On 9 December 2012, our church held a special celebration service for Sarah-Hope. It was truly one of the most significant and joyous days of our lives. We had gone into her birth with a memorial service planned – this was advised, given Sarah-Hope’s poor prognosis, and we had taken it on board since we didn’t know what state we would be in after the birth but knew that we would want to do something to acknowledge her life. Given all the other preparations for the birth, it took precious time and energy to think about who we might invite, what songs we’d like sung, what we might say etc. We decided that should she survive, we’d still like to have some special type of thanksgiving for her. We approached our pastor to ask him if we could have such a service at our church, perhaps on a Saturday. He then asked us if we would be prepared to do it on a Sunday morning as he thought it would be good for the church to hear our testimony. Our church has over 1000 members so even though many people do know about Sarah-Hope’s extraordinary life, many others do not. And since this is a community she will be growing up in, we could certainly see the value in introducing Sarah-Hope to the rest of the church.
We waited until Sarah-Hope turned one year. This felt like a significant milestone as ‘infant mortality’, defined as the death of babies less than a year old, was one of the outcomes we were preparing for but had also escaped. We invited many people we knew – letting them know that our morning service was going to be dedicated to celebrating Sarah-Hope’s life, that we would both be sharing along with our pastor and we’d love them to be there. We were so humbled by the amount of people who came, recognising the impact that this precious daughter of ours has had on so many people’s lives. Our church was so generous, not only in actually setting aside a whole service to celebrate Sarah-Hope, but they laid on a special reception for all our guests afterwards… we arrived empty handed, with all the people we could.
For us, apart from the joy of having so many loved ones with us that day, the day was about acknowledging all that God has done in the last 18 months, and also about preparing a community for Sarah-Hope. Understandably, given Sarah-Hope’s extremely rare condition and disability, people would have fears about how to relate to her and how their children might react to her - this is not something people are exposed to everyday, especially in South Africa’s extremely divided society. We are very aware that we need to help build those bridges with the community around us in order for Sarah-Hope to have the opportunity of growing up known and accepted for who she is.
As we thanked people for coming, the overwhelming response of our guests was that they felt it such a privilege to share in this special day with us. We were blown away by how moved people were. In this world, a child with disabilities would be considered ‘lucky to be included’ by those around them. But on this day, the community around Sarah-Hope felt ‘lucky’ to be a part of her remarkable story.
Below is what we shared at the service. The audio of our testimony and the sermon can be accessed on http://media.jubilee.org.za/Jubilee/Sermons/SVR_Sarah_Bergh.mp3
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Richard
This is my darling girl, the gorgeous Sarah-Hope, who was born exactly a year and a week ago.
The 2nd of December 2011 was without a doubt one of the most significant days of our lives. Sarah-Hope’s birth and life has had such a profound impact and in preparing for this morning it’s been wonderful to take time and reflect on the path that Leigh and I, and others, have walked with her. In many ways I’m just like any dad who, despite having had to give up his man cave and embrace the surreal world of sleep deprivation and nappies, knows beyond a shadow of a doubt that their little girl is the brightest, the cutest, the most beautiful and indeed the best of all little girls anywhere in the world. And yet there have been some unique aspects to our journey as well as many rich lessons. It’s our joy and privilege this morning to share some of our story with you. It’s a story about challenge and complexity, unexpected joy, incredible kindness, family, community, faith and above all, Hope. Hope that sustains, hope that carries, hope that shines through in dark and lonely moments, hope that makes sense of confusion and hope that perseveres.
The first time we saw Sarah-Hope on a scan was an amazing experience. At six weeks she was a tiny, perfectly positioned blob pulsing with glorious life. We were transfixed and so full of expectation for our first child.
The second time we saw her on a scan was more like being hit by a truck. We were told that at 13 weeks our little girl was in a terrible condition...her whole body severely swollen, missing most of her arm bones, and with possible organ malfunctions including a heart defect and severely compressed lungs. We were told that it was surprising that she was still hanging on, that she had no chance of survival and that it was likely to be over in a matter of weeks, if not days. It was absolutely devastating news.
After the scan we were privileged to be able to retreat to a family holiday house and for ten days it was literally all we could do to get out of bed. Some days I don’t think we even managed that.
As the shock wore off fear crowded in. We were afraid of our child dying. How would we experience that? Would her body be terribly disfigured? How would we cope with the grief? Would we ever have the courage to try again?
