We had a wonderful Christmas and New Year’s at home with Sarah-Hope. Having not done any reading on the practical realities of parenting, we were in hysterics trying our hand at this without nursing support a few metres away… we had a lot of fun! Most of our family and friends were away during this time but we did enjoy a short visit everyday from whoever had been assigned to bring us a meal (these continued for 3 months after Sarah-Hope’s birth… and people made such an effort to feed us that we only had a handful of meal duplications in all that time! We’re still blown away by the amazing support we received). But the best thing about being home was having the privacy and time alone with her to enjoy Sarah-Hope, get to know her and explore her little body.
We decided to let everyone know what we did about Sarah-Hope’s physical condition in the first communication after her birth – hopefully in such a way which demonstrated our love for her and protected her dignity. But we could not try to protect people from the pain of her physical difficulties. This was more difficult for me than Rich – having to accept the reality of Sarah-Hope’s challenges for her, us and everyone around her. Months before, the pastoral counsellor had suggested that I draw from the bible story of Mary, the mother of Jesus. When Jesus was taken to the temple to be presented to the Lord, a righteous and devout man called Simeon declared great things about Him which his parents marvelled at. Then, Simeon said to his mother, Mary, “This child is destined to cause the falling and rising of many in Israel, and to be a sign that will be spoken against, so that the thoughts of many hearts will be revealed. And a sword will pierce your own soul too” (Luke 2:34-35). The ‘piercing of my own soul’ was something that I could identify with, the pain a mother experiences as their child suffers. I prayed that I might continue to learn much from the story of Mary, who “hid in her heart” the things said about Jesus, who recognized her role although she was also put in her place occasionally (when Jesus said “what mother, brother, sisters?”), having the grace to work hard, but to also step back and watch God’s story unfold.
On a number of occasions in those first few weeks at home Rich and I would find each other weeping over Sarah-Hope’s body and how difficult life might be for her. It was an important part of our own grieving and the acceptance process that we needed to go through. But based on the experience we had had up until this point, we knew that this painful journey would also be accompanied by beauty. And since we had known God navigate us through many difficulties in the last few months, we could be sure we’d find grace for future challenges as they arose.
One interesting challenge that arose was revisiting the “trusting in God, not in outcomes” approach that had guided us through the pregnancy after the birth. Now with a real, live baby in front of us, your parental responsibilities and the “sense of control over their lives” are greater. We realised the temptation to now put our hope in outcomes – for instance, we could put our hope in the fact that Sarah-Hope looked alert. But we had to remind ourselves that we should not put our hope in her intellectual potential and what that could open up for her future… but in God. Still. And always.
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