Easter Sunday is extra special this year.
That’s because today - April 16, 2017 - is both Easter and International 4p-/Wolf-Hirschhorn Syndrome Awareness Day. (Wolf-Hirschhorn: Pronounced “wulf-HURSH-horn”)
Our family has been a part of the worldwide Wolf-Hirschhorn Syndrome (WHS) community for more than five years (Elsa was born December 2011), and I can’t recall these two dates ever coinciding until now.
So today, we celebrate TWICE.
Here are the gals on Easter morning at Grammy and Grampy's house. Chocolate is already out and all over Lola's face...
Elsa on the hunt - with crossed legs...
Since the moment I realized that these observances would fall on the same day, I’ve been searching for a thread that connects the two completely separate occasions:
Easter - The defining celebration of the Christian faith
Wolf-Hirschhorn Syndrome - A rare chromosome disorder affecting 1 in 50,000
There is only one link I can find, but it's the only link needed: The person of Jesus Christ.
How so?
Easter is the celebration of Jesus' life, death and resurrection - He who came to Earth to live a perfect life among us, dying on the cross to take on our sin. The gravity of this sacrifice is so awesome that it's hard for me to fully comprehend. But one thing that I can totally grasp is that our world is broken and in need of saving, and Jesus saves us.
Wolf-Hirschhorn Syndrome Awareness Day is a day devoted to spreading the word about the condition caused by a missing part (deletion) of the short arm of the 4th chromosome (4p-). The absence of this genetic material results in severe developmental delays and in some cases includes a variety of other birth defects. (For more, visit wolfhirschhorn.org.)
Brokenness. Missing links. Questions. Hardships.
Trials are a hallmark of our earthly existence. As a Christian, I know that this mortal life is fleeting. So I set my eyes on Jesus and look with hope to an eternity spent without separation from my Creator.
Some families I know are able to thank God for their child's Wolf-Hirschhorn Syndrome diagnosis. I hope that one day I am able to say this with honesty and conviction.
For now, I can wholeheartedly thank God for Elsa. She is most certainly a gift from above. And on this day, I also especially thank God for the WHS families who have come before us:
- Advocating for their child's needs
- Demanding equality and access
- Bravely undergoing unproven and ground-breaking procedures
- Allowing themselves to believe that their child could live beyond professed mortality rates
- Creating platforms like wolfhirschhorn.org, for sharing and celebrating the real WHS story
All of these amazing families: Rising up. Conquering fear. Celebrating every moment.
HAPPY EASTER to the WHS parents across the globe, who have blazed the path. And God bless every WHS child, for giving us Earthly examples of strength and love.
