"Grieving the loss of a child is a process, it begins the day your child passes and ends the day the parent joins them."

Tuesday, January 4, 2011

The problem with quotes.

I've been reading particular quote on facebook over the last several days. This quote can be interpreted in a couple different ways. That's the problem with quotes.

The quote I'm talking about reads as follows:

"I don't think the worst thing that could happen to me is having a child with Special Needs. I think the worst thing would be to raise a child who is cruel to people with Special Needs."

I've seen this appear on several of my facebook friends status updates. This quote, which was taken from a someone else's blog, was written by a person who doesn't even have a special needs child. Which, in my eyes, doesn't give them any insight on just what it means to have a special needs child. How can a person who doesn't have a special needs child even know what it's like? They can not. There is just no possible way.

My take on this quote is far, and I mean FAR different than the next guy/gal. You see, in my eyes, being given a special needs child is a blessing. A blessing that people who do not have a special needs child can possible know anything about. Most people who do not have a special needs child are thankful. Lets face it, and be honest. They ARE thankful. Which is so very sad.

Now, I admit, I didn't always think it was a blessing to be given a special needs child. Truth be told, I had never even thought about what it would be like. So when I was hit with the news soon after Carly's birth, that she may have been born with Down syndrome, I was devastated. I was devastated because this was not the child I wanted. Nor the child I dreamed of. How foolish I was thinking like that. Thankfully, that devastation and foolishness only lasted a few days..about 10 to be exact. And by then, I was so in love with my teeny tiny little blessing, that extra chromosome didn't matter to me at all.

As far as a child being cruel to a special needs child. Well, that falls directly on the parents of said, "cruel child". It was my experience, since Carly started going to a public school in kindergarten..it is NOT the child who finds a difference. It's the parent. The parents steer their child into cruelty. It's something the child learns. Something that comes directly from HOME. Something that, in time can fester over the years and turn people completely rotten. Just remember where that came from. HOME.

The kids in Carly's kindergarten and first grade classes loved her. They LOVED our girl. The parents, not so much. We were even told during an IEP meeting, (by a god awful teacher,,who didn't even care for Carly..but that's a whole 'nother subject!) that parents were voicing concerns that our child was being taught side by side with their children. How's that for a kick in the gut? Straight out of the..hold it...dare I say it?? PARENTS mouths. So yeah, a cruel child begins at HOME people! You get out of your kids just what you put into the raising of them. If you show them how to be nasty and cruel, eventually they will pick it up.

I can say what it's like to have a special needs child. I lived it for 8 years. I dealt with the cruel remarks of teachers and staff at the school (all adults). I dealt with hearing from the school, how PARENTS questioned my daughter being taught with their child. Oh my god that broke my heart. Carly was so sweet. Kind and loving. She was gentle and caring. A good natured child. Well behaved, even more so than her fellow, "typical" peers. She was doted on by all of her classmates. I witnessed with my own eyes just how much the kids loved her. I went to the school countless times to observe Carly in action with her peers. Those kids loved her. Those kids insisted that their parents take them to Carly's visitation at the funeral home. Their parents were all at a loss of words at the funeral home. And I made a point to tell them, "you have a special little boy/girl, who you should be so proud of because he/she was such a great friend to our girl." I hope that my words stung those parents. If only for a moment. Those poor classmates cried puddles of tears for our girl. Those kids still talk about our girl. To this day, those kids miss our girl. Thankfully, those idiotic parents hadn't yet rubbed off on their kids by the age of 7. And I hope our girl taught those parents a lesson. The lesson that their kids are capable of accepting a special needs child. Their kids didn't bitch and moan that Carly was in their classroom, learning along side of them. That my friends, is what their parents did. So, yeah,,,the parents do eventually rub off on their kids.

In my opinion there is NOTHING and I mean NOTHING that compares to losing a child. Having a special needs child...really is difficult at times, but so very worth it. Having a cruel child, well people...that's your fault. You teach your kids to be mean and that's what you'll get. A mean, cruel kid. That's up to all you parents out there. But. BUT, having your sweet little 8 year old literally drop dead before your eyes is the absolute worse thing ever. I would take a special needs child or a cruel child, hands down, over a dead one! Everything else in life is pure pettiness folks. Once you have to visit your 8 year old at a cemetery, reality hits you square in the face. The pettiness in life is just that, pettiness.

Please be careful with the quotes you steal from others. . . and don't judge me for my take on them. Because, seriously, if you think you have it bad with a special needs child or a cruel child...step in my shoes for a day. You'd then be very, very thankful.

