A Trip To Paris

A question that I get asked frequently is, “What is it like to find out that you will have a child with special needs?”  I recently wrote an article for our local MOPS newsletter that I am going to post today (slightly edited) in answer to that question:

“Today is a day that will forever live in my memory. Today we found out that our sweet little Rachel will be born with Trisomy 21, or Down Syndrome.  I don’t quite know what I feel right now…grief, loss, confusion, pain….and at the same time wonder, excitement, anticipation.  It breaks my heart that she may not be what the rest of the world thinks she should be, but I pray that I will always see her as exactly what God has created her to be--perfect.  The journey ahead scares me and I feel unworthy of this calling—God please stay by my side.”

 – Status update from Terri’s myspace.com account on November 9, 2007

It was a crisp Monday in Reno, Nevada when I awoke to the gentle tumbling of the little girl in my womb.  At 24 weeks of pregnancy she and I were just getting to know each other and I enjoyed these special moments that were made for just me and my princess.  As I lay there in bed, smiling as she wiggled to get comfortable, I once again lost myself in daydreams of who this little girl would be.  Would she grow up to be a doctor or renowned singer?  Would she be a cheerleader in high school, or maybe president of the honor society?  I thought of how special it would be to help her put on a sparkling veil on her wedding day and to hold her hand as she brought her own first child into the world.  I loved those daydreams, and that morning I stayed in bed just a few extra minutes basking in the joy of each whimsical thought.

For reasons that at the time seemed out of the blue (though I would soon know came directly from God), I just didn’t feel like going to work that day.  I couldn’t put my finger on why, but I just did not want to go.  After grappling with how I was feeling, I finally made the decision to call in “sick”—yes, I decided to play hooky.  After lining up a sub and sending in lesson plans, I embarked on what I anticipated being a fun, spontaneous day off.  I finished my coffee, tidied up a little, then retreated to what would soon be the nursery to finish a painting I had started.  As I painted I remembered that some day this week we would be getting a phone call from the perinatalogist’s office letting us know the outcome of the amniocentesis that we’d had done the previous week.  Something about an elevated risk for Down Syndrome had popped up on a regulatory screening and after talking about it we had decided that we’d like to have the amnio done just so that we could spend the rest of the pregnancy with peace of mind knowing that our little one was just fine.  During the amnio the perinatalogist kept commenting on how our little one did not show any of the typical Down’s characteristics and she was pretty positive that the test would turn out negative.  As I brushed pink paint across the canvas I remembered her words, “When you get the call, if it’s one of my office assistants you know the results are negative.  However, if the test is positive I’ll call you myself.” I laughed and said, “Well, I guess I won’t be hearing from you again, huh?!”

When the phone rang at 10:15 am on Monday, November 9, 2007 I didn’t think anything of it.  I said hello, and then heard the one voice that I never in a million years expected to hear on the other end of that phone, “Hi Terri, this is Dr. Cantrell, your perinatalogist, calling with the results of your amniocentesis.” I was silent. Mouth dry, hands numb, stomach lurching, head dizzy; finally after what felt like 5 minutes of silence I said incredulously, “Oh…it’s you.”  Knowing that this moment had caused my world to stop turning the doctor kept it brief, “Yes.  It’s me.  She has Down Syndrome.”  And that’s all I remember of the conversation.  I assume I said goodbye at some point because the next thing I knew I was slumped on the floor, clutching a silent phone, shaking uncontrollably and reminding myself to breathe.

The minutes, hours and days following this news were filled with every single human emotion found on the spectrum of possibility.  Some moments were dark, angry and bitter when I wailed and shook my fist at God for stealing from me all my precious daydreams and hopes for this little girl.  Some moments were awesome as we researched the syndrome and learned the potential that many with Down Syndrome have, and I once again began to cultivate new and different daydreams for the sweet little girl inside me.  But the most poignant moments were those quiet times when God spoke to my heart, assuring me that I had been chosen for a special purpose—for a special child—because He had created me for such a time as this. 

Our journey with having a special needs child has been beautiful.  We are very blessed to have a healthy, happy, bright and beautiful 4-year-old with blonde hair, almond shaped eyes and a personality that doesn’t quit.  There have been, and will continue to be, some very difficult times when the reality of having a child who is developmentally delayed is too much for my heart to handle.  I have faced moments that feel very much like getting that phone call from Dr. Cantrell when I see other kids Rachel’s age doing things that Rachel can’t do…but they pale so tremendously in comparison to the rest of the very normal moments of motherhood!  Rachel may have an extra chromosome, but that is one itty-bitty piece of who she is.  When I see my child, I do not see “girl with Down Syndrome”.  I see a girl who loves books more than toys, can’t get enough of Caillou, is more compassionate that anyone else I know and has the best giggle ever heard.  She has tantrums, she needs boo-boos kissed, she celebrates when she goes potty in the toilet.  She is just Rachel, and she is a blessing that I cannot imagine being without.

Now that you’re thinking that the titles [in this newsletter] got mixed up, let me circle back to “A Trip to Paris”.  Did you know that in the United States an average of 80% of women who learn that their unborn child has Down Syndrome abort their pregnancy?  Many reports show staggeringly higher statistics, the highest being a mind boggling 92%.  I say this with zero judgment of these women…what I feel for these mothers is compassion and sadness because they don’t know what joy and beauty they are giving up.  Choosing to let go of a child due to a diagnosis like this is like choosing to not visit Paris because it looks like a long climb to the top of the Eiffel Tower.  Sure, it probably is a long climb, but it's only ONE Paris attraction, and the experience and beauty at the top is worth the climb!  Why give up the whole trip because of one thing that you think might be too hard?  If I could make one lasting impact on the world during my life it would be to help women who find themselves on the other end of a difficult phone call, slumped to the ground and reminding themselves to breathe; help them cope, help them keep daydreaming.  Whether you're dealing with the news of Down Syndrome, Autism, learning disabilities, cancer or something else--this is no surprise to our great God.  My hope is to share the message that you are a special mother, to a special child and were created for such a time as this.