Settling realities that will require everyday effort in 2019

Sarah-Hope has not had a bad year health wise but she definitely has not had the capacity for the full school week. On a good week, she spent one to two days at home resting. Her body has to work hard to keep up with the school routine so it makes sense that she is more tired than others. But because her immune system isn't the strongest, she also takes a longer time to recover when she does get sick. Knowing we were going to have to see how she managed keeping up at school, we had a flexible arrangement whereby her facilitator could come and bring some school work to her at home on days where she was strong enough to do some "work" but not at school. This was great because she wasn't so disconnected from what had been happening in class and when she did get back to school she could catch up quite quickly. Sarah-Hope's development is never linear - even if she is resting or ill she takes in a lot and processes her world and then bounces back as if she's been practicing in her mind while she didn't have the physical capacity to act it out. Something I have learnt is that if Sarah-Hope is well, she wants to move independently, participate and engage with friends. Its always a flag for me if her attitude towards this changes - she may just need rest, and if she doesn't get it she is likely to get sick in which case we need to patiently build her up from dependence to more interdependence again. I have become a bit of a "rest policewoman" as a result but it just is the reality of our capacity and after all we've been through, I am so used to plans being cancelled that I go into autopilot and reprioritise the day or week or month ahead. I actually see this as a gift that I have to often take the foot off the accelerator, slow down and think again about what to prioritise in order for the whole family to flourish.

Sarah-Hope wasn't hospitalised this year, and had no gut trouble at all. In fact, she has been drinking and eating orally with no nutrition supplemented through her stomach tube and has grown well. She still has her mic-key button which I keep as a back up and for medicine (makes it so easy!). She still avoids dairy (severe milk protein allergy suspected) and gluten (precautionary) and eats a simple diet but has a great appetite. Sarah-Hope has been more constrained by her chest, however. She had very undersized lungs in utero which contributed to her having such a poor prognosis. But her lungs have grown! Upon assessment recently by a paediatric pulmonologist, she was happy with her lung function for a seven year old. However, she wasn't as happy with her air flow. Sarah-Hope underwent a scope to see if her anatomy was perhaps contributing to this. Her left pulmonary artery appeared to be constrained and although there isn't obstruction as such, it is possible that the clip used to repair her heart as an infant is now obscuring the artery. So we're experimenting with a change in chronic medication, using the bronchovibe every morning and evening and a longer term antibiotic with anti-inflammatory properties to see if her lung health improves and her breathlessness and recovery times reduce.

The most significant challenge this year for Sarah-Hope has probably been decreasing mobility. From the triumphant walk across the playground the day before school started... we found that months later she was struggling to stand and put weight on her one leg and walking was not possible on her feet. A family friend who is a physio gave me a perspective about the way she has adapted for functional purposes which I found quite helpful - she has become accustomed to using her one leg as a lower limb, and the other as an upper limb. One leg she can stand on. This is what enables her standing transfers - her weight is all on one leg and she puts out her toe of the other foot to balance. The other leg is her upper limb. Her ligaments are hyper flexible which is amazing because is allows for the passing of goods from the ground where her foot is to her opposite hand which is where her shoulder would be. However, with this repeated movement, her femur actually "slips over" her lower limb bones  given that she doesn't have a stable knee joint. Its a helpful reach function for her - but the impact of that repeated movement on her limbs isn't great for the standing / transferring / walking function.

So what is transpiring is that (when we execute this as we should) she has been walking on her knees, covered by knee protectors (super flexible skater knee pads), and uses her wheelchair for transport where there is wheelchair accessibility (school, church etc). 

 

In our home, we've been trying to create more floor space so that a wheelchair could be used. However our living space is small and so Sarah-Hope is not covering large distances inside so would prefer to walk on her knees rather than move the chair through the space. We've recently adapted a ride on toy for her to wheel herself across a floor space at home or elsewhere to try keep her off her knees and protect them. Its much lighter and could be taken easier to another home whereas the wheelchair is heavy and needs space and ramps into other spaces because it is around 70kg. This is still a work in progress.

 

What has been difficult though is to see the toughening up of her knees as they effectively become like another 'heel', multiple skin layers rubbing off through the pressure of carrying her weight and her knees raw. We've wondered about plasters but the way her knees work as both feet, knees and elbows, no plasters stick, and then she resists them at the thought of the pain of removing them. And what I've discovered this December holiday is that it takes one thorn in the wrong foot or sting on a leg to collapse her as she really can only stand on one leg which makes her quite vulnerable to immobility. The plan for the year ahead is to get a full assessment of her knees. We think the knee cap is missing or displaced but there could be a lot more 'wrong' as well. So we're hoping for clarity (it will probably take an MRI as this kid has some funky anatomy!), after which we can figure out the best way to help her stand and make transfers.

