Comments for Parham.org http://www.parham.org Thoughts on Down syndrome, life, and other stuff Tue, 06 Jan 2009 00:37:23 +0000 http://wordpress.org/?v=2.6.5 Comment on They Lost Their Hearts in San Francisco by Betka http://www.parham.org/2008/12/15/they-lost-their-hearts-in-san-francisco#comment-7769 Betka Mon, 29 Dec 2008 02:38:52 +0000 http://www.parham.org/?p=316#comment-7769 I simply love this picture...thank you for sending it! #3 I simply love this picture…thank you for sending it! #3

]]> Comment on ‘Tis the Season… by Betka http://www.parham.org/2008/12/11/tis-the-season#comment-7768 Betka Mon, 29 Dec 2008 02:36:06 +0000 http://www.parham.org/?p=308#comment-7768 When asked what my favorite holiday is I always answer...Thanksgiving...not because I am so skinny that I could indeed eat an entire turkey -- especially the skin -- but because there is no pressure. There is no pressure to be sitting at everyone's table -- thank God for understanding families -- no pressure to get to the mall before it closes...no pressure to wrap presents that after they are opened get that "Oh...that's cool..." comment. And there is no holiday guilt...I'm supposed to smile and nod and host and cook and bake and wrap until the Martha Stewart bitch in me is screaming, "Merry F*&^ing Christmas!" instead of remembering that God sent His son to us, and we should be singing, "Happy Birthday" instead of "Jingle Bells"... I came across a song this year...an new one by Amy Grant...some of the words are... "I need a silent night, a holy night, to hear an angel voice through the chaos and the noise. I need a midnight clear, a little peace right here to end this crazy day with a silent night." The name of the song is...are you ready?..."I Need a Silent Night". It's my new favorite Christmas song...one that is appropriate for every day, really...We, well at least me, I get caught up in the "calendar" of everything...got a meeting this night and a rehearsal that night and a wedding on Saturday and gotta sing at Mass after that and Lauren has a soccer game and a cross country meet and how am I gonna get Joey from school when I am supposed to be over there doing that thing I don't really want to do but already said I would. I wonder sometimes what it would be like to be sick...that sounds morbid I guess, but I sometimes I wonder if things would get done if I couldn't do them. Of course they would...but they wouldn't be done by me. That is my purgatory...my way is the best way, right? Probably not, but until I am willing to buy into that it will never be "right"...maybe that should be my new year's resolution...to not always be right and allow things to be done "wrong". What could it hurt? Maybe I would feel less pressure...hmmm...maybe... When asked what my favorite holiday is I always answer…Thanksgiving…not because I am so skinny that I could indeed eat an entire turkey — especially the skin — but because there is no pressure. There is no pressure to be sitting at everyone’s table — thank God for understanding families — no pressure to get to the mall before it closes…no pressure to wrap presents that after they are opened get that “Oh…that’s cool…” comment. And there is no holiday guilt…I’m supposed to smile and nod and host and cook and bake and wrap until the Martha Stewart bitch in me is screaming, “Merry F*&^ing Christmas!” instead of remembering that God sent His son to us, and we should be singing, “Happy Birthday” instead of “Jingle Bells”…

I came across a song this year…an new one by Amy Grant…some of the words are…
“I need a silent night, a holy night, to hear an angel voice through the chaos and the noise. I need a midnight clear, a little peace right here to end this crazy day with a silent night.”

The name of the song is…are you ready?…”I Need a Silent Night”. It’s my new favorite Christmas song…one that is appropriate for every day, really…We, well at least me, I get caught up in the “calendar” of everything…got a meeting this night and a rehearsal that night and a wedding on Saturday and gotta sing at Mass after that and Lauren has a soccer game and a cross country meet and how am I gonna get Joey from school when I am supposed to be over there doing that thing I don’t really want to do but already said I would. I wonder sometimes what it would be like to be sick…that sounds morbid I guess, but I sometimes I wonder if things would get done if I couldn’t do them. Of course they would…but they wouldn’t be done by me. That is my purgatory…my way is the best way, right? Probably not, but until I am willing to buy into that it will never be “right”…maybe that should be my new year’s resolution…to not always be right and allow things to be done “wrong”. What could it hurt? Maybe I would feel less pressure…hmmm…maybe…

