Just Breathe

Nine months in; nine months out. Jordan has reached another milestone. He's the largest baby I have had at this point, weighing 19 pounds (chunky monkey), rolling and babbling (or singing) nonstop. While he is still refusing to crawl forward, he does creep backward similar to how Harper did at that age. 

His diagnosis still baffles me. When I look at my son, I see the healthiest of my three children, but I know that his growth and size has not been without constant monitoring and over-fortifying his food intake. Jordan consumes approximately ten additional ounces of milk compared to his sisters at the same stage. Also, his milk contains formula, vitamins, and is topped off by a spoonful of applesauce covered in enzymes. When people comment on how large this baby is, especially in comparison to my other children, it catches me off-guard because we weren't expecting him to be the bruiser that he thankfully has become. BMI is crucial to CF kids because it often predicts lung functionality in the future. I am elated to report that he is in the 48% for his BMI - meaning he's a strong baby with strong lungs! 

Still, I am careful to realize that positive news can change faster than I'd like. Right now, our priority is his digestion. If he doesn't have his enzymes, he won't absorb the nutrients put into his body. We monitor his intake with great care, and in turn, we scrutinize his output to analyze whether the enzyme dosage is still accurate and if the calories consumed counted. Changing his diaper is a two-person job only because it can provide us with so much needed knowledge about our son's health. We also test his skin to monitor his sweat; Jordan sweats out salt at a significantly faster rate than the normal person, which means he may be depleted of necessary vitamins and nutrients that he needs to maintain his weight. The phrase "so salty" has a completely different meaning in our house.

Amazingly, he has had not needed lung treatments, although we have started chest percussion therapy to make him more acquainted with this treatment when he really does need it. This therapy involves forcefully tapping or hitting key areas on his chest and back to clear his lungs of any mucus build-up that may occur for approximate 10-15 minutes each day. Regarding his overall health, barring one cold in January that Willa also had, which led to a brief stint on a nebulizer, we have been blessed with near-perfect health with Jordan. This prognosis will change, of course, which leaves us jumping with every teething induced cough or breathy sigh that any baby produces when he is rolling around on the ground. The question of, "When will he get sick?" and "How sick will he become?" haunts me. When I actually take a moment to be still, I have to admit that I find that these questions creep into my mind and can consume my thoughts. I have tried to remind myself that I could ask these questions about any of my children or any of my loved ones. Life is fleeting and can change all too quickly, and as a result, it is not productive to allow myself to drift into a future that is not currently my reality and might not ever be. 

Scouring social media for answers has led to peace of mind and also fear. I want real stories; innately, I am not satisfied until I fully understand a problem - so can I find an answer to this one? The answer is a resounding no, but personalizing CF by allowing myself to become acquainted with the stories of people who live with CF, parents with CF children and people who love CF patients has brought me hope. With every Instagram post I have seen, after searching the #65Roses hashtag along with several other CF-themed links, I have come to realize that this rare disease is not without its blessings. People in this community seem to continually radiate positivity and gratitude for each breath they are given. That is not to minimize the horrible side-effects and illnesses that my son could face, but it gives me a sense of peace. My son has inadvertently given my family the gift of realizing how precious and special every moment is, and for that, our lives will be fuller. Knowing how "loquacious" he already his, this kid is going to have much to say and share with this world, which leads me to believe that he will find a way to make this world a better place.

Do I wish that I could take away his CF before he begins to feel the effects? Of course. I would do anything to be able to make this a reality. Do I hope for a cure? Absolutely, and I do have tangible reasons to believe that it is coming. Am I grateful for the cards my family has been dealt? In a way, yes. Had I known that Josh and I were carriers for CF, I am certain we would not have intentionally had three children. He has completed our family in his own perfect way, and I will forever be grateful for all three of my tiny humans. Could I imagine my life without Jordan? No. The more his personality grows, the more apparent it is that he is a joyful and charismatic little person. He has illuminated my world, and I am excited to watch him continue to shine.