Lio Spinelli

Today I met with Lio’s special educational needs assistant from school who is with him every morning and one afternoon a week to help him stay on task. She is a lovely woman and was glowing with praise for Lio, his changes and his accomplishments. I need to have conversations like this more often because they shift my focus from what he’s not doing to what he is doing, to his achievements rather than his “issues.” It was also useful in helping think about all the work we’re doing at home. Given that the mornings are brilliant for him – he is bright and chirpy and ready to do almost anything asked of him with very few bouts of frustration or destructive outbursts – I’ve decided to adopt a strategy of trying to do as much at-home therapy as possible in the mornings and let him set more of the pace in the afternoons.

While my own reading and conversations with doctors are making me less frightened of Ritalin or something like it, I want to exhaust other options before we go down that route. That means he’s taking quite a few supplements: omega-3 oil, ginko biloba, marine phytoplankton, blue-green algae, lecithin and some others. His neurologists are supportive of this, saying that some of these have track records of helping with particular brain functions while others are unproven but without harm in trying. I very much believe that they are working, but as I have gradually introduced them into his diet as I discovered them it is hard for me to say with certainty. Also, his therapies are constantly evolving/changing/intensifying which makes saying exactly what’s working quite difficult. One thing is clear however, he is getting better all the time. And, according to recent psycholometric tests, his improvements are over and above what could be expected from normal growth and development. We work at his recovery everyday, as do friends and family and therapists. On top of all that work, I’ve always seen his recovery as happening in my mind. I’ve always known that there will come a day when all of this will be nothing but a sad and painful memory for him; and Lio thinks this too. So, something amidst this array of vitamins and exercises and general good feeling is working, and for whatever it is both Lio and I are tremendously grateful everyday.

Yesterday we had a lovely early evening walk with the mother of Max, one of Lio’s companions from hospital who died roughly a year ago from his brain tumor. This was the first time we’d seen her since our days on the ward. She came with her charming eleven-year-old daughter who, very sweetly, played hide-and-seek with Lio for about twenty minutes in our local gardens despite Lio’s repeated attempts to poke her in the ribs while she covered her eyes. Max’s mother was looking wonderfully well; she had just had another baby girl before Christmas and she was full of the peace and contentment that parents of infants seem to radiate. I absorbed it and basked in it and took pleasure in it myself — it’s just nice to be around. I could not help but think of my and Sasha’s plan to have another baby, and how it might have been good for Lio to have a brother or sister. But the demands of parenting Lio and the simple brass tacks of it helped me put those thoughts aside quite quickly. And I take pleasure in the memory of Lio’s second childhood, his re-learning eating and walking and talking after the accident, which was, in its own extremely complicated way, more joyful than the first.

Lio was on TV again and he couldn’t wait to show his friends the archived video on the BBC website. A few weeks ago we made the first award of the Sasha Roberts Scholarship at the University of Kent. The turn-out was huge in spite of the torrential rain and me getting the date wrong in the email invite I sent out to people (the demands on my own brain are such these days that I’m making mistakes like this more and more). Friends, family, colleagues and reporters were all there (the scholarship is already one of the biggest of its kind at the university). Lio presented the big cheque and shoveled some earth around the tree that we planted in Sasha’s memory. There are several more events planned in Lewes to raise money for the scholarship this spring and summer (from sponsored marathon runners to plays to love sonnet readings at a local pub for Valentine’s Day). I continue to be simply staggered by the goodness and generosity of people especially here in Lewes.

We’re off to the States in a couple of days for the half-term holidays. Lio’s got five doctors appointments in ten days but he’s not at all phased. His super-leg, to my layman’s eye, looks to be growing extremely well and the bending is just a bit off of the normal leg. Those endless exercises do pay off, as does all our cognitive and behavioural work. He continues to make remarkable strides in all areas. And while his behaviour and ability to self-regulate remain a bit variable I’ve stumbled onto a good strategy for dealing with his troublingly euphoric moments: when he gets that way we wrestle. He absolutely loves wrestling and I can keep him out of trouble until the spirit passes. I can even sneak in some extra knee-bending physio while he’s trying to escape. Alice, our new au pair, is also great at this. She’s practiced judo for several years and Lio loves trying to get out of her half-nelsons and other methods of immobilization. He loves it even more when he gets her to attack other people (me, visiting Italian friends, Lio’s friends from the street, etc.). I sometimes worry that these little bouts make him even more wound-up, but the overall length of the episodes seems about the same, and he really enjoys it (and at least when we wrestle he’s not dangling off the banister).

This month I’m finding myself laughing almost as much as he is. Amongst all those events to raise money for Sasha’s scholarship is the Lewes Arms charity adult pantomime, scheduled, traditionally, for the first week of March. Sasha and I used to perform in it together and this year I intended just to help write a bit of it, but when one of the other players dropped out and when they offered to donate this year’s proceeds to Sasha’s scholarship (and after a good deal of arm twisting and friends insisting that I get out a bit) I agreed to take part. So I am a Jean-Brodie-esque Fairy Godmother in Cinderella who would do anything for her “gurrrls.” It’s more than a bit surreal: the innuendo in every line, the wonderfully over-the-top rudeness of it, its utter thoughtlessness and insensitivity to everything (even car accident jokes) all combine to create a space where I simply must let all my concerns fall away, where the seriousness and earnestness of my everyday dealings with Lio’s recovery, doctors, nurses, therapists, solicitors and treatment research simply must be left at the door. I would be lying if I said didn’t on some nights feel guilty for going out, worrying that my time might be better spent putting together new speech and language flash cards for Lio or reading more about paediatric brain injury treatments. But I think I’ve finally reached a point where, as so many well-meaning people have been telling me for so many months, I have to have some small outlet. And I’m doing my best to just let myself enjoy it. I’m sure Sasha is laughing too.

A few weeks ago we were the lucky recipients of another unlikely invitation. This time one of Lio’s surgeons from New York had invited Lio and me to be his guests at the first ever regular-season NFL game to happen outside of the US. As Marina drove us to the brand new Wembley Stadium memories of football outings with my own dad came flooding back. He used to take me and my brothers to Giants games in the Meadowlands when we were kids and it was a bit surreal to be completing the circle with Lio on the other side of the ocean. This time it was very easy just to smile and happily let go to fate.

