I’m a little late but March is Cerebral Palsy Awareness Month. I think most people have an idea of what Cerebral Palsy (CP) is, a loss or impairment of motor function from brain damage. For people with CP moving your limbs the right way can be very challenging and frustrating. Every CP patient is different, some can walk and talk while others can’t. There is no cure for CP only medicine and therapy to help improve the quality of the patients’ lives. We have come to find out all of this is very expensive and time consuming, many families cannot afford these resources. Around 700,000 people live with CP, I think the most common misconception is that all of these people have a mental disability as well. Wearing green this month is a fun way to show your support for people with CP. An even better way is to educate yourself, educate your children. Google is an easy way to find out more about CP. Talk to people you know going through it. No need to be afraid or feel sad for people with CP. Trust me, my kids is amazing and is going to do big things! CP does not define who he is.
Like I mentioned before CP is different for every individual. I wanted to take time to explain how Dean’s CP affects our family. He is still so little so it is hard to tell how his life will actually be, this is one of the scariest things for me as a parent. But right now he is doing great. I actually tend to forget his disability, it’s just part of our everyday life. He wears his AFO daily which isn’t really an issue but finding shoes, socks, and pants can be quite the hassle. He takes medicine twice a day, I have to set an alarm on my phone because I, for the life of me, cannot remember that second dose. Traveling with medicine that has to stay cold has been a bit of a challenge but we make it work. I think the biggest challenge CP causes us is time and medical bills. Dean is still doing 4 therapy sessions a week. We are now able to do physical therapy and speech back to back, which saves us a ton of time. Occupational therapy is far but only once a week. His other physical therapist comes to the house and is free through the state, Ohio offers a great early intervention program. CP is tough on us as parents. We love him and want to give him every opportunity we can. We have a lot of difficult conversations discussing trials and what treatment is best for him.
As the parent of a child with CP connecting with other parents in similar situations is invaluable. I could not imagine knowing as much as we do without meeting other families through the Facebook group CHASA. Dean and I raised money through our partnership with Plae to try and help give back since they have provided us with endless amounts of information and hope. Thorough this group we can talk to other parents and see what other kids are doing. It gives me a sense of normalcy and eases my fears. When were scared, worried, overwhelmed; it feels like our lifeline.
I wanted to share a few accounts that make our life better, the first is Our Beautiful Hope. She is a mommy blogger who is sharing her son Alexander’s story of perinatal stroke. We have connected through Instagram and it is so nice to have someone to reach out to in the same situation.
Next, is Kreations by Kittles. She is an adult with left hemiparetic Cerebral Palsy. She is an amazing woman who shows me people with CP can do anything! She is strong and beautiful and everything I hope Dean is as an adult hemiplegic. She makes beautiful artwork with “lefty,” below is what she painted Dean and we absolutely love it. You have to follow her on Instagram, she’s so motivating!
Another is Willows CP Journey, her Instagram is full of constraint therapy ideas. She has 3 adorable girls and always finds the time to do therapy with Willow, she’s pretty much killing it at this mom thing. She even wrote a book on it!