families. Sure I have syringes and pumps, wheelchairs and standing frames littering my house, but I also have a mountain of dirty socks waiting to be washed, posters of sparkly vampires tacked to bedroom walls and the sounds of Justin Bieber ringing in my ears.
Instead of running myself ragged driving my son to soccer games and football practices, I'm chauffeuring him to clinics, hospitals and medical supply shops. You are buying helmets, shin pads and crotch protectors; I'm out grabbing medical diapers, hearing aid batteries and medical grade plastic tubing. Either way, we are both spending more time road running than a taxi driver and we are both going to end up with less money in the bank.
Parenthood. Ain't it grand?
And while I like to think my family really is the cat's meow, I'm pretty sure every parent feels that way. It is mandatory just like its mandatory kids won't eat anything unless it's covered in ketchup.
Parents to disabled children aren't saints or any more special than the parent that has ever had to pick the snot out of a crusty nostril or spent the night awake worrying about their child's safety. We are just regular parents who are lucky enough to love extraordinary children. We are all heroes to our children, and if we aren't then we need to try harder.
So I explained to yet another person, once again, for what was the umpteenth time, that raising Jumby isn't so very different than raising Sally, Jim or Sue. To the untrained eye it may look like Extreme Parenting (minus the eating live bait or chicken testicles) but really it's not.
(It's more like Survivor: Parents vs. Children, No Holds Barred.)
Our routines may be different than yours and certainly more complicated and time consuming than most, but in the end, it is just that: a routine. One filled with laughter and love and a heaping spoon full of sugar to make sure all the medicine goes down.
Just like our kids, our families may look different on the outside, but I promise you, the love feels exactly the same.
I am inviting you all to stop peering in from the bushes and come on in to see exactly how alike our chaos really is. I promise you, we don't bite.
Well, okay, Jumby totally bites but he does it out of love.
While there was nothing particularly special about this conversation in and of itself, what struck me as I was yapping is that I will be doomed to repeat this conversation over and over again for the rest of my life like some poorly scripted Canadian version of the movie Groundhog Day.
"I don't know how you do it, Tanis. I couldn't do it. Most people couldn't do it. Most people can't look past the disability and see beyond their sympathy and discomfort to parent a child like Jumby."
"Parenting a disabled child is so much harder than raising healthy children."
"You and your family are very special people."
I've been having this dialogue since the day I gave birth to Shale and with the adoption of Jumby this discussion resumed once again.
Miracle Children and Altruistic Parenting Part 17 trillion! Now available in Version 2.o, completely not new with absolutely no improvements since the first installment!! Whoot!
Early on in Shale's life, I had to make a decision about how to deal with people who had no experience in living with disabled children. I had to choose between being driven crazy from the ignorance around me, or being driven crazy from trying to educate and alter public perceptions about raising differently-abled kids.
Since I've always enjoyed the sensation of beating my head against a brick wall, I went with the latter choice.
I actively choose to take the time to try and dispel any misconceptions or myths about raising these rock star children because, well, someone has to. I do it not just because I have a soft spot for challenged children but because I am trying to teach my family and the world around me that just because you can't see the value of something doesn't mean it doesn't exist.
However, this week, I'm a wee cranky when it comes to repeating this conversation, mainly because no matter how many times I repeat myself, there will always be another wave of new people crashing against my shore who will need to hear our truths.
There will always be someone who sees Jumby and looks away in fear or disgust. There will always be someone who can't see his beauty beneath his drooling smile or slumped frame. And just like there will always be people who insist on using the word 'retarded' in a derogatory manner, there will always be people who can't fathom the love and rewards involved in raising these children.
This saddens me, especially when the real untold truth of the matter is, these children hold the secret of true joy and pure love clutched tightly in their tiny twisted hands.
Or in Jumby's case, he keeps the joy hidden in his new spanky casts.
The real secret to raising handicapped children is there is no secret to raising handicapped children. Like healthy children the basics are the same. You feed them, water them, shelter them, love them, clean up their messes and hope like heck that they leave your heart intact at the end of the day.
Just like you would any child.
My husband and I didn't plan to raise health-compromised children. The only thing we planned was the orgasm that gave us said kid and even that was more of a 'playing it by instinct' action than any real choice.
