“I have no cute acronym to describe me. Six years ago, I was a divorced female with no kids (DFNK) and now I am a committed (meaning not married but in a committed relationship) female with 3 adult ‘bonus’ kids – twin 25-year-old young women, and an almost 21-year-old young man (Eric) with profound disabilities.
Eric was born with Williams Syndrome and is also autistic. He has severe developmental delays as well as complex medical issues that include a congenital heart defect and chronic kidney disease. What would the acronym be for me at this stage of my life – CF3BK? There really is none that would make sense to anyone but me.
I choose to call the kids my step-kids because that it’s easier for people to understand and it best describes our closeness. Together, along with my partner Jerry, we are a family.
When I met Jerry a little over six years ago, I was actively in the adoption process. I had passed a home study by an adoption agency and was working with various networks to adopt a child. I had always felt called to adopt even before I struggled to have my own child during my marriage. This wish has always been in my heart, to both save a life and to have a family. So, when I found myself divorced and single at 40 I didn’t want to wait any longer!
At 42, as an adoption match fell apart, I met Jerry. We fell in love. A short while later, I met his beautiful twin daughters, Kaitlyn and Chelsea, who were 19 at the time, and we also fell in love. Jerry moved in (with his two cats), and the twins moved in for a while, too. Eventually, I met Eric who lived with his mom a few hours away and he stole the rest of my heart.
A few years ago, Eric abruptly came to live with us when his mom passed away unexpectedly. Up until that time, I had very little experience with special needs. I had no idea what to do or how to do it, but I knew with absolute certainty I was ready.
It’s hard to describe how I knew. It came from a deep place in my bones, call it intuition, gut instinct. It was one of those rare times my heart and head were in complete synch. I recall taking my mom and dad for coffee, and telling them Eric was coming and I was ‘all in’. They responded by saying, ‘Then so are we.’
With tremendous help from Eric’s sisters, Kaitlyn and Chelsea, my life with Jerry changed overnight. We went from being a carefree couple that traveled often to full-time caregivers of a medically complex child that required tube feeds and diaper changes. I won’t pretend it was easy. It wasn’t. The family dynamics shifted dramatically. The kids were in a great deal of pain mourning their mom. Eric was so full of anxiety that he would bite his lips until they bled. He was grossly underweight, and though he could walk, he would fatigue quickly. The twins struggled with their grief. We had been once incredibly close, but suddenly we had distance between us. We struggled with control, trust, grief, communication, disconnection. It felt like a bomb had gone off in our family and blew us up.
During all of this turmoil, Eric truly was the glue that kept us together, as well as my faith that I was where I was supposed to be. One particularly emotional night, I was struggling. We had had some sort of family drama. Jerry and I were not in synch and I was feeling really disconnected and alone. My head was swirling with negative thoughts and my heart was feeling fear, confusion, and doubt…even despair. I went into Eric’s room and pulled out a book I liked to read to him called ‘You’re Here for a Reason’ by Nancy Tillman. All of a sudden, as I was reading, I felt the most incredible sense of peace. I felt as though God was speaking directly to me as I read these words:
‘You’re here for a reason, It’s totally true, You’re part of a world that is counting on you. Life works together, the good and the bad, the silly and awful, the happy and sad…to paint a big picture we can’t always see…a picture that needs you, most definitely. Remember the next time a day goes all wrong, to somebody else, you will be always be strong.’
As I read, I got choked up and started to cry tears of relief. Eric looked up at me and smiled, and he touched my face as if he knew I needed to be enveloped in love in that moment. I felt the strength come back into my body, along with the certainty I was right where I was supposed to be. I had always read it to Eric to tell him HE was here for a reason. This time, I heard the message for myself loud and clear. I still cry when I read this book. I reach for it every time I struggle, and every time I feel a renewed sense of hope.
Today, Eric is strong! He just graduated high school from an amazing nonprofit, Pattison’s Academy, where he has learned to communicate with us using a speech device. Earlier this year, he had a breakthrough and used his device (unprompted) to tell Jerry and me he felt happy, and he loved us.
He is too old for me to adopt with Jerry but I recently became his official legal ‘Co-Guardian’. Eric remains medically complex, this will always remain true. His health is a major part of his journey. He has chronic kidney disease and he was just placed on the kidney transplant list as we now begin our search for a donor. Our family is still our family, and Eric still keeps us focused on what matters.
With all of this, I do not want people to pity me or Eric. Pity minimizes Eric and his capabilities and it angers me. Pity implies he is ‘less than’ and is not constructive. I don’t want people to put me on a pedestal either. While I am a huge fan of Wonder Woman and enjoy the comparisons, I am not her. I am not a savior, a saint, or an angel, or any other beautiful compliment people bestow on me. I am human with plenty of flaws, fears, and doubts. I DO appreciate the sentiments but when people elevate me it takes the focus off Eric and others like him. We ALL need to be Wonder Women, heroes, guardian angels, and saviors to people like Eric.
Eric has opened my heart in ways I never knew possible. He is the reason I am strong. He inspires me to love deeply, to channel my faith, and to have the fierce determination to live my values. I am not a hero. I am merely giving Eric what he and others like him deserve. He has opened my eyes as well as my heart.
I share our story with the world because I want others to be inspired like I have been. I hear, ‘I don’t know how you do it’ all the time. Frankly, that is just not very helpful. To me, that statement implies, ‘Thank goodness you are doing something so I don’t have to.’ Instead of saying something like that, do something to help a disabled person.
Here are some ways to get started:
When you see a disabled child, say hello! Keep it simple and say, ‘My name is ____. What is yours?’ Also introduce your child even if he or she is shy or scared.
Teach your children to be empathetic to differences, and to be kind to other children who are different.
If you see a disabled person struggling to get in out of a door, hold it open for them. I am always incredibly grateful when people do this for us without my having to ask.
Donate to non-profit organizations like Pattison’s Academy that provide programs for profoundly disabled children. I think Eric can change the world because he most definitely has changed mine. It has become my life’s purpose to help make that change happen. As Mahatma Ghandi inspired us, ‘Be the change you wish to see in the world.’
What change do you want to be?”
This story was submitted to Love What Matters by Laurie Sessa of Mount Pleasant, SC. You can follow Eric’s journey on Instagram and on their blog. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.
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