When your child is in treatment for cancer, you are taught that even a common cold can be deadly. But when off treatment, you’re told “it’s just a cold, they will be fine”. The change in thinking is very difficult to wrap your brain around and often, common sicknesses leave us cancer parents in a state of constant worry, panic and stress.
This week we are dealing with colds, strep, ear infections, teething, growth spurts and to top it off, the girls received their first set of vaccinations since treatment. There hasn’t been much sleep in my house since Sunday, which adds to the paranoia. The paranoia of “does this sickness mean relapse”.
I haven’t always been a worst case scenario type of person, and I wouldn’t even call myself that now. I consider myself a realist. My reactions to certain situations are based on my life experiences. When I go into the doctor 34 weeks pregnant in severe pain, with high blood pressure and a headache and the specialists say “you’re fine”, but you end up delivering your babe the next day when your kidneys and liver have shut down due to HELLP syndrome; when 3 doctors tell you your 13 month old is fine even though she mysteriously can’t walk suddenly, and they assure you that she just bumped her leg, but it ends up being osteomyelitis that abscessed on the growth plate of her femur; and when you’re told your twins have bug bites and those “bites” turn out to be Acute Myeloid Leukemia, you start to think that a tiny little cold can turn out to be something more than a little cold. You question every sneeze, every sniffle, every cough, every rash, every time someone sleeps longer than “normal”, everything.
This paranoia and these underlying fears bring on a multitude of other emotions. Frustration, guilt, annoyance, fear.
Like any other mother of a child with a cold, strep, ear infection, etc., taking care of that child can be very frustrating. I’m frustrated at 4 in the morning after not sleeping all night and holding a babe upright so she can sleep. I’m annoyed when I finally fall asleep after being up for 30 hours straight only to be woken up by the roar of a babe 3 minutes later. But like any other mother, this frustration and annoyance is fed by a constant state of worry and always wanting to do everything for your child to feel better. But for me, these annoyed and frustrated feelings often turn into feelings of guilt.
I feel guilty because we are home. We are in remission. We are doing better with each passing day. Kendal is in daycare and thriving, but I’m still constantly worried about how much she is sleeping. (fatigue can be a sign of relapse) She sleeps 12 hours a night and takes one 3 hour nap a day. Really it’s no more than the average babe her age, but I still worry. I’m annoyed when Kenedi will only sleep if I’m holding her. I feel guilty when I get so mad at her just wanting to cuddle because I know there are many, many parents out there who would do anything to cuddle with their children.
With all those emotions, another one always rears its ugly head. Fear. The biggest fear right now is of course relapse. 8 months ago today, we heard the wonderful news that the twins were in remission after round one of chemo. The doctors came in and told us and we said “cool”. To which they responded “THIS IS GREAT NEWS!” Yes, yes it is. But I’ve said it before and I’ll say it again, we were, and will remain, in a state of being cautiously optimistic.
I want to pause here and say that yes, I have all of these emotions on what sometimes feels like a daily basis, but I do not let them consume me. I make a point each and every day to find one piece of joy in my day. Some days it’s EXTREMELY difficult to do, and other days I have a plethora of joyous moments and memories. I think that that’s normal for any parent to have. There will be good days and there will be bad days. That’s part of motherhood.
That being said, the reality of it is, I don’t think there will be a single day that goes by that the thought of relapse doesn’t cross my mind. And I’m sure that’s true for many other cancer mommas out there. That’s our life. That’s our reality. But that doesn’t make us negative people. Like I said, I feel like it makes me a realist. And it also makes me appreciate every moment even more than I think I would have before. Even those moments at 4 am when I’m exhausted, crying, covered in snot, afraid to move in fear of waking a sick babe, I’m grateful. In that exact moment I may not be, but overall I am.
That’s one positive thing cancer has given me. The ability to find the joy in the darkest moments. The moments where I normally would just sit and say “THIS SUCKS”. I find joy. I find it somewhere in those moments. And for that, I’ll forever be grateful.
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