2016 chaos

Just the right time to start school

For years I have dreaded the school journey – the research required, the conversations, knowing that you’re challenging the system and pushing people out of their comfort zone. Having engaged and researched so much during the pregnancy, when we still had no diagnosis or certainty that Sarah-Hope would even survive birth, I felt as if I had kind of burnt out from it all! I decided that I would not waste my time reading up about different scenarios, but would rather trust the analysis of the team who were examining my exact and very unique case and do as I was told! I had questioned and challenged the doctors enough and began to relax and trust them. Now that I had a child to look after, I couldn’t spend hours doing research, I needed to engage with her. And I found being present as a parent all consuming. But the journey of navigating social barriers and finding the right educational opportunity for Sarah-Hope was something I needed to really apply myself to as she exited the toddler years. I needed to find strength for this new leg of the journey!

I started 2016 feeling exhausted and knowing I needed more support. At various stages during my parenting journey I would go through cycles of very extended support from my community and paid helpers and then finding the capacity and confidence to manage the girls on my own until that plan necessitated readjusting. Two months before January 2016 we found out that my dad was terminally ill. We knew that doctors couldn’t do anything for him, but did not know how much longer he had left to live. It turned out to be five and a half months. During that time, we pulled together as an extended family, had intentional and important conversations about matters from eternal to financial, spent as much time together as possible, and treasured the time to say goodbye and honour his life while he was with us. With my mom caring for him and then alone and herself needing support for this significant life change, a major pillar of our support system had been shaken. And I knew we needed extra non-family help. This made me enrol my girls at a local school for two mornings a week. A friend had told me about a little Charlotte Mason based school which had started in Gardens the same year and after meeting the teacher I knew I didn’t need to look any further. She didn’t know what to expect from Sarah-Hope, but said “we would love to have her, and appreciate the diversity that she brings”. That was all I needed to hear! With that welcoming attitude, we could figure the rest out! Because of Sarah-Hope’s health challenges in the previous two years, I had been grappling with whether to homeschool but as a teacher friend said to me – as some point you are going to have to take that brave step and leave her side. I decided to send both Libby and Sarah-Hope together to the mixed age group on the same two mornings for the first term. I needed the opportunity to have time to support my folks without the kids around, especially as my dad got more frail. I only stayed a couple of mornings before Sarah-Hope informed me that she wanted me to drop her off like the other children and pick her up at the end of the day. She had worked out that the teachers were there if she needed help and felt quite comfortable with that.

Health hurdles

A couple of months later though, she started feeling ill and separating from her at school was difficult. She had much less energy, she was on her feet less and so whenever movement was required, she would ask to be in the teacher’s arms. Libby would follow suit and want to be held. I contacted her doctor and dietician – and since she was less energetic, had a moderately inflamed gut and only wanting to eat very bland foods (such as oats at every meal), it was suggested that we start tube feeding her Modulen IBD (for Crohn’s diease) to supplement her calories – it was the first time in about 18 months that we used her mic-key button, but thank goodness we had not taken it out! However a few weeks later, another tummy bug had gone through the house and she was flattened. She couldn’t sit, could take minimal fluid / milk through her tube, and after a few days she was admitted to hospital. It was then apparent that she really had lost weight in the previous two months. What proceeded was a difficult few weeks in hospital. Sarah-Hope was an absolute star but was starving and was struggling to absorb even the gentlest formula. We moved to continuous feeding within a few days, but every time we increased it beyond 10ml an hour, she would battle despite what medications were used to assist. About two and a half weeks into the hospital stay, she had a scope and a line put in for IV feeds for 10 days. We let her eat low residue foods orally should she desire. She ate the hospital out of gem squash, often up to 9 egg whites a day from the hospital cafe and some good portions of plain mince and fish. She was discharged when her condition got to a place where we could manage at home but we had no real insight as to what had caused her decline or plan for the way forward.

