Every now and then I find myself looking through Ava’s memory box and I have a good cry.
I always rummage through and reflect back on the moment in time she first wore her teeny tiny sleepsuit, she was 2 weeks old and she had worn nothing but a nappy since the day she was born. I always have this huge sense of loss, she is my beautiful, courageous little warrior, but I always feel like I was the runner up compared to other Mum’s.
I had such dreams, such visions of motherhood and childbirth, none of which ever materialised. As I sit writing this, we are on day 134 of a hospital admission. Collectively, since the day Ava was born she has been in hospital, as an inpatient for a year – solid.
It’s hard to see other people with their babies, doing and going through exactly what I wanted, what I desperately felt I needed to complete me. If I could go back and do it all again, of course naturally I wouldn’t want to change Ava, but things would be so different!
I’ve blanked out the first few weeks of her life, and try as I might, I can’t think about what happened. I remember being in so much pain, I was distraught that this baby was no longer in me and I had yet to meet her. I didn’t want to meet her though, and that, now, is so poignant in the journey of Ava. I avoided her at every cost, until the midwives and Neonatal nurses forced me into going to see her. But NICU was a scary place, it was full of tiny, precious babies, most of which had made their appearance early, and then you had Ava. A big question mark hovered above her incubator, because no body knew why this new born baby was struggling to sustain life despite the 100’s of tests she had endured since birth.
People closest to me I know often struggle to understand why I feel a sense of loss, even though I’ve gone on to have my “normal” child, and I guess that’s because Ava was my first, and any child after almost feel like betrayal, like I’m betraying Ava’s existence, almost like I have to justify the reasons as to why I’m bringing another child into the world and how they will benefit her. It’s like I have to prove they have a reason, and existence to this planet, and not simply, just because. Just because I want to have children – regardless.
It wasn’t until the other day that I bumped into an old familiar face that I realised its okay to want to have many more children when the time is right. Whilst Ava was an Inpatient when she was fist born, she spent 3 months on Badger Ward at GOSH. This ward deals specifically with respiratory issues, and there was a young boy there who was not much older than Ava herself. He was one of the patients you knew were there for the long haul, just like my little girl.
His mum and I would speak most days, and was a lovely lady who doted on her young son, we got to know each other quite well infact, and she had two older children, not much older, but older none the less. He had very complex respiratory issues and had slight brain damage, to a degree at the time she was the only person I’d met who understood how it really felt to have a medically complex child, with lots of additional needs. Her little boy didn’t smile at her, not because he couldn’t but because cognitively he wasn’t aware of what it meant to smile, and there was Ava, who you could tell was desperate to smile, but simply can’t. So, she knew, … she knew the knots I feel in my stomach witnessing other children happily smiling at their adoring audience, knowing that it will never probably be like that for her child.
I haven’t seen her in well over a year, and I heard her voice the other day and she stopped me, shocked to see me… I was actually in the middle of helping a nurse wheel Ava in her cot and mountain of equipment to outpatients for a hearing test. We briefly spoke, and I told her that I had had another baby, who was now 9 months old.
For the first time ever she was a person who didn’t look shocked, didn’t say ”Wow you had them close together”, ”you’ve got your hands full” – she actually congratulated me and said, ”good for you..” And I was quite taken back by that. It was at that moment I allowed myself to think, you know what, I do a bloody good job, granted I have my moments, but I’m raising (hopefully !) a happy, healthy little boy, who is a joy to be around. He brings light in the darkest of hours and he is a happy little soul who falls in love with everyone he meets, and I manage an incredibly poorly daughter most days on my own. She echoed what I’ve always, always said about my situation, she said to me that it’s good to have at least one other child in these situations, because you can end up consumed and swallowed up by the under current of a medically fragile child. Locked in, in fear of what might be, what ifs, buts, and maybes.
I’ve closed the lid on her memory box again for a few more months. I’ll open it up again one day soon and mourn the loss of a child I thought I was having again.
For now, I am thankful for each and everyday that I have my children, regardless of a diagnosis or ailment.