As I said, my take on this quote may differ greatly than yours. We may all read the same words, but look at those words in a completely different way. That's, the problem with quotes!

***on a side note, I lost a couple facebook friends after I posted my take on this quote. Pettiness people...pettiness.***


april narretto said...

Then they r not real friends. This is your blog to post your feelings. We can't imagine the loss u feel don't worry about what others say or do

Unknown said...

Thanks April. I just think it's a shame that parents think the worse thing possible in their lives, is to have a child be cruel to a special needs child. For crying out loud. . . people need a slap of reality!

Unknown said...

I love this post...honesty and truth are hard for some people...I have to admit...that I have had a hard time with Maddie and that extra chormosome...BUT after watching you and other blogging friends that have gone through such loss and heartache..I feel foolish and selfish to complain about my child...you put me back into reality and looking forward not back...all we have is truth..smiles

Denise said...

I definitely thank you for your words!! I have seen that quote a few times the last few days too and thought nothing of it other than, how true it seemed because having Ella is wonderful. But the way you express your perspective gave me a whole new look at it. As soon as I saw your title and the quote you were referring to, I immediately thought the same thing about the worst thing being the loss of sweet Carly. And I completely agree with April, the facebook friends weren't your real friends anyway if they can't allow you to express your very painful reality!!! Also, I want you to know that I was thinking of you on Carly's birthday but didn't know what to write to you that day so had to stay quiet....sorry!!

Heather said...
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Heather said...
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Becca said...

I'm totally with April on this. I'm really surprised you lost FB friends over an honest and well-merited opinion. I saw that quote numerous times on FB, too, and also didn’t think too much about it, but you have truly put things in perspective for me, and hopefully for many others.

By the way, I found what you said about the *parents* of school children to be very, very interesting. I always ask my husband, when he encounters other parents at Samantha's 'typical' preschool, what his take has been on their interactions with her. So far so good, but I'm always cautious and under no illusions. I'm so sad that there are still so many narrow-minded people out there.

Thinking of you and sweet Carly often…


amyl4 said...

I agree, I saw this quote on FB and thought it was kind of odd. I'm glad you wrote about it. I think of you and Polly everyday and cry for the Hell you have to live with on this earth. It's so unfair! Thank you for writing about this quote, you are right, these kids learn to be mean. Prayers and hugs for you Joany always,

Heather said...

I was going to say the exact same thing as April ... they were not friends in the first place.

As for the quote,I have seen it everywhere as well.No real opinion on it except for me,it just didn't speak to me,if that makes sense.I understand what was trying to be said,I just think it perhaps wasn't worded properly.

Kind of like "Welcome to Holland" ... might get some backlash from this,but for me,that was again ,not a piece that resonated with what I felt.Bottom line for me is that I was NEVER suppose to go to Italy in the first place ... where I went,and who I have is exactly where and who I was suppose to have.No mistake in destination.

Love to you Joany.Write away.What ever you feel.good therapy if you ask me.

I deleted my first comment and added to it because what I found in re-reading mine was that I totally missed the most important thing I wanted to say and that was thank you ... for your honesty and your sharing and your perspective from a vantage point that no parent should ever have to view life from.Ever

Stacy said...

Thank you so much for your "take" on this quote. I was one of the ones who found great truth in these words but realize those around me may not have the same appreciation for them. There is a sense of pride in every moment of parenting a special kiddo. The ones who raise the "cruel kids" cannot say the same thing.
Thank you for blessing us with your daughter...for sharing her life with us!

Bulldogma said...

"I don't think the worst thing that could happen to me is having a child with Special Needs. I think the worst thing would be to raise a child who is cruel to people with Special Needs."

Really? Are either of those things honestly the "worst" thing that could happen to the quote's author? Sheesh! Now there's a person who hasn't been around much!

I simply don't relate to this quote. I have 3 kids and none are perfect. I think what sits wrong with me is the connotation that "the worst thing that could happen" is in any way related to *having* a child... ANY child. I would think the *worst* thing that could happen (aside from contracting some dread disease that caused my appendages to fall off) would be to NOT have. To me, it seems like the quote's author is comparing having a child (in what ever form) to a cancer or horrific natural disaster... or perhaps, terrorism.

I'm with you, Joany! Lame a$$ quote (IMO).

Anonymous said...

