This week we got a message on our family WhatsApp group we didn’t see coming. It was from one of my sisters, sharing openly with us her siblings, for the very first since her last child was born six years ago. It was something about her lovely daughter, that was very obvious to all of us; but I figure we didn’t quite know how to broach the subject or we just didn’t have the courage to speak about.
As the replies and responses poured in from the oldest to the youngest of my brothers and sisters, it hit me, maybe not for the first time though, what those six years would have been like for her, her husband and their two older kids. I let my mind take me to that place where I was her father and how difficult it must be watching her go on a trajectory quite different from the expected, the acceptable.
I doubt I can express the emotions in my sister’s text that morning, so I’d just reproduce it here in the hope that it might get us thinking and even start a conversation. These are her words –
“I am the mother of a beautiful, energetic, enthusiastic, caring and very intelligent 6-year-old girl living with Down Syndrome. I’m sure these adjectives shocked you because society does not associate a special child with anything positive, rather they associate him or her with anything that is down and ugly and abnormal!
“Actually, I used to belong to that unfortunate school of thought which judged a people by their looks, limitations, challenges and other boundaries placed by man and certainly not by God.
“Through faith and by the special grace of God, my family has learned to look beyond the stares and pity, the oddness of a face, the delayed developmental milestones such as speech defect, poor cognitive ability amongst others to her glorious ABILITIES!!!
“Now, this may shock you but this child is a bundle of joy who has been ENGRACED by the Almighty God for a life of exploits. As a family we have never seen her as a problem and do not discuss her as such. We didn’t allow our joy to be stolen by a medical verdict because we had God’s verdict that our seed shall be mighty upon the earth.
“Hallelujah!!! She is mightily endowed with the gifts of care, love, intuition etc. and I dare say our moments of fun with her far outweigh the moments of anxiety.
“Do I think she would never have been born? NO! Do I think it’s not worth giving her love, care and education? CERTAINLY NOT! But I do wish more for her…I wish that the society would stop pitying or stigmatising her and simply uphold her in prayers and make therapy and qualitative education available to her and every other ENGRACED CHILD. Now the next time you see a special need child, remember that the Lord calls him or her the ENGRACED ONE!”
I salute the mother who did this. I salute any mother who does this because I have an idea how difficult opening up in this manner to the whole world must be. I know from some encounters I had growing up that the default mode when faced with the reality of bringing up a child with special needs is denial and shame. The denial makes you deprive the child of care and attention, while the shame makes you hide the child from family and friends. They are hardly ever mentioned, they are not in any family photos and they certainly never go out. In fact, it is as if they don’t exist.
I remember visiting a friend many years ago and seeing the confusion and embarrassment on his face when I stumbled across his elder brother while looking for the bathroom. In all the years we had been friends, I never knew he had an elder brother with Down Syndrome. He never mentioned him, not even once.
That was why reading the message got to me. If you knew my sister, then you knew all her three kids. They all get equal face time on her DP. And this is not an exaggeration; Mimi is the best-dressed six-year-old girl I know!
So, let me end by thanking my sister for her compassion, bravery and courage in speaking up for kids with Down Syndrome, and for all other engraced Children through her ENGRACED ONES initiative. Most of all I thank her for allowing me share her story this week.
If you are a proud parent of a child with special needs or you know anyone who does, sharing your heroic stories of care and support could be all the encouragement someone having difficulties need. I don’t have a medal of honour for you, and my thank you certainly isn’t enough, but maybe my prayers will get to heaven and you’d find grace when you need it.