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The 'Normal' One

‘Porque eu não sou teu amor?’… ‘Why am I not your love mum?’

The question my four year old daughter asked me a few months ago that broke me.

Having one child with a disability and one healthy child creates life changing moments you’d never expect – frustrating, sad and amazing times. Lilia asked me the question above at such a challenging period of my life. I had been and continue to travel back and forth to Lisbon with Marley. Lilia stays with her more than capable father and is very well looked after, but I miss her like anything.

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My world has been turned upside down – hospitals, illness, treatment, disability... I made it more manageable for both of us by starting to campaign. By trying to raise awareness for people with disability within the Algarve, Portugal and the rest of the world. During this process though I have become consumed. Consumed by Marley’s round the clock care and needs. Lilia always has to hold open the door...

Lilia is amazing. She makes friends easily, has hit all her milestones ahead of time. Lilia is hilarious, intelligent, beautiful and special. Because of all these wonderful qualities I don’t find the need to raise awareness for her. Only if I were to advocate the colour pink more... The plain, hard truth is I would love to blog about cooking or lifestyle hacks and never touch on disability or equality again. But that isn’t reflective of my life.

As parents we put a huge amount of energy into teaching our children to take turns. To share and ensure each sibling gets an equal portion. But in our case it’s impossible. I was deluded into thinking they could ever be ‘equal’. The promise that talent, good fortune and accomplishment will be evenly distributed between them both is a lie. Regardless of disability.

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Inevitably there came a time (far too soon) when those inequities were exposed. Despite our best efforts it leads to resentment, insecurity and conflict. Interestingly not from Marley. He simply doesn’t have the cognitive ability or social intelligence to understand the difference in its entirety, and in many ways that is a blessing for him. Lilia started showing different behaviours very young. Copying Marley’s speech impediment, ticks or wetting herself at times. Reminding me of the animal nature of child rearing.

I believe these dynamics were different between my children because of Marley’s disabilities. Instead of starting off with perfect equality like other siblings, there was immediate imbalance in health and ability. Instead of the discovery, years down the line, how life’s gifts have now been fairly appointed, it was almost where their relationship began. Many people write about and believe the able-bodied child is often neglected as his or her needs are subordinated to the more pressured demands of the disabled sibling. The truth is we as parents over compensate rather than neglect!

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The asymmetry between the two brings many fears to my mind;

- Lilia might hold hostility or resentment due to compensatory over achievement

- Maybe she’ll feel isolated or confused

- Maybe Lilia will fear for her own health or feel guilty about being healthy

- Maybe she’ll compel to be ‘perfect’ in order to compensate for Marley’s ‘imperfections’

- Maybe she’ll act out by making self destructive mistakes during adolescence

- Maybe she’ll feel shame or embarrassment as she realizes people view her brother differently

- Or even maybe she’ll feel responsible for his care when I’m old and senile singing nursery rhymes in the corner of my home I know she’ll banish me to

Well that was far more maybes than I thought I could come up with but I always want to be true to myself in my writing.

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Despite the never ending list of maybes I know despite the hard times ahead Lilia will be an amazing person because of her experiences. She’ll grow up infused into a person with a great sense of responsibility, patience and compassion for others. Maybe it will inspire her to go into medicine, teaching or law. Did you know stars like Jamie Foxx or Eva Longoria grew up with severely disabled siblings? I didn’t!

Luckily I have time to make this life the best I possibly can for each of them. Lilia is 4 and Marley is 6 and already Lilia is more advanced cognitively, physically and emotionally. It doesn’t stop them however to relate to one another, play happily or jostle like ‘normal’ siblings do. Some days Lilia will be annoyed I can’t look at her dance moves fast enough as I am dealing with a dirty nappy. Other days (as gross as it may seem) she’s the one begging to help. She really is a very loving, caring and patient little girl.

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Marley is now being home schooled as he isn’t able to attend school for medical reasons. I spoke to the school about his return after his operation – he will need private one to one care even at the school to cope with his developing needs. On top of this they informed me he’d probably be held back another year, he’d already be held back one. This would put him in the same class as his little sister.

I couldn’t do that to either of them. School is meant to be a sanctuary for learning and making friendships whilst discovering who you are. I couldn’t jeopardize that for either of them and especially for Lilia. Hence my decision to push forward in home schooling Marley and hopefully as his needs become calmer medically, I’ll be able to make a great learning environment and maybe even help other special needs children along the way.

I know there will be times Lilia is resentful or ashamed of Marley and there will be times Marley feels rejected or ignored by Lilia. I like to believe, however, that these happy beginnings will inform a more enduring relationship. No it will not be equal. Marley will probably never have the same range of opportunities and experiences as his little sister. And Lilia will probably never be the focus of a blog or campaign event. But I remain hopeful that an early and well managed experience of these childhood inequities will help to make them more accepting in the inevitable setbacks and challenges they encounter.

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“You knew it when you were 4. The yellow lollipop is not the same as the red one.”

I look at this and think of the lesson behind it. We need to see there is more to the bitter discovery that one sibling has more than his or her share of career success, romance and creativity. Maybe people don’t need these ‘predictable’ markers of happiness, when we might take a more complicated or inventive path to satisfaction and insight. And when we grow up – if that is ever possible in my case – we may come to value the fact not all lollipops are the same. Whilst most importantly savoring every lollipop’s sweetness.

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