Small big steps. Meeting the wider 15q family.

So, after some amazing effort by one of the other parents whose daughter is also diagnosed with IDIC15 we recently met other families with 15q kids for the very first time.

Some 14 months or so on from diagnosis, we would finally get to meet families like our own, with a child affected like our own, families that were most probably a lot further down the line than we are, that had been there, seen it done it, a possible glimpse to the future, we greeted the day with a sense of excitement and trepidation.

Excitement that we could take another step on our journey, hopefully gain new friends and gain and offer support to those we would meet, not just for that day but for the future too.

Trepidation that knowing we would need to step outside of that bubble, that bubble where Matthew is still a baby in a toddlers body and see for the first time just how IDIC15 affects children and see how Matthew may be affected in the future. We would also for the first time be introducing our daughters (8 & 6 years old) to a world they were not particularly accustomed but one we wanted them to experience, that they could understand and accept, we were unsure if they were too young but were convinced that like us they needed to take that step, for them and also for Matthew.

Arriving at the venue, a lovely little special needs centre called SNAP in Cannock the excitement and nerves were still present, as is natural before meeting so many new people.

As we walked through the door, one of the IDIC kids, a little girl saw us enter, ran to the door with a beaming smile, pushed in front of Debbie and squealed with delight, “A baby, a baby” and tried to push Matthew and his pram through the crowded lobby and rather amusingly putting ankles and shins of bystanders at risk of bruising.

Moments after, while queuing to pay, another, a little boy came past using his walking frame and as if he had known us for years requested with a sense of purpose “Can you move out of the way!?”, Debbie responded with a smile “Of course I can”, this immediately settled our nerves and helped us to relax.

As the afternoon progressed, we met other families, chatted with as many as we could, some total strangers, others we were familiar from facebook groups, some recognised me and Matthew from the article I had written for the Unique newsletter, each and everyone though were eager to talk, to share stories of their children, some hard, some inspiring, so much was relatable and everyone was relaxed and talking as though we had known one another for much longer than just that afternoon.

Our daughters also relaxed, they seemed to be amazed and excited by some of the special needs play equipment, watching them I realised that they were ready for the step we made that day, children always are, and my fears were just those, mine not theirs, they just saw a group of other children, making a lot of noise and having fun.

I saw a glimpse of the future, I saw IDIC15 kids trip and fall on the playground and their siblings run to help them up, support them and show a bond that we see developing with our own children, a special bond and amazing to see.

By the end of the afternoon, I was far more relaxed and I was already looking forward to the next meet which is already in the planning, knowing how readily and without fuss other parents cope with those fears I have for Matthew’s future I know that we now have a support group we can call on in the future.

Next time and in future years we will possibly no longer be the newbies of IDIC15, another family may be, and like us searching for that reassurance.

Before that day I thought Matthew was the youngest, though I found there is already one boy a few months his junior, the day showed the benefit of the network we have and how beneficial it will be to the next new family and many more after that, one day maybe we will become that figure of reassurance, dealing with the day to day without fuss and it will be all thanks to an amazing group and the IDIC15 family.


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