We were also afraid of our child living. In some ways, more so. How would we cope with the demands of having a disabled child? How would our marriage survive? What would the impact on our family and community be? How would we cope with prejudice and misunderstanding? What about the medical costs? What about our lives? What about our hopes, dreams and plans?
At times I wondered whether it wouldn’t be better for her to go straight into the arms of a loving God, in a place where there are no tears and she would be free of her broken body. At other times I was desperate for her to live, even if it was just for a few hours, so I could at least meet her and hold her.
Early on we realised that we had to make some courageous choices and we decided to value, embrace and celebrate her life, even it was an unborn one. This included having a special pregnancy shoot, naming her and me running the Table Mountain Challenge for her.
As Leigh’s pregnancy progressed we were confronted with increasingly complex and difficult choices. Not terminating was one thing, but what about the level of medical intervention? We grappled with the complexity of knowing that our decisions, no matter how sincere or well intentioned they were, had the potential to artificially prolong her suffering, or to worsen her disability, or to deny her a chance at life. And that we actually had no way of knowing for sure, either before or after the event. We weighed heroic intervention against a good death. We consulted, we read, we prayed, we debated, we agonised. And we came to realise that ultimately her life, and ours, was in God’s hands and that in the end, all we really could do was hope in His love. It was an intensely humbling time.
Against all odds (literally), Sarah-Hope reached viability and carried on till a Caesar, just short of 37 weeks. Even though she had gotten this far she was still given little or no chance of survival, her lungs still appeared to be very compressed, and the best we were hoping for was a few precious hours or even days with her.
The birth experience itself was almost surreal. We were totally at peace, the medical staff took great care of us and absolutely miraculously Sarah-Hope came out pink, feisty and ready to go. After the APGAR test and cutting the cord I was handed my precious little bundle. Everyone stepped away and it felt as if I was totally alone with her in the room. As I held my daughter, the most intense and incredible love for her flooded me. A love that was fierce and jealous, a love that felt like it was trying to jump out of my chest, smash through the wall and roar down the corridor holding her triumphantly aloft. It was an utterly profound moment that has lived with me ever since.
Now when I hear about God’s love or His father heart towards us I see it in a new light, more real, more emotional, rawer, and more powerful than we could ever imagine. A love that delights in us and that dances over us with singing. A love that reaches us where we are and that doesn’t depend on our performance. A love that cares deeply and joyfully sacrifices. A love stronger than death. And I’ve also seen how the beauty of compassion, empathy, forgiveness, humility and generosity can bring deeper fulfilment than any form of entertainment or achievement.
We are often asked how we do it. How do we cope with the setbacks, the difficulties, the vulnerability, the complexity, the pressure, the questions and the uncertainty?
On one level we’ve had incredible support from our family, our friends and our church community. We have received wonderful, thoughtful gifts; we’ve had meals provided for the first 3 months; we’ve known the kindness of strangers; we’ve received anonymous gifts which have helped to cover significant additional medical costs, we’ve had incredibly kind and positive responses from work colleagues. We have been loved, cared for and carried by an array of friends, family, colleagues and church community. The Paralympics and all that comes with it have also been fantastic.
But as wonderful and as necessary and as much of an absolute privilege it is to have all of these things (which we certainly don’t take at all for granted)...when it’s 3AM and you’re alone in a room with your child, weeping over her handicapped body, cut to the core over the suffering that you know she will experience, it’s not enough. When you’re next to her hospital bed, with the ventilator chugging away as her confused, morphine dulled eyes plead with you, it’s not enough. When you lie awake at night considering the medical challenges still on the horizon or whether she’ll cope with schooling and whether she’ll have friends, it’s not enough.
Soon after the 13 week scan I read a portion of scripture which says, “And we rejoice in the hope of the glory of God. 3 Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; 4 perseverance, character; and character, hope. 5 And hope does not disappoint us, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us”.
The glory of God is something to be hoped for and chased after. If we pause for a moment we see and feel glimpses of that glory. We see it in creation, we experience in moments of genuine community, feel separation from it through pride, petty jealousy, and unresolved conflict and we feel it most in those fleeting moments when we feel most fully alive.
The rejoicing in our suffering is a bit harder to swallow. It’s not something we aspire to. But suffering is an integral and unavoidable part of the human condition. Although it has the potential to leave us bitter, angry and isolated, when responded to well suffering can draw us into deeper community, rescue us from complacency, strengthen our humility, give us perspective and build our faith.
