Sarah-Hope gets given an iPad!

We decided that an iPad would be a good investment for Sarah-Hope. We know that she is physically limited, and fortunately there is so much that technology will be able to help her with given the time that she has been born into. Many toys for babies require a fair bit of strength in order to push a button in order to generate some kind of response. While Sarah-Hope’s hands are much weaker than those who have the benefit of having the full structure of upper and fore arm bones and all the muscles and joints inbetween, the one action she can easily do is swipe - so the touch screen of the iPhone or the iPad is totally accessible for her. Another bonus regarding the iPad is that many children with physical disabilities require specialised equipment to help them – however, the use of this equipment adds to the barriers between them and other kids. The iPad, however, is used and enjoyed by everyone which really helps to mainstream and integrate children with disabilities.

I put the word out that we were looking to get Sarah-Hope an iPad to see if anyone might have a second-hand one to sell us. Amazingly, we had about 4 people offering to give her iPads within a couple of days! The first person who responded, however, was a lady from the UK who used to live and work in Cape Town. She had recently been blessed financially and said she would love to get Sarah-Hope a new iPad 2 from the UK! We were totally blown away. She bought the iPad and sent it to SA, just in time for Christmas. What an amazing gift!

After making sure it had a really good cover on it (has to survive a teething toddler!), we've had such fun introducing Sarah-Hope to her iPad! We are really looking forward to a lot of fun with this in the future...

Celebrating Sarah-Hope

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

_____________________________________________

Richard

This is my darling girl, the gorgeous Sarah-Hope, who was born exactly a year and a week ago.

The 2^nd 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.

Sarah-Hope has turned one!

Today is Sarah-Hope’s first birthday!

We had a really quiet day - I wanted to have the space to think about that amazing day a year ago, the hours preceding and after the birth, the outcome, and the time that followed… and upon this reflection write to my daughter. Here is some of what I wrote:

“Dear Sarah-Hope

As you were born into this world, I looked on. I saw this little soul, with the most exquisite blue eyes, and wondered what your life would bring to mine.

You have been so kind to me all year. The number of times I have had a sleep and you have just sat there watching and waiting until I was done… so patient. I look at you and know I am so lucky to have a child with your beautiful nature. Your eyes reflect a soul that is deep, and I know that you will be one the best friends that I have in this life. In some ways, it’s quite a road that I have been called onto as your mother. But I also know that the great reward of this road is you – that I know you, enjoy you, and treasure your company for as long as possible!

You are content, aware of your environment and look right into the core of people. There are so many things one could say about all the physical progress you have made, Sarah-Hope (You are my rocker and roller, mover and shaker), but the most important is that I love the person you are. I love having you in my home. I am extremely proud to be your mother. I know God has a great purpose for you, and I am trusting that He will be gentle with me as I aim to prepare you for that. Your life is a huge gift to me. You have rescued me from shallow pursuits and elevated my life to something with eternal significance, real impact and beauty. Thank you for arriving and staying a year ago. Thank you for being so gracious with your mother and not fussing. Thank you for being such a brilliant communicator, thank you for engaging with your world, well done for making so much progress, thank you for your love… and we’re definitely still working on the snuggles but I think you’ll get into it!

Love you.

Mom”

9 month update

Sarah-Hope has recently turned 9 months. With the recent conclusion of the most well-supported and high profile paralympics in history, we are so grateful that we have the opportunity to raise Sarah-Hope at this time in the world!

Superb sitting

We are so proud of Sarah-Hope - she's sitting unsupported, but not unsupervised! For a few months now we've been putting her into a box supported by cushions right up to her chest to give her the experience of sitting... and with the "table top of cushions", she has a surface which her hands can reach and interact with objects. Her legs are strong and dominate her interactions. One of the reasons for this is that she can use her legs to reach out, touch and sometimes pick up an object that is in her front line of vision. We've found this "time in the box" to be important because her legs are hidden away and she can focus on touching objects with her hands and mouth. She has developed really good mobility in her shoulders and with strong neck and back muscles she can use her hands and mouth to explore what’s in front of her. And if she’s on the ground, Sarah-Hope rolls and rotates to get her hand in range of something that she'd like to touch. It seems that all this work her trunk has to do contributes to her strength for sitting. She has become much more stable over the last few weeks as well - we can take for granted how much we use our arms to balance! Initially she would topple over if she suddenly played with her feet excitedly or if she started sucking one of her fingers... but she's working out how to do it all together now. And a friend has kindly lent us a tyre that she can sit in the middle of... and safely topple over to any side if needs be, it's wonderful!

