A Promise Worth Keeping…

“Suffering. Rejoicing. Squalor. Beauty. Love.  Pain. These are the things that surround me, and all of them are from Him. This life is beautiful and terrible and simple and difficult, and He is using it for His glory.” – Katie Davis in Kisses from Katie

This new year, 2018, has started off with an invitation into hard places. We have been here before. We have loved, we have lost, and we have asked God to spare a little life only to later beg Him to take it away. “God, rather take her too soon, than too late”, were the words I prayed in 2012 as doctors told us that there was nothing more to be done…

I want to share this journey in order for our friends and family to know that we don’t make these decisions easily. We don’t simply have superhuman courage and dive into hard places. God takes us all on a journey and ours often involve a lot of tears, fears and pleading to let this cup pass. But then He stills our hearts and gives us a glimpse of Eternity. A glimpse into His father heart – a heart for the sick, the broken, the lonely – and He invites us in.

Towards the end of 2011 we met a very cute and very ill little girl named Ncamsile. Christoff had met her a few times before as she was often admitted to his paediatric ward with upper respiratory infections and other ailments. I don’t know why God did not allow us to meet Ncami sooner, maybe we would not have been ready, or maybe He simply wanted us to enjoy the freedom and fun of our first year of marriage without the burden of loving a little one who we would soon have to let go. In any case, I met little Ncamsile towards the end of 2011 at a Down Syndrome Awareness Day that I was hosting at Mseleni Hospital in my capacity as a medical social worker. She was the cutest little thing with her big almond shaped eyes, milky coffee coloured skin and tiny little body. She was a shy and precarious little thing who clung to her “aunty” (the carer at the children’s home) for dear life, checking out all the happenings around her. I went about my responsibilities of the day, not realising that this little girl would call me “mama” only the following year.

I had convinced myself that one needs to achieve the highest level possible in your career and was working on a Social Work Masters in paediatric HIV the following year. One day, possibly around March, Christoff came home and asked if I remembered the orphaned baby girl with Down Syndrome from the children’s home as she was currently admitted to his ward again. Of course I did! Those who know us know that we have a soft spot for people with Down Syndrome. I simply cannot walk past a baby with Downs and not cuddle him or her. They are absolutely the most gorgeous babies on earth! This time however, I simply could not get little Ncami out of my head or heart. I “knew” that we were not ready to have children yet – oh the naivety of youth – and started entertaining the thought of offering ourselves as weekend parents for little Ncami. Soon we were screened by the Children’s Home, had set up a very wonky second hand campcot (we are pro’s now by the way!), bought whatever we thought a baby might need for a weekend and voila – there she was!

After that first, rather interesting weekend, I knew that I would struggle to give Ncami back. We had unofficially, officially become her parents. We also realised that she had more serious medical needs than the children’s home might have realised. This special little person was born to a mother from Mozambique (father unknown) who worked as a domestic helper for a Zulu family in the Kosi Bay area which is on the border of South Africa and Mozambique. Her mother had other children and passed away shortly after birth due to AIDS. The Zulu family kindly took in her older children but due to Ncami’s extensive special needs (Down Syndrome, a severe heart defect, pulmonary hypertension and hydrocephaly) she was left at Manguzi hospital where she spent the first year of her life before being placed over to Mseleni Children’s Home.

The months that followed were filled with doctors’ appointments, occupational therapy appointments, speech and language therapy appointments, cardiac clinics, lonely nights with only Ncami and myself in a hotel room or crashing at friends’ homes on our way to appointments, many frustrations and many fears. But they were mostly dominated by the sweetest and most strong willed baby girl crawling into our hearts, singing her heart out at her own reflection in our oven door, lots of kisses and lots of laughter. Ncami was not legally in our care but spent most weeks living between the children’s home and her own room in our little wooden cottage. Around four months into our personal journey with Ncami I knew that we had gone “all in” when a callous doctor at the cardiac clinic at King Albert Luthuli Hospital in Durban mistook me for her social worker and took one look at her and said “Oh no, she won’t survive. Her lips are already turning blue”. I burst into tears and very harshly told him that I am her mother! The poor man felt really bad and I am sure that he was quite rushed and probably overworked that day, but the damage had been done. The reality was that we had fallen in love with a baby who was busy dying. No turning back.

Never before had my prayers been so broken and so sincere. “Lord, please take little Ncami. Rather too soon than too late. Don’t let her suffer.” God hears our prayers, He feels our pain. Heart failure is not something that is easy to watch. The most unbearable part of being in heart failure is being unable to breathe. Your heart loses its ability to oxygenate blood and thus you breathe but don’t produce oxygen. Our little girl was such a trooper. Often too weak to play or even smile, but she tried. She even managed to stand for the first time a few months before her passing. We soon realised that her body was really tired and stopped encouraging any physical development. But still she tried her best. She was such a brave little girl.

One Monday morning I received a phone call from a friend who was covering the paediatric ward to tell me that Ncami had been admitted during the night and that we needed to come urgently. We had left her at the Children’s Home that weekend as we were away in Mozambique to celebrate Christoff’s birthday – and take a much needed breather. I quickly dressed and ran up to the hospital. I took one look at my girl who could hardly recognise me and realised that this was “it”. Our gracious medical manager gave Christoff the day off work and everyone afforded us the time and privacy needed to love our little girl until the end. She had a few flutterings of life throughout the day at which time she would recognise us, smile and ask for juice before slipping way into unconsciousness again. These were special moments that we cherished. Late that night Ncami took her last breath while cradled in both Christoff and my arms as we sat with her in her cot. And just like that she was gone. God was faithful. She had only experienced full cardiac failure for one day instead of weeks or months. Our hearts were aching but we also experienced a form of peace and “knowing” that I had never felt before. It was a holy moment. God was there.

The community rallied around us in the week that followed in a way that I could never have imagined. Flowers, food and prayers streamed in and one dear friend even accompanied me to “the city” to obtain all of the essentials needed for a traditional Zulu funeral. These included a large framed photo, a new dress and a beautiful new blanket in which to wrap her little body. We had the most joyful farewell as we transported our little girl from Mseleni to a homestead in Kosi Bay while beautiful Zulu choruses continued to flow as we drove in convoy with everyone who had been a part of Ncami’s short life. Upon arrival a colourful tent was filled to the brim and we were given the honorary seats as “parents”. But what made my heart rejoice most on that stifling hot day in September was when Ncami’s teenage sister (who hardly knew her) gave her life to the Lord as the Zulu pastor made an altar call. The Lord truly gives and takes away. One life lost and another reborn.

In the days after the funeral life in the bush went back to normal. But we were different people now. We understood something about the Father’s heart that had not been there before. And we did not fear death anymore. Even in death there is joy – the joy of knowing that the arms of love are calling you home.

I felt the Spirit so clearly say that we would love and lose babies again. And I made a promise in my spirit to say yes when that day comes. Not knowing how or where or when. But “yes” to God’s timing and “yes” to God’s invitation.

This is truly a promise worth keeping…

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