The club I never knew I would be signing up for

Emmy Samtani
Emmy Samtani
Emmy is the founder of Kiindred and mother to 3 little ones. Over the last 4 years, she has worked with some of the most credible experts in the parenting space and is a keen contributor on all things parenthood.
Created on May 19, 2024 · 7 mins read

Disability is a weird cruel thing. It can be so rewarding; teaching you about life, the things that really matter, and yourself. At the same time, it can also feel scary and isolating.

I feel pretty lucky that whilst my youngest was born with a condition called DiGeorge syndrome (or 22Q 11.2 deletion more specifically), she didn’t get all of the bigger medical complications from birth.

The medical things attached to this diagnosis are often seen from birth, but there are many other factors that they can experience across their life. There is no certainty with these conditions and googling can only leave you feeling more confused (trust me, I tried).

She wasn’t born with a heart condition or complications with her liver and other major organs (like some with the syndrome). However, her significant global delays and other medical quirks still impact her greatly.

We may never know how or if it will unfold across her years… Will she develop schizophrenia? Will she have bone issues because of her challenges absorbing vitamin D and calcium? Will she be able to communicate properly with others? Will she live with us forever?

Regardless of these challenges, I always try to remind myself that there are people far worse off.

Somewhere in the middle

I keep coming back to the same concept whenever I think about this or my other kids and their varying needs. That we are sitting somewhere in the middle. Not quite disabled enough to truly feel valid in sharing grief or worry but also not able to truly enjoy life the same as others.

When you enter parenthood you dream of what life might look like for your child.
The things they will be interested in or good at, the friends they will make or even the parent groups you will be part of where you celebrate your kids who have aligned values and interests.

Never in my wildest dreams did I imagine that some of these things wouldn’t unfold as naturally as planned.

Or that my kids would have to try just that bit harder to socialise and make friends, or keep up with their peers. Never mind the types of parents you find yourself clicking with, because it takes a certain person who is empathetic, patient, and understanding.

Now I know people have their opinions of Facebook groups -that it can bring out the negative in people – and I am the first to say I was never a fan of those online mother’s groups or forums. People who unload on those posts are generally not my kind of people.

But in my search for answers outside of what you find on Google, I discovered some Facebook groups relating to my children’s genetic conditions.

Connecting the dots through community

In full disclosure, I had to prepare myself for switching off when it felt overwhelming, and can see why it isn’t always for everyone.

For me, it was a chance to feel connected to a community navigating the same reality and to know that my observations or feelings were valid. That there were others just as confused about what this condition meant for their child long term and to reassure each other when we are fraught with fear or concern.

When you become part of this group, you quickly realise that you are part of a community filled with kids just like yours.

Navigation through health concerns, developmental challenges, and parents who only want the best for their child but are feeling clueless along the way.

There is also a realisation that healthcare systems aren’t built the same everywhere and that finding the right medical or therapy support isn’t always easy. You have to join the dots yourself many times along the way and continue pushing for answers if you don’t feel satisfied with resources.

I was reading a post on this same private Facebook group which was accompanied by a picture of a little 13-year-old girl.

It caught my attention because she shares similar facial features to my daughter and I could imagine that she may even look a little like her when she is the same age.

Whilst people often say my daughter’s features from the condition are mild, it is very evident to me that she belongs to this club – and so do we.

This gorgeous picture of the 13-year-old was accompanied by a post from her mum saying how cruel teenagers can be. That her daughter’s friends had distanced themselves from her over the years because she was ‘immature.’ The only people who came to her birthday party were two girls, sent by their mums. This really broke my heart.

Because despite any medical complications, my biggest fear for her has always been this very thing. Acceptance and inclusion.

Navigating my biggest fear

I always try to include my child in everything her siblings do, to recognise that we are all unique and that we should feel confident to embrace our uniqueness.

As early as daycare, other kids are looking at her differently. What language is she speaking? They often ask. Her daycare teacher also told me she had regressed since repeating her last year of daycare, and she has.

It’s hard to pinpoint exactly why, with there being so many parts to it. Her best friend who she loves fiercely went off to school. Her gorgeous group of friends did as well and now she is in a class with big personalities and building new connections from scratch.

Keeping up is hard for her. It’s not the result of the daycare excluding her, but more of a social discrepancy in her ability to connect and communicate with others.

In my heart, I have always hoped that she will flourish and grow over the years to stay on the ‘mild side’ of her syndrome. But there are never guarantees to any of these conditions.

While the medical stuff can be less prevalent, the ongoing developmental and social challenges will present themselves over time. Like I said earlier, who knows – she may even be living with us her entire life.

She may very well be the kid distanced from friends – or she may not have many to begin with. She will struggle in school because she isn’t quite disabled enough to get all the support thrown at her but she will not be able to keep up with her peers, that’s almost guaranteed.

She will always be the kid performing below average but with a beautiful personality and drive to (hopefully) get her through.

Above anything academically, social isolation and inclusion is my biggest worry and I know this would be the same for many other parents who have a child with a disability. Perhaps this is why that one post had me jumping onto my computer to write this.

Final thoughts

Parenting kids with additional needs leaves you in a constant state of conflict. From being hopeful and believing you were sent these challenges because you can handle it, to wishing things were different for your kids so they didn’t have to try so hard.

Of course, you would never change them for the world because you love them for who they are, but it’s ok to wish that things were different.

If I can share a lasting thought for anyone reading, it would be to lead with kindness and teach your kids to do the same.

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