Families

Posted on: Sun, Dec 30 2007 7:08 PM

Posted by: aeonian Posts: 1

Hi, Boo-Bear.  You're definitely not alone.  My mother has CNS lupus.  She was diagnosed when I was ten, so I remember what it was like before and after...and sometimes when I was growing up, she would be in the hospital, or knocked out on a weekend because of chemotherapy, or just not not able to get out of bed for a few days.  I didn't know anyone else with a disabled parent when I was growing up (actually, I still don't), and there were definitely times when people would say things to me and I was like, "Okay, you don't get it at all."  If you have any questions, or if you want to talk, feel free to send me a message.  And I hope your mom is doing well.  :)

Posted on: Sun, Dec 30 2007 7:51 PM

Posted by: Kara Posts: 2,333

Hey Boo-Bear! Just wanted to say hi again Hope you enjoyed the holidays! Did you do anything fun during your break from school?

Posted on: Thu, Jan 3 2008 10:25 AM

Posted by: Meg Posts: 54

I am not a child of a disabled parent.  Well, maybe my mom is a diabetic.  I have a two year godson that spends a lot of time at my house.  It has become a natural thing for him as well.  When we go places he knows to grab on to my chair or when he is sitting in my lap and I am driving it, he knows where to hold on to be safe.  He also loves to climb in and on my chair.  He has seen me get out of my chair a few times and is now starting to come up to me telling me "help out you" and then proceeds to try to undo my feet from the petals and then raises his hands for me to grab onto.

I'm sorry this really has nothing to do with the topic but when I saw others experiences with their kids, I just had to share

Posted on: Thu, Jan 3 2008 11:07 AM

Posted by: sharonr Posts: 397

Meggiemoo84:

I am not a child of a disabled parent.  Well, maybe my mom is a diabetic.  I have a two year godson that spends a lot of time at my house.  It has become a natural thing for him as well.  When we go places he knows to grab on to my chair or when he is sitting in my lap and I am driving it, he knows where to hold on to be safe.  He also loves to climb in and on my chair.  He has seen me get out of my chair a few times and is now starting to come up to me telling me "help out you" and then proceeds to try to undo my feet from the petals and then raises his hands for me to grab onto.

I'm sorry this really has nothing to do with the topic but when I saw others experiences with their kids, I just had to share

i also don't have kids, but have two nieces, and many friends kids, who have grown up around me, and though they ask questions when they are young, sometimes the same ones over and over, they have never acted scared or skittish in any way, in fact, they've grown up in my lap, learning where to hold on, jumping in my lap when they get tired of walking at the mall, stealing my chair when i'm not in it . in fact, my 7-year old niece said this Christmas and last Christmas that she wanted a wheelchair for Christmas because it's fun, and this year, i said, nah, i don't think that makes an appropriate gift, so she wants mine when i get a new one. babies are fascinated with it, even strangers, babies just out in public or whatever, play with the spokes, try to push me, etc, etc. i think kids are just so resilient and accepting at a young age.

that being said, one of my best friends mom has MS, so he grew up around her progressive disability, and he is one of the most generous, kind, compassionate people i have ever known. 

Posted on: Thu, Jan 3 2008 7:20 PM

Posted by: Angelrider Posts: 12

 Hi there!

You are not alone. I have two children, ages 5 & almost 4 so they're a little young to chat with you, but...I have Cerebral Palsy & Fibro & use a wheelchair all the time. It's all my kids have known, so it doesn't matter to them at all. In fact, sometimes they still think it's cool to get to ride around on -- & almost drive -- Mommie's wheelchair. 

Posted on: Tue, Jan 29 2008 8:00 AM

Posted by: Sweetie's Mom Posts: 204

Hi Boo-Bear.

I'm sorry I didn't find your post until just now, but I'm glad i found it after all. I am a disabled parent with Spina Bifida and my daughter is 5 years old. I wear leg braces and walk with the aid of a walking stick. My daughter has known me no other way, so she's very used to me and doesn't seem bothered by my disability. I do wonder how her peers will react to her (and me) when she gets to public school, though!

I wonder if your mom was diagnosed recently and/or if there was a time when you knew your mom to be healthy? That, I'm sure, would be a huge shock for you - a big change to get used to. Your mom used to be one way, and now she's not the same.

I'm so happy to see all the responses you got to your post and I hope you're taking comfort in knowing you are, in fact, not alone at all. Please take care and come back to chat with us all as often as you like. Disaboom is a wonderful, supportive place for disabled people, their families, and just about anyone who's interested in learning more about the disabled lifestyle.

Take care!

Amy

Posted on: Tue, Jan 29 2008 9:29 PM

Posted by: lani Posts: 13

Hi! Everyone!

Thanks for posting to me, it makes me feel a whole lot better about having a Disabled Parent. My mom struggled with Thyroid Cancer for about two or three years, and on top of that, she has Fibromyaliga. Which makes everything worse. With the Cancer struggle, in recovery, she noticed she couldn't breath as well as she used to. Afew months passed until she went to a doctor, and he found out he either cut or nicked the Pherenic Nerve, leading straight to her right lung, paralyzing it. About two years later we have to move. Which was very stressful to us. So, we moved in with what we thought was a nice person and her child. I'm not going to mention names, but she was a roomate from heck. On top of all this, she moved out at the end of her lease, leaving /us/ in the dust. So, we frantically search for a roomate, or someone to move in with. We couldn't find anybody, so we say were moving in with my Grandmother in oregon. Mom keeps searching on the internet. Finds this add that says basically that we can move in with them. Go Craigslist right? No. She turns out to be a total freak. Blaiming our double ex roomate for her moving out. Now, were back to the drawing board. Do any of you guys have advice for me? Were a diamond in the rut here!

Boo-Bear.

Posted on: Tue, Jan 29 2008 9:36 PM

Posted by: lani Posts: 13

Angelrider!

There's this book called Rules. In it, is a kid named Jason. He's a normal kid, except for the fact that he has Ceberal Palsy. He uses a wheelchair, too, but uses a communication book. He lives like a normal person, but, sadly, needs to go to classes to find out how to handle his emotions better and better. The main charactor, decieds to ask him to the dance, he doesn't exactly say yes. But afew hours into the dance, almost at the end, he comes. So the main person says sorry for doing something she did.

Anyway, it's a good book. I think you should totally read it. 

:-)