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

Friday, May 6, 2011

People do not seem to realize that their opinion of the world is also a confession of character. ~Ralph Waldo Emerson

Just going through my blog and see that I haven't updated anything since mid April. I have a lot to put on here and I will. Eventually.

Paul and I decided we needed a change of scenery and so, we headed to California last week. We went to Yosemite National Park and to Kings Canyon and Sequoia National Parks too. Walked for miles and miles and miles, up and down mountain sides, hiked to waterfalls and even spent a day along the coastal region of Monterey. It's beautiful out there. Fisherman's Wharf, Pebble Beach, and Carmel were every bit amazing and beautiful, as the mountains and the HUGE Sequoia trees.

However, I do believe the best thing that we were able to do, is meet up with 3 of my facebook friends..whom I've never met in person before! These 3 gals are proud mama's to children born with Down syndrome too. Yes, we met their children and we were thrilled and a bit saddened at the same time. I'll blog about the trip in a few days.

The reason I started this blog, was to write about the life our our sweet little Carly. Our struggles. Our health issues. Carly's achievements and her milestones; that many parents take for granted. As of lately, some of those parents have completely blown my mind!

Unsure where to go with this blog, from this point in my life. Part of me wants to keep it going, but another part of me thinks I should wrap it up. I mean really..who wants to keep coming to a blog that is so sad, with very little joy and happiness. But, I suppose, that's life. Life isn't a guarantee of "joy" and "happiness".

The other day, something took place on facebook, which hurt me very much. All because I called out a mama, well 3 mama's, of Ds children, who actually posted that they "hate Ds and apraxia" and "I want a cure for Ds". I mean, really? Seriously? To say you "hate Ds" pretty much goes against striving for acceptance from those who have no experience with Ds and would just as soon see no person walking the earth with Ds. And wanting a cure?? PLEASE... that's like saying you wished your child had not been born.

As I sat on my couch, I bit my tongue for quite a while and perhaps, maybe I should have kept my thoughts to myself. But, they opened the can of spoiled, rotted worms that really made me sad. Not mad..at first,,, although, now I'm pissed!

I sat in my living room that night, missing and wishing that my little girl, who was born with Ds, was here on my lap and then I read a facebook status that literally made my chin drop to the floor. I was suddenly very, very sad. Sad because one of these mama's, who I admired so much, felt the need to put something so insensitive of our children, on her facebook. It was there, in black and white..no excuses could cover the fact that it had been placed on her status.

After that, went on it lead me to do some thinning out of my facebook friends. I thought all us Ds mama's were on the same page. We want acceptance. Inclusion. But how can we get that, if Ds mama's say/type that they "hate Ds" or they "want a cure for Ds"? How does that differ from hearing someone say the "R" word? I'm willing to bet, if one of those particular mama's heard someone say, "I hate Ds"..she'd flip her lid.

Some may think I over reacted on this whole thing. My daughter told me to stay out of other people's drama..But I didn't do anything wrong here. All I did is try to explain how sad that that status on facebook made me. Especially since, their happy, healthy Ds children are ALIVE and mine is not. I tried to remind these mama's of the Down Syndrome Creed. The last line was my point. "I'll do it as YOU do, but at MY own pace" Sadly, they didn't get it and fired back at me with both barrels loaded. Whatever. I guess you learn a thing or two about a person.

We will continue to be "finding our way" as we learn to live without our sweet girl. It's a process that is never ending. My hope, from this point forward, is that parents WAKE up and REALIZE the gift you've been given. All children struggle and we all have obstacles to over come in our lifetime. Remember, you could be in my shoes one day. Don't hate Ds or wish it away. For pete, sake..embrace it!


Denise said...

My dear friend (whom I am so happy that I finally got to meet in person). You know my feelings on this already!! I hate that you have to deal with this kind of crap. But, as always, you have been able to turn it into a lesson to those of us that don't get it the way you do and I know that I, for one, do listen to your reminders about appreciating every minute that we have with out precious kiddos. Thanks for not being afraid to speak your feelings!!

Rochelle said...

I agree with Denise, So glad you guys got away and were able to meet some great pals. Sorry for the FB drama.
Hope you continue to blog whether it be here or another one.

Anonymous said...

