When our daughter Grace began exhibiting troubling signs of muscle weakness at age 14, symptoms that eventually led to a diagnosis of Lambert-Eaton myasthenic syndrome, our family quickly went into emergency mode.
Our days and nights were consumed with care for her changing needs, medical appointments, treatment plans, and medication. We were traveling hours to specialists and had many overnight stays, leaving the rest of the family back home.
This was necessary to get Grace the care she needed, but it caused a vacuum of care in our home that I normally would have filled. Our children definitely felt the void, especially our youngest daughter.
As a stay-at-home and home-schooling mom, my kids had been very used to me being around all the time. Suddenly, I was spending days away from home with Grace, while my youngest did her best to keep up with schoolwork and activities.
We knew our 12-year-old, Bethany Joy, was desperate to put into words her feelings and struggles. She was distraught watching her sister’s health deteriorate, but she also felt guilty for expecting more than we could give at that time. I believe she felt overlooked, forgotten, and taken for granted.
Of course, our youngest was never far from my mind, and I began to intentionally seek ways to connect with her.
The following parenting principles and tools helped our youngest feel heard, loved, invested in, and affirmed. Of course, this is not an all-inclusive list, but I would count some of these principles to be the best parenting advice I have ever received:
Set aside specific time
One of Bethany Joy’s love languages is quality time. I knew that in order to connect with her, I had to create an opportunity in which she would feel free to share her heart with me. We began to set aside Saturday mornings as time for just the two of us to get out and spend time together. Some days we just sit at an outdoor coffee shop or go for a walk on the beach, but she always has my undivided attention.
Listen without distraction
In this age of distraction, I think active listening is harder than any of us care to admit. This means putting down our phones, shutting off the television, and focusing all of our attention on our child. In order to ask poignant questions, we first need to listen to what they are saying.
Affirm admirable qualities
All of us want to hear affirming words about our talents, character, and strengths. Our children are smart, and they know when we are speaking the truth about their character.
I have one child who speaks up for those with no voice. I make a point to acknowledge and affirm that in his life.
I have another child who is a “noticer” of need. She sees when people are in need of help long before others do. I intentionally affirm this character trait as admirable.
My youngest is fiercely loyal and deeply committed to friendship. I speak good into her life by recognizing and speaking out loud her gifts and talents.
Intentionally speaking words of truth about who they are and the admirable traits they possess are powerful words in the lives of our children.
Don’t let go
When your children reach out for affection, don’t be the first one to let go. That may seem unnecessary if you have little children, because they always want cuddles and affection. But if you have teenagers like me, and a rare moment comes when your child would like a hug, don’t be the first to let go. Hug, and hug some more. You will be surprised at how long they hold on.
Let their interests be your interests
I will be the first to admit I don’t love video games, I don’t understand anime, and I’m not all that interested in young adult fiction. But my children are. So, I go out of my way to listen to their music, read the books they are reading, and attempt to comprehend manga, graphic design, and the latest teen fashions. I may not come to love these things as they do, but my efforts show that I love them.
Those of us parenting a child with a rare disease most likely have a bit more on our plate than others. That doesn’t mean we have to sacrifice our relationship with any of our children. With a little intentionality and effort, we can connect with each of our children in meaningful ways. Let’s strive to reach the hearts of our children despite our circumstances.
Note: Lambert-Eaton News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lambert-Eaton News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenia.
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