From the moment of diagnosis, Cerebral Palsy parents have the most important job in the world: doing everything they can to improve the quality of life of their child. While doctors, specialists, and therapists may see the child intermittently, the people who understand every detail of the child’s life are their parents.
As a CP parent, there is a huge sense of responsibility to be in charge of their growth and wellbeing. Parents have to take their child’s health into their own hands.
We recently connected with a mom from our community, Jacqueline Jimenez, who shared her experience when her child, Eli, was diagnosed with Cerebral Palsy. Jacqueline challenged the limitations the doctors put on Eli. She pushed the boundaries because she knew in her heart that her son was capable of more.
The story behind Eli’s growth from the moment of his birth, to now:
“We rushed to the hospital because I felt no movement from Eli on February 15, 2010. I was 36 weeks pregnant at the time. They had to do an emergency C-section. When the nurse carried Eli out of the room. He looked like a big rubber, yellow doll. He was not alive at the time of his birth.”
This exact situation is a soon-to-be parent’s biggest fear. For months, you daydream about the moment your child is born, then the unexpected occurs.
“I didn’t get to hold Eli at birth. We were separated and he was transferred to a different hospital. We got a phone call shortly thereafter, indicating that Eli needed another blood transfusion. For days, we didn’t know if he was going to make it. He developed brain damage due to my blood type being O-. As time went by, we were told that he would never learn to walk, talk, be potty trained, and so on.”
After experiencing the worst, the only thing a parent wants to do is be near their child. Jacqueline had no choice but to worry for multiple days. Days passed characterized by pure panic and distress for her new baby. All of her hopes and dreams for Eli took a complete turn, but she refused to give up.
“We took every negative and turned it around. We took each one as a challenge. Eli taught himself how to roll back and forth to get to where he wanted to be. He never crawled. As he was getting older -around two years old- they told us that he would never walk. Unwilling to accept that, I took it upon myself to find a walker in Ohio and paid for it to be sent to us. Between the ages of two and three, we got Eli to begin walking. Again, we were told that Eli would never be potty trained. The summer after kindergarten, I had him potty trained within two weeks.”
Jacqueline not only had to be resilient for herself, but for Eli as well. She took every negative piece of news given to her and transformed it into hope. She chose to be in charge of her child’s future, regardless of what the doctors had told her. This courage and determination led Eli to grow in unexpected and incredible ways.
“Eli is now nine years old. He spends half of his day at school in a general education classroom. He enjoys many playdates, and he also can swim with some assistance. Eli how taught his Dad and I how to love like we never knew possible, and to never judge at first sight. Everyone is unique and amazing in their own way. I thank God for Eli every day.”
Jacqueline’s inspiring story reminds us that as CP parents, we need to not be tainted by what health professionals predict for our child. Our children’s success often depends on how we follow our own instincts and set our sights for a breakthrough.
As parents, we know the ins and outs of daily life, what challenges our kiddos, and what helps them progress. CP parents need to be reminded that even though they may not hold a medical degree, that they are the ultimate experts on their children. Over time, there will be no one that understands your child as fully as you do.
If we continue to set our sights on staying positive, always advocating and pushing boundaries, our children may just continue to surprise us — just like Eli has. This little boy is a walking miracle and a beacon of hope. He also happens to have the most radiant smile that brightens everyone’s day! We are so proud to have the Jimenez family as part of the CCPM community.
We work diligently to connect CP families with the information and support they need. Engage with us. Ask questions and offer your thoughts. You have a voice, and we are listening.