Raising a child with a life-limiting condition can be one of the most rewarding experiences known. It can also be one of the hardest.
We spoke to Heather*, a mum of one from the North East of England, about the complex emotions she experiences while raising her daughter, who has Batten Disease. Here’s what she had to say.
Throughout our parenting journey, grief ebbs and flows like a tidal wave, some days sucking us under, and other days being kind enough to let us float. Grief for the life we thought we would have, grief for the life our child won’t necessarily have, grief for the things that our child will miss out on. Grief for the future and for what may or may not be. The guilt we feel about feeling grief. It’s relentless. It’s endless. And sometimes, the dam bursts.
Our emotions are complicated
Parenting a disabled child is bittersweet, and our emotions are complicated. We’re proud of each milestone that many parents wouldn’t even notice, but at the same time, sad that our child can’t do what their friends are doing. Some days we can keep our emotions in check and feel semi-normal, other days, it all just feels too much to bear – and even getting out of bed is a challenge.
We feel guilty
Whether we feel guilt for doing something for ourselves, guilt for surviving and not thriving, guilt for losing our temper, or guilt that our child can’t do what his or her friends are doing – guilt creeps up on us like an incoming tide. And although we know we know it’s a destructive emotion, it’s sometimes impossible to tame.
We’re tired. So tired. This is a chronic tiredness that doesn’t respond to coffee or energy drinks, a tiredness that eats away at our physical and mental health, a tiredness that if you’re not careful, sucks away at your very soul. But somehow, through it all, we keep going and keep smiling – because the love we have for our child powers us through.
We worry about everything. From how our child will cope as they grow older, to what the future holds for them generally. We’re hyper-vigilant, and never fully relax, just in case we need to take action. Worry often becomes our life norm, and can be heightened by what else is going on in the world.
We feel lonely
Parenting can be a lonely place. Parenting a child with a disability or additional need can be even lonelier. Old friendships can change, people don’t always know what to say, and before you know it you can find yourself isolated and cut off from society.
But the truth is, we’re not alone – and there are hundreds of parents and carers just like us all over the world on this crazy journey. We might not have a manual on raising a child with a life-limiting condition or disability, but we have each other.
*Name changed to protect privacy.
The Friendili app connects families who experience similar health conditions and disabilities, like autism and rare genetic diseases, to chronic illness and mental health.