EN(dur)ANCE by Robin Gudal

 

I have a special needs sister. Her diagnosis from the 1980s was moderate mental retardation. This is a medical term defined as such: “significantly sub-average intellectual ability, which ranges between 35-40 and 50-55 and concurrent delays in adaptive functioning that presents prior to the age of 18.”

As a medical term, it is the only time the word retardation should be used, ever!

I recently was in two separate situations within an eight-hour period that a mature, intelligent, kind and loving over 40-year-old person used this word. I was not happy, and I was shocked and appalled. They knew better.

These two individuals have had exposure to special needs individuals, up close and personal. I was not silent; I lovingly challenged them to choose a different word in the future.

Have you heard about the movement Spread the Word to End the Word? It is a United States national campaign to encourage people to pledge to stop using the word retard. End the R word advocates believe the use of the word retard in colloquial and everyday speech is hurtful and dehumanizing to individuals with intellectual and developmental disabilities.

My soap box.

I may be unique (no comments under your breath please), but if you asked any of my kids, “If your mom was to adopt a child, what child do you think she would desire?” They would undoubtedly answer, a Down syndrome little girl. I have a special place in my heart for such children. Age and circumstances have not allowed this dream to come to fruition, however, I know parents in this situation, and I get the privilege to pray for their families.

“For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful; I know that full well.”  Psalm 139:13-14 | NIV

From author Heather Avis, in her book, “Scoot Over and Make Some Room,” she quotes, “He (Jesus) did not go on to say, ‘these words are only true for those of us who are fully able bodied without any cognitive delays or differences.’ I would tell people that these verses are true for my daughter with Down syndrome as well. I would tell them that when God created her, he added an extra chromosome to every cell in her body with purpose and intention. I would remind them that when God says humans are created in the image of God, that means my daughter with Down syndrome is an image bearer of God. Which means she reflects the character and heart of God in a way only she can … with Down syndrome.”

 Lastly, she shares, and I agree: “This is why full inclusion, doing life with those who are so different than us, is crucial for the health of the body of Christ. Therefore, it’s important to take notice of who is missing in our lives and to be intentional in creating a space for them. Because if we make space in our lives for certain kinds of people but not others, we will never know the fullness of God or understand the depths of God’s love for humanity.”

There’s a sweet book I read many years ago, entitled “Angel Behind the Rocking Chair,” by Pam Vredevelt, and here’s a few thoughts I highlighted:

• What he (Jesus) had in mind for our family’s future and what I had in mind were worlds apart.

My takeaway: When my parents adopted a nutrition deprived, potbellied brown-skinned girl from an orphanage picture they had no clue how life with her would unfold for our family. For one, she was non-verbal. I remember Dad contacting Mom from Columbia and reporting this, to my overly optimistic mother’s reply, “Bring her home, we’ll figure it out.” Update: they never figured it out!

• Her brief life had eternal purpose.

My takeaway: Thankfully my sister has had many birthdays since that week of transition from another country to the United States. It is not that way for all. This is a truth; all life has value and hers is no different. I can profess my sister’s simple faith often challenges my own. She may not understand all the tenets of Christianity, but she knows the name of Jesus, and she knows Jesus loves her; she knows Jesus!

It really doesn’t get any better than that.

• Acceptance is powerful. It brings quiet peace to a heart torn with conflict.

My takeaway: We chose our sister. We accepted her as one of us. Has it always been easy? No. She is a part of our tribe, the Beckmans, and we walked through hard and difficult pieces of the choice our parents made together. She brings joy beyond our comprehension. I can’t image our lives without “Auntie Rosa” (my kids’ name for her) in our family.

If you are as blessed and honored as my family to be chosen to know and love someone extra special, help educate others.

Robin (Beckman) Gudal, intentional in life, is a wife, momma, nana, friend, and a flawed and imperfect follower of Jesus.