Isolation, Lockdown and Social Distancing have become buzz words we will forever associate with this time of COVID-19. While you don’t have to go far to hear stories that make us fearful – you can also find stories of hope, kindness and connecting – like never before. In today’s blog, we thought it would be nice to share our stories – not as the Board of Directors of Hope for HH, but as seasoned caregivers, mothers, and women trying to do the best we can to find peace and comfort in trying times. We all are doing our best to adapt and change our routines, as well as stay strong and find some new sense of balance. We hope that by sharing our stories, we can encourage others and show that we are all in this together.
Lockdown in my household has been a real mix of embracing simple pleasures while adapting to new technologies. As a ‘key worker’ in the justice system I have absorbed the emergency Coronavirus Act 2020 and implemented new hard and software to enable urgent hearings to take place remotely and lawfully from an empty courtroom. At the same time, the halt on jury trials due to the strict social distancing measures has given me a lot more time at home with my three children aged 18, 16 and 6 – a true blessing.
The upturn in the weather here in the UK, combined with the impact of social distancing measures, have made the children very happy to join me on long daily walks with our beloved dog Rafa. The simple pleasures of gardening, baking, playing games and exercising together have taken centre stage – picnics and barbeques in the back garden have created a holiday feel and mitigated some of the anxieties and frustrations. Of course, bickering is pretty much non-stop and non-negotiable – it turns out that patience is not a virtue I possess in abundance – so WhatsApping, FaceBooking and phoning friends have helped me maintain my equilibrium. We have agreed no television until 6pm; then each evening we take turns to choose the film we will watch together “at the cinema”. My neighbours on both sides fall into the vulnerable category, but have nonetheless left Easter eggs for the children on my doorstep. Conversations (with drinks and snacks) across the garden fence have meant that we have communicated more in the last three weeks than in the last three months. Tonight we are meeting in the garden for al fresco fizz before attending the Duomo di Milano for Andrea Bocelli’s live Music for Hope concert – because even in the worst of times it seems that Hope is what unites us, steadies us and uplifts us.
Self-isolating with my husband and our three small kiddos (ages 7, 6, and 3) comes with both challenges and blessings. Moving from a professional office role to a stay at home mother role has been a bit of a culture shock. So much noise and tears! And the dishes…did we really use this many before!? But there has also been more joy, more snuggles and more play time so I try to stay focused on the positives of this crazy experience. One thing that has been immensely helpful for me has been my prayer time.
Dedicated time that I try to tune out the chaos around me to study His Word and really hand over all of my fears and struggles to Him. Pre-pandemic, I would meet bi-weekly with an amazing group of women for bible study and socializing. It was my “mom’s night out”. Now, as we are all required to stay at home we have started meeting more regularly through a video chat program. This has really kept me accountable for my daily study time and has helped me keep things in perspective. We share together, cry together, pray together and laugh a lot together. My faith and my friends have been keeping the foundation firm beneath my feet even when I feel unsteady. (A little chocolate behind a locked bathroom door helps too!)
Our family homeschools but lockdown means no more science co-op, physical education class at the park or writing co-op. No play dates, no group dog training classes or church. Even though we miss all our out of home activities we have had more time for school, crafts, cooking and playing games. My favorite activity (my husband calls it my therapy session) is time in the garden. I listen to music and get dirt under my fingernails.
This is my time away from the stress of life. A moment to regroup, gain strength for the next steps and find peace. It does not matter if the next steps are dinner plans or chores or the next big treatment plan for my HH warrior. I will miss the simplicity of the day.
Our stay at home order went into effect on March 25 the day before my birthday. We had made reservations at my favorite restaurant and we were looking forward to celebrating with friends and family, but as I have learned over the years not everything goes as planned. These unexpected ups and downs in life provide us an opportunity to put into practice patience, resilience, reflection, and opportunity.
At the beginning of 2020, I had made a promise to myself to not only invest time in my physical health but also focus on my emotional well-being. I have always done a fairly decent job on my physical health, but have to admit I have tended to ignore the other aspects of my overall health. One component of my 2020 plans for improved emotional health was to start journaling, specifically gratitude journaling. As we’ve been self-isolating for the past several weeks, I have truly been thankful for this new habit I’ve been growing. I try to find time several mornings a week, before the chaos of the day starts, where I can cuddle up on the couch with my old cocker spaniel, Chloe, at my feet, drinking my coffee and reflecting on the blessings that this time together is providing our family.
For us, living in Arizona has maybe made being quarantined a bit less painful than it is for much of the country. Our weather is ideal and our pool is an option for the brave…a little too cold for me though. Thank goodness hiking is still allowed in this time of social distancing. For me, the struggle is more mental – with the information overload. There is so much unknown, and the data changes almost faster than we can process it. Fortunately, I have been able to do a daily workout in the local park with my son, husband and one other family. We socially distance, and let the dogs run around. This daily connection and mutual support lifts my spirit and reminds me of who and what is truly important in my life. I am learning that being “busy” doesn’t have to be a way of life. Journaling, reading and meditation help to quiet the chatter in my mind – and the funny dog videos I watch on YouTube have my family wondering if I have completely lost it! I will continue to make life adjustments, focus on my renewed appreciation for life’s simple pleasures, and be thankful for the many blessings that abound for my family.
As you can see, each of us is finding ways to stay connected with loved ones that we worry about but can no longer just drop in on…apparently, Zoom has become more than just a sound a car makes!
However, as caregivers and individuals with complex medical conditions, our lives were already stressed to the max. The worries of staying healthy and keeping our families healthy can be overwhelming. We hope by sharing some of our concerns and activities we do to help relieve our stress, we have inspired you to find something that makes you feel a bit calmer. Sometimes it is much easier said than done.
If you are struggling with overwhelming feelings or just need someone to talk to – please reach out to someone you trust that can listen. Call, Facetime, Zoom or meet up with a friend and social distance. If you need to reach out – we are including some resources to help see you through until life returns to a new “normal”.
Our hearts go out to our HH community. Stay strong, know that this will eventually pass, and we will all get to a new normal. Until then, break out the puzzles, bake cookies, dance like no one is watching, and hug your loved ones. Life is precious and we are resilient.
Sending our love,
Emma, Kimberly, Kathy, Erica, and Lisa
Hope for HH Board of Directors
Hypothalamic Hamartoma Survivors Facebook Group – To connect with other HH adults and caregivers