My Melmoirs

The past few weeks have been a whirlwind of busyness, togetherness, magic, and sheer exhaustion. Christmas was bittersweet because the month leading up to it was so beautiful and full of joy and love that I was a little sad to see it end with material "stuff." Yet at the same time, we're extremely humbled and grateful to have so many people who care about us. If you ask me, that's the real gift! I love the idea of giving experiences, so we gave Myles a quick trip to the American Museum of Natural History in NYC. My little science junkie had been wanting to go for more than 6 months and was beyond excited to finally get the chance.  I still haven't been feeling well and wasn't feeling up for the trip but I'd booked the hotel weeks ago and the nonrefundable rate was much cheaper. So I decided to suck it up and make the most of it.   It was insanely crowded and chaotic, but we were able to carve out moments of stillness and happiness. The museum wa...

Life is not always easy. Even in the spirit of optimism and reframing, there are still (and will always be) occasional dark moments. I am committed to sharing my experiences openly and honestly so I'd like to share why the past few days were so tough for me.  Slowly, over the course of years, the upper lobes of my lungs have been losing volume, incapable of taking in as much air. If you put your hands and wrists together then, keeping your wrists together, open your hands so they make a straight horizontal line that's how our upper lobes are supposed to lie. Now, if you raise your hands to make a 'V', that's how my upper lobes look.  Both of my upper lobes also have atelectasis (small pockets of collapse) and bronchiectasis (scarred, hardened, and damaged areas). All three of these conditions are permanent and irreversible.  Last week's x-ray showed some increase in said permanent damage and explained my persistent lung pain.  ...

Truth be told, I haven’t been feeling very well the past month. I started an inhaled antibiotic and completed a two-week course of an oral antibiotic but I'm still experiencing a lot of pain in my lungs, shortness of breath, and my oxygen is dropping again, which hasn't happened for more the better half of this year. Earlier this week I had an ultrasound to rule out blood clots in my arms and am so grateful that was negative. Yesterday I went for a chest x-ray and to see my Cf doc. Not surprisingly, my PFTs (breathing tests) were down about 8% and my x-ray showed some distinct changes in the area of the lung where I’m having the most pain. Therefore, my doc feels it’s best for me to go back into the hospital to start IV antibiotics. The silver lining is that she agreed to let me wait until right after the holidays so I can enjoy them with my family. They’re aiming to admit me the day after New Year’s, the first day Myles goes back to school. While hospitalizations a...

My favorite place to go for walks is a hidden gem secluded off the beaten path. There are hardly any people there, it's super quiet, and always beautiful. However, the things I love about this spot are also the things that make me vulnerable.  It's not in a great part of town and, as a female walking alone, I can't help but be aware of the fact that if something were to happen and I was to yell for help--even in the long shot someone heard me--it would be hard for them to get to me quickly.  Yet this potential "danger" is also one of the things I love most because it challenges me.  You see, the news tells us that men wearing hoodies are a threat and stereotypes tell us that people missing many of their teeth are often drug addicts...and that drug addicts will do anything for a buck to support their habits. The list goes on and on.  So I began using my walks to challenge my subconscious biases. When I see someone on said unbeaten path who looks question...

Sir Isaac Newton's third law said that for every action, there is an equal and opposite reaction. All due respect Sir Newton, but the older I get, the more I’ve realized that the opposite reaction is not always equal, sometimes it’s greater than. Take for example, when life throws some challenges my way and I find myself in a funk or swirling with negative emotions. The most sure-fire way I get myself out of those ruts is to release some kindness and/or positivity into the world. Each time I do I immediately feel happier and continue to keep the good ripples going. Positive ripples are contagious. In my son’s short life there has been no shortage of negativity in the world. It seems like it’s one hate-filled tragedy after another and I’ve had to navigate which ways feel best to address them with him — heck if I have a hard time soothing myself, how am I supposed to help him?!  The easier route would be to keep him sheltered and avoid talking about them all together. I don...

That's right, I said we . It may have been me up on that stage, but it was the bevy of support behind me, lifting me up to get there.  There really is a village behind every success, so in addition to thanking all of you, I also want to thank Charlotte at  SpeakWell Partners  for all of her super helpful public speaking tips.  I have been overwhelmed with gratitude for every ounce of support along this journey. Truly. Madly. Deeply. Thank you!  There was so much emotion packed into three days: panic, fear, elation, excitement, anticipation, love, appreciation, purpose, pride, and even a little sadness.  Overall, I'm proud of our accomplishments and even more proud that I was on the first-ever all-female NACFC plenary panel (and only the second CF patient invited to sit on a plenary stage!) The honor of it all wasn't lost upon me and the feedback we received for both sessions was immensely positive. What I spoke about wasn't rocket scienc...

It's happening, it's really happening! I am happy to report that while I did have a little more bleeding from my lungs, each time was small and contained, so I'm heading to the Conference! From the bottom of my heart, thank you to all who sent positive vibes, prayers, and messages of encouragement. Each and every message meant the world to me and I'm carrying them in my proverbial pocket with me. I'm also happy to report that I've been proactive in curtailing my anxiety and it's helped a lot. At this moment, I feel confident and focused. Will I still feel this way just before I go on stage? Probably not, but one can hope.  The CF Foundation has asked Mark to record Friday's Nursing Session on Facebook Live using my personal Facebook page (Melanie Lawrence), which will be open to the public. I will appear near the beginning, middle, and end. However, the session will last two hours and I certainly don't expect anyone to watch the whole thing...

Hello, my friends. It's been a while and I've missed connecting with you all. There's been much going on, so without further ado, I'd like to share some big news.  It is with both excitement and trepidation that I will be speaking on two panels at this year's North American Cystic Fibrosis Conference (NACFC), the world's largest event showcasing advances in CF research and care. Approximately 5,000 healthcare professionals will attend from more than a dozen countries.  Due to infection protocols, CF patients are not allowed to attend but can watch some of it livestreamed or view archived videos. Since those living with CF cannot attend in person, only a handful of us have been invited to speak and it will be carefully orchestrated that we avoid one another. In other words, out of 30,000 US CF patients, I'm one of the few being flown out to present this year (no pressure!). I am deeply honored...and petrified. If you've been following my blog, ...

The four-day trip was magical indeed. It was tough to fit so much in (and have the energy for it all) but we sure did make a lot of memories. Mission accomplished! Most importantly, Myles had the time of his life and the family vacation bar was set high for sure.  When I asked Myles what the most magical part of the trip was for him he replied "Everything! I loved it all!" The parks were fun and magical for sure, but the real magic for me lied in the simplest of moments: Watching Myles' face as the plane took off. Myles (upon our arrival in Florida) exclaiming out the window "I'M ON VACATION!!!" How he had to stop every 20 feet to try and catch lizards. Seeing Myles and my mom cruise around on the motorized scooter (minus the minor scooter accident, of course). The look on Mark's face after we rode Avatar and my mom's face on the water rapids ride. So many belly laughs. Myles and my mom quietly sitting out on the balcony together. Hold...