Survival

My family, I reckon, are born fighters. 


Between my immediate family between us we have survived pneumonia (repeatedly and in varying severity), multiple organ failure, sepsis, cardiac arrest and a stroke. The worst culprits are my father and my daughter. 


Three years ago my father wound up in Intensive Care after taking a turn for the worst with what his GP thought was gastric flu. After progressively deteriorating, he was taken to our local hospital where they grew increasingly concerned. Gastric flu or not, they were concerned about his heart and decided to transfer him to a larger hospital with an outstanding surgical team. It happened very quickly; I was travelling down from university as fast as I could and throughout the few hours of my trip he was sedated to preserve his energy and I arrived just before the ambulance did, to transfer him to London up the motorway. We were prepped as to his immediate emergency surgery to repair his heart, which had been damaged by staphylococcus and not gastric flu at all, that was ulcerating and eating away at the muscle. There was a 33% chance of success, but without it, the doctor gave him 24-48 hours. That train journey my mum, sister and myself took was fraught. We were on a knife edge and raced to get to St Thomas' hospital. Once there, we discovered my father was not. We were distraught and immediately thought the worst. A phone call revealed a delay; the local hospital wanted to stabilise him before starting out to give him the best chance.

Other Mums

For quite a while, I was a bit suspicious of other parents. They did everything better and had cleaner more stimulated children. They had the secrets to Good Parenting and I could never join their ranks.


Then I began to notice that they had bags under their eyes too. And odd socks. And a baked bean stuck their jumpers. And a look of exasperation when their well behaved child started up. And occasionally, said well behaved child would lob a petit filous pot across the room. I noticed that some parents looked sad, and some looked wary. Some worn out, and many just really, really looking for a friendly face and a cup of coffee. And maybe a bit of cake. No, definitely a bit of cake. And to hell with the organic, sugar-free, slimming plan.


Other parents can be a lifeline in times of need. And times of need can be anything from One Of Those Days to a true crisis point. Other parents can act as a mirror to reflect your own needs and desires and they can demonstrate understanding that many times can only come from someone who truly knows how you are feeling. They are the people that are there to help celebrate the highs and commiserate the lows. They will be the ones helping to pack up party-bags to delegating exactly whose fault was the hair pulling. Although my own parent network is very fledgling, I know how vital it is. Even if you have just one mummy friend, they can make the difference. When I was growing up, my mum was part of a strong NCT local network that gave her a circle of fiercely protective biscuit-wielding friends that still form a substantial tower of support and provided both my and my sister with lifelong friends also. 


Having like-minded fellow parents was for me tested when I reached my own crisis points, in neonatal and Paediatric Intensive Care. Whilst in neonatal I had no parent friends and was not at a point whereby I had the emotional capacity or time to start seeking them out. Practically it would have just been a bit weird, turning up to a baby group alone with nothing but a picture of a tiny poorly baby. I was however put in touch with another younger mum, just as we went home. Her baby was a term baby who had spent a stint on SCBU after birth and she was also alone in her former circle of friends, being the first to foray into the murky world of parenthood. She became my only mum-friend and a tentative one at that for a long time. However, I came into contact with many parents over the following months, mostly in the form of support workers. There were a group of women I met who directly influenced me and gave me the strength to acknowledge that I could do this. All the women were older than me and in entirely different circumstances, they only came into my life in a professional capacity, but their words touched me. Some I met just once, some handful of times, two I still keep in contact with now on a more personal level. Anna-Bet, Anne, Fiona, Mel, Bridie and Vicky, I don't think you will ever know what an impact you made on me for the better. Each of you shared one similar aspect of the early days of my motherhood that made me know that there was a light at the end of the tunnel. Be it a fellow NICU experience, other single parents, other young parents, another traumatic birth, a fighting spirit; it made me feel normal which was something I desperately felt anything but.


Over the months, I tentatively began to go into the big wide world and meet other new mums. The friendships are still very much developing but they restore my confidence in a way that nothing else can. Other mums fight as well, very hard for each other. A nurse I came into contact with on PICU who looked after my daughter saw I was struggling in accepting where I fitted into the world and doubting my parenting abilities and went above and beyond her job to try and help me. She wasn't paid for it and it was not her job description but she understood, not just my situation, but me personally. She was a world apart from me, her home life could not have been more different, but she was so protective and let me know that I was one of thousands of struggling mums. Words can make such a difference. And now I am dipping my toe into the world of parent-blogging. It started out as a personal way of processing my feelings following a whirlwind that was the beginning of parenthood, and ended up being another form of sanity saving. Of course the internet has much to answer for, but it connects you to people you would never meet otherwise, not least for geographic reasons, who make you feel that little bit more normal and able. Likewise, I am beginning to meet other mums through neonatal support groups. There is nothing like being able to sit with a stranger, with no words, but a deep connected sense of understanding. It can be like a secret language. You know too. 
Reassurance and support that you cannot put a price on.


