A New Start

I love this picture; to me this speaks of a new start. It is not obvious to anyone but me, but this was taken in my new flat (aka, my home). The only furniture is Wriggles' bouncy chair and a wooden crate pretending to be a coffee table; there are not yet any appliances like a cooker or washing machine, the walls are bare and I think this was taken before the official removal van and moving in day.

When Wriggles was born prematurely, I had not yet had time to sort out moving from a professional flat share into a more family friendly private space, as she came so quickly. I would have had 3 months further to play with if she had stayed inside but it was not to be. Unfortunately things became complicated as she came home on oxygen and so it was with trepidation, that I took her back to what resembled a student flat that I had to share. During the few months I was there, I became very desperate. More than anything, I ached for some precious privacy with my baby.

Finally, somewhere came up. Before moving in came around, we had the Intensive Care shenanigans which brought everything very clearly to me. Once we were out of the danger zone, the hospital felt safe. Although there were people in and out, it was more private and comfortable than my flat. It was bliss being able to shut a door and I dreaded returning home. Thankfully, when I did go back, it was merely days before I could move.  My mum had come up while Wriggles was in hospital and stayed to help us move. She felt closed in on too, and we were so eager to leave to pastures new, that the day before the removal van was booked, we packed large rucksacks and laundry baskets of essentials like the kettle, biscuits, Wriggles' chair and milk, the sterilizer, toys for Wriggles, and an airbed, and got the metro over to the new flat and spent the day in a barren place. We must have looked like lunatics on the platform with binbags of belongings shoved under the pram and on our backs, like refugees. There were ladles sticking out of coat pockets, cushions stuffed in coats and teatowels worn like scarves. It was a cold and drab April morning, but we practically skipped up the road and ran into the bare and empty building. It was bliss. It was so quiet and secret, I felt like I could breathe again. It felt like playing house, proudly organising the few belongings in the bare rooms. We stayed for hours until the sun set and night began to creep in. Reluctantly, we left to put Wriggles to bed, spurred on the the thought of being there the next day. When we moved, it felt as if finally, seven months on from the birth, our life as a family was starting.

That first weekend there, my aunt, uncle and cousin came to help organise the flat. We still had no cooker, washing machine, sofa or chairs, so spent the weekend sat around on the floor, microwaving vats of soup my aunt brought over from her home in Cumbria to eat, inbetween putting up curtain rails and unpacking boxes. We pegged and sellotaped duvets and bin bags as curtains and sat on crates, got lost trying to find Homebase, lived off cups of tea and instant soup-in-a-packet and biscuits, and played and played with Wriggles who adapted marvellously quickly to her new palace. When appliances arrived, they sat in the middle of the floor for weeks like large traffic islands, waiting to the installed. I didn't care one jot. The disorganisation was laughable but yet heavenly.

Having my own space meant the world to me, it meant that finally I could establish a routine, do things as I intended to as a mummy, speak when I wanted to, and deal with everything in my own way. I could ask for help to deal with the depression that had engulfed me, safe in the knowledge that I was allowed to have bad days and that I wasn't under the watchful eyes of people, who had the best of intentions but would never look away. And so I began to find myself as a mummy. With furniture at last.

Chocolate Tea Party

Recently I wrote about the tough separation that can occur when your child is ill, for the do something yummy campaign. This feeling of distance sadly shaped a lot of my early motherhood and still looms large in my mind now. It has made me both very grateful and also passionate about the support that families need; that I needed back then.

Being separated from your child is hell; I can't think of a way to dress is up. However, the one thing that can make it easier is kindness. Kindness and a bed as near as possible. And this is where the Sick Children's Trust is a light in the dark. One of the best things that they do is operate "Homes from Home." Around England, they have seven houses attached to major hospitals that help over 3,500 families every year. 

No nurse, doctor or professional is normally any substitute for a parent. A parent’s presence is often worth any amount of analgesia, play distraction, interpreters or therapy. Children’s deterioration is normally spotted first by a parent and their recovery vastly enhanced by their presence.”
John Reid, Director of Nursing and Clinical Operations, Sheffield Children’s NHS Trust

 

When Wriggles was in Intensive Care, I was lucky enough to be allocated a room in Crawford House, a 23-bedroomed house on the grounds of the hospital. As well as a variety of bedrooms, it had a lounge, kitchen, bathrooms and laundry room for families staying a while. All in all, I spent eleven days there: it felt a lifeline. However, knowing that I had a bed behind a private door, less than 5 minutes walk from my daughter and a telephone with a direct line to her bedside was a comfort. in fact, it was sanity saving. I knew from Special Care how sapping it is it return home night after night alone, how hard and expensive it is to go in and out and how home comforts mean nothing without your family. Crawford House kept me sane. It kept me on site so that if anything changed, which it would and very suddenly, I could be there immediately. It enabled me to have no limits to my time on the ward; if I wanted to stay into the early hours I could as it was safe to walk down the corridor, across the car park and into bed. No public transport. No drunks. No taxi fares.

In the kitchen we all had a cupboard so we could cook as well as live off hospital sandwiches and all the utensils and crockery were provided. Bath linen was provided and bedding in the rooms, and hairdryers and shavers could be lent out. In short, it was like a holiday cottage, bar the somber mood in the air. None of us were on holiday, we were all parents of very sick children. Some like me were alone, some in pairs, some had their whole family with them. the range of rooms meant that other children could also stay and there was a special playroom to accommodate this. There is no charge to stay, but it costs £27 per room per night to provide this service. I would not have been able to afford this for my stay, there is no question. I was able to give a donation but it was a far cry from the near £300 I would have otherwise owed.

The houses have an 89% occupancy throughout the year, although in the time I stayed it was oversubscribed with a waiting list. The first night my daughter was in Intensive Care there were no beds but both I was reluctant to return home and the nurses were reluctant to let me, as she was so changeable. They snuck me into a spare cubicle on the paediatric ward we had been on previously under the strict premise that if there were any emergency admissions, I was bound for the all-night Costa Coffee. Thankfully the following day I received a call that a bedroom had become free. During my stay, some families were there throughout, others changed every few days. Some families came for operations, some for emergencies. I would estimate at least half of the families were those of a premature baby in the neonatal unit-were I have been just mere months ago. In fact, their latest project is for a large parent's house attached to a large neonatal unit in Cambridge. 'The Rosie Hospital' will help hundreds of families across the East of England and beyond, as sadly many babies are transferred sometimes hundreds of miles to access the medical care they need, often leaving parents uprooted and faced with a several hour long trip every day or an extensive hotel bill.

Why should you help? Because there are no guarantees: no one ever thinks that will be me. But if you have the misfortune to be 'that one', then you jolly well need support. Not want, need. 

So what can you do to help? Many things! You can donate directly, use their shop or take part in The Big Chocolate Tea Party! Chocolate? Tea Party? Yes, thought you'd like it!

Make chocolate things, sell chocolate things, drink tea and have fun! What better way of raising money for a good cause? As the say goes, every penny counts. Just £25 would buy a brick for a new building project or a mere two cupcakes more would buy a night's stay! So what are you waiting for?? Whip out that apron, wash your best teapot and crack on with it!

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.