We met our contact Allison by the enormous statue of Bobby Moore out in front of Wembley and she and her colleagues ushered us down through a labyrinth of security personnel, fluorescent bracelets and key-carded doors until we emerged on the field. Lio was not at all as shell-shocked as I expected him to be surrounded by tens of thousands of cheering people. We were led to Dr. Handsome by the Giants’ benches (he is the official knee surgeon of the New York Giants – hence his ability to get us down on the sidelines). Lio beamed at him straight away. He introduced us to the Giants’ owner, John Mara, and to some enormous football players. I had told Lio that they were going to be big guys but I don’t think he had really understood. He kept asking them “How did you get so big.” “Eating vegetables” was the usual response which neither Lio nor I took seriously. They were all, every single one of them from the owner, to the players, to the Giants’ media people who were escorting us around, to the other doctors, to even the police officers working security, absolutely and wonderfully kind to us. As soon as they saw Lio on my shoulders they would shout “Hey big guy!” or something over the roar of the crowd; it was as if they knew somehow to treat Lio like a little hero. Maybe they were told about us ahead of time (some of them certainly), or maybe it was just Lio radiating his natural charm, but they all seemed to go out of their way to make Lio (and me) feel special.

Lio covered his ears when the fireworks started going off for the pre-game show, but he soon lost interest in the hand shaking and the winks from the cheerleaders and started asking me “Will there be tackling?” Someone at school must have told him about “tackling” because he really got quite fixated on it. Just in time for the opening kick-off I hoisted him on my shoulders again and he was treated to a resound “crack” of a tackle about ten yards in front of him on the field. We watched about ten minutes of the first quarter on the field before we made our way to our seats. Just before the half-time kick-off – and, for better or for worse this is Lio’s abiding memory of the game – one of the referees (at least someone dressed like a referee) took off all his clothes and streaked on to the field. I was quite amazed at how long he managed to evade the police and pulled off some quite intricate dance moves for about a minute and a half. Of course this was impossible to contextualize for Lio who now thinks that every football game has a streaker at half-time. Lio’s first experience of American football will certainly take some beating.

A few weeks later Lio’s grandmother had booked us a family vacation on the Disney cruise in the Carribean. I must admit I was a bit apprehensive. This was to be Lio’s first real dose of the Mouse (beyond some films that he had seen on planes) and I wasn’t sure how he would respond to the hard-core kiddie drug that is Mickey et al. He was ecstatic the whole time, hobbling around the ship after Captain Jack, doing morning exercises with Goofy, giving high-fives to Mickey, going to kite making workshops, watching song-and-dance shows every night, doing treasure hunts on our island stopovers and swimming in a Mickey-shaped pool. He was a whirlwind. But it wasn’t all indulgence: he was particularly proud of the fact that he was one of the few kids on the ship that wasn’t drinking Coca Cola with breakfast, everyday we kept up with his speech and language exercises (usually followed by an afternoon snooze to recharge) and he even insisted on bringing his violin with us so that he could show grandmom and his cousin Jordan what he had been practicing in his music therapy. There were plenty of times when he needed carrying because his knee was giving him a bit of jip (he’s heavy now), and there were times when he was a bit over-exuberant climbing things he shouldn’t have, but we came back tanned and happy and with me only slightly worse for wear from all the free/cheap booze on board.

Back in physiotherapy though his leg in only now just getting back to bending as much as it was before we went away. I’m finding it simply exhausting (well-nigh impossible) keeping up with the home programmes for both his leg and his speech and language. Out of urgency and necessity for months his leg work was taking most of our concentrated energy. But since the summer we’ve been working more and more on his language. I really hear the pay-off – he’s speaking better and thinking better. But something a bit troubling has cropped up: he’s now speaking mostly English to me even as he insists that I speak only Italian to him. He can get quite animated when I speak English and this, I suspect, is because Italian was exclusively the language of our happy family before the accident. But as he’s learning more and more English in school and speaking it more fluently with his friends, his English is now better than his Italian. It’s an odd scene in public when he is yelling at me in English to speak Italian to him.

Over the past month we’ve had some extremely useful conversations with doctors, neurologists and psychologists – conversations I wish I had had nine months ago but wasn’t really able to because of the pressures of the moment. I mentioned the bilingual issue to all of them and the consensus seems to be that I should concentrate in a formal way on English for a variety of reasons: Its grammar is simpler, it’s more “word rich,” but its phonetics are extremely inconsistent. The thinking is that concentrating the formal language learning on English would both be easier for him structurally and conceptually, and (because we would be memorizing phonetically irregular words as “facts” at this stage of his development) would reduce the risk of him having problems with abstract language thinking and dyslexia in the future. Also, at around Lio’s age, language tends to “lateralize” to one side of the brain. This lateralization is a good thing and helps with more abstract thinking in the future. His injuries might impede that lateralization which means that this is an especially important time for stable, structured, consistent and uncomplicated language input (especially vocabulary building) which means English. This seems quite a poke in the eye to all of my own writing and thinking about language for the past twenty years, but the poetry of grown-ups and the exigencies of my five-year-old are two very different things (I tell myself).

What’s far more troubling to me are the symbolic and emotional implications of this. Lio loves to think of himself as someone who speaks more that one language. He loves telling people how many languages he can speak and loves demonstrating them. Italian is a fundamental part of his identity. Beyond that, Italian is perhaps Sasha’s greatest gift to Lio. She worked so hard to teach him the language; from the instant he was born she spoke to him in Italian and in four-and-three-quarter years maybe spoke English to him five times – only when she was really upset with him. For my part, I spoke English to him in the first couple of months when the absolute clarity of my expressions of affection seemed more important than what he was doing with the words coming in through his ears and down into his newborn brain. But by the time he was two months old I was speaking only Italian to him as well. It was his first language and it was “our language,” our secret code, the language of good food and holiday adventures, the language of fun in the mountains, and dragons and knights and wizards and castles. It would break what’s left of my heart to watch that wither away. So I’m a bit stuck. About two weeks ago I started speaking more English to him when we do his homework, and when we read English books together I no longer translate them on the fly. The strategy I think I may adopt, and one the medical people are OK with, would be to “work” formally at English (study it, concentrate on learning words, get the agreements right, etc.) while continuing to speak Italian to him casually while playing and doing what needs doing as a part of everyday life. And he’s got Marina with whom he speaks only Italian.

