Losing Theo

When the phone rings at 5 in the morning, it’s never going to be good news. When you have a child ill in hospital, you wake with the gut-wrenching nausea of cold dread. Danny, my husband, threw himself into jeans and shoes, picked up the car keys and stumbled out into the barely breaking dawn; leaving me alone with my sleeping son and daughter, to wait for the call that would tell me I could relax. I sat at the computer, playing games with fate. “If this round of patience comes out, he’ll be ok.” And then “Best of 3”. I think though, that a mother’s soul knows. The world felt different, I could sense the absence of my son’s heartbeat in it. When Danny called he said just 2 words; “He’s gone.” All I could say was “No!”

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