Sometimes, I can't help but feel envious watching other healthy children eat and drink normally, without the need for medication. Anytime Sasha wants a bite of my muffin, or a glass of milk, or a tiny piece of chocolate, or just about anything, she has to have enzymes so that her body can get the help it needs to digest the fat and protein in the food. Of course giving Sasha enzymes is a minor request in order to keep her growing and as healthy as possible, but still there is that moment, and it usually is just a split second, where I feel sad. And frustrated. And even angry at times.
The average CF parent purchases more applesauce in 6 months than you likely will in your whole lifetime. Applesauce is what CF patients generally have enzymes mixed in. Until Sasha is old enough and able to swallow them whole, applesauce is how she will get these very important beads and powders into her tiny body. There have been the rare times when mama forgot to pack some applesauce so we are searching for something appropriate that would allow us to mix them in. For example, just a few days ago, it was honey. Not ideal for mixing enzymes as the mixture should be acidic but regardless, Sasha loved it!
Everyday, we have to figure out new and interesting ways to have Sasha sit still for at least an hour for chest physiotherapy. Since it is pretty much impossible to get an almost 2 year old to stay still that long, we usually break it up into smaller sessions throughout the day. Some days Sasha is cooperative and doesn't mind the percussions, and other days it feels like I am torturing her. Trying to make her sit in different positions for long enough to make sure we get all the right areas can be an overwhelming task some days. This is done so that we can clear Sasha's lungs of any thick, sticky mucous that may be building up. So unfortunately, whether Sasha likes it or not, it is definitely necessary and has to be done.
I guess my main point is to be grateful for even the littlest of things in life. Being able to eat what you want and when you want is a luxury that not everyone is blessed with. Not having to spend up to 14 hours a week (or more sometimes) doing chest physiotherapy with your child gives you that much more time to just play and have fun with your sweet baby. Waking up everyday and not having the fear of the disease and how it will affect your child today hanging over your head is something I pray for every night. And even though we have these additional treatments to do for Sasha, we are still incredibly grateful because we know that there are so many other families that have to do far more to keep their child doing their best.
Regardless of medications, physiotherapy, and hospital stays, Sasha is just like any other 21 month old little girl. She is full of energy, loves to laugh, has her happy days and her not so happy days, gives the best hugs and kisses, is incredibly smart, and already has a huge heart. She loves to run around the house and be tickled, her eyes become glued to the television when Frozen is on, she starts to throw her food on the floor when she is done eating, she gets time outs when she doesn't listen, she has 8 different stuffed animals that she needs to sleep with, and she loves when mommy and daddy make animal sounds. She makes our lives brighter with each day that passes and we fall more and more in love with her everyday.