We’re going out to Italy for Christmas, Lio’s birthday and New Year’s. And Italian will embrace us again. While we’re out there we’ll try to organize a little stone marker for Sasha. Penny, Nigel and I spent a couple of days when we were last in Italy trying to find a stone mason, and then a quarry, with just the right stone: that special orangey-pink marble you find only in the Dolomites. After driving through the dark and the rain for hours in a little valley beneath Monte Pelmo (Sasha’s favourite mountain), asking at bars and road-side stores where the stone from the towns’ fountains came from, we found the quarry (I think). It was closed when we got there so maybe we’ll go back again this winter in-between parties and sledding excursions to see what they can do for us.

We will remember Sasha in England as well. The Scholarship Fund we set up in her name at the University of Kent at Canterbury continues to grow apace. I have been simply astounded at the generosity of people. And I mean not just our old friends and family, but the international academic community to which Sasha was so important, and to the wider community of people in Lewes. The time and the energy of people to raise money (more events and fundraisers than I can count), and their own contributions has simply been staggering. The Friends of the Lewes Arms, the Lewes Constitutional Club, Harvey’s (the local brewery), my friends and colleagues have just got on with it and generated thousands of Pounds for the scholarship. We’re going to make the first annual award of the Sasha Roberts Scholarship in January at the university.

We have some other celebrations to organize before then though. Not least of which is Lio’s birthday party. This will be his first birthday party with all of his school friends and he is positively ecstatic. Last weekend he carefully wrote out the names on invitations for most of the people he wanted to invite. This was the best writing I’ve ever seen him do which really heartens me. As with most things, motivation and perspective are more than half the game. He was a bit too excited in school the day he gave out the invitations and has been asking me how long until his party at least ten times a day since then. He is so happy and I’m going to let him go on being happy. This is really more than a birthday party, it’s a celebration of how miraculously well he’s doing and of how far he’s come this past year. Basking in his reflected joy is also wonderfully good for chasing away worries about English and Italian, about Ritalin and amantadine, about language acquisition and leg bending and the like. It just does me good.

It seems like everyday is another step forward with Lio. The little milestones are too numerous to list since our last update. But one in particular that gives us both tremendous pleasure is Lio’s riding his bike again without stabilizers (training wheels). This is something he had just learned to do before the accident and now he’s up and at it again, ready to show you or at least tell you about it at the drop of a hat.

We started some months ago with a large tricycle as part of his physiotherapy. We’ve been doing physio everyday, at home or with a therapist, and (as his knee-bending was improving and as his balance was returning) getting back on the bike was the obvious thing to do. A couple of weeks ago we visited his orthopedic doctors in New York, and according to them all our work has had a remarkable payoff. Lio’s range of motion in his leg is much more than they had expected and (more importantly in terms of long-range issues) his “super leg” is growing and the growth is straight. The angular deformity hasn’t gotten any worse and, at least in the short term, another operation seems unnecessary. Watching Lio show off in front of the doctors was something I will never forget.

Some milestones throughout this past year made me giddy in anticipation- -like leaving the hospital and Lio’s first day at proper school. For others I had to really work to make them positive, or to figure out a way to try to avoid them- -like Sasha’s birthday and our wedding anniversary. The one year anniversary of the accident was going to be very difficult for me. Fortunately the next week Lio had those doctors appointments in New York so I arrange to fly out on that day. Part of me really did just want to flee, to be so occupied with the stress of international airport security as to be distracted from the memories of a year ago- -every detail of which is almost always running through my mind like a constant video loop. I could face things more squarely next year when we will be even further along with Lio.

But the memories had a way of finding me even in the insanity that is Gatwick Airport. As I was about to turn off my phone while we were waiting in the plane for the last of the passengers to board I saw that I had a message. Normally I would have just ignored it, but for some reason I didn’t this time and grabbed one of Lio’s markers to scribble down a phone number on the edge of a page in his open colouring book. It was a reporter from the Argus, the daily paper in and around Brighton. He had noticed the date as well and wanted to write a follow-up story about Lio one year on. Lio was happily colouring dinosaurs and we were stuck waiting on the tarmac so I called him back. He was extremely nice, funny even at times; we chatted for a bit and eventually things came pouring back. I think I held it together well enough and he ended up writing a very nice and sympathetic little piece about Sasha’s passing and Lio’s stunning recovery from near death to the healthy, happy little boy that he is today.

When we got back from the States my answering machine was full and my email was piling up. Several other reporters had seen the story in the Argus and wanted to do a variety of pieces commemorating Sasha and celebrating Lio. Over the next few days we were on BBC TV and radio and had been interviewed and photographed for a story in the magazine Women’s Own. Every year the magazine nominates about a dozen children as “the bravest child of the year.” They wanted to include Lio on this year’s list. A few of these kids will then be chosen as “winners” and will be invited to lunch in London with some celebrities. Lio really relishes this attention, he’s more at home now in front of cameras than the doctors and the therapists he’s often posed with. Part of me hates having to drag everything up again, having to get a bit choked up with another journalist just when I feel I’ve gotten a lid on things. But Lio really loves it and in the end the pain that I have to go through ebbs away, I dry a tear, and I’m left feeling a little bit good. As I’m forced to bring up these emotions about Sasha and about our life together, I not only remember them but I relive them and I revel in them. I have known real love and know it now with Lio.

Sasha used to hide little love notes for me, in my toolboxes or in the margins of books I was working with at a given time. Who knows, I may yet find another one or two somewhere someday. She has a way of finding me still, of speaking to me still, of touching me still. As I have been organizing things for our lawsuit- -like developing a career profile for her or searching for her old tax returns- -I often get lost in the perfect, almost calligraphic beauty of her handwriting. Even the tops of paint cans stored under the stairs on which she wrote “small bedroom” or “external woodwork” can be simultaneously excruciating and glorious. I get lost in those letters for minutes on end, stuck there in a kind of happy-painful revery. The same thing even happened when I was doing my taxes last week for 2006, remembering those dinner “expenses” we had and our “conference travel” junkets. It took me ages to get through. But again, the sadness does breed a kind of closeness.

