December 11, 2024

This is my favorite time of year (I know, I’m so unique)! November through New Years, to be exact. The cozy nights in cooking your favorite warm meal, festive Christmas parties with friends, trees everywhere smothered in twinkly lights, Nat King Cole serenading the entirety of the season, the chance to wear your favorite jacket, tights, boots, ect… I could truly go on, but this isn’t the point of this post.

The holidays have always been a time of all-encompassing joy for me. Life feels sparkly. This year, however, there is a new dynamic in my immediate family that has made the holidays feel a bit more heavy. My Dad was diagnosed with ALS (Amyotrophic Lateral Sclerosis) three years ago. This disease essentially attacks your nerve cells in your brain and spinal cord. It’s fatal and there is currently no cure and no real timeline for longevity. Luckily for my family, my Dad has had about three strong years of living with ALS since he was diagnosed. We’ve had the opportunity to travel to different countries, enjoy countless family dinners (and countless bottles of wine) and really optimize our time together as a family. My Dad’s diagnosis has encouraged me to slow down in life and not take certain things so seriously. Being present - I mean truly present - with those you love is sacred in the midst of the unprecedented chaos of life’s journey.

Things are getting more difficult as the disease is taking a visible toll on my Dad. To anyone who has ever had a sick loved one - firstly, I am deeply sorry, and secondly, you know how difficult it can be to see someone you love suffer in their own body. It can feel debilitating and helpless. My Mom is currently in the thick of being the sole care-taker for my Dad. Caretakers, please take care of yourselves too. It’s easy to get swept into “savior” mode, but it’s of the utmost important to put yourself first so you can continually show up as your best self for others. I’m having to constantly remind my Mom (an actual angel sent from heaven) of this, especially during the busiest season of the year. My parents have always been incredibly social people. Like, sometimes they make me feel like a loser hermit when they tell me about their jam-packed weekend plans. Unfortunately, now it has become more difficult for them to even leave the house, making their otherwise busy week feel more isolated. I will add a disclaimer that they are so lucky to have the most amazing community of friends who come to visit them and help in incredible ways (you know who you are and we love you beyond). This amazing community helps to make the new normal a bit easier to navigate.

The new normal. Let’s discuss this concept that, I will admit, gives me a pang of anxiety. The “new normal" refers to a significant change in lifestyle, behavior, or expectations that becomes widely accepted as the standard after a major event or disruption. It suggests an adjustment to new realities, often in response to global, societal, or personal transformations. In other words, a new normal involves significant change, which is something I have always been terrified of. I’ve viewed change as the end of something. The end of a relationship, the end of a season, the end of a career, the end of a good book, the end of a vacation - you get it. What I have since come to realize is that every end has a new beginning, meaning that every change will bring opportunity. If you look at life in this way, I guarantee it will make the life-disruptors easier to maneuver.

It’s taken me some time to slowly train my brain to embrace these new normals. What if I was happy with the way things were? I miss the old normals. Where did they go and why must they change? One too many self-help books, podcasts and articles later, I have come to terms with the fact that in order to grow, we must change. We must adapt to the circumstances life is giving to us - the good and the bad. Without change we would all stay the same, a scary place to be, as this contradicts life’s purpose of personal growth. There must be new normals in order for us to reach our fullest potentials. To find love. To find peace. To find purpose. The reality is that there will always be a new normal, and the faster we get to accepting it, the faster we will find happiness.

I’ll have a new normal this holiday, and that’s okay. When life looks different, it’s easy to slip into a victim-mindset and feel sorry for yourself and your circumstances. It’s easy to focus on the negative aspects of all of the changes life has dealt your hand. Trust me, I have been here, at what I can only imagine to be “rock bottom.” It’s not a place I am choosing to live in long. Like anything in life, acknowledge your sadness and move on. I’m choosing to focus on all of the good that has come from my Dad’s illness - quality family time, intentional conversations, incredible travels and a new lease on life, to name a few. Mainly, I am blessed beyond belief that my Dad will be in our living room with my family on Christmas morning. My heart goes out to those who don’t have their loved ones physically present during this season. And if you are experiencing a new normal right now, I know it will all be okay.

Wishing love and light this season

xx, Caroline

June 21, 2024

Hello!

If you are reading this, thank you so much for being here.

I started this initiative after my Dad was diagnosed with ALS in October of 2021. Thinking back on that day, it’s difficult to describe what I was feeling at the time. I had many questions, but we had very few answers, as this disease is still so rare. However, it is becoming more common. As a silver lining, the increase in patients with ALS drives the need for more research and drug trials for this disease which currently has no cure.

Before the family meeting started where my Dad broke the news, we were all riding a high after attending the World Series game in Atlanta, where the Braves eventually went on to win it all. My Dad, being the biggest Braves fan I know, was especially happy to be at the game with all of us kids. It’s a night I won’t ever forget, and an incredibly special moment to be there with my Dad. A few days after the game is when my Dad told us about his diagnosis. My siblings and I sat quietly as my Dad told us of his news and everything he knew thus far regarding his health. There weren’t many tears among us at first. I think it was a shock and we were trying to process everything we were hearing. Ironically, the only time I had heard about ALS was during the ice bucket challenge heyday in the summer of 2014, and my Dad had been the one to dump a bucket of ice on me to “spread awareness for ALS.” Truly, ironic.

He told us not to Google anything about ALS, telling us that it’s not a pretty disease, and Googling would only upset us more. Of course, that’s the first thing my siblings and I did. Horrified at the images and death rate stats, I wasn’t sure what to do next. However, I won’t ever forget what my Dad said during our family meeting. He told us that this diagnosis “is not a disaster.” There are many other possibilities in life that could be categorized as a disaster: sudden deaths from heart attacks, car crashes, murder - to name a few very morose examples. He told us we need to focus on all of the positives: our strong family dynamic, his slower decline compared to other patients, our financial means to provide care and support - we have so many things to be grateful for.

I know this journey for my Dad and for my family will not be an easy one. What I do know is we are infinitely blessed with a solid family unit, personal relationships with God, financial stability, a strong community, and the most incredible support from friends. I’m fully aware that many patients struggling with the difficult symptoms of ALS do not all have the same support my Dad has. I can’t begin to imagine the frustration of living inside of a body that is failing. I think about people dealing with any illness often, and am reminded to not ever take my health for granted.

My Dad came up with the slogan “Always Love Strong” to demonstrate his outlook on life with ALS. It’s a good reminder to myself to stay positive when I start to feel sad or down. It helps to ease my anxieties, solidifying the idea that LOVE is the most important of the Fruits of the Spirit - that’s why it’s listed as the first in the Bible.

Love won’t heal disease. Love won’t stop bad things from happening.

However, Love will make the hard times easier because Love will wrap you in comfort when you need it. Love will give you the strength to take the next step forward. Love will provide hope in despair. Love will radiate through you to make the world a happier place. Always Love Strong is a reminder to love yourself and Love others as you go through life to help make it a little bit easier.

1 Corinthians 13:4-7 - Love is patient and kind; love does not envy or boast; it is not arrogant or rude. It does not insist on its own way; it is not irritable or resentful; it does not rejoice at wrongdoing, but rejoices with the truth. Love bears all things, believes all things, hopes all things, endures all things.

Thanks again for being here! - Caroline