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Forum: Children with Special Needs

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  #1  
April 23rd, 2009, 10:38 AM
iamkc's Avatar Platinum Supermommy
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I KNOW that other parents have far worse going on with their kids, but I can't help but feel sorry for the teeny things that we'll miss out on with Milo. Again, I know that the stuff he is going through isn't as bad as some, but still.

I was thinking about his first birthday. I was looking at Kannon's pics and he was running all over the place, playing on toys, putting new boots on, covered in chocolate cake, etc. Milo probably can't/won't even eat the frosting, and won't be able to play with most toys, etc. The really stupid part is that I feel like, when they're older, they'll see the discrepancy in pictures of the "special moments" on their birthdays and wonder if I cared more about Kannon since he's my first. I'm already sick over THAT. I wonder about it a lot. Sorry.
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  #2  
April 23rd, 2009, 11:49 AM
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I don't think it's silly at all. I feel like a poser some days thinking of Danny as special needs, because comparatively he is extremely lucky, but at the same time I have to accept and embrace the reality of what he does face. I was totally bummed at his first birthday - he wasn't mobile at all, didn't eat solid food, wasn't very tactile (had zero interest in even smashing the cake), etc. I looked back at all the fun stuff we did with Eric that Danny couldn't or wouldn't do and it just sucked.

I don't think they'll see the discrepancies as caring more for Kannon though, hon... Every kid is different, and they'll know there are differences between the two of them. There WILL be pictures, take as many as your heart desires, and capture the moments that do make the day special. I was bummed about the pictures of Danny's birthday beforehand, and I ended up with one of my all time favorite pictures of him from the day.

Hugs!!!
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  #3  
April 23rd, 2009, 12:46 PM
Ditzzy's Avatar Stupid Lamb;)
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This makes total sense. I feel the same way.

I took Ava out with me to get Christian on the bus, and watched Christian running through the grass, I though "what I wouldn't give to have Ava running through the grass with her brother". Ava couldn't eat her cake either. No solids yet.

((Hugs)) Things will get better.
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  #4  
April 23rd, 2009, 12:50 PM
stacyp's Avatar Mommy to Andrew & Luke
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Totally know what you mean. But we are just going to takes tons of pics & even if I have to smear icing on his face myself, I will. It will be a special day because it's his first birthday & we have come so far from the beginning. I am already getting rushes of emotion about the day he was born & everything that happened. I have a hard ball in the pit of my stomach but it will be okay. We are celebrating a year of miracles & blessings.

((HUGS))
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  #5  
April 23rd, 2009, 01:13 PM
quietsong's Avatar Just Another Slacker Mom
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Oh, Stacy, it really will be. I had a lot of those struggles too, just emotionally, coming face to face with everything that happened leading up to Danny's birth and the first days that followed. I was a horrible mess the entire second week of March, but all you can do is exactly that: focus on the positive, and on how far you've come!

And you know my PM box is always open for you to rant or vent, too.
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  #6  
April 23rd, 2009, 02:51 PM
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Stacy, I love how you said you were celebrating a year of miracles and blessings. I love that outlook. Look at what he's already done in his short life. That's a lot to have a party for!

((Hugs)) My PM box is open too
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  #7  
April 23rd, 2009, 03:30 PM
iamkc's Avatar Platinum Supermommy
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Quote:
Originally Posted by stacyp View Post
Totally know what you mean. But we are just going to takes tons of pics & even if I have to smear icing on his face myself, I will. It will be a special day because it's his first birthday & we have come so far from the beginning. I am already getting rushes of emotion about the day he was born & everything that happened. I have a hard ball in the pit of my stomach but it will be okay. We are celebrating a year of miracles & blessings.

((HUGS))
Thank you ladies! This post made me cry-I think that this is part of it. I feel like we've come so far in a year, but have so far to go. And unfortunately, I have this cloud of "what we were doing a year ago" hanging over my head.

Don't worry, I absolutely plan to make everything as special as I possibly can. It WILL be special! Milo will enjoy whatever we do, and if he just wants to try to eat paper (for whatever reason, this is the only thing he seems to open his mouth for regularly!) all day, it's his birthday, and so be it! I'll take pics of that.

I just feel like I'm going to be judged-I already am. When people look at pics of Kannon in his first year, we're in the woods, in the streams, camping, riding in wagons, etc. Milo...well, Milo's usually resting on a pillow. He doesn't give much variety for the camera! He'd have been voted off Top Model weeks ago. People ask why I don't do as many fun things with Milo. We TRY, but there's only so much we can do!!! I think that I just try not to cry, try not to look at them like they're idiots for actually asking me that question, and so on.

Thanks, ladies, for letting me ask. I'm just getting emotional over it all for so many reasons!
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  #8  
April 23rd, 2009, 07:24 PM
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Its not silly. There are days I think Joey isn't special needs. But then I look at his meds, his surgeries (past and future) his routine scans (for his whole life) and the effects his meds can have and the ones they've already had. I stop as I walk out the door and have to think if he needs a face mask. There are few pictures of him outside because if he needs a mask on, I can't put him down or he'll rip it off.

