Last post Fri, Mar 28 2008 11:29 AM by crazylegsBley. 17 replies.
Hi, I'm Boo-Bear, and I have a Disabled parent. And I feel like I'm the only one in the world like that. My mom, she has Fibromyaliga, and she has a paralized lung. So, are there any kids out there like me? Or am I the only one in the world, like how I feel?
Thanks for posting,
Boo-Bear
Hi, Boo-Bear. I'm a disabled parent, but my daughter's only 2 1/2 so I guess that doesn't help you much. I just wanted to let you know that you're not alone. Lots of kids deal with parents with disabilities of varying types. It's not easy for them (it's not easy for us either). Just to let you know you can still come here and vent if you want, and just know you have a lot of understanding ears listening here.
Thank you Whitney!!!!!!
That really made me happy enough to say, "Thank you ~ and nice to meet you."
Boo Bear
hello boo bear, welcome to disaboom.how old are you? i have a daughter who was 2 1/2 when i got hurt and had to be in a wheelchair. she doesn't remember me walking, so that is all that she knows. we had alot of fun and she would climb on my lap and wheel with me, go to the mall, concerts, play games, color do alot of things. you could look at it like you have a special mom because you do. it's nice to meet you, bye
Hey there Boo-Bear,
Just wanted to say that I think it's really cool you have the courage to post your feelings. You are definitely not alone and although a child with a disabled parent hasn't responded yet-they are certainly out there (as you've heard)! Right now our site is still growing so I'm not sure how many young people we have yet but it always helps to get different perspectives.
What types of things are hard for you because your mom has a disability?
~Kara
Hello, you are not the only child/teen/adult out there with disabled parent/s. Recently I have been embracing and understanding the significance of my parents in my life. My mom has spina bifida (and has many other chronic conditions because of that) and my dad is deaf/hard-of-hearing (has a hearing aid and lipreads though he has a 50+% hearing loss). My life has definitely been impacted because of their disabilities: having closed captioning, only automatic vehicles, latex-free gloves and balloons, etc, etc, etc. It's funny because my parent's disabilites are pretty much invisible to the general public, though they clearly are not.
Best of luck with your idenity as a child of a parent/s with a disability/ies. Hope you find others with whom you can connect.
I am the parent with a (the) disability; I thought you might like to read a story my daughter wrote for a class assignment. Sit back this may be long, but it is worth it.
Ariel xxxxxxx
Ms. xxxxxxxxx
English P.8
20 November 2006
My Dad Was Paralyzed?
On May 10, 2002, I woke up in the morning and I began doing the usual routine for getting ready for school. I first changed my clothes then I began to do my hair in the bathroom. When I walked down the hallway I heard low voices mumbling in the living room. At first, I just ignored it because I was so concerned about how my hair was going to turn out; however, a few minutes later I heard crying. I walked in the kitchen and found my aunt hugging my mom. Something was wrong because my mom wasn’t at work and she looked as if she had been crying for hours. I asked her what was wrong, she said, “Your dad is in the hospital.” I felt like someone had just turned my brain off because I was in complete shock. Then I asked my mom why and what happened? She said, “He is paralyzed.” “Paralyzed!” I replied. At only nine years of age, I didn’t know what the word paralyzed meant. However, as confused as it all seemed, I just went along with it. I soon found out what paralyzed meant.
My dad worked as an underwater construction diver. One day, my dad went in the water for a normal diving job. After his dive was done and everything seemed fine, he came out of the water; he took three-steps and collapsed to the ground. He was paralyzed from the chest down. When breathing the air, while underwater, little air bubbles formed in my dad’s spine and pinched a very important nerve, the spinal cord. Immediately, while still on the job-site, he went through many processes trying to help him, but he still ended up at the Long Beach Memorial Hospital.
When you hear the word hospital, what do you first think of? Some people think of shots others maybe check-ups but my memory is different. Four years ago, I remember running down a long hallway looking for a room number 176. When I got there, I had seen, felt and learned things which will never fade away from my memory.
My mom had asked me if I wanted to go to the hospital with her and my aunt Lola or if I wanted to go to school because it was the last day of the SAT’s testing week. Still shocked, I told her that I would go with her to the Long Beach Memorial Hospital. On our way to the hospital, it was quiet and sad. To me, this seemed as if it was all just a dream and I was hoping someone would wake me up, but when we got to the hospital it wasn’t a dream; it was a nightmare I could not wake up from. We walked in the hospital and made our way to the elevator to get to the seventh floor. Just as the doors opened, I saw my other two aunts and my uncle, standing there with tears in their eyes, waiting for us to arrive. Everyone came and hugged me saying that everything would be ok. Looking around, I felt lost and everything looked like a blur. All the adults knew what had happened; this made me feel even scarier because if they cried then I knew the word paralyzed wasn’t good.
Once I heard the words, “Room 176 down the hall,” I ran to the main entry doors waiting for the buzz to let us in. Running down the hallway seemed like it took forever but I found room 176. Looking into the room, I saw my dad in the hospital bed talking to a doctor. Nurses told me I had to wait until they were finished talking. For those three minutes, waiting seemed like hours. Just as they finished talking I ran in, I asked, “Daddy what happened to you,” He told me he did not know but he would try his best to pull through it.
While I was in the hospital, my aunt Lola explained everything to me, so that it would be easier for me to understand. It was a lot for me to take in all-at-once but I got through it. Lola told me to act strong because it would help my dad pull through it emotionally. While she told me this, I fought through all my tears with smiles and I kept telling myself that everything would be ok. Many people looked confused about how I could just sit there not cry or even really doing anything; by me doing this, I knew, it helped my mom because I would just keep smiling and comforting her.
After one-month in the hospital, my dad came home. This became hard for all of us; because of his job he was always gone and now that he came home he wasn’t the same. Everyday it got harder to see my dad struggling, frustrated, upset and tired. Never did he give up, so I tried my best to keep him happy and to do anything for him. Now it seemed so weird to have him home. At first, I didn’t like it, because I never knew my dad. I would just see him like once a month or every other weekend.
Although we all struggled, it taught me a lot about my dad and about life; how in just one moment you can lose almost everything and gain so much more. My dad and I learned about each other and I did get closer to him. We have had our good times and also our bad ones, but I still try to be there for both my mom and my dad to help them and I try to be their support system to pick up the little pieces they drop when they fall apart.
Ariel
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. :)
Hey Boo-Bear! Just wanted to say hi again Hope you enjoyed the holidays! Did you do anything fun during your break from school?
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
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.
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.
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
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.
