Tonight I am sitting upstairs in bed full of cold whilst the boys are all sleeping and Mike is at work.. normally I would be trying to sleep or finishing the ironing but I cannot switch off lately for various reasons so I find myself writing as a distraction. I have tons of half written blog posts saved on my phone, but tonight I am taking the time to finish this one while I finish my lemsip!
I am more on edge than usual this last month, there are reasons behind this but some of them I cannot divulge at the moment. Others are things like Mike working more and more night shifts so I'm alone in the evenings with my thoughts for company and nobody to tell me I'm being irrational! Special dates and milestones coming up.. including that awful date he went into respiratory failure at Nippers which is looming. We've also had a few worries over Dylan's health due to him being exposed to very sick children at nursery, a concern over diabetes, the whole norovirus episode at Christmas.. and now me being unwell myself. How am I suppose to protect him from getting ill when I'm his primary carer and I'm ill myself?! Trying not to breathe on him is impossible when he flings himself at me and squishes my face for kisses!
It's also Chemo week here in our household AGAIN and that's the week I'm most on edge of all. We've had a good run lately with the Hydrocortisone combating the effects of Cytarabine but every cycle I doubt whether it will work properly. Completely irrational and illogical of course as there is no reason it should suddenly stop working. I also worry myself sick about his Hickman Line and infection.. I am so overprotective of that damn line it's like it's a fourth child!!
More and more nights I'm finding myself suffering insomnia.. reading things online about Cancer and other children suffering or even loosing their fight (sometimes people we know) and it makes me so sad for them and their families that it actually keeps me awake in tears. I cannot get back the naivety I once had to these things happening in the world. They are real and they are awful and if you are part of this Oncology or even Chronic Illness world then you have my sympathies and my prayers..
I find myself praying every night, to whoever may be listening.. I pray for the selfish things of course such as that Dylan will be ok, that this cycle will have no side effects, for good counts, for no infections, for his lungs to be healing. I pray for myself sometimes, for help with my anxiety, I pray I can sleep more than four hours so I can face the next day. I pray for my other two children, that I am being a good mum to them through all of this. I also pray for all those suffering.
I also find myself asking what happened and wondering.. why us? Not why did he get sick, but more why did he survive the unthinkable when so many don't? Why do others suffer so much and in what universe is it fair for innocent children to suffer?
Sometimes I miss the normality of living life oblivious to all of this. Cancer has hit our family before numerous times but when it's your child it is different. It has made me a better person in so many ways but it has also changed the way I see everything in life now. This is one reason I stay off Facebook and just use this blog. I literally have to stop myself from taking things people say to heart, such as.. 'is there anything worse than breaking a nail?'
I wish I could go back to being that naive and focusing on all the 'first world problems' as they are often called but I can't and I have to accept that those that haven't walked in these shoes simply cannot understand. I am fighting a battle in my head every single day between trying to live a normal life and what is now my new normal view of life.. <3
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