A Child Called Hope

by Mia Marconi

  I often thought I would like to buy her a dress, and I set that as a sort of benchmark. It seems silly, but it was really important to me. If I could buy her something frilly and girly, I would know she was getting better.

  I never saw her as a disabled child; I just saw a baby who needed a lot of love and I was more than happy to give it to her. I always see the child before I see the disability. Any special need is irrelevant to me; I just want to love all children, no matter how damaged they are.

  Most days I was confident that Hope would grow up to lead a fun-filled life, but then she would get one of her terrible, rattling chest infections and I would cry myself to sleep thinking that her existence would be full of pain.

  I developed my daily routine caring for Hope, and with that routine came highs and lows, sleepless nights and constant prayers that mostly went unanswered. I remained positive and kept looking for the silver lining, and that was how I protected myself – by believing that there could be a happy ending for Hope. Her name summed up everything I wished for this baby who was so obviously a fighter – hope.

  When she came to live with us she was one year old and had spent most of her life in hospital. She had already had one foster carer, because Vicky, her mother, was not really able to look after her. Hope’s carer, Martha, was a friend of mine, but she became so over-emotional about her that she fell out with Vicky. Vicky put in lots of complaints about Martha, but no one took any notice until a doctor witnessed her shouting at Vicky in front of Hope. She was screaming at her not to get involved and was telling her to go home. The doctor complained and Martha was struck off the foster carers’ register.

  I received a call from social services that came from the top. It was from a senior practitioner I had known for quite a while and got on really well with. She asked me if I would take over Hope’s care and if I could do it quickly. It was awkward because Martha and I had recently had coffee together, and I knew she was very attached to Hope.

  I also knew that it does not matter how negatively you feel about a child’s parent; the one thing you cannot do is judge them. Martha had judged Vicky and had concluded that she should be kept away from Hope, and that was not a decision she was at liberty to make.

  I could understand how she felt, but I did not agree with her. I always make every effort to treat all parents the same, because it really helps a child to know that you are friendly with their parents. The only time I struggle is when a child has been sexually abused. I find it extremely hard to look those parents in the face, and I do anything I can to avoid contact with them.

  I spent many hours thinking about how Hope’s placement with Martha could be kept going and I suggested various things to social services, but they assured me that they had tried everything. I knew that decisions like that were not made lightly and I knew there must have been lots of meetings where social services would have emphasised to Martha the importance of working in partnership. Martha must have known that this was the key to a successful placement, but for some reason she could not find her footing with Vicky. Maybe she’d just had enough of foster caring and was burning her bridges.

  I knew that if I didn’t agree to take Hope she would be placed with someone else anyway, so in the end I decided I should care for her and that, as a family, we were up to the challenge. I didn’t spend hours and hours thinking about the decision, as time is a luxury to me. I tend to act on instinct, rather than intellectualise everything, so with very little thought I decided that we should go ahead.

  Hope’s disabilities were not frightening to me; they were not even an issue. Maybe I was naive, but what I thought was that I would love her, care for her and make it all right for her. Something I always fought to do for my dad – fix him and make it right.

  The day she arrived we were all really excited. I was looking at the whole thing through rose-tinted glasses, even though she arrived at our house with mountains of equipment and medication.

  My first task was to help her attach to a mother figure – me. She had spent so much time in hospital with no family member by her side that she had never bonded with a special adult, not even to one of the hospital nurses, because the ever-changing staff and agency workers meant that no one was around for long enough. There had been no familiar face in hospital to comfort Hope when she needed a cuddle, so she had missed out on bonding and had never learned to trust.

  When babies bond with their main carers they develop confidence. They will always look around for the special adults they rely on when they start to get distressed. Babies communicate by crying and only those adults can interpret that cry quickly. The faster you know what a baby is asking for, the faster you can change their nappy, give them a bottle, take them for a walk, or whatever it is they need, and the sooner they stop crying. And there is nothing more joyful than having a happy baby around. When a baby smiles, everyone smiles.

  Poor Hope could never be described as happy, and it was no wonder that she seemed distant and suspicious of bonding with any of us – there had been any number of people flitting in and out of her life, and none of them had stayed. I knew I wanted to put that right for her.

  Francesca and Ruby were six and seven by now and both at school, which meant I had the whole day, uninterrupted, to care for Hope. A community nurse was allocated to us when Hope first arrived. I remember her so well – we bonded immediately. Mary was in her thirties, with blonde hair, small green eyes and a constant smile. She had a kind, homely face and her personality shone through. She always seemed to say the right thing at the right time.

  She taught me how to feed Hope, what medication to give her and when, and she sat with me for hours answering my constant stream of questions, such as: ‘How do I check the oxygen levels, and what is this or that medication for?’

  Chest infections plagued Hope, so I had to learn how to massage her back and clear the mucus from her lungs, and then there was the mountain of medication, all of which had to be administered through her tubes. Massaging Hope was actually quite fun. Sometimes a physiotherapist came to the house to help, sometimes I did it alone or, if Vicky was visiting, I would ask her to join in and then we would have a chance to bond.