Growing, feeding a little, and platelet count improving incrementally

Just after Sarah-Hope turned 6 months, she picked up a respiratory virus and was sick for about a month. With breathing difficulty, she refused to drink from the bottle, but amazingly through straight tube feeding gained a kilogram in that time! We've kept her milk feeds at the same level for a few months now, hoping that perhaps straight hunger would give her an appetite for solids... while we're delighted to report that she is now eating a whole ice-cube worth of real food from a spoon each day (yahoo!), she must be using her calories well as she just keeps getting bigger! And this has no doubt added to her strength and development.

Sarah-Hope is easily making a 2 week stretch between platelet transfusions now. Just after she was born she was getting these about every 9 days, so we're delighted with the improvement we've already seen in this. Drips are going in pretty easily (into her foot or big toe!), although she certainly makes her displeasure regarding this procedure known to the paediatrician and nurses!

And parenting?

We’re really lucky as Sarah-Hope is an easy baby and we're so enjoying her. Leigh specialises in the therapy and development programme... Rich, of course, specialises in pure play! We’re thankful for seeing so much progress and are excited about what the next few months hold.

Update - Sarah-Hope is 6 months old!

Last week Sarah-Hope turned 6 months! Its been a wonderful to see Sarah-Hope develop over the last couple of months - she's pretty easy going, increasingly friendly and becoming a little chatterbox (she makes a great Darth Vader  impersonation)!

Child development for a different body

Initially, when reading about the next developmental steps being "hand eye coordination and reaching out and grasping objects", we were a bit discouraged (!), but with the help of a physio we're keeping an open mind about Sarah-Hope using her feet for many activities that would usually be done by hands. For instance, she has a kicking mobile, and we're trying to introduce her to the piano by banging her feet on it (thank goodness my grandmother's not around to see it!). As for her hands, the aim is to help her develop the most functional grasp possible over time. This may mean hand surgery (consulting with a surgeon later this year about that) but in the meantime we massage her hands every day to keep them soft and open and she wears cute little gloves to keep her thumbs out of her palms. We deliberately put Sarah-Hope in front of a mirror (to help her see her hands as they are "next to" her face not in front of it), put objects into her hands and close her fingers over them to give her grasping experiences (see pic of her holding Rich's finger below). For the first few months she didn't seem to realise that she even had hands but we have noticed Sarah-Hope begin lick/suck the tip of her left index finger so she's definitely more aware of her hands now! And we feel so loved everytime she uses her feet to touch us.

Feeding tubes and platelet transfusions

Sarah-Hope's gaining weight nicely, doubling her birth weight in her first six months of life. She is still dependent on her feeding tube - this has now been switched to a "mic key button" which is like a valve on her tummy to which we now attach a tube for feeds. As she starts eating solids, the hope is that she'll consume more calories orally, but this will take time. We tried getting her going on solids early, but Sarah-Hope's mother has not been particularly successful at this, despite putting on elaborate entertainment shows for her daughter in the hope she'll open her mouth!

Platelet transfusions occur about every 12 days. We expect that to be the case for the first year of life at least, after which there may be improvement.

Next steps...

The next developmental steps, like sitting, will be interesting given that Sarah-Hope doesn't have arms to break her fall... and if she does, her low platelet count could mean some nasty bruising! She needs to have a very strong trunk for stability so we'll be making sure she does a lot of tummy exercises... This is going to be quite something - tiger mom in action! People often ask whether prostheses would be helpful, but it apparently people find it easier to adapt and use other parts of your body "more", instead of prostheses which just get in the way. Its going to be fascinating to see Sarah-Hope 'find her own way'. We had a great time meeting Nicky Abdinor this weekend. She's a psychologist who doesn't have arms but lives independently in Cape Town and drives an adapted vehicle (www.nickysdrive.com)... what an inspirational woman!

Are we coping well or are we in denial?

It is often recommended getting together with other people who have had a different parenting journey for support and encouragement. I arranged to have tea with such a mum who is a few years ahead on the journey. However, instead of finding our conversation encouraging, I found it to be the opposite. I wondered whether I wasn’t quite ready to hear about other people’s challenges just yet.

