Monday, January 30, 2012

Mothering a Child With a Disability: The Secret Thoughts Part One

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.


Sarah said...

I read this this morning with my coffee and was thinking about it while Audrey was having Physical Therapy this morning. I watched so many mothers come in and out with their different situations with their children...some more difficult than others of course.
I think that hardest part of life is the unknowns...and I can only imagine the unknowns with a child who has special, life-long needs. I think you will know what the right answer is when that time comes. you are her voice of reason even though I know you desire to give her all the desires of her heart. I don't know how a mother helps her child make a decision like that of your situation...but, I know you will do what is best for everyone. I can only imagine the land of "what ifs" for you Krista. I love hearing your different concerns and makes you human!

Dawn said...

Thanks again for your transparency Krista. If and when...I think you will handle it with love and grace like you always do. And you will take one day at a time like you do now...Did you ever think, years ago, "How would I handle being the mom of a child with Down Syndrome?" Probably not...and yet look how good you are at it!

Kmarie said...

It's good to think about future responses and prepare for them, give thoughtful contemplation, prayerful pause...It's a beautiful endeavor you think on behalf of your child. And in whatever the future holds you will find the answers you have been preparing yourself for on this journey. Continue to grow in grace and empathy. You are doing great and those little ones will have both joy and pain But they will also have lots of love:)

motherofangels said...

I loved reading this! Even though Macy is still little, some of my first thoughts where... I hope she has the joy of a loving/intimate relationship (it's a huge part of life), I also wondered about her desires to have a child in the future. After all she will be an adult and she may want that. I hope I am brave enough to allow her to fulfill ALL her dreams! I hope I am not so scared that I stand in her way!!

Angie said...

Very thoughtful post, Krista. And very sweet photograph of Ella. Your thoughts and feelings are so real, I feel blessed in being able to read them. Thank you for sharing.


Jenny said...

To be honest when I was told Russell would not have children I cried and cried over it. It was one of the things that crushed my heart the most. Now...I wonder if he would want to adopt...Or maybe he will just want to be "cool Uncle Russell" and that would not be so bad either.
This post gave me lot's to think about. Thank you for including the links to those other stories.

Krista said...

Thank you so much everyone for your encouraging words. I know God will give me the grace for the time when I need it, and hopefully the wisdom.

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