All over the place

Days are long at the moment. I’m virtually awake for the full 24 hours, which gives a lot of time for thinking and a lot of time to run the full spectrum of emotions.

Lack of sleep is probably the biggest challenge – my mood is completely affected by how much rest I’ve managed to get. BabyGirl hasn’t been settling in her bed, so my nights have felt endless. And lonely here in hospital by myself, without the family support I receive during the day.

I am worry, worry, worrying about everything. Is the treatment working? Is my BabyGirl going to be ok? How am I going to make it through on so little sleep? How can we cope as a family? Is there too much pressure on my husband and mum as they pick up the slack? Is my ToddlerGirl ok? How can I make sure she gets enough from me during this time?

I have moments of real despair when it all feels too overwhelming. I want to run away or hit pause but of course I can’t. Three weeks feel like an eternity. I cry and cry and think I can’t deal with it all but realise I have no choice but to.

I give myself a talking to and get practical, trying to make plans for managing these tough weeks, for structuring our days, for ensuring some normality for ToddlerGirl and some breaks for the rest of us.

I feel hugely grateful for what we have. BabyGirl seems to be doing well. I have wonderful support. This will hopefully be a short term blip in our lives.

I see the children and families on the long term ward and feel guilty for feeling so sorry for myself. They are dealing with something even bigger, I should be able to cope with our situation.

I feel a deep fear that our situation will become worse, that BabyGirl will suddenly become very ill and we will be one of those families. Or worse. A fear I can’t bring myself to verbalise in any way.

I feel enjoyment in small moments, pockets of normal life. Playing with ToddlerGirl. Sitting in the sunshine. Seeing friends. Writing.

I long for some quiet, just silence with no beeps or voices. Hospitals are 24 hours a day noisy places. I feel guilty for wanting to crawl into bed on my visits home rather than play with ToddlerGirl.

I feel helpless watching my BabyGirl poked and prodded every day. Seeing her flinching and crying as yet more needles are stuck in her. Telling myself how necessary it is, that she won’t remember all this.

I feel joy and so much love getting to know my BabyGirl. Watching her discovering the world around her. Seeing her first smiles, wonderful huge grins spreading across her face, responding to me, her daddy and big sister.

I am emotionally exhausted as well as physically so. I am up and down and all over the place. I have to hang on and get through this for the next three weeks and hope hope hope we are back home and back to normality then.

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