So yesterday I read an article online by a mother of a child with special needs.
She was talking about the blessings of her child. How she had met people she would have never met, had experiences she would never have had, etc., by having her child with disabilities.
She went on by saying that she would not have it any other way.
I have one thing to say to her.
You are a liar.
You cannot, in any way, shape, or form, convince me, as a special needs mom, that I would not make Dovi "normal", given the chance.
Given the chance, why on earth would I NOT want my son to suffer? To struggle?
Given the chance, why on earth would I NOT want my life, the life of my husband, and my other children, turned upside down and inside out?
Yes, I've met people I would never have. But darn it, my wonderful friend Peta who I met at the therapy clinic ten years ago! when her daughter Elaina and my Dovi had PT and OT at alternating times...I would be very happy to not know you, and I'm sure you feel the same way, if Dovi and Elaina were healthy.
So, mom who would not want it any other way...
Really?
You enjoy having a child who needs ten medications to survive?
You think a g-tube is a preferred way to eat?
You think your child enjoys struggling to communicate?
You enjoy financial struggles due to extreme expenses for your child?
You enjoy IEPs where you need to fight for every.little.thing.?
and on. and on. and on.
Really?
C'mon.
I don't believe you.
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10 comments:
You know, ive read articles like that before. And it always occurs to me that maybe I am just a horrible person that I am certain I wouldnt feel the same way - being happy about a challenge. But the thing is - you can say you have learned, or grown from whatever hardship. And that you understand that G-d wants it that way for a reason. thats different from choosing it, if given the choice. right?
Even though I am not a mom of a special needs child, I am pretty sure you are correct, but then as a nurse who worked in a NICU, I remember a mother with Munchausens, who was deliberately making a healthy child sick for the attention that came with it. So it makes me wonder, if there are ppl out there, who have been given a child with special needs in the first place, and then get off on the "special" attention that comes with it. I imagine there are all sorts out there, maybe she is one of those crazy ones.
I applaud you for your response. I do not have a special needs child myself, but I have friends who do, and in my line of work (staff coordinator for a home health care provider) I deal with families with special needs children on a daily basis. One of the toughest things I sometimes have to do is call a family to break the news that I do not have any staff available for a particular day - and I know that I am ruining their day, because if I cannot send someone to help out with "John," then it means that Mom and Dad cannot accomplish many things on their to-do list for that day, possibly someone has to miss work and/or school, and if the shift was booked so the rest of the family could go on an outing then all the other children miss out on that outing.
Every child is a blessing, and a gift from God, this is true. And, of course, as a loving parent one cherishes ones own child regardless of the challenges and struggles. But, as a loving parent one also would want ones child to not face challenges and struggles beyond the norm.
this question: "would you change your child" comes up a few times per year in the online down syndrome world...and you can call me a liar if you will, but the truth is that each time my answer is, "i'm not sure". would i wave my magic wand and change binny? our situation is somewhat different from yours; binny does not have any serious medical issues. if he did, i would probably be much quicker to wave that wand. instead, we just have garden variety mental retardation, plus a touch of apraxia thrown in. so, would i go for a chromosomal re-arrangement to get rid of that pesky extra #21...i just don't know. what other parts of who binny is ride along on that extra #21? might it be his wicked sense of humor and the sly side-long glances that he shoots you when he knows he's being funny - right before he busts out laughting? or maybe it's the huge stubborn (strong willed?) streak? or the ability to wake up happily every day? or his amazing rapport with the elderly (on my mind after today's pre-purim visit to the nursing home). getting rid of the one small thing that makes binny visibly not "normal" might take away too much of what makes him who he is.
i would, however, consider spending my wish on getting rid of the apraxia. Not being able to hear what he is thinking; being worried about his inablity to tell people his name and address if he's lost; wishing to know about his dreams and hopes - those are all truly painful to me. but my biggest concerns and worries as a parent stem more from how binny is perceived and treated by individuals and society than about binny and the fundamentals of who he is - can i wave my magic wand and change other people's prejudices rather than changing binny? because when i think about who i would wish for in his place...i'm just not sure...
but i sure do hear you on the pain and suffering. no parent wants that for their child, and it sucks that it happens at all.
sorry for the novel.
now, off to the laundry pile!
debbie
Amen!....Can I say that? Regardless I totally agree. I have a special needs child (kid 1), a quirky kid (kid 2), and a hyper kid (kid 3)...I WOULD LOVE to be a typical soccer mom like everyone else. She's a total liar for saying she wouldn't have it any other way. What she might mean is that life is OK having it the way it is. But's let's be honest. I'd be sitting in some office right now wondering where I'd go to lunch with my lunch buddies instead of gearing up for another round of IEP's. ALL of mine have them. So thanks for telling the truth. Children are a gift from God...but come on...who wants to put our kids in pain and confusion. We're just working the best we can with what we've got...and that doesn't mean we don't love them heaps.
As a special ed teacher that has worked with kids on all parts of the spectrum, I constantly struggle with parents who have not accepted their children, disabilities and all. Often these children suffer simply because their parents are constantly trying to "fix" them instead of helping them be who they are. I also have a bro-in-law with Down's and I have seen firsthand the stress that continues to this day that revolves around his care (he's 21). So, it is a hard struggle and there is no right way to feel. But continue to celebrate all the wonderful qualities in all your children. I really love reading your blog and that it makes me think!
My darling Sara, tears are streaming down my face as I type...because I'd trade you in a NY minute for a child who can tell me where she hurts, walk where she wasnts to, fight with her little sister, write on my walls, or take money out of wallet while I am not looking. Yeah - those are thinngs she will never ever be able to do. And dear friend, there would no hesitation if I ever had the choice between the "blessings" of being a special needs mom...and having a whole, healthy child. You'd be so gone. So, I too scream "LIAR, LIAR, PANTS ON FIRE". She belongs with the ones who say we were given damaged children beacuse "someone" had faith in us. That's just BS. That said, I belive that Elaina does not need to be "fixed", I embrace her as she is, and, I love you..........
If we are both stuck on the plane to Holland, well, I hope you are seated next to me. Well, as long as you bring some craft projects to keep us busy. Oh, boy..this is gonna have to be a whole post in itself.....
Oh Peta, I loved what you wrote...
As a another special needs mom, I have to say, Amen Sister! Well said!
I swear you are like my mom's long lost sister/daughter/friend :)
MWAH hugs and smooches. I totally agree with you. LIARS.
But it is a nice sentiment :)
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