May 7, 2013

What I Would Tell Myself the Day my Son was Diagnosed with Cerebral Palsy

I saw a video on Facebook where parents of special needs children stated what they would have told themselves when their kids were first diagnosed. The video had me in tears and it really got me thinking about what I would have told myself on the day that Mark was diagnosed with Cerebral Palsy.

There are so many things that I could have said to myself looking back. I'm not sure in my grief that I would have heard anything that my future self said. It was such a dark time for us with so much uncertainty and a desperate feeling of being completely overwhelmed and scared.

I would tell myself
  • It's OK to grieve, it doesn't make you a bad mom or person. The life you thought you were going to have is different now. It's OK to be upset about it. One day you'll be glad you dealt with your emotions purely since it allowed you to get to a place of acceptance quicker.
  • You will find strength that you never could have imagined you would be capable of having and you will use it to fight for Mark.
  • Join a gym now! The stress of having a special needs child will wreck havoc with your health. Future you found this out the hard way.
  • You will start a blog and reach out to other parents of CP kids. They will teach you more than any book ever could and become your lifeline when things with Early Intervention go bad.
  • Grow some thick skin lady! You will be shocked at the things said to you by doctors, strangers, friends, and family.
  • Breath. Mark is the most amazing little boy and he will accomplish great things. He has a determination that will take your breath away.


If you have a child with special needs what would you tell yourself the day your child was diagnosed?

17 comments:

  1. Stay strong and just breathe. My cousin had Down Syndrome and her parents are just the most amazing, happy, and positive people I have known. When she passed away, they opened their home to another little one with Downs - any parent who looks after a special needs child has a unique capacity in them, whether they know it or not, that just amazes me.

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    1. I think we all have that unique capacity, we just don't know it until we need it! Thanks for your kind words!

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  2. You are an amazing woman. I have 2 friends who each have a child with cerebral palsy. They are amazing women too. You all should be celebrated for the sacrifices and love you give to those sweet children every day. Hang in there, momma, we're all behind you.

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    1. Thank you! I've found a community of amazing Cerebral Palsy mothers that really inspire me and help me.

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  3. The more I experience in life the more I realize we are all much stronger than we think you are.

    You are an amazing woman and your son is lucky to have you. No matter the struggles or hardships you will be fine with all the support and love from those around you.

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    1. Thank you. You're right we are so much stronger than we know.

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  4. That brought me to tears, truly amazing. Your are so strong and so is Mark. What a wonderful family you have....blessed.

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    1. I cried so much the first time I watched the video that I had to watch it again since I missed some of it. Thank you for your support.

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  5. Thank you for sharing this video (I bawled).

    You are pretty awesome and you're doing a great job. May you continue to be blessed.
    xoxo

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  6. I am a firm believe in writing letters and documenting what we've learned and gone through because of the healing powers it has for us. Even more so is the impact you have on others dealing the same thing. Keep writing! Beautiful work!

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    1. I hope it will help someone else. I didn't have anyone in my life with a kid with Cerebral Palsy so I was flying blind. I don't know that I would have listened but it would have been nice to hear.

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  7. I've been there before. Make sure you have lots of family and/or group support available when you need it and to learn from. No one will understand unless they have lived it while others will judge you when they don't even know what they're talking about. Don't ever worry about what others think. It is a loss for the child that you had imagined a life for that will not happen in that way anymore. Let yourself grief, it's part of the process. Learn all that you can and move forward a bit each day because you can never give up. You'll be fine. There are way more going through this everyday than most people know because those going through it are way too busy to share their thoughts with others right now. Just reminding yourself that you're not alone can sometimes give you the strength that you need to get through your never-ending adventure. You'll be great!

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    1. You're right, knowing the others are going through the same thing or worse did help. It made me feel like I wasn't alone on the parenting a special needs child journey.

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  8. I wanted to respond with my advice before I saw what the others had to say. OK that video was beautiful.

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  9. Such a beautiful post! I'd hope to tell myself that I need to share with someone I know would support me. Someone who knows me enough to let me vent and not say anything. And that someone would probably not be family- ha.

    KK

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    1. It was very interesting to see who was supportive and who was so unsure what to say or do so they checked out. The best support came from someone who couldn't relate but knew me so well and never judged me.

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