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Post by Jackie on Oct 26, 2009 9:17:51 GMT -5
Trying to think of a good way to put this.  I had a real downer this AM looking at facebook. There was this ecstatic post from the daughter of a friend who got married Saturday. She was thanking everyone and getting ready for a honeymoon in Hawaii. As I read the responses I recognized so many names. The bride was in Emily's class all the way thru HS. She was someone who genuinely tried to include Em in things often...and has always asked about her, etc. The girls who were on her facebook were many of the girls Emily knew from gradeschool thru HS thru things like sports, bluebirds, and birthday parties, church etc. I also know most of their moms. Many of these girls are married and have kids now...and while being very happy for the bride I must admit I had a tear or two thinking that if not for her DS Em might be part of this too. Of course then reality grabbed me and I admitted to myself that Em has always had DS and so there really is not an Emily without it... to imagine her there is really not appropriate. As usual I began thinking about all the wonderful things that Em has accomplished and experiences she has had despite it...but...my eyes are still wet... I share this with you because you are my family and also to let you know that despite my usual positive posts...I still have MY moments. Thanks for reading. Jackie |
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Post by Jodi on Oct 26, 2009 11:06:05 GMT -5
Hugs to you Jackie... that is why I love uno. Most people just do not understand. I am grateful for all that Ryan can do, but there are things that other kids are doing (like right now it is travel ball - lot's of people's kids at work do travel ball) that Ryan can not do. When Ryan was 3, a fellow parent with a son with ds and autism had a shocked look on his face when I said I hoped that Ryan would be able to marry and live independently. At 3 it was a possibility. Now that he is 11, I'm not as confident and he (the coworker) has a "told ya so" attitude which just ticks me off. I have since "amended" my hopes - but they are still there. Do you ever feel like saying "screw Holland?" LOL...  Thanks for sharing your moments, Jackie - the good and the bad. I know it helps me so that I do not feel alone on this journey! Jodi |
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Post by Googsmom aka Jennifer on Oct 26, 2009 12:50:06 GMT -5
{{{{HUGS JACKIE}}}} I love ya!
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Post by laurasmom on Oct 26, 2009 18:48:53 GMT -5
Do you ever feel like saying "screw Holland?" LOL... Jodi, I laughed out loud when I read this. There have been times I have felt the same way. And Jackie, I am with you, and understand totally. Those moments do come, and I think they always will. I love Laura completely and unconditionally, but still, they come. Hugs from SC Sharon |
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Post by Emilysmom on Oct 26, 2009 20:17:36 GMT -5
Jackie,
I can SO relate!! MOST days, I don't give it a lot of thought and then something happens like you mentioned and I hope it's totally "normal" for it to hurt; cause it sure does!! I agree.......one of the best things about Uno Mas is that we CAN share stuff like this; the good and the not so good.
About a week ago, I went to Sonic and a girl who started Kindergarten with Emily and was with her for so many birthdays, school field trips, Girl Scouts, etc..........brought my order out. It immediately reminded me that Emily had told me a few years ago that she wanted to get a job at Sonic when she grew up. When I asked her what she wanted to do at Sonic, she said "Take food to cars on roller skates and say CAN I TAKE YOUR ORDER"!!! Well, she has never learned to roller skate, and her speech issues wouldn't really make it very easy for her to take orders. So, Emily's idea of a dream job will probably not be possible for her; while one of her school friends "landed" that job at Sonic as her very first job. Sigh.
And Jodi.................thanks for the chuckle. Yep, I have felt like that occasionally!!
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Post by Chris too on Oct 26, 2009 22:37:59 GMT -5
Yep, Holland, like every other place on Earth, also has sewers.
Thanks Jackie, for bringing this here. Reminds me that I'm in very good company when I'm feeling that way too.
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Post by Claire on Oct 26, 2009 22:54:15 GMT -5
I also love this site, it has been my only way of staying sane sometimes in the last 12 years. All of us understand with no prejudice how another parent may feel and do not judge for it. I have had many of those moments actually especially lately as Adam sister 16 mth older (13 going on 20)  is starting to develop, go to movies and little dances with friends, and I can't help but think how it would be for Adam, or if his sister would actually let him tag ;D along if he hadn't been born with Down syndrome. But then sometimes I think they have a better relationship then most kids in her class that have siblings with no disabilities. Adam may not go to dances, movies and parties, but they sure goof off good at Barney songs together. PS: Has anyone found a way to get rid of Barney forever yet? ?  |
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Post by Jackie on Oct 27, 2009 9:52:42 GMT -5
No about Barney...but I am looking for someone to remove Jack Sparrow/Johnny Depp from OUR life....LOL
Jackie
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Post by kittkatt on Oct 27, 2009 11:02:11 GMT -5
Jack-ay!!! Hey lady. Haven't been around in a while, but wanted to stop in and say hello.
Hugs to you. I like what Chris Too said about that fact that Holland has sewers. Every now and then, they really stink.
Rhienne is 13 now, and his biggest interest is in whether or not I am going to take him to Burger King and get him the latest SpongeBob figure. And that is ALL he is interested in. Aren't you supposed to drown if you spend too much time "in a pineapple under the sea? Please?
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Post by michellew on Oct 27, 2009 19:41:52 GMT -5
Just wanted to chime in and say I'm right there with you all. And I love Barney forever because he inspired Rachel to talk (she was nonverbal until age 7). Now it's Spongebob and iCarly, lol.
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Post by Myria on Oct 28, 2009 7:10:59 GMT -5
((Hugs Jackie)) I know this journey can get rough sometimes, and I appreciate your honesty! I of course still have the totally realistic expectations that Ayden will be no different than anyone else..lol |
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Post by char on Oct 28, 2009 8:32:17 GMT -5
(((((Jackie)))))) Bless your heart.
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Post by Jackie on Oct 28, 2009 8:36:17 GMT -5
as well you should have Myria!  |
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Post by elizabethsmom on Oct 29, 2009 10:23:48 GMT -5
although my girls are only 2 1/2, i do understand what you're saying. Just 2 weeks ago I was taking pictures of my 17 year old twins and we were talking about it being their last Homecoming (they're Seniors in High School) and how there will be so many "lasts" this year. Although i know the babies can go to the dances, etc., it does sometimes make me think of all the things they won't do. And it does sometimes hurt my heart. Like you, I can't imagine Elizabeth or Lily without DS, as they wouldn't be who they are, but that doesn't mean I don't occasionally mourn that dream we all had before they were here.
I too have adjusted my dreams for them, and love them to pieces. But sometimes it's just there.
BTW, I think Barney is at our house to stay!!! My babies hadn't discovered him until my 17 year old's starting singing his songs from their toddler days! UGH! THAT I didn't miss from their youth! :-)
Sheryl
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Post by char on Oct 30, 2009 17:46:02 GMT -5
Abby loves Barney and sings along with him. I know that since I'm so far away, I miss things when they happen. I rely on my son who calls often. He's wonderful about reporting the happenings in the life of the little girl who hung the moon and the stars for me. However, I have to say, "Well when she went to the dentist, what happened there?"
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&
Susan, Proud mom of Michael (32), Justin (25) Emily (22ds), and Jordan (20).
is starting to develop, go to movies and little dances with friends, and I can't help but think how it would be for Adam, or if his sister would actually let him tag ;D along if he hadn't been born with Down syndrome. But then sometimes I think they have a better relationship then most kids in her class that have siblings with no disabilities. Adam may not go to dances, movies and parties, but they sure goof off good at Barney songs together.