]]> Comment on Past to present to past… by TeamMak http://www.parham.org/2008/12/15/past-to-present-to-past#comment-7767 TeamMak Tue, 16 Dec 2008 14:13:37 +0000 http://www.parham.org/?p=310#comment-7767 Katie is lucky to have met you! I wish her as good an outlook on parenting a child with Downs as you have. And, thanks for the perspective...so relevant even to different situations...like mine waaaayyy out here on the friggin equator at Xmas! :) miss ya! love, sue Katie is lucky to have met you! I wish her as good an outlook on parenting a child with Downs as you have. And, thanks for the perspective…so relevant even to different situations…like mine waaaayyy out here on the friggin equator at Xmas! :)

miss ya! love, sue

]]> Comment on What To Do When You Have a Kid With Down Syndrome by Amy http://www.parham.org/2008/11/29/what-to-do-when-you-have-a-kid-with-down-syndrome#comment-7766 Amy Mon, 01 Dec 2008 03:45:16 +0000 http://www.parham.org/?p=288#comment-7766 As always, amazingly put Sean! I am constantly reminded about how much I have to celebrate with Ava in my life. She makes me, Sean, Reid and everyone else in her life a better person. Here's to exciting new horizons ahead. As always, amazingly put Sean! I am constantly reminded about how much I have to celebrate with Ava in my life. She makes me, Sean, Reid and everyone else in her life a better person. Here’s to exciting new horizons ahead.

]]> Comment on What To Do When You Have a Kid With Down Syndrome by Diane http://www.parham.org/2008/11/29/what-to-do-when-you-have-a-kid-with-down-syndrome#comment-7765 Diane Sun, 30 Nov 2008 01:38:03 +0000 http://www.parham.org/?p=288#comment-7765 Good advice - well said. You might want to include grandparents in there somewhere. We want to do all we can to help when we can. We can start with the things on the list - thanks for the reminder. Good advice - well said. You might want to include grandparents in there somewhere. We want to do all we can to help when we can. We can start with the things on the list - thanks for the reminder.

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]]> Comment on Perchance to Soar: Raising a Child with Down Syndrome by Parham.org » Blog Archive » What To Do When You Have a Kid With Down Syndrome http://www.parham.org/2005/09/28/perchance-to-soar-raising-a-child-with-down-syndrome#comment-7763 Parham.org » Blog Archive » What To Do When You Have a Kid With Down Syndrome Sat, 29 Nov 2008 07:35:14 +0000 http://www.parham.org/?p=4#comment-7763 [...] Read this [...] [...] Read this [...]

]]> Comment on Girl on Fire by SGillar http://www.parham.org/2008/10/04/girl-on-fire#comment-7759 SGillar Wed, 05 Nov 2008 05:13:44 +0000 http://www.parham.org/?p=260#comment-7759 dude, I have a very similar problem with my children. pick one and he has it, similar to the problem Diane had with her son. I really like the fire too and am amazed at how open it is and my goodness, I would never want to squelch it. Except with the child is acting like an a**. I would love to be that mom with the patience that never ends and has that tolerant smile on her face, like I see on your sometimes. But that person I am not. I am in unknown territory too and I had this great book about how to talk to children called the STEP book and the maids lost it. And an XBox controller. Thankfully the XBox red-ringed when I was 90% on Star Wars Lego (for the 2nd time). So I guess I'll never finish that game. But that's another story... Anyway... I really wish I could find that book. I mean, to have the answers in my hands and then so cruelly taken from me! Torture. I'm sure it holds all truths, yet my holy grail was just thrown out with the peas. dude, I have a very similar problem with my children. pick one and he has it, similar to the problem Diane had with her son. I really like the fire too and am amazed at how open it is and my goodness, I would never want to squelch it.

Except with the child is acting like an a**. I would love to be that mom with the patience that never ends and has that tolerant smile on her face, like I see on your sometimes. But that person I am not.

I am in unknown territory too and I had this great book about how to talk to children called the STEP book and the maids lost it. And an XBox controller. Thankfully the XBox red-ringed when I was 90% on Star Wars Lego (for the 2nd time). So I guess I’ll never finish that game.

But that’s another story… Anyway… I really wish I could find that book. I mean, to have the answers in my hands and then so cruelly taken from me! Torture. I’m sure it holds all truths, yet my holy grail was just thrown out with the peas.

