The comforting company of cousins

So many have shared with me about the gift of extended family. I live in the same city as my sister and both of our first born children have special needs. While many assumed this would mean that we would be even more of a support to each other, the truth is that we were in such crisis for so many years that we had very little capacity to offer each other anything. When we have the privilege of being away together, the multiple special needs diets, mobility needs and behavioural challenges that we're trying to balance on top of the normal demands of young children adds additional strain. 

But that has recently changed. Our girls are now all a bit older, and they can play together in the most beautiful ways.... they have formed their own little gang.

Sarah-Hope's superb sibling

Even if I had heard it before, it's never quite the same as experiencing it - it is not easy being a sibling of a child with additional needs. But today Libby blew my mind.

It was her idea... she decided we should have a special "Sarah-Hope Day". Just because. She would hand make gifts and cards for her. We would bake something she loves. We would make a sign declaring the occasion. We would do things that Sarah-Hope liked. Just because. 

Libby didn't do it with the hope that we would then 'get the hint' and do one for her. She never mentioned that then or to this day. She just decided to celebrate her sister.

 

I've been much more intentional over the last five years to ensure that Libby gets some separate time with me, Rich, her grannies or special friends. These are times when she can enjoy a greater range of possibilities than exist in our home - sometimes more active play or some dedicated individual attention or a different social connection. I've seen her sense of self develop which has been a gift.

But as the empathetic and compassionate person that she is, she really does delight in being with her sister. She'll make anything fun... like taking over Sarah-Hope's walker (it really isn't for you, Libby!)...

Partake in hypnotherapy...

Nap with her sister...

Play for hours in various imaginary games. I had to laugh recently when the girls were playing 'paralympics'. Libby is usually very accommodating playing dolls and dogs with Sarah-Hope... but in this game she insisted that she was blind, with a guidedog, and Sarah-Hope was her helper that ran with her in order to win a medal! I don't think Sarah-Hope quite knew what to do not getting to be the 'disabled' one but she knew her place in the game that day!

Steady and Fetch - Sarah-Hope's new legs

The year started with us looking into fascia release for Sarah-Hope. One of the wonders of her early years was the natural adaption of her body. One of the scary things going forward into her primary school years is how these adaptive patterns of movement have placed so much pressure on her body and how this can increase physical abnormality if you don't intervene. 

The main problem with her legs is that she has been knee walking and doesn't stand on her feet other than for a quick transfer... her hamstrings had become so contracted that her knees couldn't straighten much more than 90 degrees.

The fascia, sheeth around the muscle, gets knotted and doesn't allow the muscle it's usual freedom. It can be rather painful to release but it is so important for the body - not only Sarah-Hope's legs but her back and neck too with all the bending and reaching they do without having arms to help. 

A new physio had started working with Sarah-Hope in lockdown and trained Richard in this massage since he was now working at home. Every week she was blown away by how Sarah-Hope's body was responding to Richard's massage.  Literally, the angles of her knees were changing!

We also had to try wake up her quads and get them working again...

She also started working with an orthotist to get a full leg brace, with metal hinges made. This would provide fuller support for when she stood in the standing frame. There was also the idea that she may need to wear these at night, or for four hours at a time so that her skin could stretch. 

I have always been resistant to this idea because I couldn't get my head around fighting with Sarah-Hope at night to have braces on when I just want her to sleep peacefully... or strapping her into a stand for hours. To be honest this has come up before - the idea of Sarah-Hope being in full leg braces - and I have probably resisted it the most. 

At the start of lockdown, she was struggling to stand for 10 seconds... and five months later, due to physio input and Richard doing regular fascia release, she started walking!

Here is a video that Richard put together of her progress made from May - September 2020:

Once this incredible milestone was reached, we wanted to make the most of it! Walking for a minute or two inside was easy enough with level ground. But what if Sarah-Hope wanted to walk outside? Given the uneven surfaces and how tiring it would be to build up this capacity, the physio recommended we get a grillo walker to support her. 

It arrived just in time for our December trip to Knysna. Cousins Katie and Nicola were so sweet partaking in this daily walk with us, and even helping get her orthotics off her at the end.

 

Knee races to celebrate Sarah-Hope turning 9 years old

Sarah-Hope knew exactly how she wanted to celebrate her 9th birthday. We were going to play games. Games on our knees! Everyone should have a turn to race Sarah-Hope on her terms...