  Walk into most babies’ rooms and you will find musical mobiles, teddy bears and other toys. Hope’s was no exception, although her room was also full of monitors and oxygen pumps, all there to keep her alive. Oxygen was piped through tubes into her nose at night from a cylinder that I had to change every other day. She needed it because she had been born prematurely and her lungs hadn’t developed properly. If she had no oxygen she could stop breathing while she slept. The oxygen was measured by her sleep monitor, which was alarmed and buzzed if she failed to take a breath or if her oxygen was running low. Sometimes, if she rolled over while she slept and dislodged the tubes, the monitor would then buzz to warn me.

  It could also buzz if there was a malfunction with the machine somewhere, and it was up to me to work out what was wrong. I needed to do that in seconds rather than minutes, because any delay could cause Hope to suffer brain damage.

  It was like having a newborn baby, except magnified a hundred times. With a newborn you are so tuned in to their needs, they only have to sneeze and you wake up, so when the buzz of that monitor jolted me out of my sleep I leapt out of bed instantly and rushed in to see what was happening. A slow response could spell death to Hope.

  I loved it in the morning when her oxygen tubes could come off. Once I had cleaned her face, I would feed and change her, then sit her in the highchair, where she would watch me while I rushed round dusting or preparing meals for the family. I will never forget how her blue eyes followed me everywhere, taking everything in.

  It was just after Christmas when she came to live with us. As Christmas presents we had bought the girls puppies, two beautiful Jack Russell terriers called Jack and Jill, named after the nursery rhyme that we sang all the time. To say the house was hectic is an understatement, but it was full of energy, mischief and laughter, a
nd I loved it.

  As Vicky and I spent more time together, she slowly began to trust me and I gradually found out more and more about her background. She talked about her childhood and her struggles as a teenager, but the one thing she never said was who Hope’s father was.

  She did speak about her addiction, though, and said she had been in a bad place and was drinking and taking drugs to forget it all. It turned out that she had been in care for part of her life and had a fragmented relationship with her own mother. As a consequence, she suffered from low self-esteem and felt she was not worthy of love. Her first boyfriend took advantage of that and controlled her. He was the one who introduced her to drink when she was just thirteen and I wondered if he was Hope’s father. It was obviously a painful subject so I didn’t pry. She had enough pain caring for her daughter, after all.

  My feeling was: well, that was then and now is now. Let’s move forward. Hope was here, and it was up to me and Vicky to keep her out of hospital and give her a happy life. We managed really well with her care and she never had to stay overnight in hospital during the nine months she was with me.

  We did not talk about whether or not Vicky would ever be able to look after Hope full time. She had once had her own bedsit, but she had lost it because of rent arrears and now she was homeless and sleeping on a friend’s sofa. She could not manage money at all and had no place she could call home, so the likelihood of her being able to care for Hope by herself was slim. I knew it was up to me to help Hope recover, and there was no doubt in my mind that I would be able to fix her. None whatsoever.

  Vicky came to visit once a week and I never once smelled drink on her or saw any indication of drug abuse. I do remember her smelling of cigarettes, though, and she was continually asking to go into the garden so that she could have a fag.

  I always thought she looked as though she needed a good hot meal. She was always nervous and extremely shy, and it was obvious to anyone who met her that she found it very hard to trust people. That was particularly evident when social workers were around. Vicky became withdrawn, sullen and distant as soon as one walked into the room.

  We got on well generally, but at times our relationship was like teacher and pupil. Over the next few months we worked each other out, which took time, but eventually we built up a really good relationship. What was also lovely was the relationship Vicky developed with Martin. They were kind to each other and got on very well, you could tell.

  I became quite protective of her and gradually our relationship changed from teacher and pupil to more like mother and daughter. I asked social workers if contact could increase under my supervision and they agreed. Vicky would visit three times a week and we spent those days caring for Hope together.

  She was unsure of herself at first, so she never took the lead when it came to doing anything with her daughter. Her spirit had been crushed and she had no confidence, so it was hard for her to push herself forward. Despite her failings, she remained consistent, which is incredibly rare in mums whose children are in foster care. She turned up on time, she was sober and clean, she stayed for as long as she said she would and interacted with Hope while she was there.

  The problem for Vicky was that she was needy and demotivated. She required constant guidance from me, and reassurance that she was getting it right. The reality was that because she still needed so much mothering herself, she found it hard to mother Hope.

  For example, because she found taking the initiative hard, she would never think of sitting on the floor by herself to play with Hope, but she was quite happy if I initiated it. I’d sit with both of them, showing Vicky the gestures she needed to use to gain Hope’s trust. Blowing bubbles, clapping hands and playing hide and seek are little games that come naturally to most mums – they are simple gestures a baby will respond to – but none of this came naturally to Vicky.

  Martha had asked social services to stop Vicky’s contact with Hope, saying that Hope became agitated when she was around. I never saw that happen, and in fact they developed a beautiful bond.

  Hope began to thrive. It wasn’t long before she started smiling at me when I went to lift her out of her cot, and not long after that she began stretching her arms up, wanting me to pick her up. Her body language had completely changed and I knew she was pleased to see me. It was so different from when she first arrived. When she saw me then she would look slightly confused, wondering who I was, whether she could trust me and whether I would be there tomorrow.