I see so much of Sasha in Lio: his joie de vivre, his enthusiasm, his startling determination and tenacity, his slightly maddening tendency to wake up at 6:00 every morning ready to do his best work of the day. Mornings are usually great for him, we often get in some drawing or some speech and language practice before breakfast. In these moments it is genuinely possible to forget the nightmare of a year ago and to think that he doesn’t have very far left to go. It’s only when I see him in the context of his peers that I realize where we have to focus our attention now. These issues are subtle: He continues to have concentration problems, he is easily bored and distracted and stays on task about half as well as others. One of his neurologists in proposing Ritalin but I have not yet done my homework on it (beyond a familiarity with its general bad press for being over prescribed). His drawing still isn’t as sophisticated as it was before the accident. He hasn’t quite regained the social skills that were his hallmark before as well. His voice is still raspy, especially when he gets excited and he still lacks and understanding/control of appropriate volume (although this is much much better than it was five months ago). His speech is generally slower and more much deliberate than his peers. But we’ve been working on this everyday with his “homework”: we play hours and hours of “Io spio” (“I spy”) which is really good for getting him to focus on one object for a couple of minutes and gets him to describe it in various ways. Even better is “Che cosa non va” (“The odd one out”)- -it’s when he’s struggling to articulate the odd one between a baseball, a baseball bat and an apple pie that I get the best thinking and speaking out of him. Sometimes he really surprises me with his creativity.

But what remains the most troubling thing for me are his bouts of euphoria (which usually come in the evenings) where he just laughs wildly and runs around doing crazy dances and repeating the same words. It’s impossible to talk him down when he gets this way and I wouldn’t mind so much except that when he’s like this he loses all sense of danger and risk, throwing himself in the deep end of the pool when he knows he can’t swim and climbing up the outside of stair railings, etc. Still, I would much rather have him like this than with bouts of impenetrable depression. And I am confident that we will tame these demons as well even if we have to clothe them and feed them and make them our own.

But most importantly, as all of the news coverage has noted and as all our friends (especially those who only see us infrequently) keep saying, his change and development and recovery have been nothing short of miraculous. As his speech and language therapist told me only a couple of days ago, if you didn’t know the story, to look at Lio on the playground with his friends you would barely notice a problem. I am extremely grateful for this and feel sure that one day this whole tragic episode will only be a distant memory for him.

Four weeks ago I got an email saying that Lio and I had been invited to meet and (oddly) to play football with Tony Blair at No. 10 Downing Street. Now while Lio’s leg has recovered extremely well we’re still a long way from playing football. But I wasn’t really worried as much about that as I was about the other scenarios my imagination was coming up with: was this for real or was this an elaborate immigration sting operation designed to deport us (a silly thought because we are perfectly legal), did I somehow make it on to some terrorist watch-list and was this a round-up, etc. But it turned out to be the real thing. King’s College Hospital had just received a large grant from the government and from the Wallace and Gromit Children’s Foundation to build a new multi-sensory pediatric neurological rehab suite adjacent to Lio’s old ward. The hospital’s fund-raising person wanted us to attend a press event organized at No. 10 to announce the building of this new state-of-the-art facility. We had been invited because of Lio’s natural charm and warmth, because of his miraculous recovery, and because I have been supplying the hospital’s fund raising efforts with little blurbs and photos about Lio’s recovery and his time in hospital. He really has become a sort of unofficial mascot for them. The idea was to have three or four recent pediatric patients from the hospital form a little football team coached by Tony Blair trying to score against Wallace and Gromit in goal.

Unfortunately there were some glitches. We arrived a half hour early and when we presented ourselves at the gate of No. 10 we were told that things were running late so we should come back in a hour or so. I carried Lio on shoulders to Westminster Bridge to take in the sights and to kill some time. It turned out to be a very difficult little excursion with me getting quite emotional on the bridge watching the Eye of London, the giant ferris wheel on the Thames that we took Lio on after getting to the top of his hospital therapy reward rocket (every good session won him a sticker and when he got to the top he got a prize). I couldn’t help but get lost in the memory of those darker and less certain days; I also couldn’t help but think about Sasha: we had talked for years about going on the Eye of London whenever we had been wandering through the South Bank, but she always insisted on putting it off and doing it properly-wanting to organize our ride perfectly at sunset, on a clear and uncrowded weekday evening. I tried to snap myself out these thoughts by thinking about what I would say when I met Tony Blair. For at least a week Lio had been telling everyone he was going to play football with Tony Blair. They would smile the smile that you give children when they’re telling wild stories, but then I would intervene and say that Lio was telling the truth. I’d then ask them if there was anything they wanted me to say to Tony on their behalf. The best answer I got was from Lio’s au pair Marina who wanted me to ask Tony if he had, by chance, a single nephew (well-healed, mature but not too old, and with interest in learning Italian). At that moment I reached down to pat Lio on the head, but I didn’t feel anything. While I was lost in thought he had wandered off on what is probably the busiest and most crowded bridge in London. Fortunately my panic only lasted about thirty seconds. He had shuffled about twenty feet back along the bridge to join a crowd listening to an implausibly loud bagpipe player. I grabbed him, hugged him, and gave him fifty pence to put in the man’s hat on the pavement.

I carried him back in the direction of Downing Street stopping underneath a statue of some Victorian general to eat the sandwiches we brought up from Lewes. Lio rejected both the one he had chosen and mine despite my best efforts to coax him-he would then complain for the next hour-and-a-half about being hungry. We headed back to the gates of No. 10 where the hospital fund-raising and PR people, Rachel and Paul, recognized us immediately. There was a good deal of confusion as it seemed there were two other sets of “organizers” (one from Wallace and Gromit and one from the Prime Minister’s office) who all had different ideas of how the event was going to unfold. On top of that the car carrying all the football gear had broken down en route so consequently and no one knew what was going to happen with the football photo-op. We presented our IDs and were ushered through security. Lio became fixated on the soldiers with big guns and kept insisting to me that if they shot someone they wouldn’t really kill them. I reassured him as best I could.

