A few weeks later, as I sat on a hospital bed, with a new-born Joey in my arms, the enormity of what I’d done hit me like a stone: I was responsible for this brand new person. Me! What possessed me to think I could do it? I was filled with an overwhelming love for my child, and an overwhelming terror that I was going to cause him irreparable damage. Here he was, a clean slate, fresh and entirely innocent and I was supposed to guide and mould this tiny scrap of a being into a fully formed adult. A state that, it had suddenly become horribly apparent, I had barely managed to attain myself.

That scrap is almost twenty years old now. We made it to adulthood together, and he wasn’t the only one who had to do some growing-up along the way. No parent ever wants to take the “don’t do as I do, do as I say” route, but when you have made the kind of spectacular fuck-ups that I have made, hypocrisy is sometimes your best option.

I have been in recovery from alcoholism for over eleven years now; Joey was just eight when I got sober and, inevitably, my drinking had affected his life profoundly. The years leading up to my ‘rock bottom’ were a fairly typical example of alcoholic misery and, as I struggled to retain a grip on normal life, it is safe to say that my parenting skills left much to be desired. Joey learnt to be self-sufficient at a very early age; he could make his own breakfast at three years old; he sometimes missed school because I was too hung-over to get up and get him there and, most damagingly of all, he witnessed at first hand my dysfunctional relationship with my boyfriend (I had split with Joey’s father when he was 18 months old) and so, despite his tender years, he worried about me. Though Joey was never physically hurt or mistreated, he was also denied a child’s fundamental right to feel secure. As my life became increasingly chaotic Joey spent increasing amounts of time staying with my mother until, eventually, he was living with her full-time. The guilt was crushing; knowing I was no longer able to care for my own child filled me with almost unbearable shame that, at least for a while, made my drinking spiral even further out of control. Ultimately however, the pain of that separation was one of the key things that propelled me into recovery.

A few months into my sobriety, Joey and I moved into a new home together and I began the delicate job of repairing our fractured relationship. Over the following year or so, I gradually regained Joey’s trust. It was a slow process, I had let him down so often in the past, that he needed time to believe that things really had changed. Fortunately for me, I had nature on my side; children are very forgiving, and by and large they want to believe the best of their parents. They love us by default and, it seems, only in the most appallingly abusive relationships is that love irreparably damaged. Joey and I were ultimately able to emerge from the black hole of my drinking with a new-found respect for each other and relatively unscathed.

It has been over eleven years since Joey and I took those first faltering steps towards each other and, in that time, our family life has changed beyond all recognition. Around a year after getting sober I met my husband Danny and, in very quick succession, had first a daughter, Evie, and then just a year later, identical twin boys Felix and Theo. The twins were born with a rare form of muscular dystrophy and we lost Theo aged 7 months. Felix, now almost 8, is profoundly disabled; he is on a ventilator full-time and needs round-the-clock nursing care. It is fair to say that we have had our share of stress and drama; Joey has had to cope with situations far outside the usual teenage worries.

Every parent worries about their child getting into problems with drink or drugs; now we have yet another report showing that British teenagers drink and drug more than any other European kids. We know that drugs are readily available in almost every school, and the arrival of the alcopop a few years back means that teens have a readily available source of palatable, and innocent tasting, booze. But, in my case, those worries feel more acute, more concrete.

First of all, I know a great deal about alcoholism, and I can trace the roots of my own addiction right back into childhood. I know that addicts do not spring, fully-formed, into life overnight; so I scan my children for early warning signs, looking out for traces of obsessiveness or dependency. I know the terrible pain of the active addict; the soul-crushing, esteem-shattering living hell that it takes you to, and I cannot bear the thought that any child of mine should have to go through that. I also know that I am lucky to have survived; too many of my peers didn’t. I have attended funerals where I have seen shell-shocked parents, wondering how their beautiful baby became a person that they couldn’t recognise; one who died a sordid, lonely death far too young. And, of course, I know the statistics: addiction is a “family disease” and the child of an alcoholic has a significantly higher chance of also developing substance abuse problems. The addict in me knows this stuff, but the mother in me knows stuff too and finding the balance is not always easy.

