Hey nice to finally find another parent of a child with a spinal cord injury. My son is a paraplegic and has a T-3,4 spinal cord injury. He is 11 years old. We live in Fayetteville ar.

Nice to meet you Johanna.  Just really want to network with other folks we live in a small town and she doesnt really socialize with other kids in chairs.  Has your son been in a chair for a while?

well my children and I were in a car wreck in 2009 so Keven, has been in a wheelchair for three years now :(. I still can't get used to the idea of seeing him in a chair. I get very depressed sometimes but I try not to let Keven see me. What about your daughter? when did she get injured?

Cali was dianosed with Leukemia in Oct 2010.  2 days after daignosis she lost feeling in her legs.  She had a tumor (from the leukemia) pressing on the spinal cord. She's Para also. The leukemia is well into remission - but her legs havent come back, and of course I was told it would take a miracle...So totally understand the depression, frustration, anger, etc. Does your little guy go to school? 

I'm sorry to hear about what happened to Cali. These type of situations shouldn't happen to little kids it's just not fair to them. Keven was in the hospital for about 8 months and since he also sustained a brain injury getting back to school has been quite an adventure. I'm very fortunate that his school supports him in every way possible. Keven is a 5th grader and will be moving on to middle school. This is going to be another scary transition for us. They also told me the same thing about Keven that only a miracle would allow him to walk and I'm still waiting on my miracle. It gives me hope and lets me keep moving forward. 

I am sorry too. Cali is in 4th grade and very active at school as well, since she is a cancer survivor she's got a lot of fun stuff she can get involved with to "carry a message" I do believe we will see at least a lot more advancement towards a cure for our kids in the near future if not more.  Its all about our prespective, were we ready to say Goodbye?, I know I wasnt. So at least I have her here with me...thats what I need to remind myself when I get down in the dumps. Our kids sound so similar , Its uncanny. Both SCI at age 8(?) Both stayed in the hospital for a long time...she was in there for 7 months straight, 6 months of Chemo ---and 1 month of PT/OT. I'll try to get a picture up soon :) know you are not alone sometimes that helps.

Natalie you have no idea how much your words motivate me. It's so difficult caring for a disabled child. Keven has had so much support from his school. They even held a bike-a-thon to help raise funds to purchase a handcycle for him. I would love to see pictures of Cali. I posted a picture of Keven and I so that you could a face to the name. Please keep in touch it's nice to know that there are other mothers out there in my same situation and that I'm no alone in this. My husband couldn't handle the situation and left us. I take Keven to Schriner's hospital in Chicago they specialize in Spinal Cord Injuries and they take such good care of him there. Keven is on medicaid and needless to say it don't cover much. So when we go to Schriners they take care of his every need and I don't pay anything. Like I said please stay in touch. Hope to hear from you soon.

Oh --you havent heard the last of me LOL.  Thank you for your kind words I know youve been in it a touch longer then I have so maybe I can bounce some questions off you from time to time too? and same goes, if you EVER need to vent - shoot me a message, we can have a therapy session haha. I got Cali's pic up last night. I will work on adding more over time :)

I don't have a kid with scl., but I do know what it is to be a caregiver.  I took care of my mother that was in a wheel chair.  She had loss both of her leg due to illness.  It's not the same as taking care of a child with scl.  I'm here to tell you that caregiving is caregiving and it take a special person like yourself to do it.  You might live in a small community but now you belong to a large community that is willing to listen and support you, thanks to the Christopher & Dana Reeve foundation.   Thank God for parents like you.  Look at your wonderful child and give him or her a kiss for bring out the best in you.  Always remember it's not what we do that define us it's who we are that define us.  Feel free to hit me Theresa E. 

Reading your story is very up lifting and your sweet daughter Cali sound like a little fighter.  You should look at the web site www.welovecola.org it's a non-profit organization that was found by Missouri a cancer survivor.  Missouri has dedicated her life to support cancer surivivors and those who are going through cancer treatment.  When visiting the site look at all the sub titles (APCH) is A Place Call Home that is a primary community project for the COLA organization.  APCH will provide a home for women that need caregiving services while going through cancer treatment for free.  Missouri also reach out to young people in her teen corner.  I know personally that Missouri is looking for ways her organization can support parents that have very young children that have cancer or a cancer survivor.  Missouri will love to hear your story. I was touch by the simple fact that you were not ready to let go.  So many people need to stay with the fight and they need people like you to remind them what they are fighting for.  Stay strong and stay encourage.  Everyday is a special day and it's another day that we live to advance toward a cure.  I hope you stay in touch with me.  I will love to her more about your Cali. 

