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CP Awareness: Katie + Annebelle

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The beautiful thing about social media is the amazing opportunity to build community. This has been so true for us personally as I have come across so many wonderful families who have a child or children with similar diagnoses and feel encouraged by their stories.

I had the pleasure of coming across Katie and Annebelle through Instagram and wanted to share just a little bit of their journey in honor of Cerebral Palsy Awareness Month! Annebelle was born with triplegic cerebral palsy and infantile spasms, but her mama is on a mission to normalize disabilities and bring acceptance to all with disabilities.

 

This is just a quick snapshot of their story:

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1). There is a lot of learning when you become a parent to a child with cerebral palsy. What’s one thing you have learned by having a child with CP?

Having a child with cerebral palsy is a terrifying, wonderful adventure. Having a child with CP has taught me to live in the moment and not worry about the future, Annie is significantly developmentally delayed so when she was younger I constantly wondered when she was going to reach milestones and what her future would look like. It will drive you crazy, I learned to celebrate what she was doing now instead of looking at when she’ll do things in the future.

 

2). Life wouldn’t be life without its ups and downs! What have been your highs and lows when raising your child with cerebral palsy?

There have been a lot of highs and a lot of lows, Annebelle has triplegic cerebral palsy, is developmentally 4-5 months old, and has refractory infantile spasms. She has been through a lot in her short life, she has multiple surgeries in her future and has already had multiple EEG’s, hospital stays, a feeding tube placed, and therapies constantly. But after everything she has gone through and everything in her future she is the happiest kid I’ve ever met. She always has a smile on her face and she work so incredibly hard to achieve all of her goals. It is amazing watching her work for months on a skill and then finally achieve it, there pure joy on her face when she accomplishes something. If anyone can handle a life with disabilities and hardships its her, her strength and attitude are inspiring.

 

3). There are a lot of misconceptions about special need parents/children. What’s one thing you wish everyone knew or something you wish people would stop asking/saying?

Special needs kids don’t want pity, they want to go play and have fun and be accepted like every other kid. We know that we’re different and that will make your child curious, don’t get embarrassed and shush them when they make comments or ask questions. Teach them about kids with disabilities and let them ask us questions, we would much rather be talked to than stared at. Teach your kids how to treat people with special needs and explain that some people need more help with walking or eating or breathing and that my daughter is just like them.

 

4). There are parents who have a child with a disability who are just starting out on this journey and are scared, feeling hopeless and don’t know what the future holds. What’s a piece of advice you would share with them?

Take it one step at a time, anxiety is a real problem for special needs parents so don’t let it overwhelm you. Get connected with other parents that are going through this too, there are support groups all over the internet and you can meet up with other parents in your area. Creating a support network can be a life savor when life gets overwhelming. Try to create a routine, get therapies at the same time every week and don’t forget to schedule time for fun. Enjoy your child, their disability will become part of your life. Your new way of life will become second nature and eventually you will feel normal setting up your child’s feeding pump, helping with therapies, giving medicine everyday, and lugging around equipment, eventually your life will be your new normal and you won’t think twice about it. 

 

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I want to thank Katie for being so open and honest! Advocacy is as simple as sharing your story, so thank you Katie for being the awesome advocate for your daughter and for being open to bring encouragement and light to others on a similar journey! If you’d like to learn more you can find them over on Instagram &  Facebook.

 

 

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2 thoughts on “CP Awareness: Katie + Annebelle

  1. Making these types of connections is such a blessing! I truly enjoy learning from you friend, and now I’ve learned from Katie and Annebelle too! Thanks so much for sharing!!

    1. Thank you Patricia, you’re always so encouraging! It’s been life changing to make connections from so many different places who “get it” and I don’t have to explain the nitty gritty!

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