Life with Katie: My child with Cerebral Palsy
Katie is a mother of two children. She has a seven-year old daughter, who was born with Cerebral Palsy, and an eleven-month old baby boy. Katie shares her story on how she lives life with someone who has cerebral palsy.
Many people find it difficult to live life when they're faced with new challenges every day while having to worry about the possible implications of their child's condition on their other children, as well as themselves. The emotional impact is often overwhelming for parents. We hear many stories from our friends and families about emotional struggles that can come from the diagnosis or condition of their child or love one. As a mother of an eleven-month old baby who was diagnosed just last summer with Cerebral Palsy, I am now learning this very important lesson myself.
When my daughter was only one month old, we had to pack up our world and move to a small town in New Hampshire. When I took her for the first time outside in public and she started to cry, we were completely baffled by this new experience. All of sudden, this tiny little girl who hardly cried at all was wailing uncontrollably and it truly broke our hearts. Although our family continues to pray and believe that God will heal her someday, we cannot deny the reality that Cerebral Palsy is a true diagnosis with medical consequences.
After not being able to find a family support group in our new town, I began looking online and found a parent-to-parent website that was simply amazing! Katie, who also has cerebral palsy, created this website with the hopes of providing a place for families like ours to connect with other families whose children have Cerebral Palsy. As I read the online stories from both Katie and other parents, it became apparent that Cerebral Palsy is not the only aspect of life affected by the disease. Each family mentioned their struggles and hardships as they cared for their children.
The first night we brought our daughter home from the hospital, she was inconsolable and I found myself staring at the ceiling all night long worrying about what was going to happen to her. Although I am a Christian and try to put my faith in God first, it is still incredibly hard not having any answers. So my husband and I continued to pray for a more peaceful night's sleep, but were surprised the very next day when our daughter started rolling over for the very first time! Her ability to roll over has helped her become more comfortable in different positions throughout the day so she does not have to be placed into a certain position or lay on her side all day every day.
I discuss this experience in detail in my blog post, but I believe that we can all learn a lot from what happens during good and bad times. Although I still struggle with the day to day challenges of caring for my daughter, I have found it helpful to talk with other parents who have children with Cerebral Palsy. It helps me realize that although I do not know what the future holds for my daughter, God's plans are always better than our own.
Katie’s story about life with her child who has cerebral palsy is much like many other stories out there because it tells a tale of love, loss, and pain. I believe that many parents will be able to understand what she goes through because it can affect every member of a family, both the kids and their parents. In her blog, she also talks about the need for seeking advice from other people who have been there before and the help that they offer to a parent who is in the same situation.
She writes, “Every day, no matter how many years we have together with our child who has Cerebral Palsy, I find myself wondering ‘is this all there is?’ This is not an easy question. It never gets easier as my child grows. But every day I do something to prove that it will get better. The best part is that I know my child will be okay.”
Katie’s story touches on how we sometimes only think about the child diagnosed with a disease or condition, but parents go through it as well. What is important to note, however, is that although they are both hurting and struggling with a new reality and situation in their life, they continue to care for their child and help them live life to the fullest.
The view expressed by Katie in her article confirms how she feels about her kid having Cerebral Palsy. Her love for her child is not just based on how she looks, but it is mainly because of how she treats and loves other people and what she can do.
Katie's love for her child is visible through her words. In the article Katie wrote, "It has been a little over a year now since my daughter was diagnosed with Cerebral Palsy. She began therapy when she was less than six months old to help build up her muscles in order to get her walking."
As the article progresses, the reader can sense that Katie's relationship with her daughter strengthens with each word she writes.
A parent who has a child with Cerebral Palsy experiences many complex emotions about the future of their loved one. With this disorder, behavioral issues such as crying, lying on their stomachs and not being able to move around on their own are common problems. One of the most difficult emotions a parent will experience is when they believe they may have a problem with their child as well.
"I hope that my daughter's disease will not be the same one that my husband and I had to overcome when our son was first born. My son experienced Cerebral Palsy when he was only two days old and we were told he would never be able to walk or talk. At that time we were young and had very little knowledge about the disease. Although we are the parents, we were scared. We didn't know what to do, who to go to for help or who to ask."
"I began searching online for anything I could find about Cerebral Palsy. I wanted some insight on how other families were coping with the disease. I needed something to hold onto. In all of my searching, I found several virtual support groups that were helpful in offering other parents advice on what worked and what didn't work when caring for their child with a disability. I felt as if I was not alone. I found others who were in a similar situation and all had the same concerns about their child."
"I know that it is possible for my daughter to have the same disease that our son did have when he was a baby. This was difficult for me to discern, but it became easier as I began to read their stories. Instead of feeling hopeless, this made me more concerned about what I needed to do to help my daughter live a happy and successful life."
Katie's article expresses how she wants her child to know that she is there for her through anything.
Conclusion
One of the major reasons why Katie wrote this blog post was to let parents know that they are not alone when it comes to having a child with Cerebral Palsy. Parents who write their stories and express their emotions help others to learn that having a child with Cerebral Palsy is not just something they will have to live through, but it actually helps them care for their own child in a better way.
Katie says, " Although we are in a virtual support group, we still try our best to meet other adults and families who have children with CP so we can offer each other advice on how best to care for our kids.