I love that picture of you and Cali. Yea I have been doing this for three years now and it is so difficult. The worst part is that we also live in a pretty small town and healthcare is not the best. Everytime Keven develops something new I have to do research on my own and try to figuere it out on my own Dr's outhere are not very helpful. One thing you should always know is that you are Cali's advocate and it's up to you to make sure she gets what she needs. It don't matter who gets mad or upset trust me I have done a lot of this for Keven. We have to fight for our children. I started school already so it might take me a while to reply sometimes but I'll get to it. Like I said before I really enjoy chatting with you and if you ever have any quesion don't hesitate on asking. I sent you a friend request, hope you recieved it. Tell Cali I said hi 

After reading your story about your disabled child Keven I felt joy.  I know you might be asking yourself, how can someone feel joy after reading my story?  It bring joy to my heart when people come together and support others.  It sound like you and Keven is surrounded by love.  Getting the support from Keven school speaks a lot about how special you guys are to others.  I know how difficult it is caring for children with out the support of a father.  My ex- husband left me all alone to raise our daughter and his son from another woman.  It was very difficult for me during those times.  I know it must be even harder for you.  Looking back over my life seventeen years later. I like the people who I see reflecting back at me when I look into the mirror.  I'm a very strong woman that has over come some very difficult times.  I have two beautiful young adult children and very proud of their success.  You know the Lord will remove anything and anybody that's not suppose to be in your life.  For me it was my ex-husband.  I'm not telling you its a good thing that your husband left.  I'm simply saying for you to be strong because your child needs you.  You are not alone you have a lot of people from the Christopher & Dana Reeve Community that will be praying for you and Keven.  I'm also going to be praying that your husband will come back home.  Remember when you are at your lowest you are never alone.   The Lord is aways with you and Keven and when you feel like you guys can't go on that's when the Lord will carrie the both of you.  I speak from experience!!!   I would like if we can stay in touch.

Theresa, thank you so much for taking the time to reply to my comments. I would love to stay in contact with you as well. Indeed, it is very difficult to be a single parent and it gets more complicated when there is a disabled child involved. I'm very blessed because I still have keven in my life regardless of the circumstances. I fight for him regardless of who gets upset. It's now that I value the simplest things in life like being able to tie my own shoes or just being able to shower on my own. This has not been easy for me, there are days where I completely fall apart and just want to give up but I know, that is not an option for me. Once again, thank you so much for your words trust me this is not an easy job.

Hi ladies, I'm a single mom also. My son is 5 yo. SCI at t1 from car wreck March 2008. Just wanted to reach out to you all and say hi. We are approaching the 4 year mark and luckily (?!) Ethan was only 2 at time of injury so this is more 'normal' for us than if he were ambulatory. We are in Knoxville TN and crazy as could be, Ethan has a friend who is also 5 with an SCI at t12 from car wreck 2 years ago who lives 20 minutes from us. Such an amazing/confusing blessing. reach out if you want to talk, I have many more strong days than weak.

Hi Theresa and Hi Karrie- thanks for joining in the convo.  Omg, that is very cool for Ethan and the friend too. Not much going on in my world today.  We are expecting Cali's new wheelchair this monday - hopefully she likes it :)

I am here.  Have daughter w/SCI at 13 years and just turned 17 last week. We live in rural community, limited sidewalks and no resources for SCIs. We travel 2 hours for mental health therapy.  I know what its like, also

Welcome Vikki, I am withya- it's 60 miles to any specialists we may need ( and we all know theres many)  Cali has a great phys therapist here in our town, he's one of the few who have re instilled hope in us.  Right now I am working on getting AFO's-- that cant be done here in town. Interested in  a handcycle -  Johanna can you give me an idea of what kind of costs I might be looking at?  TTyl ladies, hope all is well with all of you.

hello everyone :)  My name is Lana and i have a wonderful 16 years old son, who has C1/C2 quadriplegia since he was 6 years old.  
My son, Max, used to be always so cheerful and happy kid, and when he got sick I was so scared that this difficult condition will brake his spirit.  
I have to admit, that first 3-4 years were the most terrifying experience for me, I was dealing with my pain, the pain of looking at my son loosing any chance of having a childhood, friends and have fun.   He used to go out at least a few times a week, but now, he just doesn't anymore. last time he was out, I think it was doc's appointment about 1 year ago. 
I wouldn't say that he lost interest in life, no, he actually is interested in life, but only virtual life.  We bought him a special camera that allows him to control computer with just his chin and now he just spends an entire day on the net.  
It's really hard to explain what I feel and what he feels.  I always talk about him being able to move his hands again, I just really truly believe it will happen.   Some people are saying that I shouldn't encourage him, it just will bring disappointment, but I just believe that we need to believe to survive.  
My main horror thoughts were and are always about what will happen when I become old or die... My poor son will be alone!!!!!   So, I am praying and hoping that by some miracle he would be at least able to breath on his own and able to move his arms.
Sorry for such a long reply, just been a very long while since I even spoke about my son's injury and have so many feelings that come all at once.

