Triggers

There is a lot of grief that lives alongside being a special needs parent. Grief is something I am personally working my way through and something that I most likely will talk about in more detail another time. It is a very emotive and complex feeling that I live with.

As I’ve muddled through the past (nearly) four years as a special needs parent, I’ve realised that my grief will come and go. Some days, months, years I will sit a lot more comfortably with our life. And I will feel completely blessed and happy. Milestones for everyone else will come and go and instead of celebrating them, I know that I will celebrate other life blessings and achievements with Louisa. And they will be wonderful. And I also know that as long as she is happy and thriving in her own way I will not always care about any of the external noise in the world. The world really is too noisy sometimes. I’m starting to like that we are living life at a slower and quieter pace.

It’s taken some time, but I have learnt over the past few years that the inchstones we experience with Louisa are just as wonderful as the milestones. That there is so much beauty in seeing life from a different angle, a much less showy life. I love our life – warts and all. In all honesty, I don’t know if I would appreciate it like I do now if I hadn’t had Louisa showing me the way. And if I’ve learnt so much in such a short period of time- imagine how much more we have to learn from our beautiful girl in the future.

But I’ve also realised that there will be some chapters in our life that will always be harder. And that there will be chapters that will stop me in my tracks for a moment, to pause, to reflect, to cry and then to continue on with our lives embracing our special kind of normal.

But – if I’m being honest – I can already see some future triggers of grief that I know I need to prepare myself for. Of course I’d be lying if I didn’t say that sometimes I think about the things we probably won’t experience in the future and weep. I know that some of the big life events in everyone else’s lives will bring a little bit of sadness to mine. And although I know it won’t always feel as raw or as painful as it has done in the past or even how it hurts now, I can’t imagine these feelings will ever completely go away.

I acknowledge that.

However, aside from the big milestones I know will trigger my grief, I’ve recently had lots of surprising triggers that I wasn’t expecting. When I say triggers, I mean moments that bring my grief on harder. I guess being in lockdown and the isolation we have felt as a family with a disabled child has heightened my awareness and exposed me to these triggers.

And, as it turns out, other children turning four has been a big grief trigger for me.

You see, I remember being pregnant and having a few friends – and other people I followed on social media – also being pregnant. Now those children are turning four. And I’m being bombarded with images and stories of little four year olds ‘no longer being threenagers!’, who are all ‘so grown up’ and full of ‘sass’ and ‘attitude’ and all the lovely little things that four years olds are. I love that age. I remember it well with Fred.

But my little girl is turning four and she isn’t like those other children. And it hurts my heart.

There – I’ve said it. It actually hurts my heart.

I know that my little girl’s personality is developing every day, she is utterly hilarious. She has the purest soul and she fills my days with utter joy. She has the best dance moves and can be such a pickle! Louisa is so cheeky and her eyes smile at me like no other eyes I have ever known. Her affection and love towards people is the most beautiful thing I’ve ever witnessed. I feel so blessed when I am in her presence – I know that sounds so incredibly over sentimental but it’s an honest emotion I have always felt around my girl. Between us, we don’t need words as Louisa and I are connected on a much deeper level than I have ever experienced with anyone else. She is my soul mate. I couldn’t be without her.

And I am so grateful and feel so lucky that she is mine – yet I’m still sad by other children turning four. How does that work? I really don’t know. Emotions are crazy things.

I also don’t know what the answer is here. I don’t want to unfriend every single person I know with children a similar age as Louisa. I don’t want to avoid family or friends with children the same age as Louisa. I don’t want those people to feel awkward around me. Of course I share their joy at their children’s achievements. I love their children. And it’s not their fault that I feel like this sometimes. Because this is our life. This is what it is. I know I need to learn to sit with this. There is no escape and I need to deal with it because there will always be the next thing. Next year it will – most likely – be children turning five! I know this.

Instead I’ve got to remind myself how incredibly lucky I am that I am getting to celebrate birthdays with my Louisa. That I genuinely have no idea if she will live to an old age or leave me early. My biggest fear is that I won’t have her with me. And because of that indescribable fear that niggles at the back of my mind, I know I need to cherish every moment with her as best I can. David and I know that we will always be the lucky ones that we get to share our lives with Louisa.

I know that. I feel that and I will always be grateful that Louisa is our girl. Always.

But, these triggers hey….. they knock you down sometimes. But I will always get back up. My little girl is so worth it.