When the doctors first mentioned the words Cerebral Palsy after Ella’s brain injury, it sent me through the stages of grief, but I spent a long time in denial. I had convinced myself that Ella would prove everyone wrong, that she would hit all her milestones and be tough and amazing and would waltz into the NICU and do cartwheels in front of her brain images. But, it didn’t take long for me to realize that that was not the case. She certainly has always been tough and amazing, but she needed a little bit of extra help.
I remember as I sat on the floor with a baby girl on each knee of the NICU follow up and there was an exchange of glances before I was told Ella had CP and that with those words, that diagnosis, we could help her get the things she needs.
There’s always been a part of me that hates the equipment. When we were ordering the stroller for Ella, I went back to my denial phase; she doesn’t really need that, we won’t use it. And it arrived and it was huge and heavy and it made my heart hurt because it doesn’t look like a stroller. It looks almost like a wheelchair. And it made me feel like a failure as a mother that I couldn’t keep her safe and in my tummy just a little bit longer.
Then, I put her in the stroller and she loved it. She was upright and using both hands and smiling and playing and it brings tears to my eyes thinking about it because it’s not about me. It’s not about how the equipment makes me feel. It’s about Ella being able to do all the things she wants to do. It’s about that smile that swells my heart and fills my soul. It’s about her standing at the table with her brother and sister playing and laughing and it’s about this mama standing by, being amazed by her two year old daughter who is so much stronger every day.
As a pediatric OT, thank you for conveying the greatest benefit of good positioning with equipment: the opportunity for a child to gain more freedom of movement and independence! Although therapists try to explain this, when a parent sees the difference and says it out loud, it has more power than a chorus of a thousand therapists. We know that much equipment looks frightening and reminds parents of their child’s diagnosis, but seeing a child succeed because she can look, reach and control movement will be worth the effort!
It’s definitely mixed emotions, a very internal feeling of grief and loss, but an external celebration of our kids and their abilities, but mostly their happiness 🙂
You are very honest about what you feel. I commend you for telling the truth and just loving your life in all it’s complexities!