Having a loved one with PWS will change you for the better.
I’ve spent the last 29 days describing PWS and its symptoms and health consequences. I’ve laid out all of the hurdles PWS has placed and will continue to place in front of Clementine and our family. I’ve tried to illustrate the desperate need for fundraising to push research forward. And I hope I’ve given everyone a picture of what Clem’s daily life is like and just how different it is from a typical child her age.
Today I want to flip the coin and tell you about how being a caregiver to someone with PWS, someone like my beautiful Clementine, has made me into a person I never knew I could be.
When Clementine was born, she was the fourth child welcomed into our family. I’d say I was a pretty experienced mom. My oldest was just 5. I also had a 3 year old and a two year old and I was 42 years old. Before she was born, I was worried about being able to care for her simply from a time perspective. And I’ll admit, I was exhausted and aggravated.
After her birth and the subsequent diagnosis of PWS, I think I just fell into a state of shock. I went into autopilot and performed my duties as a mom but the world around me was distant and muted. Stephan and I educated ourselves as much as possible about what to expect, found the amazing Dr. Miller and tried to carry on the best we could. My love for Clementine was instant and overwhelming but so was the fear and anxiety that had lodged in my heart.
The first couple of years of Clem’s life moved very quickly. She began to develop into this amazing little fireball that was capable of so many things and was such a light of love and inspiration. My constant fear began to recede. Slowly I emerged from what I now recognize must have been a depression. The world began to regain its color and sound. My acceptance of Clem’s diagnosis had settled into my mind and heart and I knew that she would be ok. I knew that I would be ok. I knew that our family would be ok.
Here’s where the change for the better part comes in. Before Clem, I was the typical mom with typical kids and a typical family. I did what all moms do and I raised my kids and cared for my family and went about my harried and messy life. I considered myself to be a decent person and tried to be considerate and thoughtful of others. But my focus was on myself, my family and my life. I didn’t have a driving purpose.
But after escaping from the fog surrounding Clem’s early years, I realized that I had somehow developed a strong desire to get involved in something. To be a part of creating solutions to problems that we were experiencing but that were also being experienced by so many other families. I began to notice things I hadn’t noticed before. I saw people struggling that I had never given a second thought to before but who had been right in front of me the whole time. Watching Clem rise above her challenges had given me an overwhelming desire to be an agent of change and progress.
I decided that I had 2 paths open to me. I could be sad and complain about the changes my life will experience and all of the difficulties my sweet girl will face. Or I could try and regain some control over my life and circumstances by taking active measures to improve things. The second option sounded far superior to the first.
Since then, I have involved myself in many different projects. Some of them involve PWS and in particular raising money for research, but others have been related to my community and volunteerism at a local level. I have found within myself the ability to be a difference maker. I have also discovered the truly incomparable satisfaction and joy that comes from involvement in something much bigger than oneself. I have tapped into a well of compassion I never knew I had. I have become friends with people I never would have met under other life circumstances. Perhaps most importantly, I have come to understand that I must live with purpose.
Having Clementine has made me realize that for my life to be worthwhile, I must matter. Not only to myself and to my family, but to the world around me. Thank you Clementine for giving me the gift of perspective. And for helping me uncover the abilities and talents I didn’t know I had. I am truly a changed person because of you. I have cloaked myself in your strength and courage and I am invincible!