  Now, she had begun to trust me and I allowed myself a small smile of satisfaction as I knew we were headed down the right road. It was when Francesca and Ruby came home that she really blossomed. The three of them would sit on the floor together, laughing and playing with the puppies, who had just as much fun as they did.

  Every day with Hope was busy, as most of it was taken up by hospital appointments, visits from social workers, health visitors, community nurses, play therapists and physiotherapists. The list of tasks was endless and it all took up a lot of my time. At the end of some days I felt sapped of energy and barely had the strength to make a cup of tea. After caring for Hope for a few weeks, I began to feel a new respect for parents and carers who looked after disabled children.

  I saw many doctors with Hope, but most of them seemed distant, cold and superior. Sometimes we would wait for hours to spend five minutes with one, only to come away feeling as though we had not achieved anything. I felt they were just ticking boxes. I understood that they worked long hours and saw numerous patients, some of whom could be pretty difficult, but it seemed like the caring side of the profession had disappeared. Few of them had time to sit and talk to us, few of them connected with Hope, they simply did not have the time – and we were made to feel that we should be grateful for the five minutes we were allocated.

  While the days were always full for me, the nights could be lonely. We lived in a three-storey townhouse then. On the ground floor was a kitchen and a conservatory, the living room and one bedroom were on the first floor, and there were two bedrooms and two bathrooms on the top floor. Hope slept in the first-floor bedroom, so I sometimes slept on the settee in the living room next to her room in case she needed me, while Martin slept in our bed upstairs.

  There were nights when I sat up with her, scared, because she had a cold or a chest infection. I was frightened she would wake up, need me and I wouldn’t be there. There were nights when her alarm seemed to go off constantly, and some nights when I got very little sleep at all.

  Chapter Seven

  For nine months Hope and I went backwards and forwards to hospital, I changed her oxygen cylinders and fed her through her tube. I massaged her back whenever her lungs were congested and we settled into a routine. The chance never came to visit mother-and-toddler groups because of all the hospital appointments, but when we could we spent time having fun in the park on the swings and enjoying family outings. The dress I wanted to buy for her remained a distant dream, but I felt sure that in a year’s time the picture would be different. By her second Christmas, I thought, Hope would be celebrating wearing her first dress.

  It was lovely to see her change. Emotionally, she was much happier, but her health stayed pretty much the same. She had good days and bad days, and there was still that daily mountain of medication she had to take. I was confident that one day she would turn a corner, but that corner was nowhere in sight. I could see that we had a long way to go before we would even see the curve of it.

  Summer turned into autumn and the leaves on the trees were changing colour. My days with Hope were still pretty much the same, but on this particular day she seemed to sleep quite a lot. Extended sleeps were not unusual for Hope, as her illness – a combination of foetal alcohol syndrome, drugs, a premature birth and Vicky’s poor diet while she was pregnant – meant that she would never be as fit and healthy as normal babies.

  That night I fed her, bathed her, got her ready for bed and gave her all her medication, which I ticked off on a list. After h
er 11 p.m. feed, I settled her in her cot, attached her oxygen tubes, checked the level on the tanks, turned on her night light and her musical mobile and pretty soon she was drifting off to sleep.

  I slept on the settee that night just in case, because I felt that Hope was not 100 per cent – but then again, she was never 100 per cent. I used to get a gut feeling just before she suffered a chest infection and I had that gut feeling now. Call it mother’s instinct, but I just knew I should sleep on the settee.

  It was 5 a.m. when the alarm went off and I jumped up and ran into her room. Hope was not crying or moving; she was lying in her cot and her lips were a blueish colour. I lifted her into my arms and screamed at Martin to help me. Hope was as limp as a rag doll and I held her tight. She was still breathing, but it was very shallow and she was unconscious. My whole body was quivering and I stood there screaming, shaking and calling, ‘Hope! Hope!’

  The minutes that followed were filled with despair. I was desperate for someone to do something – I didn’t know what, so I was just running around the room screaming for someone to help me. I remember I looked up the stairs and saw Francesca and Ruby crying, ‘Help Mummy, Daddy! Help Mummy!’

  Martin looked at me as if to say, ‘Don’t scream, you’re frightening the girls,’ but I just could not stop.

  He was the one who called the ambulance while I was still screaming. Incredibly, he kept calm and tried to help us all. He was our rock.

  The ambulance arrived really quickly. They say that when you need one they take forever, but it seemed to arrive almost immediately. Martin was still on the phone to the emergency services when the doorbell rang.

  The paramedics took Hope and seemed to bombard me with questions that I could not answer because I was still in a dreadful state. I managed to hand them the notes from the nurse and followed them to the ambulance. They put an oxygen mask on her and I could hear the siren as we raced towards the hospital. Everything seemed to be going at a hundred miles an hour, but when we arrived at A&E a few minutes later I breathed a sigh of relief – Hope was still alive; her breathing was shallow, but she was clinging on.