I had never heard of Trisomy 18, nor had anyone else in my family or circle of friends, and while I was somewhat familiar with Down Syndrome, Edwards Syndrome was certainly not on my radar. (Nor, I might add, was having another baby.) On this day, I was likely homeschooling 7 of my kids while chasing baby Rhema around the house, trying to keep her out of mischief.
March 18, 2017.
Verity Irene was a tiny little mite who had been home from the hospital less than 24 hours after spending her first 17 days of life in the NICU. She had an NG tube she managed to dislodge a few hours after this photo, resulting in a frantic trip to the ER that night. Good grief. We hadn't even made it a whole day and already there was chaos! How in the world were we going to manage caring for this fragile, precious little girl AND keep up with our 8 other kids?!
March 18, 2018.
Verity Irene passed a huge milestone: she turned ONE YEAR OLD! Statistics had told us only 5-10% of Trisomy 18 children reached their first birthday. I'm thinking those are old statistics...but regardless, who cares?! Does this look like the face of a girl who gives a flying fart what statistics say?!
March 18, 2019.
Verity has now passed her 2nd birthday. She's no longer a tiny, fragile little baby, though she is small for her age. She is developing at her own pace, and we cheer at her every accomplishment. The world might not award much significance to her achievements--or even to her very life--but we know without a doubt that she is a gift from God. She enriches our lives and brings us joy in a way only she can.
March 18, 2020.
Verity Irene, like ALL of our Trisomy friends, is clearly a Trisomy RULE BREAKER!! At 3 years old, she has blessed our family and a growing circle of friends just by being who she is, the unique person God created her to be.
It is a strange time we live in to be sure. As I type this post, Trisomy Awareness Month has been overshadowed by COVID-19. I am not fearful, per se, of the virus invading our home, although I acknowledge it could definitely happen. I choose not to live in fear, but we are definitely taking precautions. Of course, some of those are not of our own design, as schools have shut down, my oldest daughter's university campus is closed for the year, churches have switched to livestreaming, appointments are pushed farther down the calendar, and so on.
But here's the thing on my mind during today, my fourth Trisomy 18 Awareness Day: IF my child gets sick (whether due to COVID-19 or another illness), and IF we need to get her into the hospital...WHAT IF the hospitals are overrun? What if by the time we get triaged, there aren't enough beds or equipment for what my special girl needs?
And even if it isn't Verity, WHAT IF this happens to our little Trisomy warrior and princess friends??
WHAT IF doctors find themselves having to choose WHO gets life-supporting equipment, time, effort, and resources?
What will happen to those society has already labeled "incompatible with life?"
THIS is why I think Trisomy Awareness Month is important to talk about, even though our newsfeed is already saturated with articles about the virus, the economics, the responses, and whether what we're doing is enough or is overkill.
Wait. "Even though??" No, ESPECIALLY since we are in the middle of a pandemic! This is ESPECIALLY why I think bringing awareness to some of our most vulnerable citizens is important.
And so here I am, standing in my little corner, washing my hands and keeping my family at home, shouting from my computer.
Please...please. Please think of people like my precious Verity, like her friends, and like their grandparents or others who are especially vulnerable. Please don't scoff at recommendations or skip out on washing your hands.
Let's get through this together, OK?
Amen.
ReplyDeleteHello sisterBeverly. I am a Pastor from Mumbai, India. I am glad to stop by your profile on the blogger and the blog post. I am also blessed and feel privileged and hououred to get connected with you as well as know you and about your love for the Lord and passion to raise an army of God in His likeness. I am truly blessed to get connected with your family.With nine kids it is not easy to raise them in the likeness of Jesus but that shows your loving care for each child and specially a kid with down syndrome. Praying for you for your big investment in the lives of your kids. I am reminded of John and Charles Wasley's mother who had almost equal number of kids or couple more then your numbers. I am curious to see how a mother of such a large numbers of kids manages to do evey thing as well as home school them. God willing IF He opens door for me to visit United States in the near future I certainly would like to observe how mothers of large families manage their families. Well I love getting connecte with the people of God around the globe to be encouraeged strengthened and praying for one another. I have been in the Pastoral ministry for last 40 yrs inthis great city of Mumbai a city with a great contrast where richest of rich and the poorest of poorl live. We reach out to the poorest poor with the love of Christ to bring healing to the brokeneharted. We also encourage young and the adults from the west tocome to Mumbai to work with us during their vacation time. We would love to have some of your kids who are in thier lete teens and above to come to Mumbai toworkwith us during their vacation time. I am sure they will have a iife changing experience. Looking forward to hear from you very soon. God's richest blessings on you your family and friends also wishing you and your family a blessed and a Christ centered rest of the New year 2020. My email id is: dhwankhede(at)gmail(dot)com and my name is Diwakar wankhede.
ReplyDeleteThank you, sir! It is a blessing to hear from you! I regret I did not see your comment until today, several weeks afterward. I appreciate your kind words and encouragement. If the Lord opens the doors some day for any of our family members to travel to India to share the love of Christ, that would be wonderful! You can pray to that end, that He will direct and provide for that to happen!
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