Being part of the Greater Things community over the last 6 months has provoked so many questions, yet I’ve found the community to be a place where questions are readily welcomed and valued, which is making way for growth and transformation. Following a discussion in the Evolve group (6-month mentoring program) last week, the concept of perfection and healing and God’s purposes - particularly in regard to disability - has been at the forefront of my ponderings.
My 3rd daughter, Katherine, has Down syndrome (DS) and over the seven and a half years since she was born I’ve had plenty of questions and wrestlings and much learning, with, I’m sure, very much more still to come.
Katherine’s shock diagnosis came in the hours after she was born, following 50 hours of labour which ended with an emergency c-section. One of the questions that were raised in the discussion last week was whether the typical notion that ‘perfection’ is seen in a newborn baby, would still be the case if the child had something ‘wrong’ with it.
Seven years back, through a haze of exhaustion and in & out of consciousness because of a reaction to the anesthesia, I remember turning to see our newborn lying a few metres away in the hospital bassinet and asking my husband, ‘what is wrong with her’… because I could see by her facial profile that she was different. Moments later the doctor came in and told us that it was suspected that she had Downs syndrome. To cut a long story short, it was days, if not weeks, before I could say that she had Down’s syndrome without bawling, and it probably took the best part of a year to come to terms with her diagnosis (a year that was full of hospital appointments and admissions, including open heart surgery and surgery for g-tube placement).
I don’t know that I thought much about perfection or the concept of it during those early years. With a two and one-year-old as well when Katherine was born, it was more a matter of survival than a time for much contemplation. However, in the years since, there’s been a fair bit of pondering, and with hindsight, I think part of the struggle to accept Katherine’s diagnosis was to do with letting go of the idea and picture of the ‘perfect’ I had expected, as well as the multitude of fears that bombarded us - fears of other people’s judgements, fears of the implications, fears of expectations, to name a few.
A few years ago someone at church declared that within a year Katherine would be healed (of Downs syndrome). It was someone we hardly knew and whilst maybe not ill-intentioned, it disturbed me. It also made me think and wrestle: Did God want to heal Katherine of DS? Could He? Why did He create her that way… is it that it is something ‘wrong’ with her, something that ‘corrupted’ in the process of conception, or did His creating her perfectly include Him adding in an extra chromosome to every cell? Is it God’s will that Katherine has DS or is it not? How should I be praying for healing for her? What is God’s purpose and plan in this ‘disability’?
Downs syndrome affects Katherine and our family in multiple ways on a day-to-day basis. It has definitely been a steep learning curve and bumpy journey, but as we have journeyed these last 7 or so years, answers have evolved to some of those questions and some remain unanswered but with some sort of an ‘okayness’ about the not knowing and the journey yet to come.
I know God COULD heal Katherine of DS… nothing is impossible for Him. However, I have not prayed that way because I have felt like God has a purpose in Katherine having DS. I can feel the swirl of other questions, and maybe theologies, rising up as I write that… does God do that… create disability (not that I like that word) for a purpose? Or does He just work good out of a bad situation? I have no idea. However, seven years into this journey I firmly believe that Katherine is a gift to us that we didn’t know we needed. A very good and precious one. From the shaking of perceptions and breaking of our image of ‘perfection’, to the stretching us out of our comfort zone and being compelled to advocate, to the slowing down of expectations and the necessity of taking things day by day, to the shift in perspective and searching for God in it all, Katherine has shaken much in our lives… much that needed to shake & break… and she also brought love and joy in a way that I had not seen or known before. Before she was born, when I was stressing about how I was going to do life with 3 under 3, God spoke to my heart that she was going to be a ‘bringer of joy’ - so clearly in fact that we added Joy to her name and her full name means, ‘pure, clear, my God has answered me with joy’. And that He has. In unexpected and beautiful ways.
I was lying next to Katherine last night getting her to sleep and as I snuggled her and had all this pondering going on in my heart, I wept as I thought that truly only God knew that I needed a little girl who has the softest and squishiest cheeks to kiss, who constantly wants and gives hugs and affection, who has a purity and love about her that has brought healing and restoration to my heart and changed much about the way I think, who IS joy, and who is a little more dependent and reliant on us than our other three increasingly independent little girls.
In the discussions we had last week Jessie DeCorsey wrote, “I think the theology regarding "perfect" has always been about restoring harmony between ourselves and God. Not about us being flawless.” It’s a beautiful thing to hear the voices of others in this community and to have my heart & mind renewed with truth. With this perspective, there couldn’t be anything more perfect about Katherine.