The Importance of Family

Ceri-Ann Brown's avatar

by Ceri-Ann Brown
on

I remember as a child hearing people say that as long as you have your health then life is good.

I remember also always hearing how important family is and that actually... nothing else really matters other than the ones you love and the ones who love you... this extends to close friends too.

The older I get the more true I find this.

I know that my parents and mum in laws' journey through grand parenthood has not been a conventional one.

They have had to find physical and mental strength tenfold and have had to learn skills never previously known to them.

It would be so easy for a lot of people who know us to consider our lives too complicated and unpredictable and take a back seat.

But I have never seen people become more close together than those who have experienced trauma. For the special needs parent and the child there will always be so many challenges.

But for the extended family... the grandparents, the great grandparents, aunties, uncles and so on... they have to put aside their own feelings of grief and focus on helping both the child and parent.

Their grief would just add to my stress and I know that they probably struggle a lot emotionally with what we have all been through.

From the early and very uncertain days in intensive care they were all there. Taking our clothes home, washing them, and bringing them back. Helping out in any and every way that they could.

Quietly grieving away from me so they could be my rock when I needed them most. They will always be the calm during my storm, and I will never forget any of the things any of them have done for me.

They've been there for the surgeries, the procedures, and even just helping entertain a distressed Amy in a multitude of different waiting rooms over the last four years.

They even stepped in when I returned to work after maternity leave and fully immersed themselves in a world of tube feeds, medications, and constant intervention.

Every sound she makes - they want to know what it means. Every new piece of equipment - they want to know what it's for and how to use it.

They've learned to be as excited as me when a place has great wheelchair facilities and to fight for changing places to be added wherever possible.

They have become advocates, determined to change the world for those who may not yet be able to change it themselves. It's so empowering.

Amy is having a procedure this week and already I have both grandmas offering to give up their whole day to keep us company and help pass a potentially difficult and boring day.

My mum recently apologised for getting upset that she couldn't buy Amy a rocking horse or bike for Christmas.

Just one example of how much extended family of the special needs child feel they have to internalise their struggle. 

Getting out and about these days definitely required a mobility car now, and already my mum and dad are hoping to either get insured on our van, or to get their own wheelchair access vehicle so they can still do what grandparents do and spend time with their grandchild.

Every Saturday we go out and we take my grandma and auntie with us too and we get breakfast. Amy is a fan of going out, but not to cafes or food places.

It's boring for her and even with her iPad, toys and on tap attention - she has a tendency to cry and shout the entire time.

Without even asking, my dad and auntie will take Amy for little walks just so that I can have a hot drink and eat something. It makes her happy, it makes me happy, and hopefully makes them happy too.

I've known my dad to even just repeatedly take Amy in lifts because he knows she loves it and that it will keep everyone happy.

I always think how strange it must be for my parents having raised me - a neurologically typical child that met all of the usual milestones and never really had any problems.

To now having a granddaughter who is non mobile, nonverbal and tube fed. But when I see how they look at her, they have nothing but complete adoration.

She is their granddaughter and she knows exactly how loved she is and also how to get spoilt like any other child would.

There was a time when we questioned if Amy recognised people other than her mum or dad, but now it is very obvious how much she values and appreciates her family.

I now show her photographs of people she knows and she will often laugh and cheer loudly as we swipe through the pictures. It melts my heart.

As Amy grows it will get harder to get her in and out of some houses. A lot of social time will have to happen out somewhere, or in our own house.

Putting hoisting and ramps in every house isn't feasible... but what worries me less is seeing already how much everyone will work to accommodate and include us so that we are never left out.

In spite of a lot of challenges I have in life, I know how incredibly lucky I am.

Not just to have an amazing child that has opened my eyes to a new world; but also for my amazing family who will stop at nothing to help me, even if it's last minute... even if it's just to listen to me have a cry and bring me sneaky unhealthy snacks.

Life is short and we need to remember those snippets of happiness.

Those moments where everyone laughs and you see your daughter absolutely adoring the silly songs of granddad and the bouncing with her grandma.

It's so easy to dwell on the hardships faced, but the reality is we are all very lucky.

So thank you, to everyone who is close to us and deals with our unpredictability... our cancelling plans, our leaving early... and for accommodating us as best you can in every situation.

You always think of Amy first when planning everything... even on Christmas day at my aunties' house when Amy was particularly distressed.

You all asked how you could help and what could have been done differently. It was amazing.

Thank you to all the other grandparents, aunties, uncles, cousins etc. of special needs families.

You probably have no idea at all how important you are and even if we don't say it - we couldn't do it without you and we are so grateful for everything... even just bringing us milk when we can't get out of the house.

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