31 for 21- Day 20: Faith and Down Syndrome

Today’s shared topic is Faith and Down Syndrome.  It’s a topic that really had me a little stumped at first.  I contemplated skipping it.  What do I really have to say about faith and Down syndrome?  Is there a connection between them for me?  In truth, the subject (at least the subject according to me) has been pinging periodically in my thoughts and I’ve been hoping to be able to develop my feelings on the subject.  So I’m attempting to take this opportunity to stretch myself a little and explore what this means to me.

At the time of Cora’s birth I honestly wasn’t very focused on my faith. Caught up in the long-anticipated arrival of a child into my life, I was pretty single-minded.  In my heart I knew Cora already, knew that she was meant to be with me, but she was still a mystery.  And I certainly didn’t have a clue what her arrival would come to mean to me.

Then, when she was born, the initial shock, pain and anguish was blinding.  For a short while at least.  Not to say that I haven’t struggled with her diagnosis or experienced pain since then.  I absolutely have.  But with our mad rush to the hospital with a blue baby, and the news of her serious heart defect, everything was suddenly so precious, so poignant and so seemingly precarious.  How could I be suddenly faced with the risk of losing this baby I had wanted for so long?   

And in all honesty, the reason I was able to accept her diagnosis early on was that I began very powerfully to feel that she was given to me for a reason, regardless of whether I understood that reason.  Perhaps that is a simple sentiment, clichéd, even, but for me it began to resonate powerfully.

In the midst of feeling slighted and punished and wailing “Why me?!” into the universe I came to some of my own answers.  I know that many parents of children with disabilities are irritated by society’s opinion that they must be special themselves.  Must be stronger than the next person.  Must be more humble and patient than the next person.  Because it really isn’t true.   We’re not heroes.  We really are no more special than anyone else.   

But I do believe that I am specially and uniquely suited to be Cora’s mother.  I believe that this was a position carefully chosen for me.  Chosen by God, of course.  Chosen by the soul of my daughter and chosen by my own soul.  And this knowledge was secure in my heart, even when I was grieving what I thought I had lost.  Quite simply, this is my faith.

The powerful love and acceptance and sense of community we’ve shared since Cora’s birth has also strengthened my faith.  I truly believe that the far reaching love, thoughts and prayers that were sent to us in her early hospital days and during her surgery are largely responsible for the wonderful outcomes.   Despite all my worries and fears, I will never forget the peace I felt when we finally handed Cora off for her heart surgery, the calm knowing that she was in perfect hands.  That moment was probably one of the closest I’ve come to my own perfect faith.

The fact that she has Down syndrome is not irrelevant.  Whether I am her mother because I am somehow stronger, more special or more equipped to be is not the question.  I am her mother because she was meant to be in my life, because she was meant to change my life and my perspective, my values and my sense of self.  She was meant to change my direction, give me focus and clarity.  And I have faith in that.