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