My fiery little light was born eight days after her due date, the exact same timing as her older brother.
Her entrance into this world was much like a Super Bowl half-time show—there was explosive excitement and the show ended nearly as quickly as it began. She made her swift appearance with purpose, intention and a fury of determination.
It’s a day that I’ll forever remember as a day filled with pride in my most instinctive natural abilities as a woman.
Two weeks later my daughter was diagnosed with cystic fibrosis (CF).
I’ll forever remember this as the worst day of my life, the day that my heart shattered and a small amount of joy crept from my innermost being.
The following weeks were filled with tears, doctor visits, specialists, battles with insurance over our move to a new state and more grief than any individual should ever be forced to bear. Not only was I a sleepless, hormonal mother trying to adjust to her second child, but we had moved 1,000 miles for a new job when my daughter was just 5 weeks old.
I don’t know how else to describe the emotional pain other than to say that it was suffocating and most days felt like more than I could handle.
I spent the first eight months of my daughter’s life frantically researching alternative therapies for CF. I knew almost nothing about it, but quickly accepted it as an incurable genetic disease severely impacting the lungs and pancreas. CF is a disease that requires an abnormally large investment of time in order to stay well, which required that we abruptly acclimate to our new norm of morning and night chest physical therapy, nebulized medications and a whole slew of supplements and herbs that are helping to support my daughter’s health.
Adjusting to life with a second child felt hard enough, but accepting this new reality was even harder.
At some point during the latter part of my daughter’s first year I was able to start talking about her disease without immediately bursting into tears. The open wounds weren’t feeling as tender and I was able to see my daughter as a vibrant being, not just a person with the limitations of disease. When your child is so young and you’re so overwhelmed by the intensity of their care it’s hard to view them in any capacity beyond needing your help. But, as she grew older, I got to know the energetic little human that has become my greatest inspiration in life.
I’m learning that the most tumultuous events in life also present the greatest gifts, a truth that a friend once called “the gifts from the darkness.”
Her hope was that as I grew accustomed to disease management that I would begin to see the most beautiful rainbow emanate out from the grey cloud that enveloped my family.
What can I say? There’s nothing like a life-shortening disease to teach you about gratitude for the things that matter most in life. Since having my daughter, my family has made some major changes.
We’ve adopted a minimalist approach to living in that we’ve gotten rid of most of the clutter that prevented us from engaging in activities that are truly meaningful.
Our diet was good, but not this good. I believe that basic self-care through diet, exercise, stress management,and sleep exist at the cornerstone of health for every individual, especially those suffering from disease. My commitment to this diet got me a book deal from a major publishing company last year.
My daughter just spent her second birthday admitted to the hospital for IV antibiotics and all I could think about was how much my husband and I argued before her admission. I’m now stepping back from work to spend more time enjoying my family and nurturing the most important relationships in my life.
I have a new perspective on what’s important and my family is a top priority.
I exercise almost daily. Enhanced fitness will be hugely beneficial for my daughter, so I’m trying to set the bar that I hope she surpasses.
I could go on to tell you about the other numerous gifts such as faith, intuition and confidence that have emerged from this darkness, but I have to admit that when I take time to reflect on the improvements that had been made in my family’s life, I can’t help but think that it’s at the expense of my daughter.
I feel guilty that our gain is from her loss. Life just doesn’t feel fair.
Will my daughter grow to resent these gifts? Or will she learn to embrace the goodness that can come from such devastation? Only time will tell, but, for now, I’m going to continue to grow in my relationship with her and her disease in a healthy way that promotes strength, compassion, and gratitude. I’m going to mindfully push these thoughts of guilt out of my head, because the guilt perpetuates life in the darkness. I want to teach her to find inner strength from her disease, which means I also need to find strength from her disease.
As parents, we have to learn to set the example we hope our children follow. For me, in this chapter of life, it means embracing the gifts from the darkness and being thankful that life has taken this unexpected course.
It means choosing to live in the light, even when the darkness is nearby.