Since beginning the 21 Weeks photography project with Melanie and Ella in January, our world has changed. We are physically distancing to stay safe. Many people have lost their jobs or have transitioned to working from home. Kids are also at home, ALL THE TIME, with school staff working to support them through online teaching and resources. Medical appointments and procedures have been cancelled. Therapy sessions and assessments look much different. Families with special needs have lost the respite times they depended on.
We are all facing challenges.
We are all adapting.
We all have good days and not so good days.
We are all trying to make the best of it.
The 21 Weeks project has changed as well. This is how I originally described the project…
“My 21 Weeks project focuses on Melanie’s caregiver role, as well as the relationship between Melanie and Ella. My hope is that this project will highlight the strength, resilience and hope that is necessary when advocating for your child in the medical and education systems.
This project is still telling the story of one family’s life with Rett Syndrome.”
The 21 Weeks project is still telling the story of Melanie and Ella’s relationship. It is still highlighting strength, resilience and hope. It just can’t take place in their home, at school or during medical and therapy appointments. This project is now focusing more on the connections within a family and within a community during times of physical distancing.
This new story began with the Birch family taking part in the Front Steps Project. During the early stages of social distancing this is how Melanie described their new normal, “Covid-19 has me worried about the future and our ability to access the resources my medical child needs; therapists, aides, pediatricians, cardiologists… Within days our team and structure fell apart. It has been hard on all of us. I felt off kilter, like I did during Ella’s regression phase. [Ella has Rett Syndrome.]”
But Melanie is an optimist and she is always in search of the positive side of the story. She went on to say, “We are adapting. We are getting some structures back. My children are so RESILIENT during these uncertain times. And so, we will play in the sun. We will laugh. We will welcome Dad home from work with hugs and be happy he’s got a job. Ella will chase after her brother and life will feel normal. I will feel happy that we are alive and healthy and in a safe and loving home. We will choose JOY when times are tough, but acknowledge our sadness too.”
Melanie and I decided the story could continue to evolve. This is our reality right now. So we planned another time to photograph Melanie and her family…together…outside…from a safe distance. Whereas before much of this project was about Melanie and Ella and what it looks like to be a caregiver to a child with a rare disease. The project has evolved to include more of their family and tell the story, at least the outdoor part, of life during a pandemic.
We are all feeling the effects of spending every waking hour together. Personally, if I had to choose a word to describe my life right now, it would have to be patience. Patience with myself, my partner, and most certainly my kids! Every day and every activity presents a new opportunity for me to practice patience!
Each of us is managing emotions of grief and trying to re-connect with joy and gratitude. Covid-19 quarantine also engulfed Ella’s 6th birthday. This could have sidelined Melanie, but instead she chose to see the positive and appreciate the efforts of friends and family. Here’s what Melanie wrote on instagram (@rockymtn_rettmama) about how special and important Ella’s birthday became.
“A community offering their love, support and energy during what could have been a hard day totally turned Ella’s 6th birthday into an incredible party bonanza! My sister organized a PARADE (social distancing required) to go by our house with tons of friends. Check out the balloons, decorated cars, banners, noise makers and more! Cards and gifts were delivered. “Happy Birthday” was sung. If I’m ever feeling down I will think of this moment of lift, joy and togetherness. It was also a testament to the happiness we feel when doing good things for others, everyone else loved it and felt happy too. Our spirits were lifted. The feeling of HOPE and happiness was electric. Ella was in shock, then loved it. We were so fortunate that my friend and #21weeks project photographer @kristy.wolfe took photos. These will be treasured always! Is anyone you know celebrating a birthday soon? Plan a drive by parade for them if you can! Thanks all for making our day / week / month! (Note: we live in a condo so it worked to keep distance and not block cars. And Kristy was far away the whole time.)”
This birthday parade was amazing! It brightened everyone’s day. For families, participating it was something to look forward to, something out of the ordinary. For Melanie and Ella, it was a reminder of just how much their people love them.
The 21 Weeks photography project still tells the beautiful story of one resilient family.
And I am so glad I know them.