The dietician and surgeon referred us to a paediatric gastroenterologist who they had worked with at another hospital who had recently started a private practice. Sarah-Hope was admitted for testing for a further two days. The specialist’s sense was that the gut issues are caused by the cow’s milk allergy associated with her underlying condition, TAR Syndrome, even though no test results have ever proven that. And so a strict milk-free diet was recommended, along with tube feeding with Neocate Junior for 12-18 months with pegicol sachets twice a day to help with constipation (as evidence of this was also found in X-rays), L-glutamine and L-arginine for gut healing and Losec daily to help with reflux. I was extremely nervous to start tube feeding her again because of how time consuming it is, but starting with quantities of 30ml, we worked it up to two bottles of 180ml per day over some weeks.

Mobility challenges and implications for schooling

Sarah-Hope’s appetite and eating were up, but she struggled to get back on her feet after hospital. The paediatrician was concerned about the appearance of her legs and knees in particular and after some X-rays and a trip to the orthopaedic surgeon and physio, it was confirmed that although genuine weakness after the extended hospital stay was the reason she could not walk initially, there was always global knee instability. It did not look like we were going to see her walk much without an intervention. Night braces were prescribed and made. It’s interesting to reflect – about a year before, a physio had said to me she thought a particular method of plastering and bracing could help with Sarah-Hope’s legs and feet. When I googled it, I was horrified and couldn’t imagine having to watch my child struggle like that. Suddenly a year later, we’re in a position that unless we intervene, Sarah-Hope might not walk. And so I quickly became ready for braces. Amazing how you have the grace for a situation when you really and only when you need it! However, in our favour is the fact that Sarah-Hope does not have arms. And so if you put braces on her legs she really loses most function and independence. Aware of this, the doctors are conservative. And so wearing braces at night only was prescribed. And we managed it for two months until our follow up appointment.

When we went back for a check up, the orthopod was impressed at Sarah-Hope’s ability to walk again. He hadn’t said it to me at the time, but he had assumed that she wouldn’t be able to walk unless she was wearing braces to help keep her legs in better alignment. This was encouraging. Sarah-Hope seemed to be getting more energy from her diet and was getting stronger on her legs again. And just to prove it – without indicating any interest in it before, on the last day of her third school term, she climbed up the ladder and onto the top of the jungle gym all by herself. Had obviously been watching her school mates do this all year and working out how she was going to do it!

At the beginning of that term, however, despite missing being at school so much, she did not want to attend. She said the boys are wild and she can’t move out of the way when they run around. Now, just to clarify, the class of 12 children has at most three boys who are totally fabulous but obviously provide a bit of boy energy in what is a very spacious and relatively calm class environment. And yet, just that added uncertainty about somebody moving close to her made her nervous given that she may not be able to get out the way fast enough. This made me really question myself – everything in me felt that a rich curriculum in a mainstream environment was what I should expose her to – but after this physical setback it appeared as though I was totally underestimating how intimidating it was for her to be in an environment as someone less able to protect herself. Around that time I got a call from Vista Nova who had her on the waiting list for assessment asking me if we were still interested in being part of the application process. The Red Cross Developmental Clinic had referred her to Vista Nova, so we had that option to consider. I hadn’t been ready to engage with it at all, but given the timing of the call I said that I was definitely interested – I knew I had to really learn from those who accommodate the mobility-challenged as this was becoming more of a reality for us.

Unfortunately, the weekend before the week-long assessment at Vista Nova at the end of October, another tummy bug had gone through the house, and Sarah-Hope was ill again. Struggling with pain and nausea, retching, vomiting and diarrhea, her mobility declined, she fought against me putting any milk in her knowing she would be sore and unwell. It was a struggle to get her through the assessment, just because she was so obviously unwell. Fortunately the school were so understanding and accommodating and allowed me to be with her for the first three mornings. This allowed me to keep up with the tiny tube feeds that give her enough energy without making her too ill, be able to protect her in the classroom and playground from others as she was hardly able to walk or move herself, and help her feel comfortable with the environment before I had to leave her for an assessment without me. It was here that we were advised to investigate a motorised wheelchair for Sarah-Hope. This was Sarah-Hope’s first year in a school environment, and while a year before I thought we needed to be aiming simply to adapt her environment for her to perform tasks, the extent of the health setbacks and the impact on mobility meant that the reality of a wheelchair for school was getting closer - to take the burden of transport off her body, to preserve what she can do for the independence and function that is most important to her, and to give her independence. And so, after much consultation regarding the wheelchair specifications with OTs, physios and other experts, a pink motorised wheelchair was ordered to arrive in 2017.