 

What was really encouraging was hearing how Sarah-Hope was participating in the classroom, basically on par academically with her peers. Before the  end of her first term the team felt confident that she would be progressing to Grade 1 in 2019. Her written expression of her knowledge is obviously not the same and in time we expect technology to play a more significant role in helping her - but not until she's tried what everyone else is doing first! Then as she is struggling to keep up we predict she will be increasingly ready to adopt the assistive devices or whatever the solution may be. I imagine this will be the big challenge of the foundation phase. For the first time she made a comment to me at the end of the year saying, "Mom, the other children are MUCH better at drawing than me, MUCH better. Its not fair." I know she feels valued and supported, but amazingly I am usually surprised when I hear her vocalise this kind of disappointment at her "work" not looking like that of others. I imagine Primary School will give us many opportunities to process these emotions, and then to regather ourselves and focus and delight in what she can do.

What has been significant about this year is the shift from one hospital crisis to the next... to the reality of the main issues that we have to deal with, and the unavoidable everyday workload that will be required to push through and make progress in these areas. This next phase is going to take us on a whole new journey of growth, of that I am sure!

Fun with friends and family

Let me not forget to include some beautiful moments of refreshing fun with friends! We are so fortunate to have strong relationships around us, what joy!

School - Paving a way for greater socialisation

To start a school journey knowing you have the full support from the institution is just amazing. I have really appreciated teaming together with the staff as we learn how to support Sarah-Hope in this new phase of life. Grade R is a lovely age to be integrated into a bigger school as the children's curiosity is still high and their level of self control is better than the earlier years. On Sarah-Hope's first day at school there were a whole lot of questions from her classmates and on that day she elected that her teacher should explain why she has little arms etc (I have heard her answer this question herself although I did it a lot in the early years). Fortunately in Sarah-Hope's case, the link between her visible arm disability and her adaptive use of her lower limbs is often made quite quickly. Even if it is very unusual to see someone using their feet for 'clapping' and other basic arm functions, when you spend time with Sarah-Hope you quickly realise why she is doing that, often followed by a sense of awe in terms of how she is using her body and how your own probably wouldn't manage doing the same.

Knowing that most of us South Africans have little exposure to people with disabilities, we had planned for Nicky Abdinor, a psychologist and inspirational speaker who was born with no arms and shortened legs, to visit the Grade R class and share her story a few weeks into the first term. The idea was to expose the children to a role model who has significant physical difficulties and yet is doing so much with her life. It was so amusing to see the Grade Rs engage. Perhaps Sarah-Hope had settled in so well they had already forgotten their differently-abled classmate because the way they responded to Nicky you could have sworn they had never seen anyone with limb differences before! The questions were endless - "but how do you brush your teeth? and put on your shoes?" I found it fascinating how they quickly accepted their classmate but when processing an adult who uses their body differently to drive, send text messages on her mobile phone, email on her computer and do real life they were truly astounded! As I arrived at the school for the talk one of Sarah-Hope's friends ran up to me saying that Sarah-Hope is so lucky to have hands as Nicky doesn't have any - so true! Nicky and her mom have told me what an advantage those little hands are. And lying in bed with Sarah-Hope the other night, she was talking to me about her hands and how useful her middle two fingers are to her in particular. "They help me a lot," she said.

After that visit, we realised that it would be wonderful for Nicky to visit Pinelands North Primary School as Sarah-Hope would be progressing to Grade 1 there in 2019 and she was already going onto their campus to the hall or library so many older kids were seeing her whizzing about in her wheelchair but without the same sense of her story. Nicky came and addressed the school during assembly in the third term and shared her stories and messages of inspiration. The children were captivated. Sarah-Hope hadn't been in that assembly but mentioned to her facilitator later that week her confusion as to why so many people were saying hello to her because she had no idea who they were. But she still has had to learn to be friendly in return and polite when people have tried to engage with her and help her, especially if she doesn't want or need the assistance! Sarah-Hope's teacher mentioned this to me - how children were engaging and making an effort and she wasn't really responding. I believe this has improved over the year as she has felt increasingly part of the class, which is great. But what is greater is that Sarah-Hope used to be terrified of people. With an intense medical infancy and more needles stuck into her than we'd like to remember, she would always view a new person suspiciously and wonder what they were going to do to her. So the fact that she is becoming friendly from that baseline is amazing. As a baby she would look serious, like a wise owl. Now she is obviously lively and eager to engage with the people and world around her. So her social development has progressed as she's being exposed to a world much bigger than a hospital and therapy session. I'm so grateful.

