Mum worry is the hardest. It comes hand in and with the overwhelming sensation to protect our children from all of the terrible things that life has to throw. But what happens when we simply can’t? Often life doesn’t pan out how we planned it and there are going to be things that we just cannot protect them from.
My eldest has been dealt some pretty tough cards from life. I mean at 6 years old he has seen more heartbreak than most fully grown adults. In 2017, at 2 years old he lost his Nan to cancer. Two years later in 2019 we said goodbye to too many close people including his baby brother. Imagine having to sit down your 4 year old and tell them their brother has died, how do you break the heart of the person you are supposed to protect? I felt guilty and heartbroken twice over. Death became normal from this moment and he understood it way more than a 4 year old should. I wish I could have protected him from these tragedies, but I couldn’t. Instead I had to watch as my happy go lucky child cried himself to sleep because he missed his brother. Hold him whilst the anxiety set in and try and tell him everything was going to be okay. Both life and grief simultaneously stole his innocence and hate that for him.
It couldn’t just stop there though could it? No of course it couldn’t. October 2020, the diagnosis. “I’m sorry but Oliver has tested positive for VLCADD”, the same disease his brother had, you know the one that cause his sudden death at 30 hours old. Breaking that news to him was the hardest thing I’ve had to tell him. As his mother I wanted to tell him he was okay, he was healthy and nothing bad would ever happen to him but I couldn’t because I didn’t know if it was true. I still don’t know, VLCADD is too unpredictable so there is no guarantee. I wish with every fibre of my being that I could switch and take his place. I would have done anything to prevent his life from flipping upside down like that. Why couldn’t it have been me?
I worry about his health immensely, if he says he feels ill or simply doesn’t look right my stomach drops and panic sets in, understandably. See our worst case scenario has already happened once before so occasionally it’s impossible to see it not happening again. I walk into every appointment expecting to get even more bad news and sometimes that does happen but sometimes it doesn’t. How would I even prepare him if the worst were to happen? I mean how could I tell him that his body is failing him? It honestly gives me nightmares and it’s no wonder the insomnia kicks in almost every night. I relive these vivid visions over and over again terrified that one day it will become a reality. Our reality.
The worry goes further than his health though, I am terrified for what all of this means for him. I worry that he will never feel like he ‘fits in’, whilst everyone around him is eating junk food and he can’t how will he feel? What happens if someone bullies or makes fun of him for having a condition? I would never want him to feel like the odd one out or like he’s not ‘normal’ but aside from taking him out of school and never letting him go to a birthday party ever again I cannot prevent him from these situations. Situations where people will have things that he cannot. The only thing I can do is to help him build the tools he needs to tackle these situations. I need to teach him that it is okay to be different, that it is okay to feel sad and angry but to not let it control him and to help him find happiness and positivity even when things appear bleak.
I worry that he may rebel because his diet and care are so strict or that when he’s old enough to take over his own care he won’t be able to cope. How would I handle these things? I honestly don’t know. It’s hard because I know I have to allow his wings to grow and give him the freedom that he deserves but I’m so scared for when that day arrives. Its going to be impossible to let go and I know that when I have to I will be filled with even more worries of different kinds. But I guess much like giving him the tools and skills to deal with social situations, I will have to give him the tools to deal with this too.
Mum worry is so damn hard and when your child has a condition so complicated. Whilst we can’t protect them from everything we can support them and give them the tools they need to get through the bumpy roads life has ahead, believe me they will need it. So instead of dwelling on what we cannot protect them from we should focus on helping them get through it. I wish I could tell you that I have a firm handle on it but navigating to this type of mindset is incredibly difficult so I guess I’m just learning as I go.
Searching for the light 