February 7, 2025
I'm always here for you

Cropped shot of two unrecognizable people holding hands in comfort

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Written by Lesley Potgieter

Grief is an emotion we all feel but seldom acknowledge. It is an emotion shrouded in darkness, living in the shadows, lingering, breathing.

When a parent is told that their beautiful newborn will live a different life to the one that they had imagined, the first feeling is numbness, shock.

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All the hopes and dreams a new parent carries for the future is suddenly altered irrevocably.

Those parenting books and articles that were previously read with great enthusiasm no longer apply. The future is now unclear. Uncertainty hovers.

Fear and grief is their new companion and confidant , the road before them an uncharted one.

Each family has their own path to travel and while their diagnosis may be the same, the support and understanding of those around them is not.

All the milestones that were initially met with great enthusiasm are now altered and replaced with hesitancy and trepidation.

Social situations which were once anticipated with enthusiasm must now be meticulously planned and arranged, or avoided altogether .

It’s the awkward silences of others which makes one sink further into silence, isolation, then grief.

The inability to accurately describe the full range of emotions that is experienced having had your child diagnosed, sets an invisible boundary that is seldom crossed by those who do not live through the same experiences.

One feels the need to constantly explain to others while, in truth, there should be no explanation required, because each child is uniquely beautiful -differently abled or not.

Unfortunately, we do not live in that idyllic world where no explanations are required. It’s the feeling that one will somehow be judged that keeps parents silent.

Many choose to live their rich, beautiful lives behind closed doors.

Society is often ill equipped to deal with the issues that some are forced to face and, rather than subject their child and themselves to the judgements of others, parents remain detached – not because they want to be, but rather as a protective shield for their child .

Sometimes the nature of grief is that not every parent has the capacity to challenge the injustices that their children face on a daily basis. They somehow feel that their inability to do so is letting their child down, when in truth, they are doing the best they can within their circumstances and control.

During the past two years of forced isolation, the world has been living in unprecedented times. Grief and loss have now come to the forefront of many lives. It has altered how we have had to interact and socialize. It has pushed many to the brink of despair.

That is, except for a select group who, unbeknownst to themselves, have subtly gained the skills others have not, because of what they have had to contend with in their everyday lives.

Parents of differently abled children and their families have learnt to adapt, work within the boundaries laid out for them and find joy and happiness in the unexpected moments. Many have unwittingly gained the skills that others over the past two years have only begun to experience. Perhaps it is time that parents of differently abled children step out of the shadows and into the limelight.

Those now having to embark on a new and unsettled future for the first time, must first grieve the life they thought they would live. Only then may they be able to embrace the one laid out before them.

Being willing to admit that our frailties may in fact be our strongest ally, could be perceived as a little far-fetched and unrealistic, but if we are to move forward, a linear approach could in fact be the opposite of what is required .

Some may argue that it is naive to believe that in the new world we now live in, there is an opportunity for us to re-examine the true meaning of the concepts “differently abled” and ” inclusivity” and the stigmas that surround them, having experienced isolation in one form or another. In the future, perhaps concerted efforts will be made in addressing what for others is the norm.

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