Coronavirus, caring and coping

As part of Carers Week Michael Wallis, Somerset County Council communications officer, talks about the challenges and the cheer of bringing up a child with Down Syndrome.

I never really considered myself an unpaid carer, just a dad who happened to have a daughter that was disabled, but caring for my daughter is just what I have been doing ever since that very cold January morning ten years ago when she was born in a hospital car park.

My wife and I knew from the results of her three-month scan that our daughter was very likely to be born with Down Syndrome. For us there was no question of terminating the pregnancy, and it saddens me that almost all expecting parents who find out their unborn child has Down syndrome take that route – if someone in that position confided in me I would invite them to spend half an hour with my little girl and they would change their mind – despite her difficult life she has been a delight in our lives.

So, there I was, six months later, looking down at our new arrival, as I wrapped her in my coat, just fifteen feet from the maternity unit – what an entrance to the world, I guess she couldn’t wait. As I looked into my daughters squinting eyes I could see straight away, I looked up at my wife and said: “Well here we go, we have our Downs syndrome baby” and so my journey as carer began.

I say carer but really, as parents, are we not all carers? I already had two boys and since have had another girl. I only saw caring for my first daughter as being the same parental responsibility as caring for my other children – how different could it be?

Of course, it is different in many ways, harder in many ways – perhaps I was naive – I just wanted to give this child the opportunity of life that so many others would have taken away.

The first challenge of having a disabled child is juggling the endless hospital appointments while trying to work full time. My daughter has a number of medical problems associated with having Down syndrome; two heart defects, hypermobility syndrome, optic nerve drusen, hypothyroidism and when she was eighteen months old, she was diagnosed acute myeloid leukaemia.

A friend who also has a child with Down syndrome once said to me: “I wouldn’t change him for the world.” Well let me tell you, if I could take that extra chromosome away I would. Not because she looks different or because she is cognitively behind, all my children look different and they all learn at different speeds, but to take away the daily pain she has in her lower joints, the constant worry that her heart may deteriorate and to spare her the gruelling seven months of chemotherapy that she had to go through as a toddler.

Post-cancer was when caring for her became really difficult. After seven months in hospital with a parent by her side her routine had changed. On returning home she would not go to bed on her own, she had become accustomed to having someone in the room with her. For years we tried to break this new habit, every night one of us would need to stay with her until she fell asleep – sometimes for hours. She has only recently started to go up on her own.

The other thing that changed after her treatment was her night-time routine. Like all our children she was sleeping through the night at three months but that same anxiety that stopped her from going to bed on her own was with her when she woke in the night – I can count on one hand the number of times she has slept through the night in the last eight years.

To begin with we used to put her back and wait for her to go to sleep. This would sometimes happen two or three times a night. Sleep deprivation is an awful thing, it affects your mood, increases your anxiety, and makes it difficult for you to concentrate during the day. How long do you keep trying to put her back until you give in for the sake of a better night’s sleep? Well we lasted five years – we have a king size bed, there is plenty of room for the three of us.

Recently the world has been a difficult place for us all. My daughter was on the extremely vulnerable list. In the words of her GP: “To catch this virus would be catastrophic for her.”

We have shielded her since the beginning of the first lockdown until the end of this year’s Easter holidays. To begin with it was fine, just the normal day to day challenges. My wife, a teacher, was at home, the sun was out and our children were treating it as an extra holiday.

However, life shielding became difficult once the first lockdown ended, when my other children went back to school. Home schooling was a nightmare, she missed her friends and her siblings and we had the added anxiety of worrying that someone may bring the virus back with them from school.

Worse was to come with the third lockdown. My wife was trying to home school our children and take Zoom lessons at the same time. Fortunately I have a supportive employer who allowed me to rearrange my working day so I could take on some of the home schooling – it took the pressure off my wife but I’m no teacher, I don’t think it helped my children much, in fact they probably taught me a thing or two.

The most difficult time for me was when again restrictions were eased, my children and wife went back to school and once again it was just me and my daughter. She spent the mornings home schooling with me in our attic office as I worked and the afternoons playing on her own downstairs.

I would check on her regularly, but I was always torn between my responsibilities of work and caring for her. Then one day I came down to find her in tears, I was mortified. I asked why she had not come to find me, and she shouted at me: “Because my feet hurt.”

The next day I bought some walkie talkie’s so she could stay in touch. My mind was at rest that if she got into trouble, she would be able to get hold of me. It was great most of the time, apart from once whilst I was on a Teams meeting, she came on the radio and said: “I love you.” Everybody stared at their screens trying to work out who had blurted that out!

I have been asked many times how I cope with the challenges of caring for my daughter and the honest truth is, I don’t always cope. What keeps me going is my beautiful, inspiring daughter, who lives life to the full and takes each challenge on board with a smile – she has come so far and achieved so much.

People see my daughter playing in the park, laughing and joking with her sister, her tongue slightly poking out and her legs wobbly as she runs, and they see a happy little ‘Down’s’ girl.

Now, don’t get me wrong she is happy and loving and she lights up my life, I am proud of her every day with everything she has achieved. However, what people don’t see are the tears when she gets home because her feet are hurting, they don’t see the getting up in the night and the effect that has on her parents or the medications, treatments and operations she has had and will continue to have throughout her childhood and into adulthood – it is like that part is invisible.

It is said that a wise person learns by their mistakes – let me tell you, a fool learns by their mistakes a wise person learns by other peoples. I never saw myself as a carer and as a consequence I never went to look for support, I just carried on being a parent, but help is out there. So, learn from this old fool, if you are caring for someone, help is, and will always be, available, seek it out, don’t suffer in silence.

There’s lots of support available for carers in Somerset visit Somerset County Council’s website.