Additional Needs

Remember, Remember the Month of November

Posted by Amy Cameron on 9th November 2018 Additional Needs, Advice & Support

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I love November; the dark cosy nights, cold crisp mornings, fireworks, autumn leaves and smells of gingerbread, cinnamon and toffee apples.

But two years ago, November changed our lives forever.

It’s now a month I won’t just see for all the seasonal things I love, no, when November comes around now it marks our diagnosis month.

November 2016: We had been going through the motions of hospital appointments, waiting lists, referrals, blood tests and more waiting lists trying to figure out why our little Zac wasn’t meeting physical milestones and why he seemed to be getting weaker with every month that went by.

Things then turned very serious when Zac took ill with a chest infection in November.

We were admitted to hospital, Zac was on a lot of breathing support and strong medication and we set up camp in the ward.

An army of doctors and specialists came to see Zac and on the 16^th November 2016, we heard the three words that changed our lives forever: Spinal Muscular Atrophy

Zac was diagnosed with SMA type 1 and we were told this was a life limiting condition.

Zac’s prognosis was very guarded and the future was uncertain.

I felt completely numb as I tried to take in this news.  I looked at my husband – his face a picture of devastation. I looked at my perfect Zac.

I knew that our lives were changed forever and now our focus was on making the best and happiest life for Zac and his big brother who was waiting at home.

We drove home from the hospital in silence – both of us filled with a heavy heart, a sadness, fear at the uncertainty and now we had to tell our families.

There were two weeks left of November and in those two weeks we had specialists visit our house, the phone rang constantly, appointment letters arrived almost every day, equipment was delivered and we barely had time to breathe.

I remember one of the health professionals say to me “this will all settle down.”

In those two weeks me and my husband talked, cried, researched and we tried to function in our new daily life.

The days were long and dark as we tried to make sense of it all.

So, November has come around again – It’s been two years since that November and I can’t believe how far we’ve come.

We have gotten used to our new normal – I don’t think things ever settle down, I think we just get used to dealing with the everyday.

I still love November.

It’s the month that made me stronger, It’s the month that made me braver, it’s the month that made my faith unshakeable, it’s the month that led me to meet incredible people and it’s the month that started my journey to my different kind of normal.