There was a permanent encampment of photographers and videocameras directly opposite the door of No. 10 catching everyone coming in and out. The kids were posed in front of the door first by themselves and then with parents; then Wallace and Gromit came out and posed with the kids (Lio didn’t know who they were having never seen any of their films, but he did know Tony Blair and was anxious to meet him). Then a few seconds later Tony came out. Lio, in my arms, was the first person he turned to. I thought “Right, this is it,” and launched into what I had prepared on the bridge. I gave him a hello and hoisted Lio a bit higher, “This is Lio, he’s the bravest boy in England,” I said. Tony Blair emitted a very polished “Oh” but was clearly a bit puzzled-this was probably not the way one usually greets the Prime Minister. Lio beamed, shook his hand and said hello. I explained that nine months ago Lio was almost killed, that he was in a coma, that prognoses were quite bleak at the outset, and then I started to sob a bit. I managed to get out “and now he’s here with you at No. 10.” Then my voice just stopped. Tears were starting to come, Tony disengaged effortlessly, turned to the cameras for a few seconds and then moved on to someone else. It was not my finest hour. (I feel sure Sasha wouldn’t have missed the opportunity to give him a good haranguing about the war.)

Sasha’s birthday was Sunday, May 27th. She would have been forty-one. Rather than spend the day feeling absolutely miserable and drinking quietly in some country pub, I, along with Nigel, Penny and David, decided to throw a big party in her honour at the Grange in Lewes (where we had our wedding reception). It was a bit of a risk as there was another event happening in Lewes organized by the big and important Cliffe Bonfire Society. I scheduled the party to happen after the Cliffe do, hoping that a few hardy drunken friends (or maybe just some friendly drunks) would stagger from one end of Lewes to the other to help us celebrate Sasha’s life and eat and drink a bit. It was very much a party, a celebration, rather than a memorial service. With loads of help we decked the place out with hundreds of photos of Sasha, her paintings, her etchings, her collages, her children’s book illustrations, her poetry, her academic writing, some videos of her on my laptop and a CD and headphones with some audio of her talking about the Devil in Renaissance literature for a radio project I did a few years ago. It was, if I do say so, an impressive assembly. We also had Sasha’s favourite salsa music playing loudly all evening. Lots of Lio’s little friends showed up both from school and from Lewes; they tore around and danced and played. About fifty or sixty people shuffled through in all, a turn out exceeding my expectations. We finished all the food and left only a few pints of Harvey’s and a few bottles of wine, all of which-I’m pleased to say-made their way home with other people. Everyone was so happy and generous and kind and thoughtful. I felt so close to Sasha that afternoon and floated on a sea of beautiful reminiscences and praise for her, for me and for Lio. People said the nicest things. I am so glad we did it and extremely grateful to everyone who was brave enough to come. The day after the party we flew off with Nigel and Penny for Lio’s half-term week in Italy, our first non-medical trip since the accident. It was blissful.

This weekend I got important news. I had sent some recent x-rays back to one of the surgeons at the Hospital for Special Surgery in New York. The doctor (Dr. Tall, Roger Widmann) had looked at the x-rays and sent me an email. It sat in my inbox for a few hours before I had the courage to read it. FANTASTIC NEWS! The angular deformity of Lio’s leg has not only not gotten worse since the operation (a real fear) but has improved! Prior to the operation the angular deformity was 17 degrees and now it measures only 14 degrees. This means that Lio won’t need another operation this summer and, at least for the time being, his leg appears to be growing well. I was ecstatic, but Lio was very nonchalant, as if he was expecting such a great result all the time. (Thanks for all your thoughts and prayers.) After months of extremely intensive leg work I now feel like I can return to focusing more on his cognitive recovery-those exercises had been let slip a bit.

Yesterday was another milestone: Father’s Day here in the UK. Lio made me a lovely card at school with a blue sailboat on it. It instantly became one of my most treasured possessions. We spent the afternoon taking a walk with Marina around the charming little village of Alfriston not far from the sea. We played in the churchyard, walked along the canal and then had a drink in an old village pub. That evening Marina went out dancing and Lio and I had dinner on our own and played with his marble run. While we were building the run he started, in an unsettling five-year-old way, calling me “sweetheart.” This is uncanny because that’s what Sasha used to call me. I don’t know where he picked it up; I think he just must have remembered Sasha using it-he was talking about mamma salsa dancing as we were driving back from dropping Marina off at the dance venue. He was remembering his mother fondly and, without tears, saying how nice it would be if she was still with us. Before brushing teeth I asked him why he was calling me “sweetheart” and he said simply, “Perché ti amo.” I really didn’t know what to say about this so I just left it. He’s got years to go before such linguistic subtleties will become truly important. Oddly, this brought my mind back to Tony Blair.

A few minutes after my initial bottled encounter with the PM I pulled my self together enough to ask him for a photo of us all with my camera. I found someone to take the picture and moved in next to Tony. After the snap he asked about Lio’s recovery which I said was going unimaginably well. I then asked him about his own son Leo. I asked how old he was. Tony appeared to be a bit thrown for a moment and paused longer than any father should need to pause. He finally said “Six… no now seven.” I thanked him and wished him well as he walked off. I thanked him not so much for the photo but for his mistaking his own son’s age. In that long pause I recognized the incredibly special nature of the relationship that I now have with Lio. Few fathers and sons on the planet are as close as Lio and I. As I have pulled him along physically and cognitively over the past months he has restored me emotionally. He is the reason I get up in the morning and the reason I go on. I’m sure this means there will be lots of counseling in the future for both Lio and me, but for now at least that future looks wonderfully bright.

It has been more than three weeks since Lio’s leg surgery and so far everything is looking extremely positive. The surgeons, who Lio has taken to calling Dr. Tall and Dr. Handsome, have been simply remarkable both as medical professionals and as people. After each of them finished their part of the operation, they came out into the family waiting room and told me how well Lio had done in the surgery. They were able to remove all the blockages to his knee rotation and to completely reopen the closure that had occured in his growthplate.