In many ways the fears that Leigh and I face are exactly the same as those of any parent...will our child fit in, will they find their thing, will they be healthy, might they have an accident, will they be safe, will they be happy, will they like us? We find that with the challenges that Sarah-Hope faces, these fears live closer to the surface and we have the opportunity to face off against them regularly. What brings us through is the truth that who we hope in is more important than what we hope for and that He loves us more than we could imagine.
Leigh
Just after we had our 13 week pregnancy scan where all the complications were picked up, we came to church where a guest speaker was speaking on Christianity and convenience. He mentioned how we can adopt a Christian lifestyle because of the value that any person can derive from following the wisdom offered in the Bible. It may help you to be more successful at work, enrich your marriage or raise better behaved children… which is rather convenient. He then contrasted that with the lessons from the parable of the Good Samaritan. A man had been stripped of his clothes, beaten and left half dead on the side of the road… a priest and a Levite, well to do religious individuals, went down that same road, saw him, and passed by on the other side. But a Samaritan saw him, reached out to him and cared for him at significant personal cost and inconvenience.
As a Christian I found this message deeply challenging – because if I was honest with myself, it felt like it had been a while since I had really stopped for anyone, certainly for long enough to be truly inconvenienced by it…. To get hands on, and do the messy and sacrificial work of meeting someone at their point of need. Until that person was in my womb. I knew that this little girl’s body was in a terrible condition…that many would probably want to just cross the road, pretend they hadn’t seen her and walk on. But I also knew that there was an invitation for me to stop, to be inconvenienced by the life inside me. What has been remarkable is how joyful an experience it has been.
Ian Brown, a father of a disabled child says in his book ‘Love’s Outer Reaches’, “The disabled frighten us because they remind us of how little control we have over our lives, how contingent and even undeserved our gifts are.” We can be so frightened by people with disabilities, those who are different or who have great needs. Sometimes it’s because we’re not sure how to be with them and what they are going to demand of us. As Sarah-Hope’s mother, stopping for her has meant that I have had the privilege of spending enough time with her to be able to discover that inside this little body, is the most beautiful person – a deep and caring soul.
And on the other hand, I have been so profoundly impacted by those who have stopped for us. In our modern world, we so prize being able to live out our talents and strengths, having the independence and freedom to do what we want when we want. I wonder if in this self-consumed state, we don’t lose the beauty that emerges in life when we reach out to each other in our pain and suffering… those circumstances which bring out the richness in your marriage, your relationships, and faith. There are so many people– our church leaders and community, doctors and therapists, and many friends and family who have made such a special effort to join us here today… who have stopped for us. We have been so humbled and incredibly fortified by the prayers, love, messages and practical support you have given us. Some of these people we have known all our lives, some people we have only just met. Thank you for the kindness you have shown us. And for joining us as we’ve been determined to celebrate Sarah-Hope’s life for as long as we have the privilege of being a part of it.
What is Sarah-Hope up to now? Richard, says to me “I am so proud of my girl. She is starting to impose herself on her environment!” There are two positions you are most likely to find her in – she’s a superb sitter and has incredible trunk strength and flexibility which she uses to get her hands to objects in order to explore them.
And she is also a rock ‘n roller. The way she moves through space at the moment is to roll across the floor, which she can do at quite a pace, reach up and explore the world with her feet.
What will the future look like for Sarah-Hope? We have no idea! As overwhelming as this can seem, we have total faith that in the same way God has already guided us through so much uncertainty and complexity in the last 18 months, He’ll show us the way as and when we need it. Because of Sarah-Hope’s challenges and frailties, we have to accept that her development path will be different. And difficult. It is our responsibility not to shield her from this, but to prepare and equip her to meet it well and to find the opportunities that lie therein. We totally acknowledge that it’s likely to make us all feel uncomfortable but again, we believe that if we embrace the inconvenience, great learning and richness will result for all. We expect the journey to continue to be full of many hilarious moments, tears, deep challenges, personal change, inexpressible joy and love.
Most importantly, as Sarah-Hope’s parents, we want our family to be a context in which she comes to know that which each of us need to know:
- we are accepted, because Christ has accepted us
- despite our imperfections, God’s love for us gives us tremendous dignity and value
- we are embraced, enjoyed, delighted in, celebrated and cheered on
- God is worthy of our trust and full confidence. He is the One able to save us, provide for us, and do more than we could ever think or imagine concerning our lives.
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