But that is not all that she needs. Sarah-Hope is not wheelchair bound, thankfully. She will come out of her chair and sit with other children on the floor or at a desk – in fact she should be in the position that will most enable her to participate. Being on the floor means that she can use her feet to help reach certain items, for instance. And so flexibility is required. But as much as one can explore different ways of doing things, there is also the reality of a time constrained life that one with a disability and health challenges has. At one point Sarah-Hope asked me if the lady who was helping us at home could come to school with her. While we had wanted Sarah-Hope to learn to be “one of the children in the class, wait her turn etc”, she has less quantity of play experience simply because of her physical difficulties. I thought this was a good idea because the helper could continue with the small tube milk feeds during school hours, help her with toileting, as well as add a layer of protection in the classroom / playground. This seemed to go well. Sarah-Hope told me that she had put on something from the dress-up box – not being able to dress herself fully, this was obviously one of the things that she watched other children do all year but never really got around to herself. The teacher commented that Sarah-Hope seemed to be more comfortable in the class when she had the additional support. A couple of years ago, an OT friend of mine said the best way to start in school is without help, and then to add in the support that is actually required. I suppose this is what has happened this year without that being planned. And for that I am grateful.

And so, for the school journey ahead, I assume that a wheelchair and facilitator will be required. I do think there should be times when a facilitator is not around for her – those skills of thinking ahead and fending for herself are also important to gain once a level of confidence is reached. But this reality, although not being what I might have imagined a year or two ago at all, is settling in, and at least giving us some constraints to work with on the journey ahead.