We could not have done better than the Hospital for Special Surgery for the procedure. Those weeks and months of traipsing around the world to find the right person and place did pay off. I don’t know whether it was Lio’s natural charm or whether the story of his circumstances proceeded him, but I felt like he was treated like a little returning hero or a celebrity from the day we arrived. It seemed every Italian doctor in the hospital came down to say “Ciao” and to invite him to a sandy Mediterranean beach back home. All of the nurses were as bright and cheery as his favourite Nurse Amy back at King’s. And absolutely everyone, from the technician who fitted Lio’s leg brace to the secretaries in the offices to the doctors who spent loads of time with us every day just radiated a positivity and a confidence that were simply infectious. They are all wonderful people. It was also a lovely place (as hospitals go). Lio’s room was directly over the FDR Drive with a view of the East River, Roosevelt Island and bridges over the water. When he got bored we would play “count the taxis” or “guess what that boat is carrying.” But Lio will tell you that the best bit of all was getting to eat ice cream for breakfast.

Within a matter of hours after the operation Lio started his physiotherapy. He has great relationships with his therapist in the hospital, Amanda, and Katie his therapist out in New Jersey; they are both really good in making his experience more play than “exercise.” From immediately after the operation until now Lio’s been in an automatic leg-bending machine for six hours a day. The first couple of weeks he needed a lot of continuous attention in it because the settings had to be changed every few minutes, because his position needed to be adjusted and because he was simply in real pain. But now it’s less demanding: we get him in it, play some word games with letter blocks, play the matching pairs memory game, play invent a silly story in Italian line-by-line, and then usually set him up with a truly crappy DVD about dogs who fart and play basketball or something. His current choice of entertainment, I think, is a bit of a shame considering how good Sasha was at getting him into DVDs of Tosca, The Barber of Seville, and grown-up documentaries–but I do love to hear him laugh. When he’s not in his machine he’s meant to be doing a range of leg exercise three times a day. These almost always involve pain for him, sometimes to the point where he hits and scratches and tells me that he hates me (something the belle terapeute are spared). This, obviously, saddens me, but we’ve been told often enough by doctors (and Lio does understand this as well) that pain today equals a better leg tomorrow. But it’s not all bad. The pain and exertion are tempered by daily playtime with Lio’s cousin Kevin who lives just two doors down the road; and, on balance, Lio remains an exceptionally happy kid.

We’ve got a lot more physiotherapy in our future. Both surgeons said when we saw them on Friday that we need to continue intensive physical therapy for four months after the operation. After four months it becomes considerably more difficult to get additional range of motion out of his knee. So as soon as we get back to Lewes in a couple of weeks we’ll start up again with Nicola, Lio’s therapist there. The operation to free-up the growthplate could not have gone better (according to Dr. Tall) but we will have to wait several months to see how the leg grows. I am extremely optimistic.

We’ve been staying in New Jersey with my mother Trudy and even though we’ve only been here for four weeks we’ve seen it change from snow flurries to beautifully warm early-summer days. It’s been quite nice being back in very comfortable suburbia, and Trudy’s been great about letting me catch up on some much needed sleep. I’ve been into the city a few times trying to deal with necessary things there and getting a psychological recharge from some old friends. And even as our future is nothing but uncertain, I have to say I am happier now than I’ve been in a very long time. Perhaps it’s precisely because I’m not able to think about the future in any concrete way. I spend almost all day almost everyday with Lio; watching him improve, knowing that I’m pulling him along, and simply experiencing life through the eyes of my little boy has been simply marvelous. I know this sounds a bit cliché but being forced into a position where I simply cannot deal with so many of the nagging little “necessities” of life, a situation in which I have to slow down and just focus on my son, has changed my perspective on what’s valuable and what’s important. None of my old projects seem as rewarding and nothing could ever be as fulfilling as what I’m doing now. There is no place I would rather be and nothing I would rather be doing than helping him along. Considering the person I was a year ago this seems another little miracle.

These past two months have been the most demanding since the immediate aftermath of the accident. Many of you have written, and phoned and emailed sending love, wanting news, wishing us strength and I’m sorry I haven’t been able to get back to you. Please keep the warmth coming, it comforts us both tremendously to know that you’re thinking of us even if I can’t say “thank you” as often as I’d like.

We have now visited eight specialist pediatric orthopedic surgeons in four countries on two continents in the hopes of finding the best way forward with Lio’s leg and knee, followed up by countless phone calls and emails. I have been extremely impressed with almost all of them, not just in terms of their expertise but also in terms of their patience in explaining to me the frighteningly complex choices in front of us. After having made tremendous strides (literally) in physiotherapy in the periods before and after Christmas, we suffered a setback five weeks ago: Lio’s leg, which he had been able to extend quite well and put a good deal of weight on, became locked at about 45 degrees, swollen and extremely painful. While the pain has mostly subsided (except for the nights), he still can’t straighten his leg or put much weight on it. The best theory is that a previously loose fragment of bone has attached itself to the end of the abnormal boney protrusion at the end of his femur (making it even more abnormal) and is blocking his extension. This problem has forced us to speed up our thinking about what should be done with his damaged growthplate (a separate issue).

Three basic approaches have been proposed (very much streamlined here). I’ve decided to go with Option #3:
1. Have surgery to fix the blocked knee in a matter of weeks. Wait and see in the short term how the injured leg grows (how long and how crooked). Base the treatment on that growth but expect to have several operations to lengthen the injured leg, straighten the injured leg, and (most horrifically) stunt the growth on the good leg to shorten it to keep it even with the injured leg. This is the medically easiest route.
2. The same as Option #1 but have more lengthening surgery on the injured leg and therefore expect to eliminate the need to shorten the good leg. While the advantages are obvious, the disadvantage is that the lengthening procedures will have to be repeated as Lio grows and mean that each time he would have to have his leg in a rather awkward frame for a period of months; in addition they weaken the bone.
3. Have one procedure immediately which would both unblock the knee and attempt to reactivate the injured growthplate in the hopes that it might be made to grow straight again—this procedure is called an epiphysiolysis. If it works this approach has several advantages: Both the knee repair and the growthplate could be addressed in the same surgery (thus saving Lio at least one operation), the amount of lengthening/shortening could be significantly reduced (thus saving him more surgery in the future), and it is (in terms of leg growing) the most “natural”. It is however very complicated and unpredictable. But if it doesn’t work we haven’t really lost anything and can then move on to option #1 or #2. There is a 50-50 chance that it will work and I am extremely pleased that we have found someone who sees in that 50-50 chance the possibility of helping a little boy have a much healthier and more normal leg, rather than seeing a procedure which shouldn’t be attempted because it might fail.

