Be Brave

In February last year my youngest and I were invited to join a Child Development Group…it was sold to me as a ‘Family Support Group’ and, if I'm honest, the prospect made me feel uneasy. I couldn't visualise what this group would look like - would we be expected to bare our souls? to share the finer details of our children’s woes? I attended nervously…I almost backed out at the last minute but decided to brave it and welcome the opportunity.

What I didn't realise when I opened the door is how much it would transform my life, let alone the progress my girl would make. I walked into a preschool setting but one that was totally unique. Instead of the hustle and bustle, noise and chaos of most groups, this was an educational play session that catered for a select group of children and families. We were all, despite our varying diagnosis, in the same boat. There were no judgements, no insensitive questions, no boasting about possessing a genius child…rather, it was etched on the face of every parent that we were here to support our children, to give them a safer and more secure environment to work within. What a relief! 

Each Mum was at different stages of the diagnosis process: some were seasoned pros, a few were in the initial stages of assessment and one or two were consumed with a sadness that was palpable. As each week passed we got to know one another more intimately. We shared our stories, gave advice where we could, we laughed, complained...but, above all, we supported one another. I have learnt so much from each and every one of these women…I've realised that, more often than not, Mums are at the coalface of these groups. My husband works. A lot. I'm fortunate that he does but the end result is that I attend all these sessions or appointments alone, just like most of the women in this group. You have to staple on your brave face, breathe in the fear you feel when you attend a meeting, swallow the emotion as it wells up each time you have to express information about your child’s condition, strengths or weaknesses. It's all consuming and takes courage - sheer grit and determination. Every woman I have met at this group is endowed with an inner strength that they probably didn't know existed, until they were faced with these challenges. 

I'm a big believer that the right support is essential - it cannot simply come from your family and close friends. Whether it is portage, local services provided by your council/borough, charities…wherever it is, you have to tap into it. The group that we attend has given our children the skills, resources, time and care to find successes. They have given us the tools to support, engage and manage our children. Most of all though, it has allowed us to create a network of women who can lift one another up, strive for each other and cheer each other on. We can sob openly if we are having a bad day and we can laugh heartily when the better days are upon us. 

Many of us have overcome the grief now, whereas others are in the midst of it…some days you can almost see the ‘black dog’ walking beside them, nuzzling their legs and demanding their attention. This has made for painful viewing - anyone who can empathise with this experience knows that this sorrow, although ever present, minimises and the gloomy fog clears so you can begin to see the horizon again. When I see some of my now dear friends so consumed by this sadness, I want to do anything I can to reassure them that the diagnosis is a start pointing, not a shackle. It ‘should’ open doors and it ‘should’ promote the start of a new journey (I use should because I know we have been lucky - not everyone is). It won't always be a smooth track but your eyes have been opened to what you need to do and hopefully, with guidance, who can help. 

The advice I would give to any newly diagnosed parent is be brave - channel that heartache into proactivity. Push every ounce of your sadness and anger into seeking out support. When I opened the door to the Child Development Centre I anticipated all the negatives, I was so wrong. What a mistake if would've been if I had allowed fear take over and stayed home. Being brave leads you to face things head on - we fight for our children to make their life better, we fight to keep ourselves afloat, we fight because we have no other option. I made a decision when my daughter was diagnosed that I could either lay down and die or I could champion her. She is my life’s work now, just like so many of the Mums I have met. 

The group that we have formed now transcends our CDC - we are now a team, a united force working together to support our children, to sustain one another. Starting a simple Facebook group for these ladies is one of the proudest and best things I have ever done. I was nervous suggesting it but I am so grateful I took the plunge and did it. No-one should walk this journey alone. It troubles me to think how many parents might be at home or at work each day feeling abandoned, isolated and trapped. I would urge anyone in this position to reach out. Send a friend a message, explain how you feel. Search your local authority's website for local services. Contact Mencap, Scope, the charity that supports your child's diagnosis. Do whatever it takes to challenge the status quo. There is no shame in feeling sad, there's no shame in asking for help. You can't control the diagnosis but you can absolutely control how you personally deal with it. Above all, be brave and believe that you can do this, because you can. 

Bibi xx

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