How could they say such things? I so wish sometimes my son did not have to deal with his heart issues. And maybe because we almost lost him that first year, that is why I'm so thankful for him. So grateful for the lessons he teaches me each and every day. Lessons I would not have learned had he not been born. Lessons I would have missed had he died like the doctors thought.

I cannot imagine your loss because I cannot imagine my life without my son. I am sorry that you have to go through this life without her. It has to be hard to find your new way without her. But even in your posts, I see that you are trying to move forward. Your life must by necessity be different than it was. I wish you peace as you continue to find your way.

And may those mothers never experience the pain you are going through.


my family said...

So glad you all got to meet some sweet mommas and their little ones, I'm so jealous:) I think I want Miss Ella to come stay with me for a while but don't think Denise will let her travel to louisiana (or will you Denise?)Can't say I didn't try, lol

Thank you for posting this. I believe exactly the same thing. How can you wish Ds away...then your child would not be who he/she is. I really don't get it and honestly it saddens me when someone tells me "maybe one day they will find a cure" A cure? lets look for acceptance instead.

I know it must be heart wrenching to blog at times but I think you give us all a different perspective on live with our children and for that I thank you my friend.


Becca said...

I loved seeing the pictures of your trip to CA on the other blogs, and I'm glad you got that time away for a bit.

Facebook can be a real blessing and a curse. I discovered that the button that hides the posts of particular people is a very good thing and has given me much peace of mind. :-)

I hope you'll continue your blog in one way or another...


Emily said...

Thank you for that encouragement! I love my daughter, every facet of her. She's not doing anything of the things her peers can do -- and that's fine with me. I have all joy and peace in her and her future.

I feel like others smile and pat me on the head, "Oh, good for you!" when I express my contentment. Their lack of understanding makes me want to keep those precious feelings to myself, but thank you for encouraging me to continue saying, loud and proud, "My daughter has Down syndrome and she's perfect!"

At anytime, I could suffer tragedy like yours. I felt it important to follow your story, to experience it with you, to remind me to be thankful for all of my children, for all of my gifts. Thank you.

Heather said...

I love you.I love your family.I love Carly.That beautiful extra chromosome has connected us,who wouldn't be thankful and grateful for that?

I embrace it all.Honestly I do.Even in the moments when I see Zoey struggle and fight,even when she has been fighting,literaly, for her life.I have never hated one aspect of Down syndrome.Ever.And a cure?Oh please ... what would our world be like without it?

Keep writing Joany.I think it is good for you and good for us as well.Those who love you and worry about you.Sorry for all the crap.Last thing you need.

Meeting you and Paul,well that was amazing.The pictures of Paul and Zoey,I will treasure for always.

Kristen's mom said...

I have a gratitude journal and in that journal I write things I am thankful for. Sometimes I am really good and write every day for a week and then sometimes I don't write in it for an entire year. Last night I was reading through it and on August 7, 2001 I wrote the following...

I am thankful for
1. Down syndrome
2. A cool breeze on a very hot day
3. An awesome husband

I seriously LOVE children with Down syndrome. I wish I had one here to hug and watch Wizards of Waverly Place with.
But no...I am home ALONE.

Anonymous said...

I'm sorry that a status could hurt you so much. But as a mother of a child with Down syndrome...a child that I adore...I do not see a thing wrong with a mom venting frustration on a social networking site. That is the very purpose of social networking sites. You can feel free to vent frustrations to your friends that you network with and open a dialogue. Everyone gets frustrated. And that's okay. Everyone has bad days. And that's okay. Everyone has different life experiences. You've experienced the unthinkable and no one that I know would try to belittle that. But that does not mean that a mama can't feel frustration about her child's communication difficulties. And if the reason for those communication difficulties is Down syndrome and apraxia, she should feel comfortable...and have the right...to express that frustration to her friends. And vent those frustrations. And work through them. Feeling frustrated is NOT the same as wishing your child away or wishing your child wasn't born or wishing your child didn't have Down syndrome. It means that, at that moment, you hate what Down syndrome and apraxia have done to your child. We should never, ever invalidate someone's feelings. Everyone has a right to feel how they feel. You have your feelings and that's okay. She and others have their feelings, and that's okay. This conversation, over a simple status, has been going on for days. I think it's time to agree to disagree and stop dragging people over the coals for expressing how the feel.

Unknown said...