I explained this to my pastoral counsellor who said something rather interesting in return – “It may be that it’s too much hearing other people’s stories at this point, or it may be that this mother is not in denial.” Wow. She went on to talk to me about the crisis functional mode that we operate in where denial is strong but it keeps us moving forward. But this can’t be sustained over the long term - we need to walk through the valleys where we take denial off, face up to reality, experience the negativity of the situation, face up to our fears, feel grieved and come to terms with our losses. It’s not a place where we can live, but it is important to visit there when these emotional touch points come up so that having processed that we can have faith for the future. She also encouraged me to be positive out of faith for the future - not out of fear of the negative.

This really got me thinking. I didn’t want to be in denial – only to have to face up to all sorts of issues later on. I wanted to be present in the process of coming to terms with Sarah-Hope’s life. We had most certainly had a “quiet” year so far, and being cautious of exposing Sarah-Hope to unnecessary germs etc, we tried to keep her at home as much as possible. I do think that this has ‘given us time’ – time to recover from the huge build up to the birth, and space to become more comfortable taking Sarah-Hope out. We certainly haven’t put any pressure on ourselves to ‘get life back to normal’. I would describe us as being well but fragile – because I don’t think we have the emotional reserves for much more than what we are dealing with at the moment. I know that each new stage is likely to bring fresh realisations and grief - but for now I felt we were present in our circumstances.

In another conversation with our pastoral counsellor, we spoke about people coming to terms with the choices that they make by fully recognising both the gains and losses of each situation. I continued to think about ‘my denial’… and thought this ‘gains and losses idea’ was a really helpful concept that would help me grieve what I have lost, and embrace what I’ve gained. And so I’ve begun to use it more and more.

Financial provision

We have been so profoundly humbled by the ways in which God has provided for Sarah-Hope that we wanted to take an opportunity to just document how much we had been blessed to date, to thank God and remember His faithfulness to us:

·         Sarah-Hope was born 10 days earlier than planned. Because she arrived early, we had enough time to work out that she was going to be around the next year, need expensive treatments, and upgrade our medical aid to the second highest package possible! Phew!

·         Our paediatrician wrote to our medical aid outlining the procedures and treatments he thought would be necessary. These were basically all pre-approved right upfront!

·         A medical insurance policy we have agreed to let Sarah-Hope be added onto that so we get compensated every time she goes into hospital for more than 24 hours

·         Rich getting a contract at just the right time – after a wonderful period of time off after Sarah-Hope’s birth

·         Financial gifts – from people we know and other anonymous gifts… amounts of R50, R300, R1000, R3000, R6000, R7000 and R10000 - its been amazing!

·         An amazing friend who donated breastmilk to Sarah-Hope during the first few months of her life which helped her get through all her surgeries being fed breastmilk exclusively

And then to top it all off, we had an outrageous experience at a church conference. We were at the end of a talk when the speaker felt God had revealed the words “Ranelagh Road” to him. He asked if that meant anything to anybody as he felt that God wanted to speak to the relevant person. “Ranelagh Road” was the road that we lived in when we got married. Rich reckoned it had to be for us, especially when the speaker spelt out the name. The spelling was incorrect but actually the same one that Rich always used. So when no one else put up their hands we did. We had actually asked the speaker, who we know personally, to pray for Sarah-Hope during the tea break. When he saw that it was us, he said that because he knew some of our situation he would rather have two of the other speakers say if there was anything they felt God wanted to tell us. Both said that they felt God was going to bring about breakthrough for us, even amongst  all the challenges, strains and stresses that we were experiencing. Then a lady came up from the congregation. She was given the microphone and she said that when the one speaker had mentioned financial breakthrough she felt that God was challenging her to reach into her own pocket and give into our situation. And she then challenged the church to give to us right now. We were called up to the front and everyone was invited to come and "love on us" and give to us. People came streaming forward, hugging us, putting money at our feet as we stood at the front and wept.

It was unreal. And we can still hardly believe it happened. We were given thousands of rands that day. Crazy stuff. People kept coming up to us afterwards… even though we were the ones so thoroughly spoilt, they were so blessed to have seen the church in action. It was an amazing demonstration of the favour, love and provision of God – and we knew only too well how much we needed that, and would continue to need it in the future.

