Perfect Love (Olive’s Song) & Trisomy Awareness Month
March is Trisomy Awareness Month. If you’ve never heard of Trisomy then now is the perfect chance for you to become acquainted with the term. Most people have 23 pairs of chromosomes, for a total of 46. Trisomy is a genetic disorder in which an individual has an extra chromosome (partial or whole). Trisomy 21 is the most well known, more commonly referred to as Down syndrome, but other Trisomy disorders include Trisomy 18 (Edwards syndrome), Trisomy 13 (Patau syndrome), Trisomy 9, Klinefelter Syndrome (XXY Trisomy) and Triple X Syndrome.
While all these are quite rare, my brother Geoff and his wife, Amelia, have had the unlikely experience of raising two children with Trisomy disorders; first with their daughter Penny, who was diagnosed with Trisomy 21 (Down syndrome), and again with their second daughter Olive, who was diagnosed with Trisomy 18 (Edwards syndrome). Both have a unique set of challenges, but Trisomy 18 has significantly more severe symptoms. In fact, less than 50% survive a live birth and approximately only 10% live to see their first birthday. These numbers were nothing short of staggering to my brother and his wife when bloodwork revealed markers at 12 weeks of pregnancy and they began their research into the diagnosis.
Not only do my brother and I share a strong family bond, but a deep friendship as well. Walking with him through this trial was heartbreaking because there is so little you can offer in the way of comfort in the face of such devastating news. My brother isn’t exactly known for complaining when things are difficult or even talking about his troubles, but he had moments where the prospect of the worst-case scenario was understandably overwhelming.
Yet because of their faith, he and his wife endured. Many people choose to terminate the pregnancy in such cases, but they chose to fight for the life of their child even if it meant only holding her in their arms for one day. It was their resolution to fight for their daughter that inspired me to write “Perfect Love (Olive’s Song).” I actually wrote the song before Olive was born, so the outcome was still unknown, but no matter what happened, I knew it wouldn’t change the heart of the message — for all the plans we make, for all the values we espouse, for all the faith we claim, what do we actually do when we’re faced with the biggest challenge of our lives? You can say you believe God is in control, but do your actions back up that belief?
At the end of the day, the doctors got it wrong…well, at least partially. Olive still had Trisomy 18, but she was 67% mosaic, which means it didn’t affect every cell. There were still many medical challenges to face, but she survived one day and then another and then another. Today is she 3-years-old and continues to defy the odds, by God’s grace. But the difficulties weren’t faced without support. Along with family, friends and church, Geoff and Amelia found a great deal of support through SOFT (trisomy.org), a “Support Organization for Trisomy 18, 13, and Related Disorders.” The invaluable resources they provide and connections they help establish for support have been beneficial to so many families faced with a similar diagnosis. In other words, they provide hope.
So in honor of my precious niece, Olive, I am celebrating Trisomy Awareness Month by giving 100% of the proceeds of the sales to my single, “Perfect Love (Olive’s Song)” to SOFT. It is also available on my new album, “Bewilder”, and for every digital purchase of the album in the month of March, I will donate $1 to SOFT. There is also an option to donate more if you wish, so please help support this wonderful organization as they continue to educate and help families fight for the life of their children!
Perfect Love (Olive’s Song)
Lyrics by Jakki Jelene
We all have plans of what the future will be
Though we may face things we never could foresee
And we’ve been told that God is in control
But is that enough when the rubber meets the road?
When you’re faced with a crisis
The doctor’s say something’s not right
And people all wonder how
You’re gonna deal with it now
And who’s to blame
Sometimes it’s hard to cut through all the noise
They mean no harm with all that it destroys
And all you thought once mattered doesn’t matter at all
It’s only love that keeps us standing tall
She is just a child, the world misunderstands
They say the word impossible, but it isn’t in their hands
Some would make other choices
Choices made out of fear
But perfect love casts it aside
And in that love we abide
Where there’s no shame
Once in a lifetime you get the chance
To prove what you’re worth through circumstance
And all that really matters still matters by and by
We’re all made whole in the arms of El Shaddai
She is just a child, the world misunderstands
They say the word impossible, but it isn’t in their hands
We all have plans of what the future will be
Though we may face things we never could foresee
And we’ve been told that God is in control
But is that enough when the rubber meets the road?
She is just a child, the world misunderstands
They say the word impossible, but it isn’t in their hands
And my heart breaks for those who’ll never know
His perfect love and how to let it grow
Well, now we know
We all have plans of what the future will be…
Check out this video to hear more of Olive’s story or follow her page on Facebook!
