There’s nothing quite like it is there? Being a mom is a tough job, no argument there. Those snuggles with your baby and the joy of playing, crawling around the floor, laughing and giggling make up for the constant worry and the constant use of ‘no’. To be lucky enough to give life to another human being is a remarkable thing.
Being first diagnosed a short time after having my child was a bewildering moment. Sitting in the surgery with the Dr saying ‘I’m sorry to say but your tests have returned a positive result for Rheumatoid Arthritis’ came as a surprise and relief. Or so I thought! In my head, it was going to be much more sinister result. As so many others who have never experienced RA, to me it was not a problem; just a few painkillers and that would be it. After all, so many people have it, right? Wrong!
RA robs you of the time you should be holding and lifting your child. Takes away the ability to crawl around the floor playing and even leaves you unable to dress your baby or cradle her safely in the bath. In the early days, the flares are sporadic; giving you glimpses of ability which makes it even more agonising when it is taken away. As a mom, there is a switch that makes you instantly feel guilty…about everything, but add to that the inability to do the things for your baby that you ‘should’ be able to and the guilt is overwhelming to the point of developing what was later realised as Post-Natal Depression.
As your child grows though, you adapt and so does she. You both find ways around things and she becomes your inspiration and your teacher. Children learn quickly and adapt to their environment in the most innovative of ways. They learn that they can climb your body to get comfort and learn where to put their limbs to help you dress her. They learn to read your mood and know instinctively when you need help…and you don’t even ask for it. Don’t get me wrong, it’s not been all sunshine and roses and I know I am incredibly lucky with the support I’ve had from the husband and there are many out there that do this alone. Hats off to you all!
Sitting in waiting rooms and hospital wards you reflect and contemplate how much time you are not with your child and not able to give them what you feel you ‘should’. There is no complaining and before you know it, they are more mature than most adults you know. Still, the guilt lingers as people mention ‘young carers’ and ‘getting support for your child’ but what do you do when they refuse? According to the kid, she’s not a young carer and she doesn’t need support; she has a mom, Dad, a supportive family network around her and that’s enough. You gotta love that kid!
As a parent it is our duty to embarrass our kids and I certainly make every effort for this! However, there are times that you don’t use sticks or wheelchair when you really should, just so people don’t stare. The thought of her being embarrassed by me in this way is crucifying although I know she’d tell me off for that! Even though attitude towards disability has improved, there is still a long way to go. RA is described as one of many invisible disabilities as most of the time, at first glance, you look the same as everyone else. Only those who know you recognise the pain on your face and the way you hide your hands, stay sitting and avoid situations where you have to stand for any length of time. The verbal abuse you get for parking in disabled spaces (with a badge) because ‘there’s nothing wrong with you’, ‘you can walk’ or ‘freeloader’ is unfortunately common. A friend of mine laughed when I said I was lucky to have a blue badge; she thought I was mad for seeing myself as lucky to have a disability. What I meant is that I am lucky to be able to access places because of being able to park close by to reduce the pressure on my feet, knees and hips, or being able to access wider parking spaces to be able to swing my door open wide so I can get out of my car without some impossible yoga pose, contorting your body to wriggle out between cars parked 6 inches apart! We still call it my lucky blue badge!!
You fear that there will be a long lasting detrimental effect on your child because she has had to develop maturity and independence quickly. You feel they will miss out on things because you can’t physically join in and you look on with envy as her Dad does all the ‘fun’ stuff. As she grows and goes through school you witness her emotional vulnerability and lapses in judgement and you realise that actually she is ok and she experiences life as any other child. As long as communication is honest and open, like any child, she will be fine. More than fine in fact!
With the kid now approaching her teenage years, there is no illusion that there are testing times ahead but she is still my rock, my inspiration and my baby.