Embracing Sarah-Hope’s therapy

We’ve consulted with a physiotherapist, occupational therapist, speech therapist and dietician. Every few weeks I realise I need to get on top of all input I’ve been given and practically work out a way to fit all the things I should be doing with Sarah-Hope into a daily routine. What I have found helps is writing down everything I need to be intentional about doing with her, and then grouping those ideas into categories, and focusing on one area each part of the day. For example, when Sarah-Hope was being fed every 3 hours at about 5 months old, I’d do nursing, body care, sensory and hand work during the 6 – 9am slot; gross motor development exercises during 9am – 12 slot, visual and sensory input from 12 – 3pm, and  movement through space in the 3 – 6pm section. Having something specific to concentrate on for each part of the day helps me get to the end knowing she’s had input covering the major priority therapy areas – and the rest of the time I can just enjoy Sarah-Hope for who she is. Of course I have to keep adjusting this every couple of months to include all the latest advice and ideas as she develops. I put quite a lot of work into it at the time, but then once the ‘programme’ has been developed I really enjoy being intentional in my interactions with her. Therapy goes out the window on hospital days (for her platelet transfusions), and on weekends when we just enjoy each other as a family and don’t focus on any exercises unless they are quite critical for her at that time.

Being intentional about Sarah-Hope’s different development path, however, has made me consider the balance I have to strike between compensating for her physical shortcomings by “taking the world to her”, and the acceptance of the fact that she will not be able to have all the experiences that typical children do. I am sure that this will become more and more apparent as time marches on.

Reflecting on the first four months of Sarah-Hope’s life

It so happened that Rich didn’t work full time for four months after Sarah-Hope was born. He was finishing off a contract, almost started another one which didn’t come through and then got another job. It basically meant he had a full paternity leave (in terms of time, not pay!), and we cherished every day of it – from enjoying parenthood, to loving all the time we had together and getting a few things sorted out at home to facilitate this family stage of life we had landed in! It felt like a sabbatical. In my journal I wrote:

“I wanted to take a few minutes to write about how special I have found the last few months. I have been profoundly impact by the demonstration of the Father’s love through Rich’s becoming a dad. His lead and love for Sarah-Hope has really spoken to me so much, his example has instructed and encouraged me and where I’ve felt scared and broken, his love has helped me become restful – truly perfect love has driven out fear. I have so appreciated all the time I have had with Rich in these last 4 months. He has been at home with me, helping to feed Sarah-Hope while I express, helping to change her nappy while I organize in the kitchen, spending time with her while I thanked the numerous people who dropped off meals and gifts for her, adoring her and engaging with her and loving her and learning about her as I’ve looked on, taken an interest in every aspect of her… he has literally led me in loving her, in covering her, in exploring and loving her body, in laughing with her, in caring for her practically,  in cooing over her… I have learnt so much. He has been an incredible leader of his family. And now this outstanding, not perfect, but wonderful husband and father returns to work. And I have been grieving this truly… for selfish reasons of course… but recognize that this time was a gift.”

Amazingly, it was Richard who bonded with Sarah-Hope from birth. For me, the process of bonding took longer. I didn’t have any “wobbles”, but I realised that I had gone into the birth with layers of self-protection wrapped around my heart, bracing myself for shock and grief. As each week went by another layer would peel off and I was able to love and embrace my daughter in greater measure… and contemplate a future with her. This is what I was looking forward to now with Richard heading back to work – I would have more time with her. If Rich was around, he would be more likely to be with her while I did all the domestic work that supports parenting and communicate with others. Now that we were post her operations, where the surgeons and nurses do most of the work… it was time for her to start seeing therapists, which meant that I needed to get to work! But it also meant an opportunity for me to really own Sarah-Hope’s development. And this proved to be a wonderful way to build a relationship with my daughter.

Photoshoot - Enjoying Sarah-Hope at home

A friend gave us an amazing gift - a documentary style photo shoot. The photographer captured us at home with Sarah-Hope, from loving on her to the regular daily activities:

Found in the gaze of Sarah-Hope

Thoroughly enjoyed and adored

Family photo

Cuddling with mom

Time with dad

Tube feeding

Breastfeeding Sarah-Hope

Plenty of nappy changing...

Thank goodness Sarah-Hope loves her  dummy… especially when we dip it into glycerine to give it a sweet edge! Given that Sarah-Hope isn't yet able to get her thumbs into her mouth, the dummy has been crucial for self-soothing!

Post surgery holiday - Escaping to Rooi Els

I love lying on the couch

All sorts of crazy dance moves with mom!

Sarah-Hope loving being serenaded by our friend Chris

Update on heart surgery

Sarah-Hope's heart operation went very well..

The "good news" was that the duct which hadn't closed was huge so the doctors told us we could expect a big difference in her energy levels once she recovered from the op. While we knew her undersized lungs were making her breathless, we hadn't realised how much this heart problem was adding to it. But not any more! Sarah-Hope is so much stronger, taking full feeds out of bottles she didn't have the energy to suck from previously and... wait for it... she has started some breastfeeding! It feels so strange to be doing something so natural after months of tube feeding, syringes, measuring... and yet so wonderful (not least because the medical opinion was that she wouldn't breastfeed).

