For the next two months we were very busy with work, working evenings and weekends and didn’t have much time to process. Underneath it all, I was emotionally distressed. I was searching for answers because the whole pregnancy we thought that the next scan would give us more information… and yet although the picture was changing, the doctors could not really tell me anything. Based on their opinions we shouldn’t have been at this stage in the pregnancy. I didn’t hold it against them as it was an unusual situation, but I realised I couldn’t look to them. We really had to throw ourselves on the mercy of God, who knows everything… even if all the specialists we were consulting didn’t.
When we first met our pastoral counsellor, we admitted to her that our “worst case scenario” was the baby making it to term, as having a significantly disabled child was extremely daunting. Looking at it from that place, we didn’t know how we would cope and we certainly didn’t know what that would then mean for future family – would we have the emotional or financial resources to provide for Sarah Hope let alone have any more children? Having passed the 28 week scan, with our baby’s heart beating away into the viable pregnancy stage, we were indeed suddenly having to face up to this possibility. In a very honest session with the pastoral counsellor, we discussed the questions I was grappling with:
- How did I really feel about my daughter living or dying and why?
- What would be the impact on my life if she lived or died?
- How did this influence me in making decisions about how much medical intervention we wanted during and after the birth?
At the 13 week scan, we faced so many potential outcomes. Of these, miscarriage, maternal health complications, stillbirth hadn’t arisen as they had been expected to … and the possibility of live birth, infant mortality or a surviving but disabled child were ahead of us. We had consciously worked at not fearing outcomes… and this also meant not hoping for a particular outcome. Fortunately, they all seemed like pretty awful outcomes so it was hard to hope for any of them! It was possible to consider which outcome would be harder and want to avoid it – but it was impossible to know that. What does one hope or pray for in such a situation? The scripture Romans 5:2b - 5 was really key for us - to put our hope in the glory of God. We wanted an outcome that would bring God glory and we were determined to walk this out as best we could for that purpose. But even though we were guarded about hoping for particular outcomes, as the weeks went by, we did have actual desires which we prayed for. The first prayer request was that we really didn’t want to have another miscarriage. As our daughter pulled through unexpectedly into the viable pregnancy stage, we then realised we could be looking at birth with her dead or alive. We wanted our daughter to be free, which we knew would only be in heaven, but we also wanted to meet her and have the opportunity to love her in person. We were enjoying her growing inside of me so much, we didn’t want to lose her and the richness she had brought to our life. We wanted more time. We wanted her to be born alive so that we could have some time with her. We wanted to hold her. We also prayed boldly for healing at times.
The increasing boldness and passion that we had for Sarah-Hope’s life didn’t make her birth, which was drawing near, less daunting. She seemed safe inside me. As soon as she came out, we knew that she would be subjected to prejudice because of her swollen and disabled body and this broke our hearts. Even though we knew that Christ himself was despised, not esteemed, had no beauty or majesty to attract us to him (Is 53), concern about her appearance was real. More than anything, however, I was concerned about what my emotional reaction would be to Sarah-Hope’s birth and survival. Though no doctors would really talk to me about her living, I knew I had to prepare myself for this outside possibility. I would often say to Richard, “do you realised we could have a disabled child?” One night he amazed me by saying, “Leigh, it would be incredibly difficult. But I would rather have that and fall into the hands of God than abandon her.” I was stunned and humbled by this beautiful response. Richard’s trust in the grace we would find by “falling into the hands of God” deeply moved and encouraged me. Obviously, as Sarah-Hope’s mother, her living would impact my day-to-day life in a different way to Richard. But Rich helped me to lift my eyes to the Lord to be able to say “if He is with us, what can man do to us?” This, in fact, had already been our experience in the pregnancy. Though outsiders would look at our circumstances and consider them to be a “nightmare”, we had known real peace, a wonderful sense of God’s presence with us as He protected us on the journey. God had been with us; God would be with us. This gave us confidence.
The key to making the birth and care plan decisions was surrendering to the truth that our sovereign God in the heavens would do whatever pleased him (Psalm 115:3), and we had to accept what that was. That freed us up to give our daughter the opportunity to come into the world under the best circumstances, and then see whether God would give her life or take her to be with Him. And so we set out to make our plans in such a way that promoted her life chances but did not presume them – we did not know what the outcome would be, but we wanted the decision to be the Lord’s.
I found our sessions with the pastoral counsellor very helpful. As we were sorting through different opinions about our situation, she encouraged us that people would give advice from their perspective and it must be understood as that. God was calling Rich and I to walk this out and as Sarah Hope’s parents we had the most information about the situation which would be used to make our decisions. Again, we were reminded that parenting, like the rest of life I guess, includes making mistakes which may be far-reaching but thankfully we serve a God who saves us and won’t abandon us. We treasured the prayers that covered us during this period and all those who sent messages encouraging us with scripture and love.
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