Life revolves around my special needs child. That’s just the way it is.
My daughter Nura experienced a profound hypoxic-ischaemic injury at birth, which means she suffered a lack of oxygen to the brain. At age 5 she has the functioning capacity of a three- month old baby, if that.
People have said we are blessed to have been given a special needs child
. Sure, would they exchange their typical child for a damaged one if they were asked to?
My mother would say these words are blasphemous and one should not question the lot you’ve been dealt, but I am human and certainly the questions were there (perhaps still are), only now I have made peace with my child, her condition and the life we lead. I wouldn’t change Nura for anything.Life with a disabled child
She has profoundly changed our world with her very profoundness! When she was a baby our world was very much like that of other parents of newborns. Feeding, changing, and exhaustion was what we lived. We could not go out though or take her shopping with us as she was already in quite a strict routine as she had spent a month in hospital. Her environment had to be controlled so she wasn’t exposed to anything that could compromise her immunity.
Already as a baby certain sounds upset her and we had to make sure the noise levels wherever we went would be acceptable to her. We couldn’t go to kiddies birthday parties as the shouting and screaming upset her, we couldn’t eat out as the music in the restaurants upset her and so it went on, till we just got used to it and avoided putting her in those situations.
Nura is an only child so being her parent is really all I know. A friend once said she forgets Nura is disabled because we make it all look so easy. We do make it look easy because we are meticulously organised. We have everything in colour-coded feeding bowls, specific feeding spoons for medication, porridge, food, snacks. Specific bottle teats for water, tea, milk or juice.
I write everything down in a diary, all feeding times, washing, bathing, therapy sessions are documented. For me that was the only way to stay in control of a situation I had no control over. By detailing and preparing all Nura’s food and making sure it is all written down I know what she will be eating and approximately when she will be doing what. The advantage of our system means she is also easier to take care of as she is so routined that you can tell what she wants or needs – well this works most of the time.
The self-sacrificing martyr in me pushes me to be the best mother and carer I can be, forcing me to want to take responsibility for everything involving Nura and her well-being. But over the past 5 years I have learnt not to sweat the small things, and getting upset about the way the washing is hung or what spoon is being used really doesn’t make a difference in the long run.
Others can take care of her – she may come home a little dirty with chocolate finger marks on the back of her vest and chips on the inside of her pants, but she is fine and has had a good day. I have learnt that I need to take care of me and make sure I am healthy and fit. I am still learning not to feel too guilty about wanting some “me time” away from Nura (other than work time). We have allowed Nura to sleep away from home only once and I am still to be convinced that she can do it again.
Juggling work and a disabled child
For any mom the conflict you face when you have to make the choice of staying home to take care of your baby or leaving your child with a stranger is the same. You are pulled in different directions and feel equally guilty regardless of your choice. I chose to return to work fulltime when Nura was a year old. We were fortunate to be referred to an experienced nanny who had previously taken care of a little Downs Syndrome boy. I went to work every day knowing my little girl was being taken care of in the comfort of her own home.
The guilt was no less, but the need to have some distance from my daughter, her condition and maintain some of my independence was a necessity at the time. After numerous changes to our lives over the last 6 months I am now ready to give up some of that independence, I am more mature and want to be more available for my little girl (note we don’t call her a baby anymore!). I am now working from home which allows me to be more in control.
As our nieces and nephews grow older they are asking questions about why Nura is the way she is. They want to know when she’ll be big, when will she be able to play with them. The sadness is there each time we see other little girls her age and wonder what she would’ve been like – her father’s teasing and competitive traits combined with my quiet, stubborn, compassionate nature to make a beautiful, wonderfully gifted little girl who could’ve been anything her heart desired. But her heart desires what it knows, and that is the world she is in – her perfect world.
Does society provide enough support for parents of disabled children?