We had an egg and spoon race, and some relays on the grass at Granny's house. I'm not sure why I was so surprised but Sarah-Hope smashed her able-bodied friends! Her stability on her knees and ability to balance is astounding. She certainly has to practice it everyday, but it still isn't easy!

You go girl!

New diet, new life!

Lockdown played a trick on me. I had actually been on cooking strike for years... truly... all the gut issues had sent me over the edge and far away from the place where I thought about providing a family meal. Sarah-Hope lived on oats, biltong, peas, sweet potato and butternut&carrot squish. And also more oats. 

But with Sarah-Hope's iron having been so low at the start of the year, we realised that the problem wasn't just getting the iron into her body... it was her body's capacity to absorb and use it. 

We decided to go a new route and consulted with an integrative GP. We did an organic amino acid urine test which confirmed that there was more fermenting happening in her gut than actual digesting. Her ability to take in fats in particular was worrying, as this is what would provide a more sustainable source of energy. 

So we started a new diet, with plenty of supplements, with the aim of seeing her gut healed, and food absorbed so that she would once again look like a well nourished child. Although oats and butternut and peas might typically be seen as healthier foods... they weren't for her at this point. Her diet was more 'keto' in the morning, and she was allowed some carbs in the afternoon. 

There was (and still is!) a lot of cooking required. 

Breakfast -  Egg and broccolli / cauliflower / marrows for breakfast (oats twice a week with crushed nuts)

Snack - Sweet potato, animal protein, green veggies

Lunch - Same as snack

Afternoon Snack - rice cakes and avo

Supper - White rice, veggies

Only two fruit a day.  In fact, if she needed a snack and I tried to give her fruit she'd say, "Mom, I'm only allowed two fruit a day and I've had my portion." So no short cuts for me!

Breakfast and Lunch were to be followed by an intake of MCT oil through her stomach tube. We started with 0.5ml and a few months later we were on 7.5ml so there was real improvement in her fat intake and her energy was fantastic! She was lasting a whole morning at school now, and her hair was growing and getting thicker. In fact, Sarah-Hope's diet seemed so revolutionary that Richard is now on it too. 

But the most beautiful thing about this... now that we were actually cooking... and sitting down and eating together... was what this was doing for us as family. Being nutritionally and relationally nurtured is amazing. Have even had it written on my blackboard on my kitchen window...

nurture 

nourish

connect

invest

flourish

 

 

 

Pandemic schooling

During the second term when schools were shut due to lockdown, I took the opportunity to bring Sarah-Hope over to the primary school in town where Libby was. It was definitely going to simplify my life logistically by having Sarah-Hope there although there were losses too (e.g. not a wheelchair accessible campus etc). But the remote learning term gave me a chance to transition Sarah-Hope to a different curriculum which was a gift. 

Apart from any of the three of us devolving into tears at various points in the remote learning phase, it was wonderful to get right into learning without the logistical barriers of accessing school with devices and arranging for support to be put in place. I could see that without all these logistics Sarah-Hope had more brain capacity for the actual academic learning. And I could finally sit and actually read with her and do some homework. 

As it became clear that schools were going to reopen, I had to sit with the sense of dread regarding Sarah-Hope getting sick. She already has existing lung damage so does fall into the category of more vulnerable children in terms of COVID-19 and the thought of her having another physical set back was awful... especially at a time when we were regaining ground in her academics. 

After a comforting consultation with the paediatric pulmonologist, we started school. There were only 10 children in the class and she started school right in the peak of the first wave - everything was masked and  sanitised and you weren't allowed to move from your desk... this suited her perfectly! As with many children, 2020 with no flu season was her healthiest winter ever.

Cape Town Cycle Tour 2020

In 2019, we had signed Sarah-Hope to ride in a Warrior on Wheels buggy for the Cape Town Cycle Tour. There were training rides and buggy fitting sessions and briefings all in preparation. Unfortunately, the weather was wild and the organisers requested those pulling buggies to withdraw, which our team did. Libby had completed her 4km Junior Cycle Tour the week before and Sarah-Hope definitely felt cheated! I sensed that she didn't want to leave her next medal to chance... and that she wanted to use her body to get around the track, even if it meant a much shorter distance! 

And so in 2020 Sarah-Hope did the 1.3km Junior Cycle Tour on Zane and LOVED it! One thing I have learnt about her - she is not one of the children who want to be pulled along by someone else. If she has the energy, she will be out there moving herself!

Here is a picture of Sarah-Hope in her buggy as part of her preparation for the 2019 Cycle Tour (which she didn't participate in after all).

And, of course, the girls created their own buggies for their dolls!