Wednesday, October 1, 2014

What my child with cerebral palsy taught me: Parents share


Today is World Cerebral Palsy Day, dedicated to ideas that will improve life for people with CP. Share your suggestions over at the site! Today, I'm also thinking about how Max has improved my life. One thing he's taught me—one gigantic thing he's taught me—is the variety of abilities that exist in this world. I now know that there is no one "right" way of walking, talking, playing or basically doing anything. Max has enabled me to be a more open-minded person. 


I asked other parents of children with cerebral palsy what their kids have taught them. Here's what they had to say:


"This little beauty has taught me so much in her five years. She has taught me what true strength and determination are, she has taught me how to truly communicate without ever speaking a word, she has taught me patience (in more ways than one), and she has taught me to find joy through the good and bad. And how could you not enjoy waking up to this sweet face every day!!!"—Rebecca M.

"Matt has taught us to celebrate every inch stone. What may seem small to some people are the big things in our family."—Brandi G. 

"Our son Andrew has taught us so much. Lessons like: not to take for granted your talents and abilities; how to be patient when you are really frustrated; how to be an amazing friend to all who will let you and many more. He also teaches us much about perseverance and hope! With a ridiculously busy schedule for a 7-year-old that includes full-time school (in a mainstream classroom) and at least five therapy, doctor and physical activity appointments per week, every week after school—and summers spent doing daily intensive medical treatments for many weeks—he keeps on fighting and improving! Praise God!"—Kellie B.

"Morgan has taught me to never sweat the small stuff and to be thankful 
for every small step."Jenny T.

"My child has taught me to laugh when I feel like crying...to be proud when I feel like breaking...and to not just fly but soar!"—Julie K.

"To not accept the limits other want to place on a child with CP—even medical professionals! These kids have so much more potential and possibilities than others often give them credit for. The determination, work ethic and positive attitude Cathryn shows us day in and day out is nothing short of inspiring and astonishing despite the surgeries, hardships and struggles. She radiates sunshine in the face of daily difficulty."—Cynthia Frisina, Reaching for the Stars: A Cerebral Palsy Foundation

"Developmental milestones can be celebrated whenever they come. We call it 'Jabari time.' I have learned that success can look different for each of my children. I love being a parent of a CP kid. I am such a better person because of it."—Emily F.

"My son has taught me that hard work and determination will get you further than anyone thinks. Forget being born smart or athletic—work to make yourself these things."
Katy Davidson Monnot, Northshore Parent

"To never ever give up and to not care what anyone has to say about you!"—Carrie W. 

"Max has taught me no milestone is too small and how to be patient. If he's not sad about his CP then I refuse to be sad about it too."—Ashlee A.

"Through my child's strength, I've learned how strong I am while still finding beauty in the most difficult times."—Melissa S.

"Our little one has taught us the importance of living in the present moment and celebrating the here and now rather than worrying about the 'could be's' and 'what if's.'"—Rebecca F.

"To have patience and compassion even when it exhausting and frustrating to deal with a non-verbal quad cp kiddo. If anything, it's taught me to appreciate what I have and hope others see her and our struggles and think the same. It's also taught me to take docs at half their guesses and never give up."—Megan P.

"Lola has taught us that we should never put limits on what she can accomplish. She amazes us all the time. We don't care what her MRI looks like or what a medical professional tells us about her future. She is incredible, resilient and amazing. We love her sass."—Gillian E.  

"Tucker has taught us that each day is full of fun. So much fun that sometimes you just need two hats!"—Katie A.

 "My little love bug has taught us that every person does things 
at their own speed."—Kristin G.

"Patience, tolerance, love."—Shandon F.

"I have learned so many lessons but the key one? I guess to not yearn for the life you don't have, but instead love the life you've got. Like the fact that my 14-year-old may not be able to say much, but she can say 'I love you' and tells me that daily  She couldn't care less how many likes a FB post got, but finds joy in every moment. She won't be a scholar or an athlete but her laugh will never fail to make you grin from ear to ear." —Julie U.

