My Journey: with Down Syndrome

Oh, but my Karis! She is wicked smart and mischievous just like her peers. She pretends to cook me dinner or wants me to play princess with her, just like her sisters did.

by Melissa Bible

Sometimes you look back on your life and you see the path the Lord has taken you on and you think, what a gracious Father He was to me in preparing my path. But at the time, you know, you were not too happy with Him leading you through dark valleys or up to the cliff’s edge.

Back in 2010 I was pregnant with my 3rd daughter.  Having lost two babies to miscarriage right before her, we were pretty nervous until about the halfway point of the pregnancy. One sunny afternoon, not even knowing the test had been run, I got a phone call from my doctor.  “I need to tell you,” she said, “that your triple screen test came back with markers for Trisomy 21, better known as Down Syndrome.” What?

For you created my inmost being; you knit me together in my mother’s womb. – Psalm 139:13

Trisomy 21 is a condition where a third copy (the trisomy part) of the 21st chromosome is present in someone’s DNA. Some of the challenges associated with this syndrome are heart defects, intestinal defects, hypertonia and delayed or impaired cognitive ability, things that can sound pretty scary to new and old parents alike.

(The National Down Syndrome Society has a better explanation of Down Syndrome for those who are interested.)

Nothing is more agonizing to an expectant parent than being told something may be wrong with your baby and not knowing what that’s going to mean for them, or for you.  We spend the next month worrying, talking to a genetic counselor and doing ultrasound after ultrasound looking at every arch in her heart, every valve, every “marker” that can indicate Down Syndrome.  After extensive looking the doctors found… nothing. It was a false positive. We went on with life assuming all was well.

Then, one month before our daughter was to be born, my mother unexpectedly died. We were still in shock when our baby girl was born. We named her Seraya Jane, after my mom. She was beautiful and healthy and perfectly ordinary chromosomally. Down Syndrome was far from our thoughts.

I had lots of dreams about my mom in the first five months after her passing… one of the most vivid though, was of her holding a little baby with that tearful smile grandmas get when they first see their new little one.  She was just holding this baby and then nodded and handed it over to the Lord.  Such a strange dream, but somehow it felt comforting.  I think the Lord was once again preparing me.

Shortly after Seraya’s birth, I found out I was expecting baby number four!  We were not exactly ready at all for another baby to be coming along. But once the shock wore off, we were so happy. We didn’t know we were standing on the edge of a cliff of no return.

The day for her arrival finally arrived. She was here! Karis Mira Bible. (Karis, meaning grace and Mira, meaning peace.)  But the doctor didn’t show her to me right away like she had in the past. As the doctor congratulated me on my beautiful baby girl, she whisked her over to be looked at. They took a little bit in cleaning her up and looking her over before they handed her to me.  They placed her in my arms… and I knew. I asked my husband to take a photo right then and there.  I wanted to make sure to capture the moment just like the other three first moments with mom shot. I love that photo to this day.  Though no one had told me, I knew, and I was happy. I was going to take care of her. I remembered my dream and the peace that came with it.

Finally alone in our room with Sam and Karis, sadness hit me. There was something broken for my baby, and I couldn’t’ fix it. I was angry and kept thinking, “Really Lord, another major life change? Really!?!”  And “Mom would make all of this so much easier, did you have to deprive me of her-right when she would be most helpful?!” I thought I was in for a long lonely struggle.

Seeing my tears, the nursing staff was, I think, a bit worried about me. My doctor had a special needs child of her own and was so kind and encouraging about how Karis was beautiful and perfect and it was all going to be just fine.  A nurse from another section of the hospital came over and told me about her independent brother, who also happened to have Down Syndrome, and how as a sibling she was so proud of him, and that it was all going to be great.  And didn’t I know, but Karis was born on World Down Syndrome Day!  (March being the third month, represents the Trisomy, and 21st representing the effected chromosome).  Ahh… my double special girl. Just like someone had planned it.

Even through all the great support, it was overwhelming getting this diagnosis for my daughter.

Every single person on planet Earth is different. It’s no different with those who are diagnosed with Down Syndrome. But with that diagnosis suddenly you are being given lists of things that may be “different” and not in a good way. How well she would do in school was not defined; if she’d ever live an independent life was in question. She would look different. She would likely have speech challenges and cognitive delays.  Any of these challenges can arise for anyone, really but with a diagnosis there are differences that are just more expected. And we humans tend to focus on the differences.

What I worried about then is so different from the realities of my today.  Karis is now 4 years old.  Sure, her communication skills are about a year behind or so of her peers, and sure, she physically works harder to do some of the things her peers can and sure she doesn’t process instructions as quickly as her peers. Oh, but my Karis! She is wicked smart and mischievous just like her peers.  She pretends to cook me dinner or wants me to play princess with her, just like her sisters did.  And, just like her sisters, is addicted to hugs (and let me tell you, you’ve not been truly hugged until you’ve had one of Karis’ full on melt-into-you hugs)! They are truly the best.  She throws tantrums, she gets into trouble and makes huge messes in the typical ways kids her age do.  She asks for it to be her turn to pray at the dinner table.  She loves on her new baby brother and cuddles and “mothers” him.  She, in so many ways, is just a normal sunshiny kid.

Sometimes you stand on the edge of the cliff without knowing only to be shoved off and find yourself free falling.  Other times you stand on the edge of that cliff and choose to jump.  Either way, enjoying the ride is much about attitude and trust.  We can focus on the things in Karis’ life that make her “different” or we can choose to focus on who she is, and the Who guiding her paths. Who she is happens to be one great kid. Uniquely and wonderfully made. Her challenges? Well, the Lord knew those would be there too and He’s put people in our path to help us overcome so many of those. I trust that the Lord will be there for my daughter no matter the challenges she will face. They sure don’t seem as dramatic as they used to seem. I’m so glad He’s leading this journey, and not me! Sometimes the path looks a little sketchy, and you’d like to take the sunny path instead. But then, sometimes you’d miss out on the wonderfulness along the way.

(If you find yourself with a prenatal diagnosis of Down Syndrome, or a surprise blessing like ourselves, I encourage you to find a group of moms who’ve blazed the trails of this journey Down Syndrome will take you on. They will be full of amazing resources to get you through navigating medical, financial, social and emotional stuff you might face. And how bright your future is.)

Melissa Bible is a small town girl who led adventures as an athlete, missionary and world traveler. She met and married the love of her life while serving the Lord in Riga, Latvia. They returned to her native Oregon where she and her husband Sam are raising their five children. And yes, that really is their last name.

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