Throughout all of our traipsing around the world to find the right surgeon and procedure Lio has been absolutely brilliant, charming doctors in English and Italian and even trying a few words of German when the spirit takes him. Despite his intense pain in the first weeks his knee locked up he has remained extremely bright and happy. He doesn’t want to have surgery (and has joked with doctors about just leaving his knee like it is) but he knows that he needs it and is already thinking positively about it.

I take heart every week from his brain’s recovery—he continues to defy expectations. He is getting on extremely well at school and had a fabulous week performing in the annual “Spring Tea”. He and all his classmates were the things that go bump in the night and keep little kids awake (he was rustling curtains). We made some home treatment changes over the half-term break: earlier nights, much more reading and sound/voice practice time with just him and me, introducing a twice-daily cocktail of dietary supplements (after consulting with his rehab centre of course), and some other things. The result is that he’s had another big surge in his recovery. His voice is still a bit uneven and he still has a long way to go in concentration and attention, but we are getting there. People who haven’t seen him for a couple of weeks marvel at his improvements. Our next big obstacle is emotional instability, especially when he’s tired. When he’s tired he’s prone to melting down if things don’t go exactly as he envisaged they would (like me putting a piece in a puzzle that he wanted to put in), or if one of his friends is doing something they shouldn’t (like doing dives into the baby pool). But I’ve instituted what we call “Rule #1”. Rule #1 is “Do not panic.” And when he’s having a particularly frustrated moment I can usually calm him by asking him “Che cos’è regola numero uno?” When I do this he usually settles quite quickly, emits a sobbing little laugh and says “Non farti prendere dal panico!” This tickles me perhaps more than it should.

Two days ago there was a special day of tributes for Sasha at the University of Kent where colleagues, family, friends and former students reminisced and recited. It was a remarkably moving and painful experience; but Lio provided a lovely moment of comic relief when, instigated by his cousin Jesse, he limped up to the front and interrupted his uncle David’s speech by reciting a favourite moment from his favourite book: Mr. Nonsense building his house up a tree to be nearer to the ground. While the day was difficult it was also incredibly heartening to hear (from professors to porters to ex-students who now work for Teletubbies) what a wonderful, caring and simply brilliant person she was. Her last bits of writing read out by her co-author on a book about beauty were not just elegant and impassioned but also contained some truly uncanny meditations on life, death and beauty’s relationship to them both.

I continue to marvel at how many people Sasha touched in so many different spheres of life. Last Thursday I went to the 30th annual Lewes Arms Charity Adult Panto (on tour at the Lewes Constitutional Club because of a boycott against the new brewery which owns the Arms). This year’s panto, a particularly smutty and salacious interpretation of Babes in the Wood for which I wrote Scene 2, was dedicated to her. All the proceeds from this year’s production are being donated to the Sasha Roberts Scholarship Fund at the University of Kent. I’m sure Sasha was as proud of having her name on the panto as she was of her day of more serious remembrance at the university. Both Lio and I think of her every day, and even as our future is so painfully uncertain (in every respect) we take comfort in the memories of our once-idyllic life as a family and know that we yet have a beautiful life ahead of us.

I’m hoping that last night’s extremely rare and beautiful snow storm will be a soft and fluffy line under the events of the past few weeks and that 2007 can begin properly and happily today. After a month of the warmest winter on record, with cherries blosoming in mid-January, this morning Lio awoke excited to find two inches of snow on the ground. We dashed off up into the Downs to enjoy the world for a few minutes before heading to therapy.

After a positively lovely Christmas and New Year’s in the States and Italy, returning home to the stress, the decisions, the daily regime, the oppressive sense of uncertainty, and a wet grey English winter depressed us both. On the train coming back from the airport the usually bubbly Lio drifted off into stone quiet introspection, and I was unable to pull him out of it. Then, one week later, our home was burgled. It was a sloppy and rushed job; they took some wallets with cash, credit cards and IDs, a notebook (of all things) with my little memories of our time in the hospital, some drawings Lio did and lots of phone numbers, emails and some of my jottings on brain injury rehab, and —tragically—they stole my laptop (but not the power cable for it). That computer contained the only copies of photos of Sasha, Lio and I during our last year as a family before Sasha died and notes and contact information on various brain and leg treatments for Lio. It was absolutely priceless to us but worth very little to the thieves (second-hand, two-year-old laptops don’t fetch much). I was left heart broken and desperate.

The next morning I set to work checking all the garbage bins around Lewes and putting up flyers offering a £500 reward, no questions asked, for the safe return of my computer. Over the next several days I organized more radio, TV and newspaper interviews than I can remember. It was tremendously difficult, humiliating even, describing over and over why my laptop was so important. But in the end having the tragedy of the crash once again made into painful public spectacle proved worth it: it got the computer returned. Four days after it was stolen I got a call from a Lewes taxi driver. He told me that he had just been reading a story about it all and he thought he had found my computer in the back of his cab. He said that someone had left it on the back seat a few days earlier. I asked him to come right over which he did. I recognized my laptop instantly, took it inside, plugged it in and turned it on; it was indeed my computer and none of our files had been messed with (although there was some wireless software added onto it). I thanked him over and over again and wrote him a cheque for the reward money I’d promised. He took it and drove off into the night leaving me trembling with relief.

