"Let me be, Mum"

So sometimes it's easy to forget that Cadel is also an ordinary 2 year old as well as a two year with chronic lung disease, liver disease and sufferers from CF. 

Last week I had a few reminders! 

Cadel had a massive tantrum. It wasn't about anything in particular but it was a terrible two tantrum because he didn't want to have a sleep. He was so, so tired and was just fighting it so much. I was holding him as he squirmed and squealed at me for the half hour that it took for him to calm down. I kept reminding myself this is normal, this is normal and then it came to me, I'm not holding him down fighting with him as they needle his port or take some blood instead I'm just dealing with 'normal' two year old behaviour (if there is such a thing as normal two year old behaviour) and I smiled. I know strange that I'm smiling as my nerves are frayed by the screaming and squirming but I was happy in the fact that Cadel was able to be a two year old for once. 

The same week Cadel was having some bad dreams ( probably explained the above tiredness) and just wanted Mum to sleep in his bed to know that I was there. Again I was grumpy that I was having interrupted sleep but then reminded that I wasn't getting up to an alarm on his high flow oxygen machine or because his overnight tube feed machine  was alarming. I was getting up to my son who just wanted his Mum. It's nice to have those moments. To be a Mum and I know that as a parent we all take on many roles but it feels so great to be Cadel's Mum and not Cadel's carer. 

Another moment was letting Cadel play in the park with his friends and brother and sister. It was fantastic and heart warming to see him playing without a care. I can't say that it was the same for me in this instance. It was a park that was covered in sand. 

I was panicking on the inside about any bugs that could be hiding in the sand that any other parent wouldn't have to worry about. Resting assured that I was probably just being over cautious. 

I was panicking about the bugs or viruses left behind on the rails of the stairs as he climbed the stairs for the slide. Reminding myself that I had hand sanitizer to wash his hands when he had finished playing. 

I was panicking about the sand that was now everywhere and now making its way into the area around his button. Upon inspection I found the sand had made its way into the delicate area around his button but I decided it was bath time when we got home to make sure it wouldn't cause any complications. 

On the outside I was smiling and enjoying the park play but inside I was screaming with anxiety. It's a battle to control that screaming and anxiety and keep it on the inside but it is important to do that so that Cadel can be a two year old and not always be a sick two year old. He needs to enjoy the small things as so do we as we watch with so much delight as he discovers all the goodness that this wonderful world has and not just the terrible sterile hospital environments. 

It's also important for his big sister and brother to see him play and have those memories and not just have memories of treatments and seeing Cadel unwell. 

Once more I found myself letting go a little bit more of those little anxiety demons but know as any parent knows you will always worry for your child regardless if they are well or unwell and knowing to learn what I can and can't control is the biggest lesson I could I ever take from all that life has thrown at us. 

K