As I began writing this blog, I found these questions swirling inside my head…
How do you write a blog about someone you love who has passed away? How do you sum up their life in a few relatable, compelling paragraphs, using words to describe feelings you can only hope will move the reader as much as the experience of knowing this person has moved you? How do you describe their smile, their energy, their love for their friends?
I guess what I am really asking is how can I help you, my dear reader, get to know my friend now that she is gone? How can I help you to see how, because of who she was, she became the inspiration of a dream? And by seeing that, can I help motivate you to support our work, the creation of this vision inspired by my friend?
The answer to all these questions is I really don’t know, but you’ve come this far, so I’m hoping you’ll stay with me.
There is a lot of work to do to make this vision, this inspiration, a reality, and the truth is we never really know how long we have here on this earth. That’s one of the most important lessons I learned, and I intend to leave a legacy right along with my friend Sara.
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It’s interesting how we describe people when we are telling a story. You might describe me as a middle-aged white woman, medium height, curvy build with red hair and blue eyes who works as a direct care provider in the special needs community. We often start with looks, then sometimes add in race, occupation and perhaps a personal attribute or two. In the world of special needs we also would add in a diagnosis or condition, “My friend with Cerebral Palsy, or TBI, or Down Syndrome.” I think we do this because it gives us a starting point to understand the person’s background, perspective and maybe even some of their abilities or disabilities. For that purpose I will tell you this about my friend Sara: she was a middle-aged, white woman, with blue eyes and brown hair and she had Down Syndrome.
But that is only the beginning and really tells you very little about who Sara was.
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The truth is I didn’t know Sara very well compared to the friends and family I was surrounded by at her memorial service. Her mother had asked me to speak about our experience together and I was feeling intimidated and nervous. I thought I was out of place and a little under qualified to honor her memory, but she held a space in my heart and I had a promise to keep.
You see, I am a mother. I know what it is to hear your baby's first breath, their first cry and to count each tiny finger and toe. I know what it is to hear that first word and see their first steps. We send them off to school, playdates and maybe even sports. We lovingly place Band-Aids on their scraped knees, and we kiss their owies. When they eventually grow up, we watch them as they fall down and get back up again, over and over, while they learn the complexities of living, loving and even loss. As parents there are many things we prepare for, hope for and fight for regarding our children. We even contemplate what we need to do to prepare them for our absence when we move on to the next journey in our existence. But one thing we rarely prepare for is losing them.
Sadly, this is a common reality for families who have loved ones with special needs. I didn’t see most of Sara’s firsts, or even her seconds, thirds or fourths. I didn’t know her when she was organized, responsible, serving, independent, playing and dating. I met her in the sunset of her life. I watched her take her last steps, eat her last meal, watch her last movie, give her last hug, wiggle her last wiggle, and smile her last smile.
The only first I witnessed was her first step toward heaven.
She trusted me with the season of her life that many of us go into unprepared for. She trusted me with her fear, her vulnerability, and all the unknowns at the end of her journey. That is why I made myself a promise as I watched her slowly slip away.
I promised myself I would support this amazing community and offer to walk with them through their sunsets. I didn’t know how sacred and important that part of our journey was until I walked through it with her and with those closest to her. As I looked around, seeing all the faces of everyone who loved Sara and had come to honor her, I felt a tug in my heart and tears streaming down my face. I may not have known Sara as well as they did, but I knew she would want me to speak. She had loved me and I had loved her, and I was on a mission. I slowly walked up to the front with my paper in hand and began to speak, honoring her in the only way I could.
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Sara was so many things; she was kind, thoughtful, funny, sassy and so very loving. She was born into a world that would consider her "disabled". But sometimes it's our differences that make us more able to do things that others are not able to do. Sometimes what are considered our “weaknesses” actually are our strengths. Sara was strong, independent, and able to light up a room with a little wiggle, and a boop on the nose. She was able to calm herself during a panic as soon as she heard someone else needed help. She was able to wave her arms in the air and have everyone in the room dancing and, according to her good friend Julie, she is even now able to color in heaven.
Sara taught me that sometimes pausing and being present is more important than checking off task boxes. She taught me that sometimes all it takes is a song or a hug to make someone's day brighter. The last time she said my name, “Hanna!” my heart was full because the importance of someone knowing you and loving you just as you are is the greatest gift of all. Sara gave me and so many others that gift.
Sara’s last weeks were very difficult. Sharing those vulnerable spaces with her taught me how to be truly present with someone; knowing that what you do cannot take the suffering away, but can offer comfort and safety in the midst of pain and fear. Sara taught me that it is the little things that matter. The little things that so often go unnoticed. And paradoxically, that the little things are really the big things.
Supporting Sara and her mother through her transition lit a fire in my heart that will continue to go on, at least as long as I'm alive and hopefully much, much longer.
But I am not the only one inspired by Sara. She lit that fire in my family and colleagues as well. In honor of Sara, we have begun the process of creating a nonprofit organization that will support the special needs community and their families during their end-of-life journeys. Through our experience with Sara and her family, we realized how important it is to create a sacred space that honors this part of our life’s journey, to facilitate opportunities for loved ones to say goodbye, and to respect and dignify the wishes of the individual passing. Healing Lights of Love is the vehicle we will use to deliver this sacred work.
This transition of life can feel insurmountable, to both the individual and their families. The mission of Healing Lights of Love is to support everyone involved through this journey and afterward, providing support and help up to the time of transition and beyond. We can help families decide how best to celebrate their loved one, through a Celebration of Life or other opportunity to honor their legacy. Every person touched by the passing of a loved one will process it in their own unique way. We will be here to honor that process of sadness, loss, comfort and joy, in the same loving and dignified manner in which we cared for their loved one.
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Sara is with me every day, in my heart, reminding me that there is a need for people to have a voice in their death; to feel respect, dignity and love. This is even more true in the special needs community where often voices are unheard or misunderstood. Help us be that voice. Support us as we support this amazing community of people with different abilities and their loved ones. Walk with us through all the sunrises and sunsets of life. I think of Sara now, holding my face and saying “You’re so sweet!” Let's together make all the paths of life sweet.
With love, Hanna
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