As a parent, raising a child with Cerebral Palsy comes with unexpected twists and turns. Because of the lack of social awareness and support for CP, the challenging lifestyle that this diagnosis brings can make parents feel alone and misunderstood.
What many do not realize is that Cerebral Palsy does not just affect the diagnosed; it impacts the lives of the entire family. The dedication and support that is required from parents and caregivers is a lifelong, loving commitment.
In February, we co-hosted our second annual Oso Fit 5K & Kids Fun Walk/Run with our extraordinary partners from the city of Mission Viejo. As well, we were honored to present a united front of support for our run within a run, for children with Cerebral Palsy, thanks to our caring partners at CHOC Children’s Hospital, Pediatric Orthopaedic Specialists, Convaid Wheelchair/R82, Capo Valley High School Boy’s Track Team and Tutto Fresco Kitchen & Bar. This event provided a perfect opportunity for CP families to come together, side by side with their peers and other able-bodied children in a safe and supported environment.
After the run, we interviewed the Pogrebnyak family to share their story of supporting their beautiful 12-year-old daughter, Daria. She has a severe case of Cerebral Palsy. She has endured numerous orthopedic surgeries, and the family has relied on physical therapy, speech therapy, occupational therapy, horse-riding therapy, Therasuit sessions and more.
The Pogrebnyak family began attending events with Children’s Cerebral Palsy Movement to find a community that understood their life struggles. This is what they shared with us:
Why did you attend the Oso Fit Kids Fun Walk/Run with Children’s Cerebral Palsy Movement (CCPM)?
Pogrebnyak Family: We heard about Children’s Cerebral Palsy Movement when we went to their beautiful event, the Dare To Dream Christmas Extravaganza. It was a Christmas celebration for kids with Cerebral Palsy. For us, it was a unique opportunity and event. We never knew these types of events for kids with Cerebral Palsy existed – not only for kids, but for the whole family. It united everyone.
It was wonderful to see that the event was for designed with the entire family in mind; for the siblings and for the parents – as they are also part of the community. In fact, they struggle because of the challenges in their family. So to have such events, it means so much to us. You can join other parents and families, and you can see other kids with Cerebral Palsy; you can have fun, and you can feel like a part of the community.
[At the Oso Fit Kids Fun Walk/Run], you see the sunshine, you see these people, and you feel the freedom to move. It’s difficult to describe in words how much it means, but you just feel it. For us, it’s really a good opportunity to be in the community and to feel like a part of it.
Share how CCPM events helped your family?
Pogrebnyak Family: I think that it allows us to move forward through this challenge; to see that with Cerebral Palsy there is hope. There is hope that the future is better than right now and that Cerebral Palsy is just a diagnosis. And it helps us believe that our kids will have opportunities in the future. These kinds of events provide opportunities and help us move forward in some way.
What is the most difficult aspect of Cerebral Palsy for your family?
Pogrebnyak Family: The most difficult thing for us in this situation is the very common misunderstanding about the needs of Cerebral Palsy kids. Almost every time, we need to explain what we need to do and what help we need from others; it’s everywhere. Fortunately, people try to understand. First, there is misunderstanding, but eventually they understand, and they help.
What do you want for your child with Cerebral Palsy?
Pogrebnyak Family: I want Daria to grow up and to motivate her and not allow her to be down and feel upset with everything that is going wrong. We need to teach her how to deal with this, how to live with this. For me, if Daria can achieve half of what I am dreaming of for her, it will be a good result for me and my husband.
Including kids with Cerebral Palsy in the community is such a great opportunity for other people to understand their needs. To learn and to remember that whatever you have been given in life is a gift, and you need to use it as a blessing. Even if you have Cerebral Palsy, you need to understand that this may feel like the worst thing that can happen to you. But you need to wake up, see the sun, and think, “Okay, the sun is rising for me, for my child, for my family.”
What do you want for your child’s future?
Pogrebnyak Family: Of course, all of us want a brighter future for our kids. We want them to grow up as good people. I don’t know what Daria will choose for her future, but I definitely want her to go to college and receive a degree. I want her to stand up on her own legs and walk by herself. That is my biggest dream. It’s difficult to say what these kids will achieve, unfortunately. When you are familiar with a diagnosis like Cerebral Palsy, you know that it is difficult to predict what will go on with them. Nonetheless, we are always hoping for a better life.
For me, I want to help Daria achieve as much as possible. I want to show her how she can live, and how she can deal with everything that is going on around her. It will not be the finish line for us, but when I see her walk by herself, that will be the best result for me. When I see her go to the university, of course, I will cry like all other moms… but for [CP] kids, it is difficult to predict what will happen. We want a brighter future for her, and we will help her, as a family. Our future, I hope, will look brighter than it was yesterday.
What CCPM Is Committed To Do
We created CCPM to support people in the CP community like the Pogrebnyak Family. Because Cerebral Palsy affects each person differently, no two families have the same story. Our events provide families in Orange County with the opportunity to connect with others and find support from people who understand the everyday struggles of Cerebral Palsy.
We strongly believe that families should not have to deal with Cerebral Palsy alone. Our upcoming Caregiver Insight Into Healthy Living is a monthly workshop where caregivers can receive important tools for their journey and find a much needed sense of community – as together we can support one another through the trials and tribulations of Cerebral Palsy.
Join us on May 11th at 10:00 a.m. at Waters Family Wellness in Lake Forest, CA. Our topic for this workshop is toxins. We will be discussing how toxins affect our health and what we can do to reduce the toxic load in our bodies. We will also fellowship with other caregivers and begin to knit some strong bonds that can serve to lighten our loads, as we support and learn from each other.
Registration is requested in advance. To register, please email us at firstname.lastname@example.org