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CP Awareness: Rebecca + Ellie

Although the month of March is coming to an end, advocacy isn’t just a month-long endeavor! Which is why I want to continue to share the stories of so many amazing families I have come across here on the blog! This leads me to introduce Rebecca and Ellie, who have one AMAZING adventure to share all the way from Ghana, West Africa! I would do both of them an absolute injustice to try to sum up all that they have been through, but I can tell you that their journey of love, faith, and courage is one that has touched the hearts of many! They have even more to celebrate since just a few days ago, Ellie’s adoption was FINALIZED after such a long and tedious battle the last 2.5 years! We look forward to the day that they can both come back to the United States and reunite with loved ones! 

 

But as always, here’s just a snap shot of what cerebral palsy means to Rebecca and Ellie!

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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 cerebral palsy?

The biggest thing I’ve learn from having a child with CP is to let them set the pace. When I adopted Ellie I had unrealistic expectations of how her development would play out. I put a lot of pressure on myself to encourage and push her to reach certain milestones, which in direct effect, made her feel that if she didn’t reach the milestones I would be upset or disappointed in her. In actuality, her development, whether that be gross motor, fine motor, emotionally, or socially, has gone through period of plateau and periods of rapid improvement. She has set the pace and it’s my role as her mom to encourage and cheer her on through each phase.

 

 

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?

Some of my hardest moments occur when I see Ellie struggle to communicate, complete a task, or interact with another child. Ellie has fierce determination and wants to engage with the world every second of the day. She gets so frustrated in moments when it’s extra apparent that she’s stuck in a body that she can’t get to do what she wants it to do. Ellie is a ray of sunshine 24/7 so I’d say every moment with Ellie is a high moment! I want to be very intentional with Ellie to not associate breakthroughs or milestones with praise and times of struggle with lack of praise. I want to be her biggest cheerleader through the mountain tops and the valleys because I am so so proud of her each and every day. 

 

 

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

In real life and on social media I constantly get the comment “oh you have your hands full with her (Ellie)!” Most times that comment is not made out of malice, but it makes my heart hurt each time Ellie has to hear it and associate herself with being a burden. I never want Ellie to feel that she is the cause of my stress or overwhelmed emotions. Although there is a lot of hardship in being a single mom raising her, I want my words and the words spoken to her to reassure her to know she is a blessing, not a burden. I’m the lucky one to have her as my daughter, not the other way around. 

 

 

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?

Breathe. It will be okay. You will slowly get accustomed to this new normal even though every doctor, call, or email feels like it may push you into a panic attack. Say out loud 5 things you are thankful for each morning, no matter how small. Build up a community around you who will support and cheer on you and your child. Find other moms who have children with the same diagnosis–special needs mommas form an unbreakable tribe that can and will stand with you in the hardest moments and lift you up when needed. Lastly, welcome to this special needs world. We are so so happy to have you. We accept you and your child with open arms. The road may be bumpy, but the journey is step by step. 

 

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What a complete heart melting interview! And I second what Rebecca said – A warm welcome to all of you who find themselves new on this journey! You and your family are welcome and we are so happy to have you!  I want to thank Rebecca for being so vulnerable as she shares so openly her story along with being such an encourager and dear friend! You can find out more about Rebecca & Ellie over on Instagram

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