I grew up in a typically hippy home in the sixties and seventies; recreational drug use was an integral part of the world I knew. The flower children believed that they were educating us about the realities of the world of drugs, and it was this that would protect us. There was a genuine belief at that time that drugs were essentially benign, and that knowledge is power. I know that my mother has carried guilt about this, blaming herself for my descent into addiction, though I have told her many times that it was not her fault. My husband on the other hand, grew up in a deeply religious and conservative household, where drink and drug problems were alien, distant issues. And yet we both ended up in the same place; we met in an AA meeting. We both have parents who love us desperately, who would do anything to protect us, and whose motives in the way we were raised, were only to have us grow into happy, balanced and fulfilled adults. Two completely different paths, one destination. Two loving families that watched, bewildered, as the child they adored spiralled into a darkness they couldn’t understand.

So I know, better than most, that there is no sure-fire parenting strategy for protecting children from drugs and alcohol. And, whilst I am never entirely comfortable with the idea of addiction as a ‘disease’, I can certainly see that certain thought patterns, those ‘addictive tendencies’ were there from my earliest memories. If I am entirely truthful, I believe that there was nothing my mother could have done or said; addiction was a strand of who I was and would always be until I learnt how to manage it.

One of the hardest things for me as a parent, has been learning to accept that there are some issues which, despite my extensive, first hand experience, I am not qualified to advise my own child on. How do I teach Joey to have a normal relationship with alcohol when my own has been one of such extremes: first excess and then abstinence? The truth is concepts like ‘moderation’ remain alien to me, and probably always will. The very most I can do is show Joey what not to do. The right path is one that I have to simply trust he will find for himself.

Children learn from their own mistakes alone. Much as we would wish to be able to bolt every door that potentially leads to danger, much as we can plead, lecture or punish, every child will ultimately choose their own path and, sometimes, that path will be bloody. Now, in middle-age, I can look back and see how painful, angst-filled and frightening early adulthood was. For me, like many, it was a minefield of insecurities and anxieties; I, unlike many, cannot envy the young. I dealt with the demons of my youth by self-medicating; anaesthetising the worries and silencing my belligerent inner critic. In recovery I have, belatedly, learnt that there are better, infinitely more effective routes to peace of mind.

So, if the teenage years are a social and emotional battlefield, across which our soft-shelled kids must find their own way, is there anything that we, as parents, can do to help them emerge with all their limbs and faculties intact? I believe there is: we can try to give our children the tools that will help them face whatever difficulties they meet in life. We may not be able to protect our children from the storm, but we can help to protect them through it. I have learnt to incorporate many of the problem-solving skills I have acquired in recovery into the way I parent my children. I try to teach them healthy ways of dealing with emotions and how to know when they need to ask for help. Most importantly, I let them see that sometimes there are dark times in any life but that, even after the very darkest, there will always be another sunrise. Perhaps the most valuable gift we can ever give our children is the knowledge that, whatever happens, there is always hope. And, of course, we can let them know that we will always be there, without judgment or condition, to love the person they are, rather than the person we might wish them to be.

Being a parent is as much about letting go as it is about being there. From slowly pulling back your outstretched arm for baby’s first steps, or following at a discreet distance to watch your child cross the road alone for the first time, to helping your kid move their stuff into their first grotty bed-sit. From the very first cry we are inching backwards until that tiny, helpless new-born is able to stand alone in the world. It can be one of the hardest jobs in the world, to accept that despite your overwhelming love, despite your selfless motives, you have no right to step unbidden into an adult child’s life.

With Joey, I bite my tongue a dozen times a day. I keep my unasked for advice to myself and step back. He is a good kid; funny, kind, smart, and I am as proud of him as I can be. Hard though it is, I have to trust that he will be ok. The road to adulthood is not an easy one, I have no doubt that Joey will have his share of trials, such is life. All I can do is watch and wait and pray.

November 2006

Owen Lister is, unfortunately, far from alone in his view. He argues that severely disabled children are a massive drain on resources; that they soak up money that would be better used for “reducing NHS waiting lists” rather than on those who are labelled “unproductive”. One of the chief proponents of this view is Peter Singer, professor of bioethics at Princeton University and the author of Practical Ethics. Closer to home, the Dutch have also been looking into infant euthanasia, but don’t think for a moment that it doesn’t happen here. Just ask the parents of Charlotte Wyatt, who have been to court unsuccessfully three times to try to have their daughter’s DNR (do not resuscitate) order lifted. All around the UK, in neonatal intensive care units everywhere, parents make the heartbreaking decision to discontinue treatment to babies with little chance of “meaningful recovery”. No-one should ever be condemned for making such a choice but, similarly, no-one should have it forced upon them.

