I would say the most predominant feelings I’ve had these last five years since the birth of my son have been exhaustion and guilt. Many others too of course - definitely love, and other positives like pride and happiness, but guilt and exhaustion are what I feel right now and they are what stand out over the whole period.

My son is profoundly disabled. I already had an 18 month-old daughter when we talked about having a second child. I enjoyed being able to do things with her and I worried that having another would be hard work and I wouldn’t have enough time for them both. Perhaps somehow I knew, I even said the words “What if the second has any additional needs and we struggle to cope?” So the biggest guilt I have is towards my daughter. I now can’t do all those things with her I hoped to do.

Holidays are practically impossible; days out as a family are tough. We have some weekend respite and some from the hospice but both are limited and the care at home is a constant battle. We have overnight respite twice a week but with both of these I’ve had to fight to maintain what I’ve been given or I fear it will be reduced. We get one or two days out a month with my daughter where we can go wherever we want (subject to distance). Otherwise it has to be wheelchair-accessible, and for a whole day out it needs a suitable changing place. Basically, near us there is nothing.

We do all we can to spend quality time with our daughter so I spend little time with my husband alone. There again the guilt comes in. I know the statistics for relationship failure where there is a child with disabilities is very high. I know we really need to work hard to keep going but there is very little time left for us.

I do very little for myself but where I do do something, like voluntary roles I’ve taken on and a sewing course I’m starting, I feel judged by those who help us, the authorities and family - as if they think I’m taking too much on. But I need these extra things to give me another focus, to take myself away from the constant battles for services and the treadmill of life. Feeling judged adds to the exhaustion of the fighting and never feeling I can relax, but then doing these things eases some of the stresses of life. Again, I feel guilty for doing anything for myself as it may mean not doing enough for my children or husband.

Last, but most certainly not least, I feel guilty that I don’t do enough for my son and that, as I fight for support so I can spend time with my daughter, it’s as though I’m always pushing him away, always palming him off on to someone else. He is totally unaware, he has limited understanding and is laid back and happy, so he’s more than settled so long as he has someone to care for him and talk to him.

It doesn’t stop me feeling bad though. Feeling like I’m just getting him ready to leave the house for school, then getting him ready for bed all week, then at the weekend he’s with someone else once or twice a month. When I am with him at the weekend there’s still so much in the house to do or things to do for my daughter I don’t feel that I do his therapy or play with him enough.

I work so hard to try and make everyone happy and loved, including myself, but it drains me and I never feel I’m doing enough for anyone.

The author is a mother of two who has asked to remain anonymous.