A Grandmother's Story

Sandra and Pat are grandparents to Scarlett (aged 7 at the time of writing), who was diagnosed with Dravet Syndrome at 3 years old. In her story below, Sandra shares a rarely heard perspective - the emotional impact of living with Dravet Syndrome as grandparents. 

I'm a practical kind of person who doesn't panic under stress, so when Scarlett's seizures started at 4 months old, of course I was concerned and worried....but my biggest fears, hurt and worry were for my daughter and her husband, Catherine and Matt. 

Our little family's life changed forever that day! No more were they new parents, learning to adapt to being mummy and daddy, bouncing little Scarlett on their knee. All of that normality had had been stolen away from them.

The heartbreak of the early years

The first three years were a living hell. Catherine, Matt and Scarlett must have spent a good third of their time at the hospital. 

My husband, Pat and I were completely powerless to help. I answered my phone in those early days...every single time it rang with “She hasn't has she?". Her seizures were in the hundreds and getting longer and longer, almost 3 hours on occasion. All we could do was drop everything and get over to the hospital to just be at their sides.

The hardest thing for me as Catherine's mother was how I could never cuddle and console Catherine when she needed me most. It broke my heart daily and I lived with that lump in my throat that you get when your heart is breaking, I couldn't hold my baby, and so wanted....and needed to!

I understood why each and every time we rushed to A&E, Resus or the Intensive Care Unit....my baby would put her hands up and step back away from me. You see, it's self preservation....she needed to be strong. So, Pat and I had to find new ways of being strong for them so that they could be strong for their baby. I suppose this was the first time as parents we were so totally unable to help or make things better.

Coming to terms with diagnosis

The next year a diagnosis of Dravet Syndrome was finally given. A relief I felt...we finally knew what was causing these seizures. I was pleased at first, but in bed that night I read a very well written account of what Dravet Syndrome was and what it meant for Scarlett and my family. 

I cried so much, my heart was broken for them, I hadn't realised what Syndrome meant. How could they cope with so much to deal with? I think the saddest part was reading about the impact that Dravet Syndrome had had on families. I swore that night, Pat and I would be with them throughout.

There has only ever been one other occasion I've cried. The night we were woken by the phone ringing. “She hasn't has she” is my now-normal first response with my heart palpitating with every ring.

"We're alright, we don't want you to come down, but they've had to incubate, put Scarlett into an induced coma”. I have never in my life felt as hopeless as I did hearing those words - “we don't want you to come down”. Pat and I got it, Catherine and Matt just needed to be alone, to just digest what had just happened to their baby....but it didn't make us feel any less useless. We were there for 7am the next morning.

An overwhelming joy

No matter where I was or where I was going, my phone was at my side waiting for the dreaded phone call. But I think even worst than that, was hearing, or seeing an ambulance - I’d feel overwhelmed with fear every single time....a bit of a panic would take over as I needed to stop the car NOW to call and ask “is everything okay”. 

I remember so clearly in those early years whether I'd had a good day at work, or a great day out with Catherine and Scarlett, lying in bed with that contended smile you have - reminiscing the day and being thankful, then I'd turn to go to sleep and say; with fear going around my head, “not tonight...please, not tonight”.  So my beautiful days would end on a plea of not to take her. It's a prayer and fear that we live with daily, as parents and grandparents of a child with Dravet Syndrome.

But we had so many things to be thankful and grateful for...for each day we saw Scarlett was an absolute blessing, the joy she brings us is overwhelming. I think it's the contrast of joy/ fear that is constantly in your mind that intensifies your joy-filled moments.

Scarlett today - a new dawn

I'm pleased to say things are much better these days...it's like a new dawn. I could talk forever on the wonderful things that astound us with Scarlett's beauty, and the pure happiness that she radiates into mine and Pat's hearts.

This last year and half has been packed full of first's, here are just a few:

Our little family now venture outside of Nottingham without us!

Scarlett now stays overnight at granny and granddads - exhausting, but we love it! 

Scarlett's speech and understanding are through the roof!

She's happy and popular at school, and she has become the most loving, and best big sister she ever could be to our precious Nellie Rose!

There is nothing missing in our lives, we live in constant thankfulness with each new day and every single second we get to spend with her and our family!!  

Scarlett will never outgrow Dravet Syndrome...seizures will always be part of her life, and she will need 24-hour care forever.  But we've adapted...we've conquered the fears and now concentrate our thoughts on all the good!! 

I've always believed that once you've experienced real fear, true joy and a happiness beyond all expectations enters your life. Scarlett is, simply put, our sunshine.

Thank you for reading.