Trials and Tribulations

As I reflect on the topic of cystic fibrosis, I think about all the people who know nothing about it. People who have never even heard those words. Families that weren't effected by the monster that no-one can prevent, nor get rid of.

Being a first time mother, having to cope with my infant son's diagnosis. I've seen first hand how such instances can effect one person in particular, as well as an entire family. Sickness is common in my family, but nothing like this. For instance, my uncle was born with glaucoma, and ultimately lost his sight. My aunt was born with severe allergies, and skin problems. Yet, my mother was born perfectly healthy. Every family is different, and effected by different cases. Some more severe than others. Although my husband and I were born healthy, genetic diseases such as this haven't occurred in our families up until this point. In order for a baby to genetically have cystic fibrosis, both the mother and father have to be carriers. When you're pregnant, you are tested for things like this. My midwife never informed me about me being a carrier, due to my medical history and no known history of the illness. She didn't request to have my husband's blood tested, also because there was no known history of CF in his family either. Come to find out, we are both carriers for the same exact gene; DF508. The science behind cystic fibrosis is lengthy and confusing. So touching on the subject, we both carry the same gene, we have the same blood type as well. So our son's chances of carrying CF was pretty high. But his chances of actually having CF were even higher. Thinking back on my train of thought when I was thrown all these numbers, chances and statistics, I was horrifically confused. But I studied, researched and reached out further into the specialty hospital for extra information, training, videos, and support groups. Being the introvert that I am, I never attended support groups, or the mom to mom dinners. It's just not my thing. But having a sickly child is a battle all in itself. And even through all the hardships and tribulations my son has been given, he has prevailed. Given the odds, he has broken multiple records with the specialty hospital regarding weight gain, height and overall growth in the CF world. Which is music to our ears as his parents and caregivers. Especially mine. But it doesn't come easy. I had to buckle down when given his diagnosis and make a strict medication schedule as well as make it as comfortable and fun as possible. Given the circumstances, he will never be normal, but his dad and I aren't normal either; so he fits in with us perfectly. I don't want him to look at this as a disability, but more of an obstacle. With the medication schedule that I have engraved and instilled, I'm hoping it will give him a little more freedom in ways he may not see at first. But I also want him to know for him to be as normal as possible, he has to be as healthy as possible; given his situation. He won't be able to play contact sports, like the other kids. And when playing any sport he has to pace himself, and his breathing. With that, he will know and understand the importance of his medications and breathing treatments. Being his main caregiver, I have to stay informed and upfront on any and all information. He has to visit his CF team every three months. He has throat swabs (mucus cultures) done, he has labs every six months to monitor his vitamin levels, enzyme count to ensure his enzyme medication is the proper one, as well as many other factors. It is important that his dad and I both attend these appointments because we are always refreshed on recent and new topics, illnesses being spread, etc. He is also almost always prescribed a new medication at every visit. Which comes with dosage information, information on what it is, contains and does. As well as training on how to administer and so forth. I hate having to medicate my child as I do, but without it, he would be even more sickly, and possibly living in the hospital full-time. Luckily science has improved.

The life expectancy of a person with CF ten years ago, was 22 years old. As of today, its 47. It has more than doubled in ten years, thanks to science and dedication. I wouldn't say my son has a common mutation, nor does he have a rare one. But none the less, its there. We manage the best we can with what we've been given. We are no where near made of money, and we don't have a huge bank account. But we do what we have to, to ensure he has everything he needs. My husband works 12-14 hours a day 6-7 days a week, to provide for us as a whole and to make sure I can stay home with him and handle the strenuous medication schedule that he is on and accustomed to. He could definitely be worse off than he is, and we are rather fortunate to have him as well as he is, considering his misfortune of having this ugly disease. If I could trade places with him, I would in a heartbeat. But knowing that I was chosen to be his mother, and lead him towards the better side of CF; I am thankful. He has kept me on my toes, from the day I found out I was pregnant.

Even through all the troubles, sicknesses and tribulations we have gone through as a family effected by cystic fibrosis, I realize how blessed I am to have such a huge support system. Our families have been our backbone through our journey, without fail. I couldn't be more thankful for them. And even though I have times where I'm down and feel like I'm all alone, I know I'm not. I try not to focus on the negative. I try and boost up the positives. But being the forefront of this life with a disabled and sickly son, it's tiring and overwhelming at times. But you'll never hear me say "I give up," or "I don't want this life anymore." I am blessed with the life I've been given. I am blessed to have a husband who wants me home with our son to care for him, just as much as I do. And I am more than blessed, that God gave me this beautiful baby boy snoring sound asleep next to me. And although he's sick right now, he is happy, healthy—aside from the sickness he has right now—and full of life and love. So, in all honesty, I am far more than blessed with the life I've been given.