Mobility has been a challenge this year (more on this in the next post) and it has had an impact on her relating at school. Grade R is still filled with a lot of outdoor play and more movement than one would expect at the Grade 1 level. Kids move outside and then in a split second may decide to run to the jungle gym or swings and leave her behind - not intentionally though, that's just how 5 and 6 year olds operate. She started figuring out that the staff supervising the playground were the most likely to be stationary and so would gravitate towards them to sit and watch the children, both because she could rely on them being in the same position but also because she could rest a bit and watch kids which she enjoyed. Her teacher realised this was not going to be a helpful pattern for Grade one though as kids disperse throughout the school in break time and she wasn't going to have the comfort of proximity to teachers for company. And so she was challenged to go out and play in her breaktime, after asking a fellow classmate for help with her lunchbox. In the end she found herself a safe space - the sandpit. Close to where the teachers were located and the door back into the classroom so she didn't have to travel far, and also a place where she could play by herself happily and welcome others into if they chose to come and play there. This is something I've been talking to her about - that although she is used to being accommodated for, there are many other children who also need to reached out to and included and she should use her strengths for this too. It will be interesting to see how she navigates the primary school playground at break time both physically and socially.

Let's adapt a bike for Sarah-Hope!

After the Cape Town Cycle Tour, Sarah-Hope was adamant she wanted to ride a bike, not just a wheelchair. We solicited some help from the amazing BMC in Woodstock and they helped us to adapt a bike for her using pool noodles to extend the handlebars.

Sarah-Hope's physio, Kirsty, helping Sarah-Hope get going! So good for her to extend those legs...

 

As time has gone on, Sarah-Hope doesn't ride much. Even with training wheels, she is quite vulnerable to falling on a regular bike. A trike could work in terms of providing extra stability, and she could definitely benefit from electric wheels to power her along if she tires. But the problem is that it then becomes a heavy bike and one that she can't manage easily by herself which reduces it as an experience of independence. 

It will be an serious investment to make the right bike for her one day - so we're likely to wait until she's fully grown and then take it from there!

 

Warrior on Wheels adventures

What an amazing organisation we found in Warrior on Wheels (see https://warrioronwheels.co.za/). Deidre Gower, who founded the organisation, has brilliantly worked to use the Cape Town adventure opportunities usually enjoyed by tourists to encourage accessibility and special events such that families such as ours can enjoy them.

Wonderful adventures are organised for the warriors... the kinds of opportunities that we would never have the energy to arrange for our children given our circumstances! And they would be laid on... sponsored, organised, with a whole community of families with similar struggles.

It was through Warriors on Wheels which Sarah-Hope had her first ride on a horse in 2016, which was an transformative experience at a time when she started to lose her mobility. You do need some specialist assistance when riding with physical differences so it was amazing to have this first opportunity arranged.

Sometimes an adventure would come up that could include the whole family - one of these was an absolute blast of a sidecar adventure around the peninsula! 

 

And the other special one to note was the introduction to the Cape Town Cycle Tour. I really would not have picked up that there was a Junior Cycle Tour for kids but through Warriors on Wheels and all the special arrangements that were made for us, we got to join in with such ease.

Sarah-Hope was as determined as ever. She rode her wheelchair with proper focus with Rich as her co-pilot. I had the joy of accompanying Libby - to see the sheer joy on her face taking part in the event was just beautiful. I am so grateful to Warriors on Wheels... not only for what they've done for Sarah-Hope, but for what they've done for Libby as well.

"I like your wheelchair!" & thoughts about accepting assistive devices

We were celebrating! We had the wheelchair parked at school for the whole of the first term... and then one day... she rode it and owned it! I admit there may have been some bribery involved (pink lunchbox like her friend, Gia), but at least she never looked back.

Redd Tedd was so excited about the wheelchair that he came home with Sarah-Hope for the weekend! And that happened to be a weekend when we were going camping in the Cedarberg for a friend's 40th. 

We drove in the bus to the Cedarberg and took the wheelchair with. The ground was firm enough there for Sarah-Hope to drive around the campsite a bit with the wheelchair which was great. We had a mobile ramp so also managed to put that down over a little canal so Sarah-Hope could make her way between our site and the next door one.

Kids were running around, some on bikes. A beautiful moment stayed with me when my friend's son, Charlie, came over. This was their simple and beautiful exchange:

Charlie: I like your wheelchair.

Sarah-Hope: I like your bike. 

What I love about young children is that they can see the clear benefit of getting to drive yourself around in a wheelchair. In fact, they want a turn themselves! Sarah-Hope is the lucky one who gets to drive AND who even has a little hooter. But what a lovely problem to have - when people are wanting to be around it.

