It’s just that time of day when it all builds up. Dinner has been made. The tired and hyper 4 year old is up and down from the dinner table making silly and annoying sounds at her baby sister. The kitchen counters are covered. Dirty pots and pans on the stove. It’s been a long day and I am tired. The oldest is begging me to play. Both girls need to be bathed and put to bed. The baby is fussy and ready to eat. But first I have to get together all of her evening medicines. The stressors have been stacking one by one all day and, sometimes, its those last few things that are enough to push me over the edge.
The evening routine is already a lot for a mother of two but the added work required of me is in my face and lately, it has left me feeling angry. I have been doing it for almost 5 years and now I am reliving each stage all over again. There is no end in site. There is no cure. I hate that my children have Cystic Fibrosis. And I will be real and honest, I am just so tired of it.
I am tired of making my children take medicine all day long. Every. Single. Day. I am tired of making my 4 year old sit down and be strapped to a vibrating vest across her chest while breathing in extremely salty water, twice every day. I am tired of gathering 3 pills, a spoon, applesauce, salt, and draw up other medicines in a syringe every time I feed my baby. I just want to nurse her without all of those extra steps. I am tired of sticking a spoonful of beads and salt on my baby’s tongue every time she has to eat. I am tired of sterilizing breathing equipment every day and putting all those pieces together twice a day every day. I am tired of the countless trips to the pharmacy and the doctor. I am tired of carrying bottles of enzymes with me everywhere I go. I am tired of finding oral syringes and baby spoons and empty capsules all over my house, in my car, and diaper bag all the time. I am tired of having to get my baby out of her crib every night to pat her chest while she’s sleeping. I am tired of having conversations with my preschooler about why it’s important for her to take enzymes and do chest PT.
The list could go on…and on… CF is in my face every time I turn around. And no, I don’t even really want a break. That doesn’t help. They still have it. They still have to take the medicines and do the CF related stuff all day. They don’t get a break so I don’t deserve one either. Having someone else give the enzymes or watch my kid for a day while I go out shopping doesn’t really help ease this burden for me. Sure, I greatly appreciate it, as would any mom! But it doesn’t really recharge me for the countless times I have to do it on any other day! I am reminded of this disease every time I open that bottle of pills or tell my daughter “it’s time to do your vest” and now with two, that reminder comes at least once an hour. By the end of the day when I’m opening that medicine cabinet yet another time, it makes me scream on the inside.
But it doesn’t matter how much I dislike doing these things. Sometimes life gives you something you didn’t choose. I did choose to be a mother and that is the greatest choice I have ever made, but I did not choose for them to have CF. The only choice I have now is how I will deal with it. I love my girls more than anything else in this world and no matter how tired or frustrated I am by all I have to do to take care of their illness, I will never stop doing my best for them. I think it’s natural for me to get mad, tired, fed up, and down in the dumps about this from time to time so I will allow myself that. But after I have my fit and vent my vent, I will get over myself and just do it. I will look at their faces and be reminded that every single thing that I do for them is out of my deep love for them and worth all my time, my energy and my self-sacrifice.
And honestly, I think it is a good thing that I get to feel this way and that I am writing it down. Because one day, about 10-15 years from now, when they are teenagers (or probably even before that), I feel certain I will hear these same feelings from them. “I’m just tired of all of this and I don’t want to do it mom!” and I will say, I understand. I don’t know how it feels to actually have the disease, but I know how it feels to manage it. I will tell them that there was a day when I had to do it all for them, for the both of them, even when I didn’t want to. I will listen and I will empathize and I will encourage. I will confess that there were days I missed a dose of medicine or skipped their breathing treatments and I will give them grace when they do the same. But between now and then, I hope I can teach them the importance of taking care of themselves and doing the best they can even when it’s hard, even when they are tired, and even when it’s the last thing they feel like doing. Because literally, their lives depend on it.