My name is Tara Thompson, I’m 31 years old, mummy to Ava and Willow and married to one extraordinary daddy with another little baby girl on the way. So I count myself pretty lucky, however here are plenty of hard days that come along with being a parent of any child. With my first child, Ava, I remember stressing about short naps, being worried about fussy eating, and feeling overwhelmed about teething and tantrums. The list of worries goes on and on, tiny things seem like huge things due to lack of sleep and the pressure you put on yourself to be the perfect parent you always wanted to be.
Willow was unexpectedly born at 29 weeks and spent the first 6 weeks of her little life in the NICU. At 7 months she was officially diagnosed with Cerebral Palsy this is also when life as we knew it changed.
While we had a bit roller coaster of a ride initially with her newborn experience, the first few months were like being a parent to any other child. The same worries were there and the same hard days were relived. It was when Willow was diagnosed at 7 months that life as a parent as we knew it changed. A whole new journey began for our little family, one that has opened up our eyes to a whole new world. The things we felt were huge deals before weren’t a problem anymore and the hard days we thought we were having seemed easy in the scheme of things. Not to say that these days were insignificant and unimportant- being a parent is tough but being a parent of a child with special needs changes your view and it toughens you up, as there are many hard days along the way. It’s a different kind of hard.
Now I worry about therapy appointments, the tightness in Willows body, her ability to move on a certain day, fitting therapy and physio in at home on a daily basis, what park can we go to, will it be accessible for her in some way, tantrums due to frustration, pain in her body, future medical interventions, will she walk one day, when will she need a wheelchair, who can look after my other daughter on appointments, should she wear her afos or supportive shoes to a certain place, did I do enough therapy today, why is her leg so weak today, why is she so stiff I can’t put her shoes on, do I bring her walker, where can I put it, will she be too fatigued, why is she crying again, what toy could she play with that won’t upset her, will she be able to play with it using one hand… is she in pain? The list is endless and every day your mind is consumed at some point with thoughts like this.
In the beginning all of these types of worries were so consuming and the hard days seemed more like hard stages or weeks. But I think it is normal. I think this is needed to prepare you for what a life with a special needs child looks like.
There isn’t a normal day anymore, there isn’t a day where something doesn’t worry you and gone are the days where the hard days revolved around naps, play dates, teething and the usual tantrum.
I have learnt that the particularly hard days or hard periods are needed. Needed to let you grieve at that point in time, needed to give you fresh perspective, needed to let you be angry and upset, but most importantly they are needed to make you stronger. Stronger so the next hard day is a little further away, the next hard period is a little shorter and you’re able to handle even better.
I have also learnt to accept the hard days. I used to feel like a failure for getting so upset and for feeling like I could not deal with Willows diagnosis. But the reality is that it is needed and I know that now. Sometimes you need to admit defeat, accept that it’s too much and that it’s just unfair. It is all a part of the journey. So have a cry, be angry, talk to someone, let others know that you are struggling, give yourself and your child a break from therapy, give yourself a break in general and vent to the world if you need to. But know that it doesn’t make you a failure, know that these moments are absolutely needed to recharge you and lift you right back up again.
I am still learning on how to cope with the ‘hard days’ but what I have learnt along the way and am 100% certain of is that they make you stronger and happier; more joyful days with fresh clear perspective are waiting for you just around the corner!