Additional Needs

“I’ve got this Facebook friend…” - Raising a Child with a Disability

Posted by Emily Sutton on 3rd December 2015 Additional Needs, Advice & Support, Disabilities

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Talking to a friend the other day, I was recounting the dramas we have been through recently, regarding my two-year-old’s food intake disorder.

Part of my account went something like this:

“I’ve got this Facebook friend, who had a similar experience, and what she did was….”

But, when trying to conject the perils that my ‘friend’ had been through and how this relates to us, I kind of lost the interest of the friend in front of me, presumably due to the hypothetical nature of the story.

The problem is, to me this is not a hypothetical story, nor is she a hypothetical friend.

Her story is very relevant, and she is very real.

She, and her son, are very close to my heart.

Yet, we have never met.

As much we cherish the support of our family and friends, there are some things that only those travelling the same path can totally understand.

The people that have gone through, or are going through, the same ups, downs, guilt, euphoria, anger, elation, frustration, grief.

Commonality through our children’s conditions.

Therein lies the cohort of individuals that I now wholeheartedly define as my friends.

These people, who started out as ‘friends’ in the ‘Facebook’ sense rather than the conventional definition, very quickly evolved into a group of the most valuable friends that I could possibly ask for.

These friends have played an absolutely colossal role in my emotional health.

Facebook had previously been a source of unwelcome reminders of all the things the other children are doing that my son might never do.  

Photos, videos, anecdotes, at times it was insufferable.

On the day of my son’s diagnosis, however, Facebook transformed into a safe-haven and fount of knowledge and empathy.

I made friends overnight.

Not just Facebook friends, real friends.

In 24 hours I went from the saddest, gloomiest depths of despair, to a place of hope, kindness, inspiration and expertise.

I did this through the discovery of a private Facebook group and my new ‘friends’ therein.

That was two years ago.

Since then, I have met many of them, shared some wonderful experiences and made some lifelong memories.

In the meantime, our friendships continue to be sculpted through our online communications, which is a life-line to each of us.

Our friendships grow and flourish while day-to-day we lead totally separate lives.

My second defining moment was through a Facebook support group for parents of children with acute feeding disorders.  

The founder of the group is the sole reason that my son avoided a feeding tube.

The wonderful lady in question is now a dear friend, as are many of the other mums in the same group, yet we have never met.

We connect daily for support, giggles, tears, struggles, and we rely on each other more than any of us could have predicted.

I harbour a special affection for all of my Facebook friends’ children and follow their progress with fondness.

All will message me in the middle of the night if I contact them with a problem.

All are fast to reach out when I post about my latest trauma with my son.

They are first to click ‘like’ when I post a photo of him doing something amazing*.

*not amazing to 99% of the population.

Regardless of whether or not I’ve been fortunate enough to meet my virtual friends, they are all close to my heart.

Maybe it doesn't matter that we have never met.

Maybe it doesn’t even matter if we would get on with each other in real life.

If we are both getting what we need from the, ‘friendship’, then surely that’s all that matters?!

In fact, the dictionary definition of a friend is ‘a person with whom one has a bond of mutual affection’.

Nothing about going to the movies, trips to the shopping mall, or play-dates at the park.

The amount of time and energy that these friends have devoted to me, replying to messages, speaking on the phone, helping me complete funding forms, sending me links to specialist equipment, sharing their experiences, helping me feel less alone, would probably outweigh the time I have spent with my real-life friends, in the latter years.

I never directed this to be the case, it simply evolved.

Like a magnetic field, I am drawn to engage with, and open up to, these people, for reasons I cannot express on paper.

I salute you, Mr Zuckerberg, and I think my husband would like to buy you a beer for keeping his wife on the right side of sanity (most of the time!).

To my Facebook friends…thank you.