There is a smile on my face, but a burden in my heart so big I could scream. Today, it isn't sadness or fear. It's just the burden of cystic fibrosis -- a disease that never goes away and affects both of my children. It is a hurt only I can feel, but no one else can see. Especially my two girls.
This disease -- the time it takes, the way it hinders the normal flow of life, the monotony and constancy of it all -- just feels so irritating at times. I go about the day-to-day routine, taking care of my girls, chasing after housework, running errands, managing behavior, picking up toys, cooking meals, doling out hugs and kisses, serving snacks, giving baths, and telling stories. Then, there is chest physiotherapy (PT) -- that nuisance of a machine I have to make them sit down for twice a day -- and those awful, yet life-saving, enzyme pills they must take every time they eat.
I get so tired of seeing them, yet I know they are absolutely vital, so I would never even consider being anything but compliant. Yes, there are days when I scream and curse at them inside my head and want to THROW THEM AT THE WALL. (I feel both guilty and completely justified to admit that.) But instead, I smile, giggle, and try to make it fun. I suppress my bitterness toward this incessant part of our routine and keep calm because my children are watching me. Even if I think they aren't, they are always watching and always learning from me how they should approach this life and deal with the hard things that are thrown at them.
I feel a huge responsibility to help shape the way my girls think about their lives with CF, which means I have to constantly be aware of my own attitude and emotions toward the disease -- even when I am in the most inconvenient of places, digging through my mom bag, fumbling over prescription bottles, and trying to find to find a level surface to open and pour capsules into a spoon of applesauce for one impatient toddler while pulling out more pills and finding a drink for the other as both kids are begging me to eat. Yes, even then, I have to hold my tongue and make it look like no big deal. It isn't always easy, let me tell you. But sometimes, you just have to keep on moving no matter what. No one needs to see how irritated you feel inside.
My children already have to bear the major burden of this disease. But, they do not need to be taught to go about it with anger and negativity. And whether I express my thoughts out loud or not, my behavior is most definitely teaching them how to feel about it, even now at such a young age. Having a bad attitude and airing out my frustrations for my kids to see is not healthy or appropriate, as it's not how I want them to approach the disease in their own lives. Instead, I want them to remain carefree and happy for as long as life will allow. So, I am not going to plant seeds of bitterness and sadness in their hearts by showing them how much I hate these pills or dread setting up chest PT every day.
As my two girls get older and express their own frustrations over their rigorous CF care routine, I will empathize with them and give them the freedom to get mad about it from time to time. However, I will teach them that although there are some things in life you just can't control, you can control how you respond to them. It is natural to get mad about the things that are hard and burdensome in your life, but those negative feelings need to be short-lived. I want them to be able to move on and divert their attention to the good things around them instead. And as a mom, whether you like what you are doing or not, just try to smile and find some fun in it when you can. Because while it might not always be easy, this life is still pretty amazing.
