I Am Groot!

continued from: A Baby For Jill

Monday night, was a Nani-privilege night. Hannah, aka my little baby Groot, and I spent the evening together while her parents were at their Bible study group.   I had much fun, just holding and talking to her.  Since baby Groot came to live with my daughter and son in-law, these last three weeks have been a whirlwind of adjustments and doctor’s appointments.  As Nani, thus far, I’ve had the joy of tagging along with baby Groot to several appointments.  So far, I have met the Cardiologist and the Audiologist.  Tomorrow we visit the Hematologist and lastly, in September the Downs Syndrome Clinic.   Despite caring for literally thousands of babies while working in Labor and Delivery/Postpartum/Nursery over the past 25 years, I’ve never had the privilege of caring for a baby with Downs Syndrome.  Interesting… What are the odds of that, since one in 800-1000 babies are born annually with Downs.

“The worst enemy facing parents of babies with Downs Syndrome is ignorance…”

So obviously, here I am reading… Friends in the DS community suggested I begin my education by reading,  “Babies with Downs Syndrome: A New Parents Guide by Susan Skallerup.  Since baby Groot was adopted, we have not had to face the shock of the diagnoses.  So, from the get-go I think we have had an advantage.  We entered this God-ordained journey without the customary grief that goes with learning you’re a child or grandchild in my situation, has disabilities.  Instead, we are so grateful to experience her life, in whatever way it unfolds.  However, as baby Groot grows, I am sure we will have many moments of great challenge and deep grief to overcome as a family.   And yet, today Groot is only 11 weeks old and making our lives pure joy as we nurture and love her.

One of my daughter’s friends, who has a grown daughter with Downs described her doctors’ explanation of Downs after delivery.   Her doctor said, “Your child will be short, fat, and won’t go to college”.  Obviously, our understanding about DS has changed exponentially in forty years!  Dr. Chahira Kosma states in Skallerup’s book, “The worst enemy facing parents of babies with Downs Syndrome is ignorance… Today growing knowledge and rising expectations are shattering the myths and stereotypes that unfairly limited opportunities for children with Downs Syndrome in the past”.   This insight is so true.  Thank you Dr. Kosma, for your encouragement and expertise.  I don’t plan to make that mistake.  The good doctor also says that success can be achieved with hard work and patience.  Well, with God’s help, we have that covered.  My daughter, baby Groot’s mother, is the most patient person I know and I can help with the hard work.  My spouse tells me that I came out of the womb working.

God is so faithful and He is good.  Thank you God!  Oh, we found the greatest scripture…

Before I formed you in the womb, I knew you. Before you were born, I set you apart for my holy purpose Jeremiah 1:5a

A short list of support organizations:

National Association for Down’s Syndrome

 

 

Down’s Syndrome International

 

 Global Down’s Syndrome Association

 

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