I think the last month has been the hardest out of all the months since all this began. The first month was pretty much spent in a state of shock and disbelief. And it was so full on with being in hospital and then coming home to prepare for her big surgery. After that we were still running our business so we didn’t have too much time left on our hands to process much else. And since then we’ve closed the shop, have had a few more scan results that weren’t flash and we’ve now found ourselves with a lot more time on our hands. As much as we celebrated Christmas and appreciated being all together it wasn’t such a festive season. It used to be the time of year when Andrew was on holiday from work, we had plenty of fun things planned and we would be eagerly anticipating the year ahead and what may happen. It’s been a huge adjustment all being at home together, and not having jobs to take us out the house each day. And Adelaide not being well enough to take very far. The stress of all of this has been far greater than we ever could have imagined. I can’t say I ever really thought about what it must be like having a very ill child. I would have assumed it wasn’t easy but I wouldn’t have been able to guess just how much of a toll it can take on every aspect of your family life. There is no guide book offered to the family that’s just had their life fall apart. The plans, the hopes and dreams all suspended. The sadness, fear, anxiety, anger and confusion turning us into people we barely recognise some days. And there are plenty of days when everything seems okay, where we feel like the family we were prior to this. I miss being able to look at Adelaide and imagining her when she’s four, or starting school or what she will be like as a teenager. I do this with Ava and Elliot, but not her. I don’t want to think about something that might not be. I’ve thought so many times of setting up her bedroom for her as I know she would love to have her own room even if she wouldn’t sleep in it without me. Currently what should be her bedroom is used to store stuff and Andrew sleeps in there. But every time I think about it something stops me. I have the thought that if we lose her at least I won’t have a bedroom that needs to be packed away, or a room I can’t bear to enter. And it’s these thoughts that manage to taint most days. Watching her gleefully opening presents on Christmas day and wondering if she’ll be here for the next Christmas. And I’ve had plenty of people tell me it’s stupid and pointless to think that way, that we never know how long we have with any of our children. And honestly, I think it’s stupid when people say that to me. I don’t think this way about Ava or Elliot. Of course Ava could get hit by a car on her way to school or we could have a crash etc. But neither of them have something terrible growing inside. And knowing Adelaide has this damn tumour which is so enmeshed with all the vital structures in her chest, well it just changes the way we think. And making the most of every day can be hard at times when you have the days you just feel so drained and devastated by all that your child is facing. Anyway the reason I’m writing all this is because I’ve found it really hard over the past few weeks to write much. Posting cute photos has been way easier. I haven’t wanted to sound all negative and depressed because you know, for most of the time we aren’t on the surface. We are getting on with our life as best we can, just with some major changes. What I did want from this blog though was the ability to share what it’s like for us. Not because we’re special, not because we like attention (we are usually very private people) but because I hoped it may just help another family who finds themselves on a similar path. We get told what we shouldn’t focus on and to just be positive but it’s never that easy. And you can feel like you are going crazy with the sheer amount of ups and downs in each day. I have looked at other mothers I have met during treatment and to me they seem so composed and strong and I have thought that they surely can’t be thinking wild, crazy thoughts like I am. They seem so positive, they mustn’t be consumed by thoughts of their child dying or imagining what life might be like without them. But maybe they are. It feels like a terrible concern to voice though and it’s not the easiest thing to discuss, even with those closest to you. Perhaps this blog will one day help someone else feel a little less alone with all the daunting thoughts whirling through their mind for many hours, every day.
Posted on: Tue, 13 Jan 2015 08:12:50 +0000
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