You lost facebook friends over an opnion on a quote? Lord have Mercy. I posted the quote I liked it but to de friend for a diffrent spin on it is just nuts. It is so their loss. Often a different take on something make us think a bit more about things. And some just don't like that. Thanks for giving us different look at it it is appreciated and you are always in our prayers.

Lacey said...

I hope you didn't get nasty comments, the ones that were deleted!
I agree that nasty children learn the nastiness somewhere. Its not in your brain when your born! After having a younger brother that was teased incessantly, I taught my kids, before I even had Jax, that teasing was wrong. DS kids were loved at my High school as well. One was even the Homecoming queen!
I love all my children, none are perfect. What terrifies me every day is the thought of losing Jax, or any of my kids for that matter. Truly nothing could be worse. Love you Joany!

Unknown said...

I didn't get nasty comments. Those that are deleted were from Heather. Not sure why she deleted them. I didn't delete them..promise!

Adrienne said...

Here's my interpretation on the quote and I did post it because I liked it but I interpreted it way differently than you did. First off, I don't think having a child with special needs is the worst thing, my dad has stage IV cancer, needless to say there are far worse things. But I think many of my friends who seem to live these "perfect" lives do feel having a child with DS would be the worst thing ever and would ruin their "perfect" lives and I wanted them to know that it's not and that possibly worse (although definitely NOT the worst thing ever) would be to raise a rotten child that grew up to be cruel to people like my Bennett. I suppose the quote should have been worded differently. So sorry that it offended you or hurt you because that would never be my intentions, of course. I do think of Carly often and pray for your family. I know you are in a lot of pain and wish that something could take that pain away. Praying for that time to come that the pain isn't so unbearable and you and your family can have peace. HUGS to you Joany!!

The VW's said...

I can only imagine that the worst thing ever would be to have your child die.....there is NO DOUBT about this! What you and your family has had to go through is almost unbearable for me to even think about! So, that quote definitely doesn't ring truth for me.

However, I think the point that they might have been making is that having a special needs child is not a bad thing, but having other children or people be cruel to a special needs child....that is bad! That was my take anyway, when I read the second part of the quote.

One thing that I believe plays a part in all of this is IGNORANCE. To me, being ignorant is not knowing something or not understanding something.

Ignorance is kind of like being innocent of something....it's not the fault of a person that they don't know something, it's just that they haven't learned that something, because no one has taught them.

Many people are ignorant of what it is like to have a special needs child. They don't understand, because they haven't had the opportunity. Once we are blessed to be given a special needs child we are no longer ignorant, because we see what a blessing we have been given! In retrospect, we learn the difference, because we are given such a blessing! Some people will never get to learn this lesson, because they will not be given such a gift in their lifetime.

And, those who have not lost a child are probably somewhat ignorant as well. You have had to go through something so emotional....you were given this tremendous gift and she was taken away from you. No one, no matter how much we think we understand, can truly understand what it is like to be in your shoes! We are blissfully ignorant. This is why I believe some people post such quotes and why well-meaning people say things that they do.

I truly don't know how you go through your days without Carly! And, I think about you and pray for you so often! Just know that many try to understand, but they just can't understand, unless they have walked in your shoes. This might be why so many people say or do ignorant things.

Thanks for continuing to teach us what is appropriate and what is not. Carly was such a light to this world and a great teacher to so many of us.....and you are the same way, by sharing with us so honestly about how you feel. We all need these lessons, because frankly, we can't understand all that you are capable of understanding, because of the tremendous loss that you have had to go through.....by having to say goodbye to your great gift, Carly, way too soon!

Love, Big Hugs and Lots of Prayers!!!

The VW's said...
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Heather said...

Deleted because of embarrassing grammar and to add something ... sorry if it caused questioning.I promise this last delete was NOT from me!!!!

Unknown said...

Heather...who cares about grammar...not me!

Kristen said...

I like your words..."You get out of your kids what you put into them." That's truth. And I wholeheartedly agree, there is nothing worse than a dead child. All else is just petti. So many times when I get overwhelmed by Cayman's medical care or uncertainties of her development I am reminded that I can handle any of this compared to the paralyzing emotions of not having her anymore. That is the worse, and I wish so badly it was not your reality everyday.

Thanks for sharing your thoughts on this quote.

Googsmom said...

I ABSOLUTLY agree Joany! That is exactly why I didn't "re~post" that quote. Mean people/children are created by the life they have been taught. Its good to read i'm not the only one who thinks like this.

BTW I love ya and of corse I send {{{{{HUGS}}}}}

Tina said...

