Tuesday, June 14, 2011

What is like to be a mother to a child with CP

Some of you would have no idea what is like to raise a child with cerebral palsy or any child with special needs. I honestly think it takes a special person to raise these children. It is far from easy. It is emotionally and phyiscally draining. It is stressful. You cry more than you want to. However, life is also very rewarding and makes you appreciate things like you never knew you could. You literally get beyond excited at every single milestone and progress they make. My husband just doesn't get it and thinks I am wierd when I get so beyond happy for him. I beam! I have to tell everyone. I blog about it! I think I deserve the happiness I get from it after all I am his mother.

It involves therapy and Dr.'s appointments...lots and lots of appointments. I used to write all his appointments in a little calender and one year I had counted them. I can't remember the exact count but I am pretty sure it was close to 300 between the age of 1 and 2 years old. It was a bit insane. I also worked part time and don't even know how I did it. I was sleep deprived and always exhausted but I did it. He didn't ever sleep more than a few hours at a time and he was cranky!(cranky doesn't even describe him) He had either therapy or a Dr.'s appointment every week day and many days he had multiple appointments. I probably did it to myself but I have always wanted to do everything I could for him. Once he turned 3 Early Intervention stopped and he went to school full time and received therapies there...thank goodness! I really needed a break after three years of constant appointments.

I of course started working full time since he was in school so life never let up for me! Now that he is 8 life is a little less hectic. He still receives therapy at school and we have crossed some major hurdles that required many appointments. His hole in his heart was closed. His major hip surgery was out of the way. His eye surgery was in the past and most recently his heal cord and hamstring lengthenings were done. I am pretty sure he will not need surgery for at least a year. I am striving for two but I am unaware of what may happen or what else he may need. If a new procedure pops up that he would benefit from I may not be able to help myself but for now my motto is 'no surgery for two years!' Three in one year were enough for me!

For now I do bring him to additional physical therapy which is 40 minutes away and to hippotherapy once a week which is also about 40 minutes away. I do this all for him. Sometimes I do not want to go. Sometimes he doesn't want to go but we do it and have been doing it for a very long time. He has rode horses since he was 3 years old, year round. I am getting tired of bringing him especially since it is on Saturday morning. My husband recently told me I don't have to do it. I can stop. I don't have to make him ride horses for the rest of his life. But to me I do have to. I do it because I think it has helped him gain trunk strength, walk with a better gait, and because he actually enjoys it. I can't even imagine not doing it. It is just part of our life. It is offered and I would feel like a bad mother if I didn't do it. Maybe one day I will stop but not yet.

Raising him causes me a ton of stress. I think raising any child does. Who knew?! It is more my fault due to my personality. I constantly worry about him. I constantly think i don't do enough for him. He is also heavy! He can't stand on his own. He can't walk up steps even holding onto him. He can't get into his walker or wheelchair on his own. He can't go to the bathroom on his own. He can't just go get snack or a drink on his own. We have to do everything! Sometimes I go a bit nutty when I am am with all the kids all day because I feel like one of them is always asking me to do something or get something~and I mean constantly! It puts a toll on my body. I lift him constantly. When he is around my brain is non stop partly because he doesn't stop talking or asking questions and partly because when he is quiet and playing on the computer and I am thinking he should be exercising or walking around and I blame myself for letting him have some down time. I am working on it!! :)

One thing I am good at is taking it day by day. I honestly don't look into the future. You just never know. I never knew he would get as far as he has gotten. He was blind as an infant and today he can see. He still has issues but I thought I was going to have to learn braille. Taking it all day by day and enjoying his progression and getting excited to see him ride his bike when he couldn't ride his bike two months ago makes me happy. I enjoy him like I enjoy my other two children. I don't constantly think about their future and what they will do for a living and how far they will go in life or if they will ride a bike one day. I am glad I am able to do this. It is my zen.

So in the end raising him isn't all that different from raising a typical child. We have more surgeries to deal with , lots of appointments, some extra stress and saddness but there is also extra joy and gratefullness of what our children can accomplish! I can't imagine Brendan any other way. He is Brendan to me and usually I don't look at him any differently. If you start to compare and think about what they 'can't' do then life can get a bit depressing. So I try not to do that because he is amazing just the way he is and I was meant to be his mother.

13 comments:

Amy said...

Hugs! I feel ya. I am right there with you! I could have said all that myself. But, the joy is immeasurable when they do something totally awesome! Even the small stuff. Emma makes me a better person, I swear.

its all gonna burn said...

AMAZING POST! (and i didn't even read it all, sneaking this in at work) what i did read was super therapeutic for me, even as a dad. my son is 6, i found your blog by searching for info on SDR. these CP mom blogs i've found really give me hope and healing. thanks

Sweet Baby James said...

I think I could have written every word of this post. Especially about the surgeries and appointments. WOW! great post!

Unknown said...
This comment has been removed by the author.
Unknown said...

As a former child with CP (I am a 42 year old woman), the one thing I wish my parents could have done for me is to have gotten psychiatric help for themselves. If they had seen a therapist to get over their perfect-child fantasies, their rage at not getting their perfect child, and their resentment of me for not being thier perfect child, my life would have been SO much improved. No matter what I accomplished physically, academically, or socially, they were never able to get over their disappointment. My mother died at 47 and complained about what a disappointment I was almost until the day she died. So, do your child a favor and get some help with your issues. It sounds as if you have some real problems with perfectionism. I guarantee that your son will be fine; he knows no other way to live. His biggest problem is not the way he is, but the negative ways others perceive him.

I also want everyone who reads this to know that all that surgery comes with some very long-term negative side-effects. I walked unassisted for the first time at 10 but have been in pain every day since I was 13. It's simply a matter of forcing our bodies to do what they do not naturally do. Just like if you walked on your hands all day. You could do it, but, it would hurt. It comes with a cost. My back, feet, and hips hurt constantly. I was never in pain when I used a wheelchair. I often wonder if it was all worth it. When does your child get to be just a child? All those damn doctor's appointments suck up his whole life. The stress on you is bad but, don't forget the stress on your child. Your child's doctors will never admit to you the negative effects of thier work. All they care about is "YOU MUST WALK!". When walking is terrifying, uncomfortable, painful and dangerous, it may not be worth it.

Brettina Mendoza said...

"Children who has CP needs special attention, love and care. I salute all moms like you who has given almost their time and efforts to these kind of children. I wish you all the best and may you continue to inspire many people always.

Regards,
birth injuries lawyer"

April said...

My Mom is my rock... sometimes I think she's a rockstar. She's just that amazing. You all are!

cristina fleitas said...

Hi, can I email you???? I have twin boys one with CP. just had questions. im here balling in tears at work. I TOTALLY FEEL YOU. its crazy how I can relate so much. thank you for this post, bless you arne your family.
my email is
mscristy305@gmail.com

We take it day by day said...

So sorry I just saw this. My life is insane right now. I have 5 kida now! Stephviveiros@gmail.com

We take it day by day said...

I am so happy to hear you think that about your mom!

We take it day by day said...

I appreciate your take on this but I don't need my child to be perfect. I tell him I am proud of him daily. I just want to try all the options available for his sake. I want him to live an easier life and possibly care for himself one day but if not that is okay too. I am not perfect and he doesn't need to be...I love him just the way he is.

We take it day by day said...

I appreciate your take on this but I don't need my child to be perfect. I tell him I am proud of him daily. I just want to try all the options available for his sake. I want him to live an easier life and possibly care for himself one day but if not that is okay too. I am not perfect and he doesn't need to be...I love him just the way he is.

We take it day by day said...

I am so happy to hear you think that about your mom!