Words of Encouragement: Emma & Her King
Emma & Her King
A few weeks ago, I decided to take my five-year-old daughter to our local middle school’s performance of Beauty and the Beast. She was so excited to dress up like Belle, and after posing for some pictures, she ran off to show her dad her costume, saying, “I have to go show my king.”
The beauty and innocence of this moment brought tears to my eyes. Knowing all that we have struggled through as an FTD family, raising our young daughter while attempting to manage this terrible disease, I am moved by the unconditional love that she shares with her dad, despite the impact of behavioral variant FTD.
For nearly eight years now, I have watched my husband exhibit increasing symptoms and concerning changes in his cognition, speech and language, movement, personality, and behavior. It has been devastating to watch him battle these changes, while also suffering physical pain and debilitation. I have spent a lot of time educating myself about FTD and learning from medical providers, researchers, and other caregivers through online support groups, videos, webinars, podcasts, and articles. One of the most important lessons I’ve learned, through an episode of the Remember Me Podcast, is: once you meet one person with FTD, you’ve met one person with FTD.
The longer my family journeys with this disease, the more I’ve come to recognize that everyone’s FTD experience is unique, and that managing the diagnosis must be based on each family’s specific circumstances and needs. FTD will present us with both good days and bad. It’s important to acknowledge and celebrate the moments marked by smiles, laughter, jokes, and happiness, and hold onto them when we are faced with the inevitable fear, stress, anxiety, and sadness that FTD also brings.
The best advice I can give, based on our family’s FTD experience, is to focus on living one day at a time, and on the hardest days, to take it one moment at a time. There is no doubt that it is especially challenging to navigate this disease with a young child. But, I am grateful that the slower progression of my 39-year-old husband’s bvFTD has given our family more time together to create memories that we will hold onto forever – memories of family walks around the neighborhood, lunches shared at our favorite restaurant, and slurping down snow cones together at the farmers’ market. At home, I cherish watching my husband and daughter build Lego sets, have dance parties, and invent silly songs and stories together.
While our days are often unpredictable, we always end them together, cuddled up on the couch with our dog. For all of us, this has become our favorite time of the day, and it is a memory I hope my young daughter will carry with her always. Each day, we lose a little bit more to this disease. Although it will one day take my husband from us, it cannot steal the precious memories we’re making together. And in my daughter’s heart, she will always be her daddy’s princess, and he will always remain her king.
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