One of the things that is said to me on a daily basis, be it by friends, family or caring strangers who follow Jaxon’s Journey is that I’m amazing or something to that effect.
The truth is I’m not amazing. I’m nothing special. I’m just a regular first time Mummy who has been thrown into the daunting world of caring for a child with a lot of medical needs.
Don’t get me wrong, it’s nice to be told that my efforts aren’t going unnoticed or that my strength and determination to fight for my child inspires others. When I’m having a down day and I receive messages such as these they lift me, they keep me going and encourage me to keep pushing forward when I feel like my energy reserves are on zero. Some of the kindest, genuine, most empathetic people follow Jaxon’s page on Facebook from around the globe and daily their comments fill me with confidence, love and hope, especially when these things feel in short supply. I wear my heart on my sleeve, I’m an open book in the hope that sharing our story and raising awareness may reach somebody in need and allow them to feel a little less alone on whatever journey they’re on. I’m a fixer, I like to help people. I’ve always been the same.
But that doesn’t make me amazing.
It’s a daily battle to access the services Jaxon needs, it’s a never ending cycle of appointments, phone calls, emails, letters and research. It’s tiring, it’s monotonous and the future is pretty terrifying from where I’m sitting. But no more than we asked to be dealt this hand, Jaxon didn’t ask to be born, he didn’t ask to be brought into this world with a handful of complex diagnoses that come with a truck load of uncomfortable symptoms.
On the outside it might seem like I totally have it together and I’m coping with every single challenge that is thrown our way. But on the inside it’s very different. Behind closed doors I scream and shout, I snap at those closest to me, I push people away. Many a time I’ve collapsed in a heap, the weight of my emotions too much to carry and I break down uncontrollably to the point I can barely catch my breath.
Then eventually, I pick myself up, dust myself off, take one look at Jaxon and carry on because he needs me.
But that doesn’t make me amazing.
I battle with constant inner turmoil. I ask the questions “why me?” “why him?” “what if?” “what did I do that was so wrong?” Not because I’m anything special that makes me immune to the pain that the world of caring for a special needs child has brought me. Not because I’m anymore deserving of a child that doesn’t have complex needs. But because Jaxon doesn’t deserve this. He’s a tiny baby who deserves a shot at a normal, pain free life just like every brand new baby.
I will always feel some level of guilt for his hypoxic injury. I will always wish I did something sooner to prevent the vast damage to his brain. I will always wish I wasn’t talked out of being induced by a doctor who was supposed to know best. I will always wish that I hadn’t talked myself out of going to the hospital earlier on the day he was born. I will always wish that the fear of coming across as an overly anxious first time Mum didn’t invade my thoughts hours before and prevent me for making the call to the hospital hours sooner.
That guilt will always be a part of the driving force behind my determination to do everything in my power to ensure Jaxon has the best life possible and that he reaches his full potential. I will give every inch of my energy, my love, my everything to give my son the best chance of a fulfilled, happy life.
But that doesn’t make me amazing.
I’m just me. A Mummy trying to do her best for her son.
I see where the comments come from, I see why people do tell me that I’m amazing, that they’re inspired by me or that they’re proud of me. I see it because when I read blogs by other special needs parents I think exactly the same about them. I read their stories and I think “wow, you’re amazing. How do you do that?”
I read stories on my Facebook timeline by Mummies and Daddies of neurotypical children. I see their hardships, their rants and the way they deal with their challenges and overcome them. I read in awe as I think to myself “amazing”.
Me fighting for, caring for and loving my son doesn’t make me amazing. Everybody is fighting a battle behind closed doors, no matter how big or small. Everybody is facing or has had struggles in their lives. Nobody is immune to pain and suffering. The tough times don’t discriminate. I’m no different.
The truth is we’re all just trying to do the best for ourselves, our families, our children, our friends, those in our lives who we love.
If that makes me amazing, then you’re amazing too!