I’ve tried a couple of times to write this, but it seems these days I find it harder to put things into words. So here goes again.
A few days ago, S turned 9. NINE. It barely seems possible. That makes him halfway to manhood. Wow.
In years gone by, I’ve found the lead up to his birthday difficult. As much as I want to celebrate his birthday, it’s awful to remember the day of the birth. It’s weird that a day can be both at the same time incredibly precious and special but also traumatic and sad.
However, it’s so much easier as the years have gone by. I still remember, but the remembering isn’t as hard as it used to be. And now I’m able to focus on how fabulous it is that my beautiful boy has reached another milestone.
This year though, a new curveball came my way. In the weeks leading up to his birthday, S started to talk gloomily about his birthday. He told me that he hates his birthday because if he hadn’t been so sick when he was born he wouldn’t have CP – which is of course, quite true – but it’s hard to hear my gorgeous boy talk like that without feeling all distraught myself and feeling that any responses that I could give him would be woefully inadequate.
A friend recently shared the abstract of an article about CP and adolescence with me. I don’t want to breach some sort of copyright by copying and pasting the whole abstract here, but here’s the first couple of sentences. Click on it and you can read the rest of the paragraph.
Pre-adolescence is the beginning of self realization that the cerebral palsied child will never be “normal.” Leading questions and unexplained anger begin around the age of nine to eleven years, followed by disbelief, denial and family rejection.
Wow. And here I am. It’s not much help to my boy that recovering from glandular fever comes along with its own set of issues. His energy levels are still so low and he’s very susceptible to melancholy and anxiety whenever he gets too tired. As a result of this and a realisation that neither he nor the school were coping very well with his level of fatigue I homeschooled him for the last 3 weeks of term for 4 days a week. And for all of next term I’ll be doing the same thing 3 days a week in the hope he’ll finally recover and be back to his normal cheeky self all the time.
But it’s such a tricky time I’m realising because his ‘normal’ self is changing as he moves into this pre-adolescent period and I’ll be honest, I’m just quietly freaking out about how important it is that I handle things really well over the next couple of years to avoid him sliding into true adolescence with anything other than good resilience, a strong self esteem and most importantly, a happy soul.
It’s times like this I truly wish he wasn’t my first born. That I knew a little more about what to expect and how best to handle things, but instead, I’m flying by the seat of my pants and ordering books about raising boys and making more appointments with his psychologist to try and give him as much support as he needs. While simultaneously also doing as much as I can to try build his immune system to try and get his physical health into as peak a shape as well as his mental health!
I don’t want to sound gloomy or to suggest that he’s always sad. He is a gorgeous, gorgeous boy and he’s mostly very happy. He loves playing with his younger brothers and is developing a love of music that has meant he and M have started their own punk rock band. S writes the songs and lyrics and M is the lead singer. We’re getting S a keyboard for his birthday (late present, been busy, shopping next week for it!). He enjoys reading books and still wants to be an event organiser when he grows up. I love that he’s named the back deck that his dad built for us over the last few months as ‘Decklands’ – where many concerts and special events are organised and he’s always the first to come up with great ideas of things for us to do together as a family. I am still hopeful he’ll make some more meaningful connections with his peers at school, but for now, we’re doing OK.
And as a good postscript – once his birthday arrived, there was no sadness from any of us. At his request, the whole family spent the day at the Royal Melbourne show. We had a brilliant time going on rides, watching circus performances, visiting the MasterChef kitchen, patting farm animals, trying ‘Sport Stacking‘ (the lovely Sport Stacking guy even gave Satria his own free set of cups that he’s been loving practicing at home), choosing showbags and then watching a rather impressive Motorbike performance and Fireworks show late into the evening. S declared that it was his ‘best birthday ever’ and even though it took him (and me!) two days to recover it was definitely worth it.
I’m so proud of my boy for being such a beautiful, caring, kind, funny and sensitive 9 year old. And I feel blessed every day to have him in my life and in my heart. This week another of the mums that I’ve met on my CP journey had to very sadly farewell her gorgeous son who passed away just a couple of days after his fifth birthday. No mother should have to lose her child. And it’s a poignant reminder that every day you have with your children is special and you need to do your very best to always celebrate what is rather then dwelling too much on what otherwise might have been.
So here’s cheers to another wonderful birthday to my boy and I’m sure that we will have an amazing year ahead x