Not For Lack of Want

The Great Strides Walk is coming up quickly this year and I’ll be completely honest, I haven’t done a thing to promote, raise money or prepare. I did design t-shirts to sell, but haven’t ordered them. I have registered, but my balance is still $0.

Last year, I was all up on it. I made a video for the schools. Hit all the schools up to have it shown and educate the kids on CF. I designed t-shirts…pushed them, sold them, shipped them. We all showed up at the walk and had a great time (despite a severe bloody nose for Colby and a trip to the ER…bleh).

This year, I am less than motivated. Not for lack of want, but we have been having a great year and been crazy busy with ‘normal’ life. We’ve only had one “tune-up” and they sent him home a day early on good behavior. Well, ok, not really. But, for excellent PFTs. Haha.

Last year, CF was very real in our lives. A “tune-up” every 6 (SIX!) weeks and constant worry that our hard work wouldn’t pay off.

Well, it did! He went from lung functions in the 60% range to a [freaking] 99%!!!!!!!! (There aren’t enough exclamation points in the world to express my sheer joy!)

So, am I taking that progress for granted by not commiting this year to record charitable donations? Am I a lousy [CF] mom for not pushing shirts and raising awareness? It is a serious need in our little CF community. Donations go directly to research and progress for a cure. I know it is a big deal.

Maybe I just need a break from all the hub-bub of CF this and CF that. Last year was exhausting. We had to plan around all of his scheduled admissions and work so hard to get him back up to where he needed to be. We did a month of home IV’s, which I hope to never have to experience again. Early, early mornings and late, late evenings…little sleep and infinite worries that I would fail him in some way by not doing it perfectly. The pressure was so immense.

Granted, it is only April, but we have been running at a good pace. Nothing crazy to deal with, no ‘exacerbations’ and a bit of a plateau in worries. It’s been so nice. I try not to stress about what’s around the corner, however, I know there is always a chance that things could swiftly shift downhill. Ah, the joys of CF.

Maybe I can will myself to get motivated about it, maybe I will find rest in where we are right now and keep pretending that everything is great. I won’t know until it comes down to the wire, I’m sure. (I work really well under-pressure.)

For now, I am just going to accept the peace that comes with this moment, in this quiet. It is so rare. The panic and fear will return, I am sure of it. But, for now, it is nice to focus on schoolwork and friends and housework and gearing up for another cross-country season (he is so ready to start training again).

Cheers to a ‘normal’ year for us….and prayers that this holds for a while…..

Just Breathe

“Have you taken your meds today? It’s time to do your smoke medicine. Do you want the vest or manual chest PT? I think you should wear a mask today at the store. How many times have you pooped today? Make sure we don’t forget your meds for school. How about your puffer? Did we do that today? Please bring me your milk bag and extension tube……..”And so begins another day. These are the conversations between mom and son that have essentially become co-workers, fighting CF. All the strange things that must be considered and monitored. I wonder what it feels like to be a mom that doesn’t have to inspect a 9 year olds poo. Or get to just worry about friends at school or grades. When there’s a sniffle, just to make chicken soup and baby their child, instead of sheer panic. I wonder what that’s like. Because my days are quite different than most mothers. They are filled with medical regimens, physical therapy, inspecting and listening, worrying and fretting a hospital admission and administering countless prescriptions………… sometimes I wish I could just breathe.

In 2002, my first born son came prematurely and in distress. I barely held him before he was rushed to Childrens’ Hospital from the small town hospital he was birthed at in Jacksonville, AL. At two days old he had his first surgery for an intestinal blockage. The doctors told us that there was a long road ahead of us, but not to worry. They were going to take good care of him and I just needed to get some rest for the journey.It was a month before my tiny little boy started to turn the corner. We were finally moved to a private room and out of the special care unit. I was elated to get to hold him anytime I wanted and put him in his clothes. However, just as we were settled into our room and enjoying progress and each other; his DNA tests came in…..Cystic Fibrosis. I had heard of it, but had no clue what it was.

Cystic Fibrosis (CF) is a terminal, genetic disease that affects many organs of the body. The disease causes the cells of the body to not allow salt to travel into the cells and effectively throughout the body. The lack of salt in his cells means that fluids in his body become thick and sticky. Mucus becomes our enemy and hides away in the lungs, the digestive system and the reproductive system. The mucus plugs ducts that prevent semen from being released; therefore, he will be sterile. The mucus plugs the ducts in the pancreas that release enzymes and break down food; therefore, his body cannot digest food on its own. Mucus will soon inhabit his lungs and the body will work against itself to try and fight it, creating permanent damage and eventually destroying the lungs.

For the first four years, CF was really little more to us than some capsules sprinkled on applesauce before each bottle or meal. These capsules had man-made enzymes that digested his food. Of course, not perfect and he still had trouble with greasy, messy stools but he was gaining weight and thriving. I was encouraged that he had no lung infections and easily fought off colds through those years. Maybe he was the exception! But the doctors assured me, it’s not IF it’s WHEN.

At four, my son was hospitalized for the first time for what we know affectionately call a “tune-up”. It is a period of 10-14 days of breathing treatments, IV medications and chest physiotherapy (or chest PT) that helps loosen mucus from his lungs. He sailed right through it. Encouraged still! We had to be the exception!  

As the years passed on, the “tune-ups” became more frequent; the medicines added to, the at-home regimen lengthened. Getting a cold became harder for him to fight off and almost always meant a hospitalization was imminent. It’s not IF, it’s when.

Now at age 9, this disease has officially taken over our lives and daily thoughts and worries. Lung damage has been confirmed and it’s now a fight to recover what can be and maintain the rest. We have had three “tune-ups” in the last 6 months and now plan on another three for the remainder of the year. Doc says it time to fight. Based on the most recent tests, his lungs are operating at around 60%. The remainder is damaged and unhealthy, but he is optimistic that we may be able to recover some of that. A portion is already permanent and irreversible.

While our fears are growing there is hope in sight. With the help of the CF Foundation, researchers have been relentless in finding a way to move the salt in the bodies of CF’ers more effectively and have by all accounts found a “fix”….for 4% of the CF population. My son is not included in that group. We must still wait and fight. It is hoped that in the next 4-6 years that there may be such a fix for his strain of CF. But, the damage done until then cannot be reversed. What is done, is done.

So, we hold fast. Praying that the scientists, the researchers, the doctors are successful in their quest. I can’t even fathom the possibility and we can’t rest until then. We can’t get complacent. We can’t stop fighting. But, if AND when, I will finally be able to make chicken soup when colds move through our home, I will be able to relax in the evenings and not have to do breathing treatments and chest PTs. I will not have to shook my other two children to grandma’s house while we weather another “tune-up” and not have to schedule our lives around air quality and medical equipment.

I will be able to just breathe.

And my son will be able to eat without pressure, poo without inspections, play without worries of germs, sniffle without fear of a “tune-up”.

But best of all, he will be able to just breathe.

Colby’s CF Education Video

High Speed Mom Blog

The greatest job in the world….and the most difficult one. There are ups, way-ups and downs, waaaay-downs. I have experienced many a roller coaster and learn with each corner and roll. I hope to find others that can relate, connect and enjoy. Laughs, tears and the hopes of motherhood…….