love+life.....

a story of strength

You know when you have a child, or know a person that is ONE OF A KIND? Someone who is unconditionally faithful, loyal, loving, caring, astute and OHMYGOD – STRONG, yet humble, quiet, confused and odd? No?

I do.

Mackenzie.

I have written about Mackenzie before, but have really skimmed over her. In fact, I do that often – skim over her. I shouldn’t. Honestly – many people skim over her. She can be so frustrating, so worrying, so ‘under the radar’. So many unfathomable things. So ODD.

No birthday parties. No play dates. No special friends (up until this year).

Man – people are missing out.

Yes. The girl is ODD. We have finally found out why. I shall get to that.

She is also loving, awesome, incredibly intelligent (given the time), a problem solver, a food lover, a gardener, a scientist, and an all round incredibly strong and resilient young lady. One of a kind.

Let’s pause, and reflect.

Born with congenital heart disease (a VSD – hole in her heart), a coarctation of her aorta (requiring ballooning open at 8 months), and a few other little heart oddities – not to mention her hypertension – which will be lifelong – and is managed with daily medication. Numerous ‘grommet insertions’. Open heart surgery six years ago to mend her hole and her hypertrophied heart muscle. Numerous illnesses. A now quite prominent developmental delay, making socialisation REALLY tough. A very very S L O W processing speed, making schooling and friend making REALLY tough. Intense panic attacks and generalised anxiety disorder., making life a little tougher than it could be.

All of this has its plus side though – she is resilient. She is full of empathy. She is kind, caring and mostly patient. She is certainly one of a kind.

We really have been muddling our way through – wondering what we could have done, should have done. Wondering WHY? She’s not autistic, nor is she anywhere on ‘the spectrum’. She just didn’t fit into any box.

In the meantime – Mackenzie just kept motoring along. Overcoming EVERY obstacle put in front of her. Not with ease – anything but. Thankfully we have a village around us. Her medical and allied health team = fabulous.

She took six years to find a friend at school. SIX years. Imagine going through six years of coping at school without someone special. Six years of just being there. Six years with possibly enough playdates and birthday parties to count on two hands. Imagine our despair and fears when we uprooted her to a new school last year. Such a tough decision – one that we had no choice in making. I must say though – whilst she has struggled IMMENSELY – she has again shown amazing resilience. Oh – and for the VERY first time in her seven years of schooling, we have three mates coming over next week for a play date after school. I KNOW! (insert tears). NOTE – this was last year – a week before the end of the school year!

Why is she odd?

Finally we have an answer.

Segmental NF1 (neurofibromatosis).

It’s fairly rare. It has taken the year to diagnose. All because of a little thing called ‘my freckle farm’. A patch of freckles on Mackenzie’s torso that has grown, and we never really put much thought into. It appears that these freckles, and her cafe au lait (large coffee coloured, birthmark-like spot), are indicative of NF1.

NF is a neuro-genetic condition, caused by a mistake in a gene, affecting mainly the nervous system and the skin. It can be generalised (all over the body), or segmental. Early signs of NF1 are cafe au lait spots, freckles in unusual places and neurofibromas (lumps and bumps) on the skin. Mild learning difficulties are common in NF1 (BINGO! – that explains why Mackenzie struggles with her schooling and processing). It also may explain Mackenzie’s hypertension, her propensity for migraines (UGH). Thankfully (as far as we know) her eyes have been spared from optic gliomas – small tumors on the nerves behind her eyes. Segmental NF1 occurs due to a process known as mosaicism, whereby some of her cells are normal, and some have the gene change. She got unlucky (or lucky – as the case may be). She is undergoing genetic testing (as will we), and as she gets to child-bearing age (!) she will require genetic counselling. She will continue to be monitored – as the development of tutors needs to be caught early (if they even develop).

Thankfully The Royal Children’s Hospital has an NF1 Clinic – we will become regulars – and there is plenty of support. Lots of educational/psych. testing to ensure she is on the path to success.

(Note – I started this post a while ago, and we have since had an update…..) It appears that Kenz’ genes are even ’more odd’, and she has a duplication of a part of a chromosome. This is a known pre-cursor to learning and developmental difficulties – so really, Kenz has a bit of a double whammy.

So yes – whilst there are many other children who have dealt with much worse – this is OUR girl. We now know WHY she is the way she is.

It doesn’t make it any easier. How do you explain to a 12 year old, who (at that particular time), cannot be reasoned with, that she is behaving younger than her youngest sister. Sometimes, it appears that our household has two 6 year olds in it – one of which is galloping ahead of the other. How do you reason with a 12 year old, who has a six year old (or younger) understanding of some things? How?

How do you pacify a 12 year old who is in the middle of a gripping anxiety attack, curled up in the foetal position on the floor because she physically and mentally CAN NOT manage go to school? How do you understand the reason? How does she understand the reason. How do you watch your 12 year old not get invited to a single birthday party FOR THE ENTIRE YEAR? For every single year of her schooling? I can count on two hands, the amount of birthday parties she has been to…..

“She is used to it”. I said that to someone recently, and then realised what I had said. What a pity I even had to say it.

How?

You surround her with love. It takes patience – something I do not have a whole lot of. Yes – there have been times where I have snapped – annoyed at her immaturity, frustrated by her inability to function, incensed by her apparent lack of common sense. Then, when the air has cooled, and we have all had a big cry taken a deep breath, we sit together and rationally (and slowly) discuss ‘the incident’, alleviating the immediate crisis, but never quite ensuring a repeat incident doesn’t happen. She lives on the precarious edge of settled, and it takes not much to tip her into anxiety. We (her medical team and us) have felt that medication is not right for Kenz at this time. We continue to support her, and teach her methods of self-awareness and rationale. Thankfully – it keeps the black dog at bay. For now.

Last year, she managed to very gently (and slowly) make some tentative friendships. Her teacher and support staff are making inroads. For me (and her) – last year (2016) was about socialising and decreasing anxiety levels. The learning will come later – after all – how can you learn and concentrate, when you are fraught with anxiety and working hard just to ‘be normal’. That’s what she does, everyday – works so so hard at school in order to keep up. To do the right thing. To listen. To do her school work – which is already hard because she just cannot process information fast enough.

She is a fighter.

She keeps on keeping on. We advocate for her as much as we can – but can only do so much. Her sisters are understanding. They too become frustrated, and more often than not, it is akin to living with at least four little volcanoes – bubbling, ready to erupt. BUT – underneath the bubbling, there is a strong bond, unbreakable – made of love, yet sorely tested.

We have worked hard to nurture her love of the environment this year. She has started a garden, and provided her family and friends with produce. She is learning by doing what she loves. She is co-Sustainability Leader for the 2017 school year, and is THRILLED! Her love and appreciation for the environment surrounding her, and the animals and people within, knows no bounds.

I am so incredibly proud of her.

She never wants for anything – except love, and loves unconditionally in return.

We have a long way to go, but I have absolutely no doubt that she will shine.

Why do I write this now? I felt the need. I have been hanging onto this post for a long time – have written and re-written in my head multiple times. Maybe someone else ‘out there’ has a kid like Kenz (lucky them). Maybe someone hasn’t, and would like her (JUST KIDDING!!!). Not everything is shiny and perfect. #keepingitreal

Check her out…..

Have you got a kid with a story of strength?

Have you got an anxious kid that teeters on the precipice? How do YOU cope? How do THEY cope?

 

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