"Our Gabe has taught me to have immense joy in the midst of deep suffering. To work hard and to the best of my ability. To realize that the most important measure of success is how well we love each other."—Becki I.

"I hope to someday be as positive and courageous as my 13-year-old twins Nicolas and Brook!"—Jennifer K.

"Hannah brings me joy. She has taught me to smile. She makes my heart hurt with the love she brings to our family. I love her with all my heart and soul."—Margie M.

 "Marcus, who has right hemiplegia and is legally blind, all due to being horribly abused when he was 2, has taught me about determination and the healing power of love. He just turned 34 on Sunday."—Galen G.

"There is no perfect child. No right or wrong way to live life. We can either spend days mourning what we should have had or what we are missing out of. Or we live each day making the best of what we have. Enjoying every smile, every accomplishment and even every setback. Because they challenge us to try harder and prove we can do it."—Brenda O. 

Read about cerebral palsy research breakthroughs over at Parents.com—and find out how you can participate in an important CP study. 

For a gallery of photos of kids with CP, check out the AZ is Amazing blog, written by a young woman with CP. 

11 comments:

  1. Thank you to all the CP parents who have made people like me who we are today we may not say it often but we really appreciate it

    ReplyDelete
  2. Beautiful, just beautiful. I share these sentiments - I especially love the last one, there is no right or wrong way to live life! wow!
    Kristen

    ReplyDelete
  3. Ellen, you continue to open your platform to us and our lives are enriched by your gifting heart. Thank you. Scott

    ReplyDelete
  4. Beautiful sentiments and so much to learn from them..

    ReplyDelete
  5. I don't know what I taught my parents. Maybe something in this list is one of them?

    ReplyDelete
  6. Hey there - thank you so much - what a powerful post - just looking at those various pics and reading the stories - wow, so much love and so much strength - really good to see.

    Have just started a series on People Living with Disability on my blog and my friend Lachlan who has spastic Cerebral Palsy was one of the first to write: http://brettfish.wordpress.com/2014/09/16/taboo-topics-living-with-disability-meet-lachlan-nicholson-spastic-cerebral-palsy

    Just trying to get some awareness but also some education for the people who encounter or engage with them.

    Keep up the good work and be encouraged
    love brett fish

    ReplyDelete
  7. What having a daughter with CP has taught me- Best laid plans don't always happen, Doctors don't always know best, Always be thankful, don't compare, stand up for what you believe and have patience
    What having a sister with CP has taught my other two daughters- the 5 year old: people are different, some people are mean, be nice, the 13 year old- Everyone has differences, everyone deserves respect, everyone does things at their own pace, sometimes people can be downright mean, its important to include everyone, its important to advocate for people who have a harder time doing so, people with disabilities are just people and "mom, I know this is really something CP has taught me but rather inspired me to do- I want to be a pediatric physical therapist"
    And what having CP has taught me 10 year old- to be strong, people are different, don't listen to mean people, some people just don't know, you have to stand up for yourself.
    Ellen, what has Sabrina learned from Max having CP?

    ReplyDelete
  8. My daughter has taught me that our bodies are amazing. There is much that goes into every motion that I never before adequately appreciated. She has also taught me that anyone can find joy in life, no matter his or her circumstances.

    ReplyDelete
  9. With only 30mins left of World CP Day in this time zone and thought put into this sentence, I'd like to say that I dislike the day. I don't know of any disease/disability specific awareness days or months that aren't focused on raising money for a cure. World CP Day makes me feel like there is something bad about who I am and like a charity case. I wish this was an acceptance day. There's a difference. ASAN is onto something trying to change autism awareness month to autism acceptance month...

    ReplyDelete
  10. Thank you! I looked at the people in the pictures and saw so much joy, and love, feistiness and spirit. Bravo!

    ReplyDelete

Thanks for sharing!