Is your life filled with lemons or lemonade? We’ve all heard the saying “when life gives you lemons, make lemonade!” It’s a pleasant thought, and while I am ALL ABOUT having a positive mindset and making the best out of life, I also am a strong advocate of being real and honest. Real and honest (as well as sweet, wonderful, patient, adorable, etc.) are two words I would use to describe a dear friend named Angie, who is a person I will always hold dear in my heart. She was present for me during one of the most difficult times in my life, when life was one big fat lemon for me. As I was talking to her recently she shared this concept with me of not turning lemons into lemonade all the time, because it simply isn’t realistic. I absolutely loved her perspective and asked her to write her thoughts in a post to share with each of you. It is my hope that her words will touch your heart in ways that it touched mine. The following is Angie’s story in her own words.
Recently I attended a meeting dedicated to the topic of turning lemons into lemonade. A mother of a child with a chronic illness was one of the speakers, but surprisingly she chose not to talk about her son’s diagnosis. When I approached her after the meeting she explained to me that she could not talk about his illness because it was still a “lemon” in her life. As a mom of a child with a life-threatening chronic illness, I completely understood.
At one month old my second son was struggling to gain weight. I had switched to bottle feeding to ensure he was getting enough to eat and waking him every two to three hours around the clock. Still, he weighed less than he had at birth and he looked like his skin was too big for his body. We were sent to Children’s Hospital where he was diagnosed with Cystic Fibrosis. Our world as we had known it was forever changed.
Cystic Fibrosis is a life-threatening genetic disease that results in the mucus in the body being extra thick and sticky. This leads to chronic lung infections, difficulty digesting food and absorbing nutrients, and a host of other “minor “ side effects. At one month old my son began taking medication with every ounce of food he ate. Because it is a progressive disease, slowly more medications were added and breathing treatment times increased. Currently my son takes 10 different medications a day and spends 1 hour a day on breathing treatments. When he is “sick”, those numbers increase. He also spends 10 to 11 hours a day connected to a feeding pump to get him the extra calories that he needs to maintain growth. It’s a sobering task to track all he needs to do and still ensure he has time to be a kid. Yes, it’s often a “lemon” in my life.
Many feel that carrying figurative lemons through life is a sign of weakness. I feel it’s just the opposite. Our lemons make us stronger, define our character, and teach us to cherish the good. Having a son with a chronic illness is not something that anyone would ask for, but I have found ways to make my load a little easier to carry.
Here are some lessons I’ve learned from my lemons;
1. It is ok to grieve
Cystic Fibrosis not only impacts my son’s life, but also my life, our entire family, and the dreams we had. It took me over two years to really feel ready to move beyond the grief, and that’s ok. It was important for me to grieve the loss of my dreams. I have also found that certain events will set off the grieving process again. It’s a part of the cycle that I have learned to embrace.
As I continually cycle through the grief process, I have come to rely heavily on community support. We live over 500 miles away from family and Cystic Fibrosis is an isolating disease. Not only is it rare, those with CF are instructed not to be around others with CF due to the risk of sharing dangerous bacteria. As a result, the online CF community is very active. I have been lucky to find a group of supportive CF parents where we can vent about our bad days, celebrate the good, learn from the experience of others, and share what we have learned. This has been incredibly healing in my life. I have also found that talking to caregivers of others with chronic illness is also cathartic. It feels like we hold membership badges in an exclusive club and have a language all of our own. It is wonderful to connect on that level.
2. Let go of what I can’t control
This is one of the harder things that I have had to learn . Cystic Fibrosis can change quickly and I never know what any given day may hold. I can’t control how my son will be feeling or what level of care he may need. This has often made me feel guilty about being the “unreliable” friend. Unfortunately though, it is out of my control and I have found that guilt only makes the situation worse. Instead of harboring that guilt I have worked to let go of all of the unproductive emotions and focus instead on what is in my control.
3. Seek Help
This is one of the most important things that I have done for myself and my family, hands down. I reached a point several times where I could feel myself breaking. At one of my lowest points I sought help from a counselor. While counseling was beneficial, I found I needed more and approached my primary care physician. I most certainly did not want to need medication, but I am so grateful that it is available. Often taking care of my son and family takes precedence to taking care of myself. I am slowly finding the balance and learning to take care of myself, too.
Despite all of that though, there are times when living with Cystic Fibrosis can seem like a heavy load to bear. I find myself longing for the days when a bedtime routine did not consist of breathing treatments, medication dose after medication dose, dressing changes and wound care, and hooking my son up to a pump—just so he can go to sleep. I envy the time and money that has been taken away from us by this disease. Yes, Cystic Fibrosis is a lemon in my life. I’m not sure it will ever be lemonade, but I am grateful for the ways I have found to make the load a little lighter, one day at a time.