The "bad news" was that Sarah-Hope picked up a bug in the hospital (is not symptomatic but is a carrier) which is very dangerous for babies on ventilators. As long as she doesn't need to be ventilated or catheterised in the next six months or so she should be fine. When she was transferred from Christiaan Barnard to Vincent Pallotti hospital, Vincent Pallotti went all out to prevent the bug from spreading. This new arrangement means that whenever she goes in for a platelet transfusion, Sarah-Hope gets her very own room and a dedicated nurse to make sure she isn't anywhere near a labour or paediatric ward. It also means that Pathcare now comes to our house in order to take blood from her for the weekly full blood counts... how's that for service?! We are delighted:)

The next phase is all about growing... and we have had some fascinating first meetings with a physiotherapist, occupational therapist, speech therapist etc. But the best part is enjoying her smile, look around, start to chatter in her own way... As the one therapist said, "she has personality in buckets!"

Surgery - anti-reflux procedure and gastronomy tube insertion

So it's all happening! Sarah-Hope had her anti-reflux procedure and gastronomy tube insertion on Friday, 27 January 2012. The operation was a success and since she's been home she's already taking much bigger feeds and they are going much faster than with the nasogastric tube. With this comes the major progression... from 8 feeds a day to 7, yahoo! While this is now the official feeding schedule, the truth is that we mostly only managed to give her 7 feeds a day anyway by making the terrible mistake of thinking we would take a short nap before the midnight feed... or 6am feed... or 9am feed... and then sleeping through our alarm clocks and snooze alarms repeatedly... waking up in a panic an hour or two later trying to work out how to fit all her feeds in! But, despite her parents, she is growing... and we had our first smile!

Sarah-Hope will be having heart surgery on Monday, 13 February. Its a fairly simply procedure to close her arterial duct as this is allowing too much blood into the lungs which adds to Sarah-Hope's breathlessness. Looking forward to some progress with oral feeding once this is done. She will also have multiple platelet transfusions before and after the surgery, as was done last time...  and we hope that unlike last time, she will not develop a sugar addiction from the nurses putting sucrose on her dummy! We didn't realise this... and Sarah-Hope went cold-turkey on us trying to shake her newfound love for sugar. Eventually, thinking all the crying may be an indication that she could still be in pain from her surgery, Rich drove back to NICU to have her checked out. A nurse offered her some sucrose... she sucked that dummy so hard it created a vacuum and a red ring around her mouth, but she was totally satisfied! And so Rich came home with a syringe of the magic stuff and we weaned her off over a couple of days...”

Update - celebrating 50 days of life!

How is Sarah-Hope doing?

On Saturday we celebrated the fact that she'd been alive for 50 days! The clinic sister says she is thriving... meaning she's "growing, weeing and poohing", and is beautifully alert. Awesome. She continues to be an outstanding communicator (neighbours don't believe there is anything wrong with her lungs!!), and we're trying to become better listeners (before our ear drums burst)!

How is the parenting going?

So we picked up our first parenting book... fascinating stuff. They speak about a flexible routine. This, or so we thought, gave us licence to be flexible in our routine... when we want to feed her, put her down to sleep etc. We didn't realise that the flexibility is actually about her! So the routine is for us, flexibility is for her... crucial distinction!

What's happening medically?

Sarah-Hope has been diagnosed with Thromobocytopenia Absent Radius (TAR), a very rare condition. Knowing this helps her doctors in terms of managing her, as they are able to draw on academic literature regarding treatment. The research indicates that we can expect her condition to improve as time goes by, which is great.

What can we expect in the next few weeks in terms of her treatment?

- almost weekly platelet transfusions. This is in order to keep Sarah-Hope's platelets at healthier levels so that she is less at risk of bruising and bleeding. The paediatrician has also suggested that given her vulnerability, we stop beating her on the back in order to wind her... a softer rub would be more appropriate:)

- a procedure to insert a PEG (tube directly into her stomach), which will replace the nasogastric tube. This is a longer term arrangement until Sarah-Hope develops the respiratory capacity to feed orally, is much easier to manage, and less irritating for her than the nasogastric tube. The super cool thing is that you can put meds and food into the stomach MUCH FASTER than through the nasogastric tube... highly appealing particularly around the midnight and 3am feeds!

Reflecting on Sarah-Hope's first few weeks at home

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.