I obviously don’t mean prison,but then again it might as well be. Except if this were prison I have an indefinite sentence … 

Since my son was born I have lost count on how many hospital admissions Ava has had, it’s really been that many. I feel guilty Ava spends her life in a hospital cot, but equally, I feel guilty for her brother growing up on a hospital with his sister.

I have to admit that I am my own greatest critique. I question everything I do, and over analyse it all.

Recently it’s dawned on me that perhaps I’m selfish?

 Was I selfish to have another baby?

I ask myself this daily as I feel saddened by all the mums on my Facebook or forums that sign up to wonderful classes, just mum and baby. I feel choked up as I look at my beautiful boy, who society would class as “normal”, who  has to share me, or rather only gets half of what he should because I’m not only a mum but a nurse to Ava. 
Because of her complexity I can’t drag them both out to groups – it’s not physically possible these days (feed pump, suction machine, medications, syringes, nappies, spares of everything & I also should carry oxygen – not forgetting both babies and a double pram) not only that, I hate having to tend to her in front of strangers. People don’t understand and I hate being watched, I’d much rather someone ask me? Start a conversation, I LOVE telling people about Ava. Instead they look, horrified As they hear a machine whirring and I’m shoving tubes up her nose and mouth to clear mucus and usually vomit. 
It’s gross, I’ll be the first to tell you that, but, it’s essential to keep her airways clear and if I wasn’t there hoovering her out she would drown.

Groups can accommodate Ava, I’ve no doubt about that, but I just feel like an outsider. It’s very hard to be forced to the sideline and watch bright, happy, healthy children run around and my child can’t. I hate the looks of sympathy that are thrown my way. Don’t. I don’t need or want sympathy, she’s my daughter, she’s my world she’s the reason along with her brother, I force myself to get up in the mornings. 

Your child can walk, run, laugh all beautiful, precious things. But my daughter has Fought with every last fibre in her body to earn her place on this planet.

My daughter has been brought back to life on more then one occasion, she has so much depth and soul she is NOT defined by her illness.

So it brings me back to my thoughts. Was I selfish to have another baby? Does my son miss out on vital things developmentally, will all that goes on in my house have an effect on him? 

Usually at least once a day he will need a feed and Ava needs to be suctioned or tended to because she’s stopped breathing. I watch his perfect little face with  tears begging for me, and I just smile at him, hoping he smiles back. 

In my blind panic, trying to sort Ava I hope that he forgives me and realises just how special he is, and how proud of him I am already. 

I can guarantee you, despite the tears and hunger that precious little baby will always smile back at me regardless as to what’s going on around us.

I love my son.