You don’t have to be a pro-lifer or a Christian fundamentalist to find the idea of killing disabled babies deeply worrying, and yet it is astonishing how many on the left consider the argument to have some validity. No matter how much compassion you dress it up in though, the fact remains that this is eugenics. We are not just talking about passive killing through the withholding of medicine or food; bio-ethicists such as Singer advocate active murder for the ‘hopeless cases’. Practical Ethics states that “killing a defective infant is not morally equivalent to killing a person. Sometimes it is not wrong at all” but, of course, definitions of ‘defective’ are likely to vary who will decide which lives are worth saving and which children will die, how will they choose? The bar must be set somewhere and, when you’re working with such subjective issues as ‘quality of life’, you move rapidly into dangerous territory.

If the justification for the killing of (or, at least, not allocating resources for) disabled children is in part that they are “unproductive” it is worth examining the truth of that statement. Whilst some of the most severely disabled individuals may not be productive in the usual sense of the word (i.e. they do not make goods or create wealth) it is simply untrue to say that they do not have a hugely important contribution to make. Part of what defines a community is how it cares for its most vulnerable members. A healthy society is one that is fully rounded, filled with people of all abilities from the multi-skilled to the profoundly limited. We learn to be compassionate and to consider those whose needs are very different to our own. Most importantly, we learn perspective. When we look at the lives of people with disabilities we are, in many cases, looking into our own futures. Some in the disabled community refer to the non-disabled as “tabs” – temporarily able-bodied – in recognition of the fact that either accident or age will rob many of us of our physical or mental strength eventually.

Owen Lister, like many people, takes the line that when resources are limited it makes no sense to support people who are unlikely to ever achieve anything. Of course there are areas, sport for example, where we do exactly that. Sport enjoys vast public and private investment and yet, actually, benefits relatively few. We don’t expect a direct, personal return on our investment though; we see the wider benefits to our society and it is enough. We all share the glory and the joy of an Olympic medal, a world cup or even a tiny urn. We understand that, while the vast majority of grass-roots sporting investment will never shower us in glory, every once in a while we will produce the next Kelly Holmes. It is perhaps worth remembering that we should also be investing in the next Stephen Hawkins.

October 2005

Theo, and his identical twin Felix, had been born 7 months and 1 day earlier. They were a puzzle from the beginning, full term infants who behaved like preemies. Tested for every conceivable condition and disorder with countless doctors still none the wiser as to why they failed to thrive. At 3 months they had gastrostomies, little tubes fitted in their tummies to allow us to bypass their practically non-existent swallow at each feed. But eating was not their only problem area; breathing too was a struggle. For seven months we had rode the nightmare roller coaster of pneumonias, collapsed lungs, RSV and endless bugs. We had been in and out of Paediatric Intensive Care Units (PICU), on and off ventilators, with and without oxygen. In seven long months we had managed to get 3 weeks home with Felix, 2 weeks with Theo and a blessed 4 days with them both together.

And yet despite all this, our boys, our beautiful, beloved boys, were glorious. They were delightful children, full of smiles and charm and absolutely besotted with each other. As the hospital days turned into weeks and then months, Danny and I found ourselves living a bizarre double life with 2 children in hospital and 2 at home. Of course you adjust, and we developed a routine of sorts. We were fortunate in living very close to both UCH and Great Ormond Street (the 2 hospitals where our boys spent their time) and I was able to walk home for dinner after Theo and Felix’s bath time each night. As the winter approached we began to realise how vulnerable the babies were. “Medically fragile” is the term and October to March is the hardest time.

The last time I saw Theo alive I had kissed him gently as he lay in his cot. He had a rotten cold that was getting onto his chest. Felix had already been shipped out of UCH into PICU but Theo seemed to be holding his own this time. That night he went into respiratory arrest and, as attempts were made to intubate he went into cardiac arrest. They phoned us as they were performing CPR. He never came back and by the time Danny arrived at the hospital he had been pronounced dead.