Hi Maxysmom, Glad you stopped by here. I was missing the comradarie (sp)  I too was feeling it today.  I see my child at school everyday, and I have to leave her there in her chair to fend for herself, I worry that people wont play with her and that she is feeling alone.  Today I asked God, as I sometimes do, why not me, why her?  I have lived and done plenty in this world to have such a fate happen to me, but her?? Why?? Its a big question, and I am told the answer will be revealed in due time.  I agree, we have to hold on to any hope there is out there! Be in today- but hope tommorow will be better :) Thanks again for reaching out Love, Natalie

Hello Natalie. Thank you for a worm welcome.  It's extremely hard to be a parent of child with any illness  that changes their lives so much.  But, what keeps me going all these years is a thought that he IS alive, next to me, talking to me, laughing and smiling.  Sometimes I think maybe I am selfish for being happy that he is at least survived and is alive,  and has to suffer through this horror of being 100% dependant on people next to him for everything...  Specially when he let his emotions go and starts talking about death.  But then, we talk and at the end we begin to hope again that some day soon scientist will find a cure.  He even  jokes that he will become Robo Max, he doesn't believe that there will be any natural changes, but something like a micro cheap that lets him connect his brain to his body :)  
Unfortunately Max doesn't go to school, he is on vent 24/7 and he gets very tired of seating in a chair for longer than 3 hours.  I think if he could go, in NY parents are allowed to stay with vent. dependent kids.  But, he doesn't want to and can't :(
"Today I asked God, as I sometimes do, why not me, why her? "  I am completely with you on this one.  I been asking this question every day since I first found out my little boy is a quad.  Why... it not going to change anything if we ask, so why are we asking and who... well, I guess we just do, no point of analyzing it, although i saw some people try to do it for some reason. 
Lets just hope that some day all people who suffer from paralyses would be able to walk again. 

I've been a para for 30 years. Not sure of the injury level, but I'd like to suggest wheelchair sportscamp in MN. It's not only a great place for an exchange of information. What you learn from the group of campers is better than all the books you can read. Camp is help in June. You can look them up at  Ironwood Springs Christian Ranch dot com or MiracleLodge dot com.   Bob "Bart" Bardwell also a para runs the place and has been holding camp for many years.
Here in MN the Courage Center is the place people drive a couple hours every weeekend during spring to bring their kids to Track & Field. Not sure about AR. I hope it helps.

PEACE 

Hi Moms & Dad's~
I am a Reeve Foundation employee.  I was wondering if you would be interested in a Private group that would be moderated  by a Reeve employee.  We could make it a closed group with permission to join necessary.

The flip side of that is you are getting good suggestions from others. 

I would love to hear your thoughts.

Hello,
I have enjoyed everyone's post. My daughter is 12 years old and has been in a wheelchair for 3 1/2 years.  She was hit by a car on 12/31/2008.  She suffered a T12 SCI. She was nine years old when it happened. She has been a real trooper through all that she has had to endure.  She is just amazing.  We live in a small city in South Alabama....we also have trouble with doctors understanding Megan's needs. 
I really appreciate reading all of your comments...it helps me know that we are not the only ones who have issues to deal with.

Kim

It is so good to see all the parents posting as well as sharing with each other.  I was a parent peer mentor for our school district for a few years, assisting other parents navigating the system with their children with disabilities.  I know and understand first hand the isolation that you each describe.

Have you visited the Paralysis Resource Center?  I have written much of the content in the Children & Teens with Paralysis.  Please take a look and let me know if there are other topics you are interested in and I will make a list for new content. http://www.christopherreeve.org/site/c.mtKZKgMWKwG/b.7550431/k.3914/Children_and_Teens_with_Paralysis.htm

Know that you are not alone and that others here understand.

My son has a SCI -- he's 17, injured at 15 years old. He's an incomplete quad.

He also likes life online better than "in real".