I am the wife of a very talented musician who takes me around the world in pursuit of excellence. Mama to Jakob, Audrey and Ella, who just happens to have Down Syndrome.
And an aspiring disciple of Jesus, defender of the oppressed, writer, graphic designer and photographer.
I write and speak on navigating through the fog of life…you know, when things don’t go exactly as planned and am fuelled by a passion to amplify the voices of those on the margins…
oh, and coffee…lots of coffee.
Mothering a Child With a Disability: The Secret Thoughts Part One
January 30, 2012
Truth be told, most of the time, being Ella’s mommy is no different from being Jakob’s mommy. The day begins early, I make breakfast and lunches, then go about our daily activities until it’s time to make dinner and put them to bed.
But there are times, when lingering thoughts poke and prod and I find myself wondering if the future will be as normal as the present.
One thought that I often have is in regards to children. Like most mothers my heart is full as Ella plays affectionately with her dolls. I watch her as she kisses and rocks her baby, and I wonder if this nurturing instinct will go with her into adulthood. We all hope for love for our children. I know I do. I hope Ella finds someone who thinks she is amazing and can be a reflection of Christ’s love to her. And I hope she gets married but if she does, I wonder if her and her spouse will come to us one day and tell us that they, themselves want to have a baby.
What will I say assuming they tell me before it is too late? Will they want me to say anything? Will they tell me because they want to know what I think, or will they just tell me, to let me know…their minds are made up. Believe it or not, it’s not an easy “no.”
It’s not.
There are so many if’s, and’s and but’s before I ever have to face that moment but I still think about it. How will I be supportive? How will I give value to their desires while considering the reality of what life would be like for such a child?
When we lived in Calgary, we went swimming with a little girl whose grandmother faithfully cared for her. You see this little girl’s mother had Atypical Down Syndrome (where the third chromosome 21 is not separate but rather attached to one of two, as a result the characteristics typical of Down Syndrome may or may not be as severe or look the same as a person with Trisomy21).
This has come up on the radar twice since I began writing this post. The first story being of a couple in the UK. The mother, Tricia has not only a physical disability but a mental disability as well, caused by a car accident when she was just 13 years old. Recently, her and her spouse and part-time caregiver, Steven gave birth to their daughter, Elizabeth. It is a beautiful story of a dream come true and you can read about it here.
The other story is of Gabriela, who has Down Syndrome and her boyfriend Fabio, who is also mentally disabled. In 2008 they gave birth to their daughter Valentina, who was born perfectly health! After a long battle, they were finally able to obtain a birth certificate for their daughter. The grandmother was supportive of the couple and said that she would be taking care of the baby.
As I read their story wondered if I would consciously place myself in the grandmother’s shoes. While I know it is possible for women with Down Syndrome to have children, I also know that their child would, inevitably…(or so I thought), have Down Syndrome. Disability or not I do know that I would have to do the feedings, the diapers and the crying all over again…
But I also wonder if this might not be an amazing gift to give both parent and child: the gift of each other.
I am the wife of a very talented musician who takes me around the world in pursuit of excellence. Mama to Jakob, Audrey and Ella, who just happens to have Down Syndrome.
And an aspiring disciple of Jesus, defender of the oppressed, writer, graphic designer and photographer.
I write and speak on navigating through the fog of life…you know, when things don’t go exactly as planned and am fuelled by a passion to amplify the voices of those on the margins…
oh, and coffee…lots of coffee.
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