When we discovered our third-born was severely disabled, we did what anyone would do. We cried, whined and railed against the injustice of it. But once the tears ran dry we got down to the business of raising our baby. The same way we raised the first two children we hadn't planned (to this day I still don't understand what birth control is).
Raising Bug was different from his siblings only in that he came with more equipment and different expectations. It required more patience, more prayer and a completely different set of milestones. And while the mechanics of raising a medically fragile child were different than raising a robust child, it felt the same. Triumphant, frustrating and rewarding. With a heaping side of guilt and self-doubt.
So it was an easy decision to choose to adopt a special needs child after Shale passed. And while we blindly ticked off every box describing every available handicap known to mankind when we filled out our adoption application, neither of us actually thought we'd end up adopting a child who had every darn disability known to science. But when Jumby came to us, we knew that regardless of how many disabilities he had, or the severity of those disabilities, we could do it and it wouldn't be any more frustrating than trying to convince my 12 year old son to embrace personal hygiene and use some darn soap.
Most people believe they can't raise children with disabilities simply because they never had the opportunity or experience to be around them. People fear the unknown. I, personally, was less than enthusiastic about Bug's diagnosis when I learned about it because holy cannoli! I don't know what to do with a disabled kid! I can barely handle the two healthy kids I have now!
But the thing is, I adapted (sometimes willingly, sometimes less so,) just like most people would. For every mother who gives up and ships her child to Russia with a note saying she doesn't want him any more because he's broken there are a thousand parents who rise to the challenge of learning how to parent a child with a disability.
In the end, parenting these children is not a whole lot different than raising healthy kids. Yes, there can be moments of extreme stress but those moments are guaranteed with healthy children too. Life comes with no safe guards and no assurances and it doesn't matter how many precautions you take, bad stuff still happens.
Children die; children get hurt. Monsters hide under everyone's bed no matter how many times you try and shine a light on them.
But what kind of life would any parent have if we focused on the fear of the unknown instead of embracing and appreciating the known?
The day-to-day aspect of my family to yours isn't all that different. We have temper tantrums and laughter just like regular families. Sure I have syringes and pumps, wheelchairs and standing frames littering my house, but I also have a mountain of dirty socks waiting to be washed, posters of sparkly vampires tacked to bedroom walls and the sounds of Justin Bieber ringing in my ears.
Some people take their kids to dance recitals; I take mine to the hospital for Botox.
Instead of running myself ragged driving my son to soccer games and football practices, I'm chauffeuring him to clinics, hospitals and medical supply shops. You are buying helmets, shin pads and crotch protectors; I'm out grabbing medical diapers, hearing aid batteries and medical grade plastic tubing. Either way, we are both spending more time road running than a taxi driver and we are both going to end up with less money in the bank.
Parenthood. Ain't it grand?
And while I like to think my family really is the cat's meow, I'm pretty sure every parent feels that way. It is mandatory just like its mandatory kids won't eat anything unless it's covered in ketchup.
Parents to disabled children aren't saints or any more special than the parent that has ever had to pick the snot out of a crusty nostril or spent the night awake worrying about their child's safety. We are just regular parents who are lucky enough to love extraordinary children. We are all heroes to our children, and if we aren't then we need to try harder.
So I explained to yet another person, once again, for what was the umpteenth time, that raising Jumby isn't so very different than raising Sally, Jim or Sue. To the untrained eye it may look like Extreme Parenting (minus the eating live bait or chicken testicles) but really it's not.
(It's more like Survivor: Parents vs. Children, No Holds Barred.)
Our routines may be different than yours and certainly more complicated and time consuming than most, but in the end, it is just that: a routine. One filled with laughter and love and a heaping spoon full of sugar to make sure all the medicine goes down.
Just like our kids, our families may look different on the outside, but I promise you, the love feels exactly the same.
I am inviting you all to stop peering in from the bushes and come on in to see exactly how alike our chaos really is. I promise you, we don't bite.
Well, okay, Jumby totally bites but he does it out of love.
Mike Tyson ain't got nothing on me. I'll chew anyone's ear off, in or out of the ring.