How exactly can 100 grams make anyone cry?
When you go to the Cystic Fibrosis clinic for your 3 month check in and your little guy not only hasn’t gained weight in 3 months but has lost 100 grams. Sucker punch to this CF momma’s heart.
Here’s the place where only other CF mommas (that’s what mother’s of kids with Cystic Fibrosis affectionately call each other), can possibly feel the devastating blow of -100g.
“Why so upset over 100 grams?” most people would ask.
It means that the last three months of us taking extra care to build high fat, high protein, high calorie meals and snacks didn’t work. We have to work harder. More high calorie Pediasure drinks. Dietician wants him drinking 2-3 cans per day. Would you want to drink that? I know I wouldn’t. Do the math. That’s 90 cans per month. I just ordered that and it takes up my front entryway. That’s 1095 cans per year. AND I have 2 kids with CF so that’s 2183 cans per year! That’s a lot of Pediasure and trying to get them to drink it means having three different flavours on hand and doing challenges and bribes and games to convince them to drink it. Some days it can be a fight. We try not to worry too much if they don’t feel like it but we still press on to try and convince them that it’s important. Our boy thankfully likes it and drinks a lot but still needs more.
I spend hours finding ways to add salt and more calories into their diets. They need to have some weight on their tiny frame bodies so that if they get sick they have a bit to lose and it also helps them breathe easier. They use so many calories just breathing each day so they need way more calories than a regular child. This is our battle. This is why they say it’s a fight. It’s a fight just to get them to eat and drink enough when they don’t even understand why.
Now don’t get me wrong. It’s not just my battle is it even more so theirs. They will spend the rest of their lives fighting against this disease to live and to breathe. Since they are young, it is for me to battle for them. I have to fight for their needs to be met. I have to argue with people over who is paying for certain drugs. I have to track and record everything from how often they poop to how much they eat and all their medications in between. We CF mommas are the generals for the small soldiers.
Today, I feel like I have been physically beaten. Punched in the gut.
I fight so hard to try and get them to gain weight. Today I feel like I’ve been in the trenches for three months and have not gained any ground but lost territory. The depressed feelings that brings are real.
It’s not just their weight we battle but also germs. Now that is an invisible war almost impossible to win. We wiped down the table with Lysol wipes before we sat for half an hour to wait for the three grocery bags full of prescriptions (and those are just for today, next week I go back for the rest which will be another six bags). We try everything we can to see where possible germs are lurking and we try our best to wipe them out before they can invade their bodies and attack our children’s lungs.
Then there is the regimented medication schedule. They both got put on 4x per day antibiotics. Goodie! An extra 40 pills to get them to swallow on top of the 20-30 they already swallow per day. They already sit and do chest therapy for 40 minutes a day and now they have added an extra 3 vials of antibiotics that they must inhale on top of that increasing the time to 40 minutes in the morning and 40 at night. Times that by two since there’s two of them! That’s a lot of You Tube videos and sitting for this momma. I am not in the trenches alone. I will call on my family and friends to help out with this increase in sitting. I can’ t physically do it. I am so thankful for my support. I know some people don’t have any. I feel for those mommas. They are stronger than I am. I hope that those lone rangers can find friends who they can train to help out in times of illness and extra medications.
So if you see a CF momma who’s looking a little battle worn, maybe this article will help you better understand why. This fight is ours too. It’s a fight for the lives of our children. The harder we fight, the healthier they can be. The battle only ends when we lose. And that means they have lost their battle against this disease and will take their last breath. I hope I can help them fight it for a long time to come.