I called the police to let them know I got my laptop back and the next day they told me they’d picked up the taxi driver and arrested him for handling stolen property. They were troubled by the fact that he held onto the laptop for four days before returning it. While I’m glad the police are doing their jobs I am a bit bothered by this turn of events. I’m really grateful to the man for getting me back my priceless photos and think he did me a huge favour. If it turns out that he’s not involved with the burglary and genuinely didn’t know it was stolen then I intend to do something nice for him (the police took the reward cheque off him). For me at least, if not for my would-be good samaritan, this chapter has a very happy ending. Not only did I get my computer back but the whole episode was a tremendous boost to my faith in people. In spite of how distressing the theft was and how awful it was going on the media, the police and reporters were all extremely kind and sympathetic (and were all truly delighted to hear we got it back). But even more so, complete strangers not only offered care and support but volunteered to add their own money to the reward. I was repeatedly touched and a bit humbled by it all. There are so many good people out there.

But two days after feeling so good about things we suffered another setback. We got news that one of Lio’s little friends from hospital had died from a brain tumor. Max was a bit younger than Lio but Lio really took a shine to him, especially during our last weeks in the hospital when we were making plans to meet by the seaside for ice-cream this spring. The news hit Lio a bit harder than I expected and since then he’s been brushing off my praise, rejecting my encouragement a bit and telling me that he’s not doing as well as I tell him. He obviously identified with Max and is now worried about his own recovery. While this is not really an issue—he is doing incredibly well and is making intellectual gains weekly—I’m saddened to see him discouraged. It’s also been a bit hard on me as I’ve been forced again to face life’s random and uncontrollable aspects.

But, like making tracks in the new snow, we are moving forward. Lio’s calendar is full of dinners, parties and play dates; he really is the most sought-after boy in town. Everyone says hello to him on the street and at school, and (maybe because of all this lovely attention) he is steadily regaining his own unique social sparkle. We have our laptop back with all the wonderful photos of Christmas in the States and New Year’s in Italy where family was amazed at how well he was doing, theatrical friends put on elaborate and magical puppet shows just for him, he was the only child brave enough to sing for La Befana in the town of Sospirolo (and in Italian!), and complete strangers said “He really is an exceptional boy.” In a few weeks we’re visiting pediatric orthopedic surgeons in Bristol and Munich, and by then I’m hoping we’ll have enough information to make the right decision about his leg. He’s integrating so well into school (which, marvelously, has managed to secure funds for a teacher’s aid for him in the classroom). We’ve found a lovely Italian helper named Valeria who is going to come and live with us in February. And this morning, as he looked out of the bathroom window at our white garden below he said with pure delight, “Guarda! Mamma ci ha mandato giù la neve dal cielo!”

A slide gallery of the people we knew while we were in the hospital.

click here for flash slide show.

The rest of this week will be bittersweet: we leave the hospital on Friday and head back home for Lewes and Chailey where Lio will be in rehab. I have such tremendous faith and trust in the people who have been caring for Lio in the hospital; I really feel they are profoundly invested (on a personal and emotional level) in his recovery. Maybe it’s just that we’ve been around far longer than anyone else in the place (more than two months), or because they saw him when he was close to death, but it really does seem like they love him, an impression I don’t always get as I watch them interact with other children. I worry that it will be difficult to build relationships like these in the rehab center.

It’s also a bit bittersweet because even as Lio continues to make progress every day, the pace of his recovery has slowed down: we’re taking small steps in speech and concentration where as before he was making great leaps. As the therapists were cautioning today about long term problems and difficulties my own spirit took some bruising. Also, after seven weeks in one form or another of cast or covering, Lio’s left leg has finally been unveiled, unfortunately it’s two centimeters shorter than his right leg. This means lots of quite scary surgery is probably in his future. We were all so focused on his brain injury that his leg seemed like it would take care of itself somehow. But everyone has always said, as they continue to say, his recovery (in all its forms) will take a very long time.

Lio’s leg aside, he does seem much of the time like the boy he was before the accident. He is a witty little comedian with a tenderness and an empathy far beyond his years: last week when said out of the blue “I expect the lorry driver is a bit sad too” I couldn’t hold back the tears. The promise of him returning to his regular school, which is imminent, makes him extremely excited and fills me with hope. Given all that we’ve been through in these past eight weeks it’s sometimes hard for me to remember (and a bit daunting when I do remember it) that we’re still only at the beginning of his healing.

And I am heartened on a daily basis by little comments from everyone at the hospital: from the psychologist on his social skills: “You don’t usually see that until they reach 8 or 9.”; from a doctor when Lio translated a sentence from Italian to English: “There aren’t many 4 year olds who can do that.”; from a physiotherapist on Lio’s using a walker to get around: “We never even try this with children as young as Lio.” I will miss them all.

Please keep us in your thoughts as we take this next big step in his recovery.

love & love,

Lio & Martin

. . . , at least that’s what the doctors are now saying. Although I must admit it makes me a bit uneasy when they stick their heads in the door and simply say “Amazing,” or when they tell me how much he’s “exceeded our expectations.” I get a bit anxious because I’m prone to read into those comments the subtext of “he might not get any better than this.” But he does continue to get better every day: he’s talking in both English and Italian (he even corrected his grandfather’s Italian yesterday); he’s asking about things (especially his mother); worrying and crying about this week’s operation to remove the metal external fixator on his broken leg; playing with his cousin Jesse and other friends on the hospital ward almost as if he’s his old self; and kicking a football from his wheelchair with his good leg in the park.

He’s still got some co-ordination problems which means his drawing and writing are painfully slow and imprecise; his speech is a bit slow and breathy (but getting better); his voice is a bit higher than it was an is often shaky; he sometimes speaks in charming non-sequiturs (“Why do you like your speech therapist Miranda?” “Because I have relatives in Italy.”); he squints as he tries to remember what he had for breakfast or what his nurse’s name is (which he can’t often do); but most troubling for me is his lack of concentration and how quickly he gets fatigued. The therapists regularly remind me that his recovery will be measured in months and years rather than in weeks but I get from them an optimistic vibe. I am filled with hope.

In a few weeks we will probably go to a rehab center … One of the doctors there was very positive about Lio moving to outpatient treatment relatively soon and even about him gradually integrating into regular school (the school he was meant to start in four days after the accident), which is of course marvelous news.

Thank you all so much for everything you’ve done for us in this impossible time. Every visit, every card, every email, every thought and even every unanswered phone call has helped us go a little further.