Thursday, March 23, 2017

To the parent whose child has been diagnosed with cerebral palsy


The following was written in honor of Cerebral Palsy Awareness Month but, really, it's for any parent, anytime, anywhere.

Dear you,

So, your child has been diagnosed with cerebral palsy. I know how scared, overwhelmed and devastated you may feel, because years ago, I was you. Perhaps you've never known anyone with cerebral palsy, and can only conjure up terrible images in your head. Maybe you think this is a tragedy and cry a lot. How could this happen to your child? You? Your family?

I think it was our pediatric neurologist who first verified that our boy Max had cerebral palsy, the spastic, four-quad kind that affects all of his limbs. The fact that I don't remember how or when the CP was officially diagnosed should tell you something that took me years to accept: a label is just that. The only thing—and I mean the only thing—that matters is the child in front of you.

"Look at what he's doing, not his medical records," the neurologist has always told us.

Of course you want to know: Will he walk? Will he talk? Will he be able to eat and drink on his own? Will he learn OK? What will he be like? But for the sake of your sanity, try to stop wondering about the future and focus on the here and now. If for nobody else, do this for your child, who needs and deserves all of your heart, soul and hope.

Relish the bits of progress, the inchstones, rather than always aching for the biggies. It will be good for both of you.

A child who can sit propped up with a bolster or who can bear weight on his hands and knees for a couple of seconds is a child who was not able to do that yesterday. A child who grasps a peg is a child who is figuring out how to use his hands. A child who nods to a toy he'd like to play with is a child learning to communicate. Every bit of progress is progress. Every bit is worth relishing.

"Look at what your child is doing" also means appreciating the deliciousness. That can fall to the wayside as eagle-eyed you searches constantly for worrisome signs—or limb movements that may indicate the CP is not so "bad." Again, I get it. I was that mom. In always looking for what could be wrong, I neglected to fully appreciate what was right—my adorable child. "They're only little once," the saying goes. As much as you wish for your child to get bigger and do stuff, you will regret it someday if you don't savor the cuteness, which is not the least bit impaired.

Don't torture yourself by comparing your child to his peers or obsessively reading and re-reading the list of milestones for his age (been there, done that). Do look to older kids, teens and adults who have cerebral palsy, to see how they are thriving; I've met many in the online community. Don't make the mistake of trekking from specialist to specialist, desperately searching for answers that don't exist. It's emotionally and physically draining, and you risk encountering gloomy doctors who depress you (like the neonatalogist related to a friend who agreed to see us, and who informed me that Max's future looked "ominous"). Ask around, find docs who are knowledgeable and who give you hope, then trust in them.

As for the anxiety in the pit of your stomach, take comfort in knowing that you are getting your child therapies, sitting on the floor and exercising his arms and legs, requesting yet more therapies, asking questions, reading up and learning. Children proceed on their own timeline. You are doing as much as you can.

It may be hard to believe now, but no matter how your child turns out, he will be OK and so will you. Actually, more than OK. When Max was little and I didn't know anything about disability, I thought that not being able to talk in a typical way was an awful fate. And now? Max has a range of communication: some words, a speech app, gestures, expressions. We have conversations I never could have imagined, or dared to dream, way back when. We have inside jokes. We tease each other. We talk, in our own way.

Max has his challenges—what human doesn't? His may be more obvious than others' but when I look at him I see ability, not disability. The cerebral palsy is just one part of who he is.

Someday, you too will look at your child and see only him, a child as perfect in your eyes as any.

Love,

The mom of a child with cerebral palsy

Image: Flickr/Gayle N

22 comments:

  1. Nice to see such a wonderful feelings. We are also going thru the same phase of seeing minor change in our son who is 9 yrs. Old.

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  2. Oh, I agree with every bit of this! Definitely sharing this with my friends!


    Paige
    http://thehappyflammily.com

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  3. This is beautiful and wise advice. I would only add one more suggestion ... get know adults, even just one adult ... with CP or a similar disability. They can provide you (the parent), and someday your child with real-life feedback about what's ahead, and perspectives on what you are going through now.

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    1. Andrew, you are one of the amazing adults I've met in the online community. If you are reading this and haven't seen Andrew's blog, check out Disability Thinking. Also: That Crazy Crippled Chick
      by Cara Lebowitz and The Squeaky Wheelchair.

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  4. Amazing. Thank you for this great article. My boy is only 6 and I am determined to enjoy this age as much as possible. He has already come so far. I also need to repeat to myself that he is going to be ok and so will i.

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    1. You are very welcome. Enjoy that boy now. I'm telling you, they really grow up fast even though time may feel like it's dragging when there are developmental delays.

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  5. Fantastic post! I'm with the Author 100% but struggling to convince Family and Friends to "see the good" instead of "focusing on the negative". Life is short and precious, try to enjoy every moment.

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    1. That can be a toughie. It took some family members a long time to accept Max for who he is.

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  6. Yes. So well said. My daughter was eight months old (now 23) when a doctor said under his breath as we were leaving, "Oh, and she has cerebral palsy."

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    1. Whoa. Talk about a lack of beside manner! How's your daughter doing, Ellen?

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  7. "The cuteness...is not the least bit impaired." I love this! <3 It's so true. My 3.5-year-old son has CP, and while he can't say much, he sure can light up a room with his giggles!

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    1. Aw. Max was the same back then. I'm sure your son will continue to light up rooms, as Max can. It's a talent!

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  8. Thank you for sharing this, it's wonderful!!! We are fortunate to have a village made up of family and friends, that support and are so excited with each little bit of progress. We've clapped so much for his new and entertaining accomplishments that he now claps as well for himself, it's wonderful  

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    1. Oh, I love that he can clap for himself! As great as it is to relish our kids' accomplishments, it's that much better when they can take pride in themselves.

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  9. My son has SB instead but I related as I read it. He's nine months old now but not my first child. I never bothered to read BBC emails because they are so not helpful when your child has a disability. Still in the first year. I have a daughter who's typical as well. It was easier I guess in some ways because I was not blindsided by the news at birth. I've come to accept that he will be a full time wheelchair user.

    Leah


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  10. Thank you so much for this beautiful article! As I read it, I realized that this entire article is me right now.. every worry.. every question.. this really hit home with how I've been feeling. We just encountered one of the gloomy doctors who crushed our hearts, but it didn't take long through prayer to overcome the sadness and have hope for a bright future for our boy. He will be 6 months on the first. Suffered from lack of oxygen at birth and was diagnosed with HIE. We were told he would not make it. But he did. Now the concern stands with CP as he gets older. Also concern for his vision. He is seeing all his therapists and we work with him every single day. He is behind on milestones, but is making leaps and bounds every single day and never ceases to amaze us with his strength and how far he has come. This article brought peace to my heart! Thank you again! ❤️

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  11. Thank you so much for this hopeful post. My four year old son has CP and we are walking this journey now. I enjoy reading your blog and participating in the Friday link ups when I have a post to share. Thanks for taking the time out of your busy schedule as a mom to provide this resource!

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  12. Thanks for this, I so needed to read it today... My daughter is just over 2 and also has CP. I've really been struggling with it again recently. Just sometimes wish we could see into the future, so you could know how it all turns out. What a rollercoaster all of this is! She has the brightest laugh though and is just the cutest, friendliest little kid you'll ever meet. Wouldn't change her for the world!

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Thanks for sharing!



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