As parents of a child with cystic fibrosis, we have realized that the learning curve is pretty steep. CF can be unpredictable. One month, things are going along great. The next, your child is diagnosed with a lung infection and you start a whole new level of treatments and routine. Many of us know how difficult it can be to take time to care for ourselves while supporting our loved ones with CF. But, taking time to nurture our relationships -- specifically our relationships with our partners -- can sometimes feel impossible.
It had been a rollercoaster ride. For almost two years, our daughter had been fighting a lung infection. She had been hospitalized, followed by months of antibiotics. We wanted the infection gone and we were all feeling the strain. Everyone wanted life to return to normal, or at least our version of normal. A family member suggested that my husband and I take a break while they took care of our kiddos. Although they never came out and said it, the tension between me and my husband was obvious.
We agreed to go, but when the day came to leave, I completely fell apart. How could anyone else handle our routine? It all seemed too much. I considered canceling, but when my husband reminded me how much we had both been looking forward to our time away together, I reluctantly agreed to go. Tears streamed down my face as I looked out the window on the way to our destination.
How did it get to this point? I was mad. Mad for my daughter, who deserved to be out playing instead of doing treatments. Mad about time spent doing treatments when we could have been hiking, biking, or just spending time together as a family. Mad at my spouse for reasons I didn't even understand. As the tears turned crusty on my face, I realized I wasn't really mad anymore. I was exhausted, and catching our breath was exactly what my husband and I needed.
Over the next few days, my husband and I began to talk, like really talk, about our life. We reminisced about when it was just the two of us, and what it will be like when it's just the two of us again. We laughed about all the fun we've had, and we cried about the challenges we've faced. We missed the kids and talked about how blessed we are to have them as our children.
Over the years, our thoughts and feelings had been shoved aside in order to cope with new routines and challenging circumstances. It felt so good to share. So, we vowed to take more time for our relationship. Regardless of the circumstances, we are stronger together.
We learned the hard way that prioritizing your relationship with your partner is important. No, it's not easy; but in the face of CF, you ARE stronger together. No one knows your situation better than the person standing with you at a hospital bedside, during vest treatments, or using nebulizing antibiotics for the first time. So, here are some of the important things we realized:
- Remember your time as a couple. Reminiscing about date nights, vacations, and moments that make you smile is just good medicine. During difficult times, you may need to pull some of those memories out of your back pocket.
- Talk about the tough stuff. It's okay to get emotional. Raising a child with a chronic illness is hard, and it's okay to say that. Your partner needs to know what has been challenging for you (and vice versa) so you can better support each other.
- Think about ways to fill each other's bucket. Does that mean one of you handles the morning treatment so the other can get to the gym or take a walk? In return, do you take the evening treatment so your partner can meet a friend for coffee? Talk about what fills your buckets.
- Take time together. Whether it's taking a walk, watching a movie, or going on a date, it's important to clear your head. You need to break away every once in a while so you're ready to give your best to your loved ones.
- Allow others to help. This has been difficult for us. You get into a set routine and you begin to think no one else can do it like you can. Unfortunately, life doesn't work like that. You may get sick. You may have to travel for work. Someone else may need you at the same time you need to be doing a treatment. Open up to friends and family about ways they can help. They may surprise you.
George Orwell said, “Happiness can exist only in acceptance.” By accepting our situation and supporting each other through the good days and the bad, we consider our family a force for CF to reckon with.