Sibling strain in the context of ill health

At the start of the year, I felt comforted by the fact that Sarah-Hope and Libby were at school together. They play beautifully and so I knew they could play together there, as they were settling and getting to know the environment and people. During the month that Sarah-Hope was in hospital, Libby attended school most mornings. This helped us with logistics as I could drop her off, go to hospital to relieve Rich who spent most of the nights there and have a quick check in with him before he left to pick up Libby and look after her for the rest of the day. Libby didn’t argue for a moment – she was an absolute star and totally understood why she was going to school most mornings during this period. We also heard from the teacher that she was now for the first time actually engaging with other children at school, moving more, and flourishing in a way that she didn’t when Sarah-Hope was around. It was sobering. The months after Sarah-Hope came back from hospital were tough. Libby had had enough of holding it together and threw tantrums galore... for months. She really wanted to get some special attention – and given that Sarah-Hope had been in hospital for weeks and during this same year her father was admitted to hospital 9 times, she felt she was missing out. “Mommy, when can I have an operation?” she asked? During the second term I was planning on sending Sarah-Hope to school one morning on her own in addition to the two mornings with Libby. I wanted to use that morning to give Libby some individual attention which I have never really done other than in her first few months of life. But Sarah-Hope fell ill and so we didn’t manage more than a couple of mornings alone. One week she got bronchitis and I stayed home with her while Rich stayed on with Sarah-Hope at the hospital. She loved being home with me on her own. But I also didn’t want her to think that the attention you get from being unwell is that which should be sought after. On another occasion, I took her to the GP to be checked out. Apart from some pain meds to manage a minor temperature, she was given the clear and I said to her, “Libby, are you well enough to come on a special outing with mom?” She said she was. And we had a wonderful morning together. So I’ve tried to show her that she should never wish sickness on herself, as it is much more fun to be strong enough to go out for a special date than going between doctors,  therapists, pharmacies and hospitals. One of the hardest things to see with the chaotic health year we’ve had was the impact on Libby – obviously emotionally as she had to be shipped off to babysitters often but also the impact of an energy and mobility constrained family – she began facing challenges in her gross motor development simply because she is a highly visual learner and copies her sister’s movement patterns. Even her teachers reported that she worked very close to her body, as if she didn’t have the reach that her long arms provided her – which we assume is because she copies the way that Sarah-Hope works. She might take an item off the table using her mouth, catch a ball with her feet, not climb or swing on a jungle gym – but the more time she spent away from Sarah-Hope this improved. And so although I felt their relationship was beautiful and was so touched by Libby’s empathy and ability to play on her sister’s physical level, my heart broke at seeing this healthy and fully-bodied child so unexposed to and growing in age appropriate ways. I mentioned this to a friend of mine, saying how the school journey had been a good support because I appreciated that another adult in Libby’s life had actually noticed that she could barely kick and catch a ball (not like much of that happens in our house!) and I was finding this difficult. My friend reminded me that Libby is growing up in a very unique situation whereby she is developing such understanding and compassion for others – and that she would gladly trade the ball skills of her boys for those character qualities! So for all our lack of getting to teach Libby how to swim, ride a bike or even swing on monkey bars... we have to appreciate that she also has a very unique set of challenges. And that her emotional resilience and other aspects of development are also subject to the constraints of our household, as well as the riches. What I had found challenging at home was that whenever Sarah-Hope wasn’t well and needing more holding and picking up – Libby wanted the same physical attention. And there was so much screaming from Sarah-Hope being unwell, and then Libby screaming for attention, that just for my sanity I picked up and carried those girls again and again. I am certain that Libby would have far greater walking stamina without these months-long periods of illness and recovery in which mobility was really impaired – and most certainly if I had fought it but I didn’t. I also found that Libby wanted help in the same way that Sarah-Hope needed it. Libby would marvel that her three year old friends were putting on their own socks! When she felt loved and adored, she was happy to help and do things for herself – but when she wasn’t getting that sort of attention, she would refuse to walk / feed herself / dress / help around the house etc. It was exhausting. Because the year was one in which Richard and Sarah-Hope were very physically weak, we needed to give them plenty of support and time to recover. But I also wanted home to be a place where Libby could find generous support, a place where it would ok to ask for and receive help. I didn’t have the energy to explain to her that she needed to help me around the house while her father and sister literally were lying on the couch week after week! When playing with a friend of mine recently, she suddenly shouted at Sarah-Hope, “I’m not a grown up! I am still little!”, and another time she said to me “Why are you making me go to school all these days, I’m exhausted and I cannot do that right now!” And at other times she would simply regress into an 8 month old and crawl, bump into things and babble.

Sarah-Hope took months to recover, and I didn’t know whether to just relax into these stretches or try discipline my kids to stop the moaning. I didn’t know whether I had really taken the time to love Libby and see her before coming down on her behaviour and disciplining her. I was just confused. At the same time, although Richard was supposed to have healed from his operation earlier in the year, it became apparent after 4 months that it had not been successful. He had started a new job but was regularly taking time off to go to hospital and still had another two operations that year. I knew I couldn’t ask him for any help – he was barely managing to get by every day and had to apply himself in his new work space. I had no confidence in Sarah-Hope’s health either. I became anxious – unsure who would be in hospital next and felt powerless to plan or do anything that was important to me.

Holding on but ending the year well

I went to see my pastoral counsellor and told her that I thought I should do a redemption group (intense Bible study journey in a small group community) study on powerlessness! She told me that she would not allow me to do it unless I got more assistance at home and started exercising again. I organised this within 24 hours. Every day I would try leave home, do something that was kind to my body, read the Bible and pray. Just having some space from home and the opportunity to do something that would assist my future capacity to deal with it, helped me move forward. I went for a couple of massages, lynotherapy, pilates, swims, walks and even a few runs in the next months. Clearly I had forgotten how wonderful endorphins are! And by the end of the year I felt better than I had a year ago.

We went away for our first Christmas holiday in Knysna without Oupa around. It was a tender time, scattering ashes in the Knysna lagoon off my dad’s beloved and legendary boat, Vlertjies, and experiencing his absence in the spaces and relationships that he had built over decades. Amazingly, we were all in good health and able to enjoy the place he loved which felt like an appropriate way to honour him, which we will continue to do.