Do Something Yummy and help out not just children who deserve a hand, bur their parents too. No one wants to suffer or to admit they would quite like a spot of help, but we all are so glad when it is there. If your child is having a rough time, you want to be mummy, not a carer. And sometimes, you need a break. Just enough to put the kettle up, or your head down for a nap. I have been in recipient of respite help before and it makes such a difference. No one ever thinks it will be them, but everyday 10 families are told their child has cancer. And I bet none of them saw it coming.

"Do something yummy because every mummy deserves some fun"

Separation

Imagine your child can't be home with you.

Imagine, just imagine. Imagine leaving your child, having to say goodbye and walk out the door. It's hard isn't it? I'm not talking walk out the door to go to work, to have a haircut, to have five minutes peace, but to walk off for the night and not return until the morning leaving a vulnerable child. I don't have to imagine, I know all too well.

Wriggles, my baby daughter is 16 and a half months old, 488 days. Since the day of her birth, I have spent 72 nights apart from her. That is almost 15% of her lifetime, not being there in the dark hours to attend to her every need. 15% forfeiting motherly duties and feeling helpless and guilt that my child may well be scared, being looked after by strangers. Of those dreadful 72 nights, 61 were spent in Neonatal Intensive Care and then Special Care as a neonate, needing to get to the optimum stage of getting home. The last 11 were while she was 6 months old in Paediatric Intensive Care. Between the remaining 85% of night times, we have spent numerous nights in hospital wards. I don't care to specify numbers or days, all I know is that it is quite a lot. Thankfully, those nights I spent sharing her bedside or cubicle in a pull-down bed, a fold out chair or a camp bed. They were tough, yes, but I was just so grateful to be with her I couldn't give a hoot. Because leaving your child at bedtime and not coming back is, well I can't find words for it.

Bizarre.

Heart-breaking.

Wrenching.

Guilt inducing.

Surreal.

Shameful.

They maybe are a few, but they don't even come close to summing up the well of loneliness and emptiness that you carry with you. Never have you feared silence so much, never have you keenly felt the emptiness of your arms.

There is no etiquette either for how to act. When Wriggles was in Special care and not in any immediate danger, there were the conflicting assumptions: 1) that life had to go on and 2) I should be by her side. It is not physically possible to spend every waking minute beside an incubator, for some parents it is not possible to spend every single day. Yet the times you are not there, you are in a daze, a sort of no-mans land. Time is not as you know it. During the SCBU stint, I had one night where I went to the ballet, taken by a friend who thought I needed distraction (she was right, it turned out to be a crucial night for straightening my thoughts. My premature daughter never left my mind throughout the whole performance, and it was this that really hit home just how much everything meant. As the saying goes, you can run but you can't hide) and for four weeks when I went a little potty, returned to work 20 hours a week in the office. That definitely was a mistake. I could barely concentrate at work, I resented being there however much I needed the money knowing that imminent single-parenthood was around the corner and a long stretch of time off work caring for a child on oxygen, and I ran myself ragged trying to simultaneously be at hospital and office and continuously running (literally, I must have looked mad) between the two, which luckily where a fifteen minute walk apart. I also had to collate all baby items that I had not yet bought in that time and rapidly sort out finances and living space. I would stay at the hospital late into the night and would sleep with a increasingly crumpled photograph of my daughter on my pillow. It was no replacement.

Intensive Care was different; her health was an utterly different state of affairs and the experience was far harder. Again, I knew she was in the best hands and separation was a medical necessity but sleeping away from your critical child is not something that is easy. In fact, sleeping may be an overstatement. Can you imagine going to bed without hope? Waking with a hollow dread-alone? A bed had never seemed bigger and night seemed cruel.

We still share a bedroom now, thankfully back in our cosy flat. At first, after the times apart it was a comfort to share a space and know I was not even metres away from her, but could reach out and brush her cot with my fingers. Now she is getting older, I just have not had time or spare hands to move my bed in my own room and give us both some grown up space. I will do very soon, it is time to move on and put some of the past to rest. The bad times are over, and we pulled through, Wriggles triumphant. Now I sleep every night with my snuffler and I love it, whether through the baby-monitor or my own ears.Until she is old enough for sleepovers or I have gone mad with baby-chatter, I will be uneasy unless we are under the same roof each night. It makes me feel safe to know she is nearby. There has been enough separation. 

This is part of the Yummy Mummy campaign for CLIC Sargent, raising awareness for children with cancer. Visit www.yummymummy.org.uk for information and fundraising ideas and search Twitter for #dosomethingyummy. No one ever expects it will be then, but what makes the difference if it is, is knowing that there is help and support available.

Go to Nickie at I Am Typecast to view others and see what she has to say.