]]> Comment on Girl on Fire by Betka http://www.parham.org/2008/10/04/girl-on-fire#comment-7758 Betka Wed, 22 Oct 2008 19:27:11 +0000 http://www.parham.org/?p=260#comment-7758 Hey, Aim...I came here to find a picture of Ava and Reid for the First Grade. I read them my story about them -- "Ava Who Always Smiled" and frankly, they loved it...which is cool...but I wanted to show them a picture to go with the names...ANYWAY...I read what you wrote, and you know -- somewhere down deep in that heart of yours -- that you had these same issues with Reid. Sometimes, and I'm guessing here, but maybe sometimes you think too much...that sounds mean, I suppose, but sometimes kids are just stinkers, plain and simple. She is who she is like Joey is who he is and Lauren and Reid and Christopher and Ethan and Luke and everyone else. I had anguish with Joey...and while he did not nor does he have some of the problems that Ava has, he still made me cry myself to sleep at times..."Why can't he sit still? Why does he throw up all the time? Why can't he be just like everyone else?" I know that there isn't a simple fix, but like Diane said, one day you will wake up and your children will be grown...I didn't get a medal, but I clearly remember Mom telling me in one of "those" moments when I was whining about not getting to leave my house..."It's not your turn. Didn't you learn anything in kindergarten? You have to wait your turn. Your turn will come, but you must be patient." Yuck! I hate that word... BTW...I never pray for patience...God will indeed answer your prayer with things to be patient about...pray instead for mercy...at least that's what I do. "Dear God...please forgive me for the sins I am about to commit..." because you will commit them...not because you don't love or care, BUT BECAUSE YOU DO! If you didn't care, you wouldn't be so hard on yourself. But that's another thing...I think as a stay-at-home mom we are conditioned to think that if our children aren't angels that somehow it reflects badly on us...never mind that they KNOW they aren't supposed to climb in the clothes at Farm and Fleet, but do it any way...never mind that you pick them up and put them in the lady's cart who had the audacity to tell you that you were too harsh when you drug them out for the fifth time, swatted their behind, and told them to sit down or else. But the best part is the look you get when you tell her she's right...call the police, I'll wait...oh, dear I'm off on a tangent... The point is this...you are the perfect mother for her...God knew you could do it, and He knew I couldn't. when I see you with your children, I am really quite honestly in awe of your persistance and patience. I don't have it in me...BUT YOU DO! I've seen it, I've cried because of it -- at your stellar ways and my inability to possibly know how on earth you do it all. I wish I knew more other than this...cut yourself some slack...and chalk it up to the "f*&Ked up Fours"! I love you lots! #3 Hey, Aim…I came here to find a picture of Ava and Reid for the First Grade. I read them my story about them — “Ava Who Always Smiled” and frankly, they loved it…which is cool…but I wanted to show them a picture to go with the names…ANYWAY…I read what you wrote, and you know — somewhere down deep in that heart of yours — that you had these same issues with Reid. Sometimes, and I’m guessing here, but maybe sometimes you think too much…that sounds mean, I suppose, but sometimes kids are just stinkers, plain and simple. She is who she is like Joey is who he is and Lauren and Reid and Christopher and Ethan and Luke and everyone else. I had anguish with Joey…and while he did not nor does he have some of the problems that Ava has, he still made me cry myself to sleep at times…”Why can’t he sit still? Why does he throw up all the time? Why can’t he be just like everyone else?” I know that there isn’t a simple fix, but like Diane said, one day you will wake up and your children will be grown…I didn’t get a medal, but I clearly remember Mom telling me in one of “those” moments when I was whining about not getting to leave my house…”It’s not your turn. Didn’t you learn anything in kindergarten? You have to wait your turn. Your turn will come, but you must be patient.” Yuck! I hate that word…

BTW…I never pray for patience…God will indeed answer your prayer with things to be patient about…pray instead for mercy…at least that’s what I do. “Dear God…please forgive me for the sins I am about to commit…” because you will commit them…not because you don’t love or care, BUT BECAUSE YOU DO! If you didn’t care, you wouldn’t be so hard on yourself. But that’s another thing…I think as a stay-at-home mom we are conditioned to think that if our children aren’t angels that somehow it reflects badly on us…never mind that they KNOW they aren’t supposed to climb in the clothes at Farm and Fleet, but do it any way…never mind that you pick them up and put them in the lady’s cart who had the audacity to tell you that you were too harsh when you drug them out for the fifth time, swatted their behind, and told them to sit down or else. But the best part is the look you get when you tell her she’s right…call the police, I’ll wait…oh, dear I’m off on a tangent…

The point is this…you are the perfect mother for her…God knew you could do it, and He knew I couldn’t. when I see you with your children, I am really quite honestly in awe of your persistance and patience. I don’t have it in me…BUT YOU DO! I’ve seen it, I’ve cried because of it — at your stellar ways and my inability to possibly know how on earth you do it all. I wish I knew more other than this…cut yourself some slack…and chalk it up to the “f*&Ked up Fours”! I love you lots! #3

]]> Comment on Girl on Fire by TeamMak http://www.parham.org/2008/10/04/girl-on-fire#comment-7756 TeamMak Sun, 12 Oct 2008 14:22:53 +0000 http://www.parham.org/?p=260#comment-7756 HI there! I don't think it's possible to extinguish. You have to roll with it (or at least strive for "semi-contained"). It's who she is. But, the trick is rolling with it while maintaining your own sanity, her safety and your whole familys' overall well being. Good luck with that ;) She's growing and changing. Always. These challenges will subside. But you will be due a HUGE medal at graduation :) HI there! I don’t think it’s possible to extinguish. You have to roll with it (or at least strive for “semi-contained”). It’s who she is. But, the trick is rolling with it while maintaining your own sanity, her safety and your whole familys’ overall well being. Good luck with that ;)

She’s growing and changing. Always. These challenges will subside. But you will be due a HUGE medal at graduation :)

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