There is a smile on my face but a burden on my heart so big I could scream. Today, it isn’t sadness or fear. It’s just a burden of this thing that just never goes away. It has now been a part of my life for 6 years, 4 months, 1 week, and a day. Sometimes it lies somewhat dormant and doesn’t seem to bother me. Just a habitual piece of my life that I can’t escape from. Other times it just weeps silently, hidden within itself. A hurt only I can feel but no one else can see. Especially my girls. It always seems to heal up temporarily and I kind of forget it’s there as I move about the rest of my life, but then it opens back up again, time after time. This disease, their diagnoses, this chronic and persistent and never-ending affliction has been accepted but still, there are times it just aches and pesters me like nothing else.
The time it takes, the way it hinders the normal flow of life, the monotony of it all, the constancy of it – it just feels so irritating at times. I go about the day-to-day routine, taking care of the girls, watching them play, chasing after housework that never feels completed, running here and there, managing tantrums, picking up toys, cooking meals, giving out hugs and kisses, snacks, baths, stories, chest PT and PILLS! Yes, that nuisance of a machine I have to make them sit down for 2 times every day and those stupid, yet life-saving, enzyme PILLS that my children must take every. time. they. eat. Please pardon my attitude, but this is real life and I am a real person and some days I just hate seeing these things! I should be more grateful, I suppose. And on good days, I guess I am. It’s a love/hate relationship really; I love that they are available to us and keep my children alive and nourished but I hate giving them at the same time.
I get so tired of them but yet they are absolutely necessary. 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.) Yet…I smile and giggle and make fun games out of it and cheer when my 6-year-old swallows her 6 pills all at once or when my almost-2-year-old picks up her own spoon of medicine and gives it to herself. I suppress my bitterness towards it and keep calm because… my children are watching! 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 all the hard things that are thrown at them.
Of course, all of us as parents should recognize that our attitude shapes that of our children. They mimic everything we do and learn so much about this world based upon our perception of it. This weight of parenting already feels enormous, doesn’t it? But this chronic illness just doubles the emotional load and hands me an extra responsibility to muddle through every day. I know I do not do a perfect job at this but I really try to remain continuously aware of how I talk about it or react to it in front of them and I try to make their CF care as positive and fun for them as possible.
My children are already going to have to bear the burden of this disease. But they do not need to be taught to go about it with an angry or resentful heart. And whether I say it out loud or not, my behavior is most definitely teaching them how to feel about it, even now at such a young age. Of course it is natural to feel frustrated about it at times . I feel mad, sad, annoyed and overwhelmed by all of it often. And I know they will eventually feel all of those same emotions as well. But as they get older, I do not want to see those feelings dominate their thinking and take away from the happiness they should be feeling instead.
So I feel a huge responsibility to help shape their thinking about their lives with CF which means I have to constantly be in check of my own attitude and emotions toward it. Even when in the middle of the grocery store, a restaurant, a dark movie theater, the car, or at the pool, the park, a ball field, an outdoor cookout, or wherever we are as I am digging through my mom bag, fumbling over two prescription bottles, trying to find to find a level surface to open capsules into a spoon of applesauce for one impatient toddler while pulling out more pills and finding a drink for the other while both kids are wanting to eat. Yes, even then I have to hold my tongue and make it look like no big deal. It isn’t always easy, I tell ya. But some things you just got to do no matter how much you dislike it and just keep on moving. No one needs to see how irritated you feel inside.
That doesn’t mean I have to always pretend like I like it or that it’s always happy and raining daisies. I believe it is important they know that I also wish they didn’t have CF and to empathize with how hard it is. But complaining about it, acting sad, or getting angry all the time doesn’t help. Having a bad attitude about it is not necessary and airing it out for my kids to see is not healthy or appropriate. Yes, I believe in being honest with one’s emotions and sharing it with others who need to know, but these innocent souls do not need to know the hurt associated with this disease, yet. Unfortunately, that time will come. They are already learning the responsibility this disease requires of them on a daily basis and are naturally reluctant to comply with all that is asked of them at times. Soon, they will also know what this disease means for them long-term. But right now this is my burden to carry for them, and as their mother, I will gladly take it fully upon my shoulders for both of them.
I want them to stay carefree and happy for as long as life allows 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. And I am not going to teach them to fear or worry about what might happen by telling them about it now. They aren’t developmentally ready for that and there is no point. It will only create pessimism and anxiety that will burden their souls and rob them of joy. We cannot give this disease back. They are going to have to live with it every day for the rest of their lives unless a miraculous cure reverses the gene defect in their bodies. If I throw a fit, huff, puff, sigh, or give off any other clues of frustration when giving their pills, putting their vests on, setting up breathing treatments, or the countless other things I do for their disease, I am sending a message of negativity and resentment. And like I have said several times now, that is not the type of behavior I want to model for them.
As they get older and express their own frustration for having to take so many pills and do the vest and the treatments every day, and the many other even more significant burdens that may come, I will empathize with them and give them freedom to get mad about it. We can (and already do) talk about how we don’t like having to do the things we have to do because of CF, and we can pray that it goes away one day, but I want us to live our lives making the most of it and being joyful despite it. Otherwise our quality of life will suffer. I will teach them that there are some things in life you just can’t control, but you can control how you respond to them. It is natural to get mad about that things that are hard and burdensome in your life, but those negative feelings need to be short-lived. You can get mad and you can feel frustrated, but once it’s over, move on and divert your attention to the good things around you and just try to smile and find some fun in it when you can. Because life is still pretty amazing!