Adults usually have an automatically sad association with the wheelchair. I can understand this - they can sense the loss it represents. 

I'm always thinking about how these assistive devices are interpreted in the world around Sarah-Hope's world. My hope would be that they promote discussion and inclusion. 

Sarah-Hope's Grade R Teacher, Pam Berry, had an idea about a tablet that Sarah-Hope would start using occasionally in class. She could invite a friend to join in with her by doing an activity on the tablet. That way, the potential for the tablet to separate Sarah-Hope from the class was reduced. This idea has been an important one in designing Sarah-Hope's support going forward in life.

Where does my help come from?

It was so interesting to see Sarah-Hope engage with a new school environment. She was so excited. In her pretend play in the months before, she had been talking about facilitators. She had been driving the wheelchair around on holiday at speed and with joy. And then as a six year old she suddenly enters a new space with new children around her along with a fresh sense of wanting to be one of them. She wants to do things on her own and not need the help of her facilitator. She wants to walk to the hall by herself like the others and not go in a wheelchair. Even if it meant walking on her knees the whole way there and back, a couple of times a day!

 

 

The school mentioned to me that they were chatting to her about it, that the wheelchair and facilitator are part of her story. And she also began to realize, I think, that she couldn't keep up with the other kids. A hard one, but regular part of the grief cycle, acknowledging her losses. But then that resolved. (see the next post on celebrating about the wheelchair).

 

She also had to make the adjustment from the teacher assisting her (which had been the case in the previous little school) to asking her facilitator to do so. I had the same battle at home - I occasionally had someone at home, I would request that she ask them rather than me to take her to the toilet or get something that was out of reach for her. In my mind she had to realize that she needed to accept the assistance that was provided for her - as she wouldn't always be in a position to choose this in her life. And it was important for her to exercise the muscle of asking for help from anyone around her in a way that made them comfortable assisting, even if they were strangers. This ability would help her navigate institutions and unpredictable events. And she improved - from reliance on her teacher only, to including her facilitator and then also friends later in the year. 

 

 

One afternoon we were getting our things together to go for a swim. People usually feel uneasy watching me carry my kids (Sarah-Hope as she needs to be carried, and Libby as she wants to get the same assistance as her sister), as well as their stuff. But because I have often needed to figure out how to get through these logistical challenges on my own, I don't ask for help until I really need it. So one day Sarah-Hope says to me, 'why don't you accept help when people offer'? What a question! And I realized how important it is to model those things which you want your children to catch. Yes, she needs help. But so do I.

As I've pondered much in the last few years, I have come to believe that long term living in interdependent community is the only sustainable solution. Every person deserves to be supported, and have the privilege of strengthening others. Working out what load we should carry on our own, and what we should shoulder with others is one of wise discernment and in my family it changes frequently depending on health levels in particular... and then boundaries have to be reestablished in terms of who does what and how we ask for and receive support. It is not always clear cut. And so because of the amount of support I've needed since becoming a mum, I've wanted to reserve it until I really do need it. My asking for support shouldn't be driven by the immediate response others have when they see me in a given situation. Although sometimes participation in each other's stories can mean sharing not out of desperate necessity but out of the joy of being and doing something together. 

May I model dependence on the Lord's help by receiving and requesting support regularly - and being the Lord's help to others as often, even if its a simple genuine question asked about how someone is or knowing embrace offered with no other words. And may Sarah-Hope know the Lord supporting her through many - and the strength that she can offer to others as well.

Starting at Red Roots Preprimary School

The school kindly allowed us to have some time at the school grounds the day before it opened. I know Sarah-Hope needs unhurried time to work out how to get around the class and playground and that this would help her confidence when there were 40 kids running around. I left her with her facilitator, Laura,  to enjoy some time there and popped out to buy her some tackies which are part of the school uniform. When I arrived back, we tried on the shoes and thankfully they fit. She put them on, and now buoyed by a new level of support from beneath and the excitement of this school community she was going to be a part of, she stood up and walked! And not just a few steps, but again and again. You could tell this was physically demanding work – she was panting away as this is no longer a regular workout for her. She was also having to get used to stamping her feet down on the ground to manage the weight of the shoes and the putting her weight through her feet instead of having them free as extra hands. 

All this hard work required a few breaks in this position... and then back on with the mission.

And so, school has begun! And the first few days have gone well. She is understandably cautious about moving around in a new and busy environment but is absorbing what is going on and working things out in her mind for now. 

But she is ready for the challenge. She actually had to exercise a lot of patience this week recognising that some of the other children may need a few days to settle before the full programme could begin! And I am so grateful. For the grace received to get to this moment. And that which we can depend on for whatever is ahead.