I really love the idea of the Carers’ Museum, and I knew instantly the object I would donate….a pair of Jennifer’s socks!!! It’s the small things for me that are the hardest as a carer, and putting somebody else’s socks on for 26 years or 9125 times, has at times, driven me crazy! It seems very silly I know, but it’s just not something that the average person does . Yet it is such a simple basic need, with Jennifer and I having our first conversation every morning, while the dreaded socks are being put on. It’s definitely a love-hate relationship I’ve developed with them.
I was a nursery nurse and always wanted children with Iain, my husband. I had Sarah and was overjoyed when my second daughter, Jennifer, came along. Life was great. We had five blissful weeks when everything was fine. But I had this niggling feeling that something wasn't right. At first cerebral palsy was diagnosed which was devastating news. But then we were told she had a large cyst in her brain and epilepsy. Then she had bilateral cataracts. Our life, including that of our other daughter, started to be swallowed up by hospitals, serious operations, procedures, appointments. We were even going down the route of brain surgery.
We’d now reached the teenage years and it was then that Great Ormond Street checked for genetic mutations and discovered that Jennifer had an incredibly rare condition - Gould Syndrome - that affects the blood vessels. It was so rare there were only 50 documented cases round the world at the time. Now there’s 400. We were told Jennifer had had a stroke at birth and yet being such a rare illness, there seemed to be no information whatever. We were baffled and numb.
If you put everything down on paper, it looks horrific, but there’s a lot more to Jennifer than her diagnosis. She’s a huge communicator. She loves a chat. She always greets people with a hug. She is the most tenacious person I’ve ever met. From the day she was born she’s had so many struggles to do the most basic things and she’s always determined to do things herself. She’d struggle for hours and hours to do up her own buttons and when she finally did it - the joy on her face!
There is a flip side to this, if she ever decides she won’t get up, she won’t go to school, it’s very difficult to combat. But then I’ve learned to be tenacious myself. You learn to be strong very, very quickly as a carer. We’re known as silent warriors because really we’re fighting all the time and we will carry on fighting because if we don’t, nobody else will. We will keep going, for our children, to give them a voice.
You also have to develop coping mechanisms extremely quickly when you’re a carer. Jennifer’s anxieties can blow up very, very quickly and result in some aggressive, emotional outbursts which we’ve struggled to contain. I’ve felt overwhelmed at times but I can’t change Jennifer’s diagnosis. So the only thing I can change is my thinking. One of my coping strategies is what I call my “Walk Talk and Mutual Moan” sessions when some friends or family indulge me so I can offload and they can share their challenges too. I try to walk as much as possible. Iain and I can’t walk together - one of us needs to be with Jennifer - but we try to walk as much as possible. It’s priceless.
I’ve also learned the value of small things. If I clean a cupboard, or weed a flower bed or cut the grass, it’s a small but genuine achievement which gives me a bit of a boost and then I don’t feel so overwhelmed. It stops me thinking only one way, focusing on doom.You can’t stay in that mindset. We try to laugh a lot and be as positive as we can. So my mantra is: “It’s Going To Be Ok.”
As for Sarah, she’s been amazing. She was swallowed up from a little baby by me trying to fix Jennifer. That’s really hard as a mum but I am supremely proud of the tenacious and resilient young woman she has grown to be. I hope she’s seen by being resilient that you can get through anything.