WOW..you're pretty funny "Anonymous" You get on my blog, comment, or basically attack me, while defending the people who down talk their kids and you don't even have the nerve to leave a name..although I do have my ways of finding you..quite frankly, YOU should stay out of this. Unless of course, YOU are one of THEM! If you knew all that took place, (maybe you do, who really cares). I stated how sad that status and a comment made me. I did TRY to point out that Ds was not a bad thing. That all kids struggle and have obstacles. mentioned how all these mom's need to be thankful for their very much ALIVE children and quit their whining. Had I been the one gripping and whining, I would have said, "I hate evaluations" But I sure as heck would never have said, "I hate Ds". Why exactly are YOU and the other gals, dragging ME over the coals? Jesus H Christ, my daughter with Ds is not alive anymore. These people have healthy children and choose to bitch and moan about them on a social networking site. Do they seriously expect praise for this? Give me a flipping break. If you are going to be on a social networking site, you better expect to have different views and opinions. So, this particular mom didn't have an open mind. A mind open enough to, "get" my drift? To speak up and say, "oh crap, wrong choice of words..don't hate Ds, hate eval's"..And maybe it was just the wrong choice of words used by her. Maybe. But rake me over the coals for something that I did not say. Someone else said it. Why not attack them? Unreal to me, how people literally worship one of these particular ladies. Actually makes me sick to my stomach now that I think about it..because I too thought very highly of her. I guess the only thing these gals wanted was sympathy that they have a child with Ds. Well they wont get any from me. Oh, by the way..nothing going on with this topic on my facebook all day. Cant speak for the others, who I unfriended and of course the one who was so pissed cuz she couldn't take my speaking up to her..well, she blocked me. LOL!

Regina said...

In my opinion those people that wish ds would just go away are in denial. I totally agree with you about embacing ds. Maybe someday those parents will realize just how much their ds child adds to their lives.

Anonymous said...

I respectfully agree with the comment above. The person who said that somedays she "hates DS" is only venting and expressing frustration and sadness over the additional struggles her daughter has to face with apraxia in addition to DS. She loves her daughter to the core.

Unknown said...

Well, anonymous # 2.. I never said she didn't love her daughter. Why must everyone defend this woman? If everyone is so tired of this bull$hit..stop leaving these pissy comments on my blog! I'm not the one who said/typed that I hated Ds. Let not forget,,,SHE said/typed the words..NOT ME! Again, this is MY blog. Go support B on hers! And for your information. I LOVED my daughter to the core too. And I never, not one single time, got to the point of frustration to where I said or typed the words,or even thought those words.. "I hate DS" Saying or thinking that, would be a slap to the face of my daughter and to others born with Ds. Kind of like saying "retard" or "retarded". Man, everyone jumped up and voiced their opinion on using that word,,but it's okay for a mom of a Ds child, to say she "hates Ds"? Wow..some people slay me!

Bethany said...
This comment has been removed by a blog administrator.
Unknown said...

"Enough already, Joany".. she said. Just got totally bitched out by Bethany! And no, I did not post it. I should have..but I think people would be sickened by the way she spoke to me. I did save it though. She told me I'm a "angry person". Well guess what? I AM. My daughter is DEAD you freaking fool! Your the asinine one, do not call me asinine, just because I voiced my opinion to your words! It saddens me to see parents who use the word "hate" and "cure" when speaking of their children. And I'm pretty sure that's about all I said in my comment on your facebook status the other day, while you were "venting". If you want this to stop, why did you comment on my blog??? I haven't said one single word on facebook about any of this bullshit the last couple of days. And lord knows, I had no plans on talking to you. Just leave me alone Bethany, you are NOT the lady I thought you were. You are seriously sick in your head. Bitching out a mama who would give anything if my daughter were not laying in a cemetery. You got issues lady. Don't tell me that I have. I know what mine are..but I highly doubt you know what your issues are. Don't down play what you said. Own up to it. And not to play the grief card here, but it takes a pretty shallow person, and I mean REALLY shallow, to bitch out a grieving mother. And yes, you know people think you hung the frigging moon. So yea, they kind of do worship you. You think what you are going through is the WORST thing you will ever go through in your life?? Wake up! Oh and by the way, don't you EVER, tell me to leave Carly out of anything! She's my daughter who I am proud of to this day, Ds and all the obstacles and trials that go along with it. I'd take a pissy speech eval over death any day of the week.