I have the opposite problem though as well. David is feeling we love HIM less because we are always running to appts for Joey and Melanie and he feels a bit left out. Homeschooling has helped some, and we have found some groups for him so we also are running places for him and that has helped some. But he has a hard time understanding that when Joey is in the hospital I'm there because Joey needs me right then and not because Joey is more important.
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  #9  
April 24th, 2009, 04:33 AM
stacyp's Avatar Mommy to Andrew & Luke
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Thanks ladies. I am so glad this board started moving again. I definitely feel like I am not alone & appreciate all the support.

iamkc, I hope you share birthday pics with us. I am sure it will be a wonderful day with your precious Milo. ((HUGS))
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  #10  
April 24th, 2009, 02:09 PM
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I've had times like that, too - but we just try to make the best out of it. When Kyle turned one, he was still in a bouncy seat, 2 wks out from having his g-tube placed (didn't eat). He could roll, sit, or do anything other than smile and shake/reach for a couple hanging toys. I made the best of it, and just decided that we were throwing him a real first birthday party - not an age adjusted one, or keeping it low key. I'm glad we did.

But then I would go to friend's parties, and it's more glaring - the discrepancy of how it was supposed to be. And it's sometimes a bit depressing. This year, Kyle turned 5 - and we had a big kid party. It was obvious kids his age were further along than him, but that didn't stop him from having the time of his life, and his friends were right there with him. I think for us, as time has gone on - he's starting to catch up. Not fully, but physically being able to do more. That helps
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  #11  
April 25th, 2009, 09:41 AM
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I'll happily make the cake still, get him age-appropriate gifts, etc. I can't WAIT, actually! I'm just worried more about having to deal with other people looking at photos. I'm goint to try to invite his OT service coordinator (with whom we've formed a friendship). She totally gets why he doesn't do a lot of stuff yet, and I feel like it would be more fun with someone who knows how to treat him at this age with his abilities. Plus, again, I just like her.

We have 3-D bear cake pans-large and teeny-that we used for Kannon's birthday. I still plan to do this, if time allows. It took 3 days to finish it for Kannon. I made hair, detailed the body, etc. But it was soooo cute. I'm going to do this for Milo, even though he can't really eat the teeny cake. Symbols, I guess. I have other cake ideas, too, but I just like those so much! Hmmm...I only have a month with a lot to do. Maybe today's the day to start looking for some of those supplies!

We're having trouble figuring out what to get him for his first birthday, too...
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  #12  
April 26th, 2009, 04:15 PM
stacyp's Avatar Mommy to Andrew & Luke
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Quote:
Originally Posted by iamkc View Post
I'll happily make the cake still, get him age-appropriate gifts, etc. I can't WAIT, actually! I'm just worried more about having to deal with other people looking at photos. I'm goint to try to invite his OT service coordinator (with whom we've formed a friendship). She totally gets why he doesn't do a lot of stuff yet, and I feel like it would be more fun with someone who knows how to treat him at this age with his abilities. Plus, again, I just like her.

We have 3-D bear cake pans-large and teeny-that we used for Kannon's birthday. I still plan to do this, if time allows. It took 3 days to finish it for Kannon. I made hair, detailed the body, etc. But it was soooo cute. I'm going to do this for Milo, even though he can't really eat the teeny cake. Symbols, I guess. I have other cake ideas, too, but I just like those so much! Hmmm...I only have a month with a lot to do. Maybe today's the day to start looking for some of those supplies!

We're having trouble figuring out what to get him for his first birthday, too...
I am going to try to find it, but when is Milo's birthday? Just curious because Luke's is 5/28.
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  #13  
April 26th, 2009, 04:40 PM
iamkc's Avatar Platinum Supermommy
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May 27th!!! They're birthday buddies...sort of! That's so cool!
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  #14  
April 26th, 2009, 04:48 PM
stacyp's Avatar Mommy to Andrew & Luke
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I reread your posts & thought it sounded like they were close. Pretty cool!!!!
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  #15  
April 27th, 2009, 11:25 AM
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I don't think it's silly at all, while Carter wasn't doing the same as his one year old counterparts, it was a HUGE celebration for us that he had his first birthday, while his syndrome itself is not life threatening, he had 3 surgeries his first year of life and we were glad to have that day, he didn't eat cake or frosting either, he barely cared about the toys.
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  #16  
April 27th, 2009, 01:56 PM
stacyp's Avatar Mommy to Andrew & Luke
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I'm still up in arms about what to get Luke. iamkc, what are you thinking of getting Milo?

I just got the L&L cookie jar a few weeks ago so we can start working on him putting objects in something. He likes sounds & lights so I think it will work well. I gave it to him early so we can start.
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Last edited by stacyp; April 27th, 2009 at 01:58 PM.
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