A Week In The Life: My Daughter Has Cerebral Palsy

By Joy Kobylka, adoptive mom

Joy4 1 scaled 1 768x1024 1When I first saw her picture, she was sitting on a red riding car and her smile lit up the screen and I fell a little bit in love. Then I saw her diagnosis of cerebral palsy and thought that there was no way we could handle that level of need. The thought of her smile kept drawing me back to her picture and I tentatively started to research. Over the course of a couple of weeks, both my husband and I were impressed that she was the child for us.

When Tiffany called and told us that she was able to lock her file, I was so excited. Along with the elation, I was also scared because of the unknowns about her specific needs and challenges. I had no idea what our life would look like. We didn’t know if she would need a walker or braces. We live in the country and spend a lot of time outside and I didn’t know if she would be able to navigate outside. We didn’t know if she would be able to talk to us. Honestly, I was a little afraid of how it was going to affect our busy life and the lives of our other children.

Cerebral palsy is caused by brain damage in early infancy or before birth and the diagnosis covers a large range of impairments. CP is static, meaning it doesn’t get worse and the child can improve with therapy and care. Our daughter has a fairly mild version, which affects primarily the right side of her body. This means that her right hand and leg are weak and her right shoulder is stiff. It also affects her speech.

When we first met her in China, she was almost limp. Looking back, I can see most of that was due to her fear. In the bathtub, we would keep a hand on her, because she would just fall over. When we came home, she wouldn’t try to walk in the grass and the slightest touch would cause her to fall over. Like so many, her condition was worsened by the fear of all the changes in the adoption.2016 01 16 15.21.50 1

In the months since then, our daughter has constantly amazed us with her resilience and ability to push herself. I am so glad that we didn’t give into the fears surrounding her diagnosis.

Writing this, I want to give those of you who may be considering adopting a child with CP and those who are unsure, a snapshot of what a week with Julia looks like for us.

On a typical day, after she wakes, she starts by helping pick out her own clothes and then puts on her own pants. This takes a while because she is working on her fine motor skills, but she’s stubborn and really wants to complete this task herself. After breakfast (she feeds herself very well), I sit and read to her for a few minutes, working on language skills and attachment. Then I set her up next to me at the school table. While I’m working on teaching my other kiddos, she plays with chunky puzzles, kinetic sand, stacks blocks, lacing buttons, lauri puzzles, color/shape sorting and play doh. These are typical preschool activities, but it helps her with her hand strength and her development. Sometimes, I reach over and hold her left hand, which forces her to strengthen her right hand as she plays.

While I make lunch, she likes to help put away the dishes from the dishwasher. She was so excited when we let her do this the first time and runs to help whenever I open the dishwasher. During lunch, she watches some speech therapy videos. After lunch, I work with her for about 20 minutes on the “homework” she has been given from her PT / OT appointments. These are simple exercises that help with her core and leg strength. She actually thinks of it as play time.

Joy2A couple afternoons a week we have appointments. She is taking adaptive riding (horse therapy). This is the highlight of her week. The therapist works on specific goals, but Julia just loves riding and doesn’t realize she is working. She has physical therapist/ occupational therapist sessions twice a month on alternating weeks. She’s just now starting to work with a speech therapist, because we wanted to give her some time to adjust to English.

Five months post-adoption, I am so thankful to God that we were not turned away by our fear of the unknown. Julia has amazed us with her grit and determination. Everyone who meets her falls in love with her smile and her sweet spirit. She loves to take long walks outside in the woods and kick the ball with her siblings. Our other children have welcomed her as a sister and the experience has made them more empathetic as they share delight in her accomplishments. It has taught them to be more aware and to slow down. She makes them laugh.

We still have a lot of unknowns. Her expressive language skills are very delayed, but that does not hinder her ability to communicate. She seems to understand nearly every word we say to her and she had picked up quite a bit of sign language and LOVES using it. In the last couple days, she has shown an increased desire to speak. Today, when picking out a collar for our dog, she put two words together, pointed and said, “purple collar.” It was a little slurred, but it was beautiful and I almost cried. Yes, I bought the purple collar.

If you are interested in starting to research cerebral palsy, I recommend starting at here.

4 Responses

  1. I didn’t even know she has CP until I read your article. Thanks for sharing a week in your life with your Julia.

  2. This is a wonderful story; thank you so much for sharing as we are going through the process as we speak with a little girl who is affected with the same exact diagnosis. Her right side is very week from her arm to her leg. Amazing how the Holy Sprit puts this story right in front of my wife and then she passes to me. Total God thing and total affirmation that we should NOT BE SCARED. Thank you very much for writing this. Thank You So very much for listening to the Holy Sprit!!!! I love to see God work.

  3. Joy, this was beautifully written! I love seeing Julia blossom! Even during our brief moments in sabbath school, it’s plainly obvious that she is a happy little girl. She is so blessed to be a part of your family. :).