I hope my special needs child dies before I do

My daughter Danielle brings magic into this world. Aged 27, she still believes in the Tooth Fairy and Father Christmas. She gives me so such joy and I’m proud to be her mother.

But sometimes, some terrible nights, during one of her monthly epileptic fits, I think: if she didn’t come out of it this time, if she didn’t recover, then maybe it would solve our family’s problems. I think to myself: I hope she dies before me.

I’m not proud of that thought. And I would be heartbroken by the reality. But I cannot help worrying about who will care for her when I die, and I believe I am not alone in my thinking.

Any parent with a disabled child who will always need total care fears the future. Yet few of us are able to make the long term plans that could set our minds at ease.

According to the FitzRoy charity, which helps people with learning disabilities to live more independently, only 25 per cent of parents of disabled children have care provision in place should something happen to them.

It’s not idleness or an ability to accept the future that’s holding so many of us back. The charity’s new study, Who Will Care after I’m Gone?, warns about the impact of service cuts on the quality of life of people with learning disabilities.

For my part, I worry that in trying to be independent of official support as far as possible, I have prevented my daughter from staying in the system enough for her to be considered a priority.

It is every mother’s natural instinct to protect her young, and if your children are healthy, you know they will one day be able to manage without you perfectly well.

But those like Danielle – who has cerebral palsy and autism, as well as epilepsy, a mental age of about seven, wears hearing aids, and is so visually impaired it is believed she only sees in 2D – can never be truly independent.

In my case, Danielle’s disabilities are not the only problem. My husband Calvin died in 2014, aged 63, of lung cancer. Then, last April, I learnt I have a rare condition called myelodysplastic syndrome (MDS), a blood disorder that causes a drop in your number of healthy blood cells and is sometimes called pre-leukaemia.

It’s very rare, and I am currently waiting for a bone marrow transplant to treat it. If successful, it would be a cure. But the operation carries a 10-15 per cent mortality rate, and if it doesn’t work, my condition could transform into leukaemia.

So inevitably, I’m focused on Danielle now. I have to know she will be safe, whatever happens to me.

From the moment she was born, when I was 26, my husband and I tried never to demand too much support. She was born blue, very short of oxygen, her cord wrapped around her neck, and doctors saved her life.

We were just delighted to have her. Months passed and her sight disability became apparent, and gradually we learnt the full extent of brain damage caused by her shortage of oxygen during labour.

But we never looked for anyone or thing to blame. It was one of those things. Danielle was our daughter and we loved her.

I admit there were early moments of bitterness when I’d be walking around Petersfield, the Hampshire market town in which we live, with her in my arms and I’d see other mothers with four or five healthy children. But you adjust, you get on with life. And I still felt lucky to have her.

Three years later, in 1991, our second daughter Hannah arrived and was healthy in every way. Calvin was over the moon about both girls; he was such a loving father.

As the children grew up, Hannah took over the role of big sister. It was increasing obvious Danielle would never be able to look after herself. She couldn’t understand the concept of stranger danger and wouldn’t think to look out for cars when crossing a road.

But as a family, we didn’t know anything else, so we just got on and coped. When it came to applying for schools, a social worker helped us get Danielle into a playgroup, and then a special school.

When she turned 19, we got her a place at On Track, a local day and community support centre run by Fitzroy. Here, she could learn life skills and make friends with others in her situation five days a week.

But we were never in contact with social services otherwise. We didn’t shout or make a thing about needing respite care – we always thought others needed that more than us.

In hindsight, perhaps we should have kept Danielle in the system. Because she got lost somehow, I think.

Calvin was diagnosed in 2012. While he was having treatment in hospital, Danielle had a serious seizure with hallucinations.

We hadn’t told her of her father’s illness but I believe she sensed her world was changing and it caused a reaction.

I had a horrendous week – caring for Danielle, worrying about Calvin, and coping with the realisation I simply couldn’t afford to put my head in the sand about the future. We had to get her on to the sheltered housing list. So after Calvin died, I turned to a local social worker, and last August she found a local home and I applied for a place.

But the application was turned down and I was told Danielle had to live at home, with the addition of offers of respite care for me. Clearly this was more economical for the council, but it didn’t solve the worry of what would happen to my daughter long term.

Then came my MDS diagnosis and the discovery I would need up to six weeks in hospital for the bone marrow transplant, followed by at least three months recovery time, and no work for a year.

The questions rushed through my mind: how could I care for Danielle? How would she manage the uncertainty? I was offered an emergency six-month placement in July, so we duly settled her in. But when that runs out in February, who knows what will happen? Where will she go?

She needs stability and a long term advocate who can plan far into her future, so that neither Danielle nor we have to worry.

Would it have been easier had we constantly knocked on the council’s door for respite care and other support? It’s difficult to say.

I worry that because we didn’t shout loudly we have slipped through the system and cannot get back in. Yet so many families like ours don’t like to shout or demand, we just cope with our situation.

Hannah has grown into a very caring young lady, and has recently started work for FitzRoy. She would step in if she had to - but I don’t want her to have to.

Our family is at crisis point. The horrendous past two years have reinforced to me that life is precious but very short.

Children like Danielle need some other voice out there speaking for them, not just their mothers and fathers. Because we cannot live forever, for them – however much we’d like to.

As told to Victoria Lambert