I began The Love Dare journey for my daughter who has Down Syndrome. It’s something I know I needed to start, and also something I really didn’t want to do. So I asked for prayer to help me out in this vulnerable area of my life. I spoke with all the sassy sarcasm I could muster in effort to hide my discomfort. Therefore my friend responded with, “Girl, you better check your attitude!” While that stung to hear, I understand it’s true. Probably. Maybe.
The thing is…. being a parent to a child with Down syndrome is really hard.
My oldest daughter, Ciena, is 18 years old and has Down Syndrome. I met her when she was 8 and became her parent after her 9th birthday. My journey as Ciena’s step-parent is full of DRAMA! So if I’m being honest with you, there are more downs than ups in our roller coaster of a relationship.
Nothing about being Ciena’s mom has been easy.
For instance, she is bi-racial and I had almost zero understanding of what that that meant for her culturally. She also has this disability called Down syndrome which means my friends refer to her as “the happy one,” while I go home to deal with bathroom issues, eating issues and behavioral issues.
Ciena’s doctor diagnosed her with PICA; I have caught her eating everything from book binding, to chapstick, crayons, bacon grease, vitamins, as well as edible food from the kitchen. She grew up and discovered how to sneak food and hide it in her room. While sometimes this was done in broad daylight, most of the sneaking came in the night. The result: An annoying doorbell that goes off loud and proud every time someone enters the upstairs hallways or goes down the stairs.
However, the only mother Ciena knows is me.
That said, I believed the best step-mom a girl could ask for would be Yours Truly. I knew it would be a challenge, particularly with the Down syndrome, and I was ready to overcome every obstacle. My idealistic ideas were quickly thwarted as I had yet to learn how to handle my own emotions, let alone what she was going through.
Building a relationship with Ciena never did get easy. My temper would start to get the better of me and I didn’t like that version of myself. I struggled to the point where I told Mr. Sexy he probably shouldn’t marry me. Twice. Both times he laughed and kissed me. It’s still a struggle today. Over the years I learned a lot about what true love is and what it means.
Love is a choice you make every day.
I remember sitting in church and realizing that if I said, “I love you,” and performed loving actions, the feelings would follow. What a simple idea! In theory, though. Actually putting those “simple” ideas into play is a whole other story. One I have yet to complete.
Ciena is now technically an adult with Down syndrome and her behaviors have only grown with her. By this I mean the struggles are the same – if not more so. Naturally as your child progresses through life, so do your exceptions of them. Unfortunately this is unrealistic for Ciena. The hopes Mr. Sexy and I have of her living on her own are now a faded story we used to tell ourselves. I began to wonder if I was truly the root of the problem.
Perhaps if I learned to love Ciena, Down syndrome and all, our lives could be better.
So, out of desperation, I added The Love Dare for Parents to our Amazon cart. My hope was to utilize the game plan provided and see what, if anything, changed. The book arrived about a week later. I’m going to be honest… I groaned a little on the inside. This. Is. Not. Easy. As I began the journey, I did a thing I very rarely do.
I removed pressures of expectation.
In other words, I gave myself the OKAY to take an entire week to accomplish one dare. For one thing, I planned to use the concepts on each of my four children. And then I also understood that presenting these gifts to Ciena would be difficult for me. I had no intention of doing this halfway and I wanted to allow myself to be realistic.
I don’t believe I am alone in the struggles of step-parenting or Down syndrome.
And so I invite you to join me as I share what The Love Dare does for me and for our family. I will be blogging often about what the dare was and what our reactions were to it. This book isn’t just for relationships with your kids, either. This concept was born for marriages on the brink of ending. As a recipient of the gifts of The Love Dare from Mr. Sexy, I can say it’s a powerful tool for any relationship you want to improve.
Let’s stay connected!
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