What you are going through or any parent that has lost a child, is unimaginable and yes the very WORST thing a parent should have to ever live to witness, I can't even think about it and here you are having to live it each and every day knowing it's not a nightmare you might wake up from. Joany you have every right to express your views on things and if you lose friends just because your opinion might be different from theirs well then they were never friends in the first place. What kind of person always wants their friends to agree with them, that couldn't be a very honest relationship then.
I did read that quote on FB and thought about if for 2 minutes but didn't make much of it, I did think perhaps its meant for people who don't have a special needs child but even then it still isn't written very well and as you so correctly put it a cruel child is a product of his/her home and environment, so we have noone but ourselves to blame if we have a cruel child growing up amongst us.
Joany I think you should never stop writing what you feel just because someone might not agree, there will always be someone who doesn't agree with you or me but this is why we have our blogs, you don't like it well then you have a choice to leave or stay on and read further. What you have gone through is something noone (unless they have gone through the same trauma) can understand truely, I hope noone ever has to but as a parent I do understand and know that my children are the most precious things on earth, neither are perfect but they are my greatest gifts to me and I am just so thankful that I have them, I am just so thankful they are here and I think more so now after you have really awakened me to horrible reality of the unpredictability of life that I never take them for granted anymore.

Emily said...

No comment on the post. Just stopped by to say: Your struggle has been heavy on my heart today. I pray each day is a little better than the one before it. ((hug))

Groves said...

I appreciate and value your perspective very much, and I always learn from you when you share these things.

Thank you!! I think you have so many worthwhile things to share from what you have gone through. I just wish with all my heart that Carly was in your arms today, and you could share with her HERE.

Cathy in Missouri

Holly W said...

Hi-I came to you via a comment you left on another blog..I liked your name...thought it was cute...
Firstly...anyone who unfriended you for your take on a quote from a person who, in my opinion, has no idea what they're even talking about aren't worth being friends with anyway..how ridiculous...
Secondly...I read through your posts after this one and...wow..I don't know what to say...I can't imagine the pain and loss you feel. Carly was a beautiful girl, and I honestly don't know how you are able to get through the days without her...I don't know what I would do if I lost a child, and after all she'd fought..what an amazing child you had...
It sounds as though she left an impression on everyone she met...

Cathy said...

If they unfriended you for that...good riddance!

I didn't post the quote because something didn't seem quite right about it. Then, when I read what you had to say, I thought...wow, that's it.

I think of you and Carly so often, Joany. A precious little girl I never was blessed to meet, is making me a better momma. Thank you for reminding me of what is truly important.

Runningmama said...

I just wish I had the power to bring Carly back and erase the pain you must feel, it's too too much for me to even imagine! I'm not on Facebook a lot so I hadn't seen the quote, but I will say that you are right parents have control over whether their child is cruel or not...but no control over whether they are taken so young like Carly.

BJJ said...

So true! Advocacy for Inclusion shouldn't just be aimed at school districts and school officials... we should advocate to the parents!

I hate when a parent of a typically developing child thinks that it is a disadvantage child to their to be in an all-inclusive program (which I am SO for those programs). If anything, it is an ADVANTAGE because it is raising the next generation to see everyone as equal because that is how God made us!

I am lucky to have worked alongside the RISE Program in Tuscaloosa, AL and nanny for a family that sent their children into a classroom that was total inclusion. Those children were smart, loving, compassionate, understanding, and giving. Their best friends had Down syndrome, cerebral palsy, TBI, and other developmental disabilities but they loved one another. I THINK THE WORLD OF THOSE PARENTS!!

You have no idea how much you have inspired me over the past year! Stay strong, cry, be happy, be sad, and continue to love Carly. She made an impact in my heart & that you should know because you are an awesome parent!


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Anonymous said...

While I agree that losing a child is the worst thing in the world, the quote refers to worst qualities of raising a child.

Also, pettiness is pettiness and taking out frustrations on other parents (as ignorant as they may be) for their ignorant behavior is just as petty especially in such comments such as "I hope that my words stung those parents" and "bitch and moan".

I know some wonderful parents who have cruel kids who just don't know how to act around special needs children. Yes, parents influence their kids, but you're failing to take into account that each child is unique. My sister had a DS child in her class growing up and while this was a Christian school and all parents were Christians and kind people there were some children who were just flat out rude/cruel, although most were kind and accepting and friends, even if initially unsure.

That said, Carly was a beautiful child and I wish that she was alive to bless everyone around her and bring smiles to your faces.