Some of you may be wondering why it is that I am "re-writing" Ella's story. Well, it is because when I would go back and read what I wrote in those first few weeks, which I did often, it became more and more clear that it's the not the message new mothers needed to hear. Parts of it were, absolutely, but when I originally wrote it, my purpose was to document for myself, our loved ones, and the few followers I had, the logistics of our journey. But so much of what I wrote just doesn't matter. It happens differently for every family and chances are, if a new mother is reading it, they have already worked their way through a labyrinth of medical terminology, heart scans and blood tests.
What they are looking for is hope.
They are looking for someone who can affirm the complicated emotions that they are feeling, someone who can hold their hand through mourning the ideals they had and yet, through it all, say, "It's going to be okay."
Since I wrote the first edition of Ella's story two and a half years ago a lot has changed. I am not afraid anymore. I am not afraid of Down Syndrome and I am not afraid of being vulnerable, transparent and real and that is what hurting people need. It is only in that vulnerability that a hurting soul can hear God's still small voice.
The night Ella was born and into the wee hours of the next morning my heart ached. I don't think I cried but each breath caught in my heavy chest. It was a pain deeper than the labour I had endured the day before and longer than I had ever experienced in my life. And yet, in the stillness, God was there. He was there as I prayed without eloquence or poise the prayers that I did not know how to pray. I prayed that Ella WOULD NOT have Down Syndrome. How could I not? While it seemed like a prayer prayed too late, a diagnosis had not been made; like Jesus in the garden before his death, "Father…take this cup from me, nevertheless, not my will, but yours be done". I knew that he had knit Ella together in my womb and I needed to commit her to him and in that moment I knew courage and peace. Alone in the quiet I vowed to Ella that I would protect her.
God had granted me us the grace we needed in the time we needed it.
In those next few days, between trying to get Ella to nurse and constant phototherapy for her jaundice I wanted so badly, just to settle into a diagnosis. But each time I brought it up, it was dismissed. The resident doctor even told me that she did not have Down Syndrome and the nurses wrote off my tears of frustration as postpartum depression.
Only Ben gave me any consolation. He went home and did what any parent would do. He Googled it. When I think about how little I knew about Down Syndrome when Ella was born, fear seems like the most logical reaction. He listed the symptoms: Brushfield spots, Palmer Crease, flattened bridge, button nose. She had them all.
To be continued…..