The clarity of my recall of that morning is startling. The short, numb drive from my house to the hospital; the anguished look on the face of the nurse who held him for me until I arrived; kissing the forehead of my still warm baby; holding him to me for the last time; handing him, finally, over to the hospital who took him away, leaving me, my husband and my mother to sit in silence together, each wrapped in the beginnings of our own, private grief. Unreal. Even now the realisation that this day is truly a part of my history shocks and jolts me. It seems an event far too big to be encompassed by an ordinary human life.

The following days, as we did all the things that have to be done; registering the death; arranging a funeral; choosing an outfit to bury him in and some favourite toys to accompany him; letting people know; receiving the uncomprehending grief of others, were eerily calm. I felt my Theo so very close to me during that time as if he carried me through. I could hear him laugh and feel his little fingers on my face as if he hovered, just out of sight, like a playful angel finally free of all his earthly burdens. His twin, Felix, was kept sedated and on a ventilator, fighting for life and, or so it seemed, dimly aware of some terrible loss. Even through the haze of drugs he would thrash and cry. I don’t know when or how he made the decision to stay with us rather than join his soul mate, but I know it was a close thing for a while.

I saw Theo just one more time. I made the decision to visit him in the hospital chapel. I had walked away from the hospital on the morning of his death in shock and I knew that could not be my final goodbye. The hospital morgue is a grim place and whilst I cannot say that they were exactly disrespectful to my son’s body and to our loss, nevertheless it pained me to see him in those dingy and unloved surroundings. This time his skin was icy as I kissed him. I wish that I had thought to take a lock of hair but I didn’t; it is one of my few regrets.

Being a mixed faith family (my husband is Jewish, I am not) meant we were stranded in a no-man’s land as far as funeral arrangements went. Over the next few days Danny and I worked together to write a service that would honour our son in a way that was meaningful to us. I’m so glad we did that, it held us together and delayed a little longer the moment of letting him go. On the day of his funeral Danny and I travelled in the hearse with his tiny coffin; our hands touching it as we talked to him on his final journey, as a parent you never stop that reassuring and soothing, and sweet Theo had never travelled anywhere before in his short little life.

I guess we must have laid him to rest in peace because, after the funeral, I couldn’t hear his laugh or feel his fingers any more. He’d gone and I finally knew what it was to miss him.

Of course there are no words to adequately describe the pain. Emotions that big become almost unfeelable. Sometimes it felt like being at the eye of a storm; all around you is raging a tempest but somehow, in the place where you stand, all is calm. You can stretch out your fingers a little and the force of the maelstrom almost rips them from you, so you pull back. Little by little we allowed ourselves to feel our loss; holding it together most of the time with occasional surrender to the waves of sadness. Letting myself touch the pain became almost a luxury that I could only afford to indulge occasionally. Yes I can understand how some mothers (and fathers) fall into that loss, lose themselves in it and are unable to return. But I have 3 other children who need me and it was their presence that saved me from dissolving into my grief. I still cannot comprehend how anyone can cope with the loss of an only child or, God help them, a tragedy that takes all their children.

For a long time afterwards I felt unreal. Walking down the street , I could see myself only as the mother of a dead child. That little heart that had once beat inside me had been stilled. The word “barren” came to me often although I knew it wasn’t the right one. It seemed though, to sum up the emptiness I felt. When such a profound event takes place in our life it takes a while to adjust our self-perception, to learn to wear this new garment; for a while I was stunned and adrift.

It is now 14 months since Theo died and I’ve learnt to wear the garment almost invisibly. The pain changes and mellows and that, in itself, brings mixed emotions. I know that “getting over it” and “moving on” is healthy but there’s still a sadness that even the waning of grief takes me further and further from my beautiful boy. To lose a child, especially a baby, leaves you with so very little. Seven short months of memories, a handful of days. No matter how fierce the love it is hard not to feel that, as time passes, Theo is becoming a footnote in our family’s history. So what do we do? Build a shrine to keep him ever present in our home? Or let him go, and see that the loss goes on leaving ever-fainter ripples because we have to live with the living, no matter how much we long for the dead.

I choose to honour my son with happiness. I show my children that we are a complete family. I want them to grow up feeling their brother as a gift we had, rather than as a loss we mourn. We had 7 months and 1 day with Theo and his loss gives us an opportunity to learn profound lessons about the value of life, of each other, to get our priorities straight. If this is his legacy then he achieved more in his time than many with their 3 score years and 10. As his mother I miss him every single day, and I will not see his life wasted.

May 2001