Lio Spinelli

Two days ago while Lio and I were doing his physiotherapy exercises at home I noticed something utterly remarkable:  For the first time in more than three years his left leg, his “super leg,” was longer than his other one!  Only a tiny bit, maybe two millimeters at most, but when he laid on his stomach and straightened out both legs on the ground his left heel and left big toe were definitely further down than those on his right.  I hooted, hollered and danced around.  Lio, a bit fed up with the physio that day (and in general) said grumpily, “What the heck are you doing?”  I got down next to him, rubbed his head and chanted:  “It’s your leg, your leg, your super-duper leg!  It’s longer than the other one.”  He smiled a broad smile and asked me to get the camera and take a picture so he could see.  That’s just what I did.

It was such a glorious pay-off after two months of literal torture.  It has been very, very difficult, even for the tremendously positive Lio, to stay focused on the outcome through all of this.  Every morning we loosen the lock-nuts and twist the extension screws on the six colour-coded struts that make up his frame and every morning his femur gets about a millimeter longer.  But a millimeter is a very small increment, quite a discreet amount.  So it’s not something you notice until you hit a really clear milestone, like one leg overtaking the other.  And when we hit it I was sent flicking through the photos I took of Lio playing with his friend Jack on Sky Ward at Great Ormond Street Hospital when the frame was first attached.  “Wow!” I said out loud when I saw them.  The change is absolutely incredible.  We’ve lengthened about 4 centimeters so far, and the surgeon has set a goal of 5 centimeters (we may even be able to get a bit more if everything happens as it might).  On our last check-up visit to the hospital I was speaking to one of the nurses on the ward about how amazing (and elegantly simple) the whole process is:  You break the bone, attach the mechanical apparatus, you twist the screws a couple of times a day, and your body just does the rest — it makes bone in the space you’ve created.  The nurse grinned at me and said, “Yeah, I remind myself of how unbelievable it all is whenever things get a little tough on the ward.”

And things do get more than a little tough.  You simply cannot prepare your child enough to deal with the pain, and I must admit I underestimated the complete upheaval it would cause in our lives.  Our whole lives were organized toward the preparation for this frame going on for months before hand:  getting the right muscles as strong and flexible as possible, finding a new place to stay while Lio would need a wheelchair, and laying down lots and lots of happy physical memories that we hoped would nurture us through the six to eight months of having a metal contraption on his leg.  Virtually everything else was abandoned.  And all our work really did set us up for a running start after the operation.

The sooner you move your leg after surgery the better and the faster and the more often you put weight on your leg the better your body produces bone.  But this meant that from two days after his operation Lio was in the physiotherapy gym bending, stretching, kicking and shouting.  In those early days he had such a great attitude to it all and his physiotherapists Katie and Debbie told him he was their star patient.  I’m sure the morphine helped a good deal but it was Lio who was wanting to get himself on his crutches, it was Lio trying to straighten his leg on the bed without being asked, and it was Lio wanting to use the toilet instead of a bedpan.  That spirit got him out of the hospital two days earlier than everyone’s best case preliminary guess.  Lio was out in one week (earlier that summer we had been told to prepare to stay in the hospital up to two weeks).

The first two weeks out of the hospital he did astonishingly well:  He was sailing around on his crutches and even venturing a few unaided steps every now and again against everyone’s pleading.  In fact he was doing so marvelously that it became a problem:  His body was producing bone so much faster than anticipated that the outer edge of his femur started to heal prematurely.  Because we didn’t catch this in time a tiny bone bridge formed which was making turning the lengthening screws extremely difficult.  We sped up the lengthening to 2 millimeters per day in the hopes of breaking the bridge before it formed even further.  After 5 days of trying the bridge still hadn’t broken and we were faced with having another operation to surgically cut it or to increase the lengthening even more.  In an effort to spare him another surgery we opted to double the speed of the lengthening again to 4 millimeters per day.  I made the first of these adjustment in the surgeon’s office at our regular Friday appointment with him watching over us, hoping it would break there and then.
“How will I know when it breaks with out an x-ray?” I asked.
At that our no-nonsense surgeon laughed.  “Oh, you’ll know,”  he said.  “It’ll be quite a trauma.”
Sure enough that night at 1:00 am the bridge broke.  The next day, after 16 hours of sleepless agony with Lio wailing in pain, after more codine than I should have given him, after several calls to the hospital and insisting on speaking with an orthopaedic surgeon on call, I dialed back the screws on Lio’s frame a few millimeters.  The pain became a fraction more manageable and we saw the surgeon again on Monday.  He was happy that the bridge broke and he gave Lio 5 days of rest from any more screw turning.

In spite of all my encouragement Lio has never really gotten back to where he was in terms of movement and confidence before that complication, a complication caused in part by his body once again beating expectations.  Physiotherapy, which we do every day at home and three days a week with a professional, is simply excruciating.  When he is in the right frame of mind and I can think of the right bribery incentives the physio works:  he can straighten his leg and manage a few steps.  When he resists, his muscles tighten before I or his therapist Nicki even touch him and he howls in such pain you worry the police are going to show up.  It has been impressed on us over and over again that he needs to do his physio (first) if we’re to get any more lengthening out of it in the short term, and (second) if he wants to be able to extend his leg and use it when the frame comes off this spring.  Simply put, there is no “not doing the physiotherapy.”  So when he screams we all just have to try to centre ourselves, relax and continue.  It’s much better with Nicki than it is with me at home.  If I don’t get his mood just right he punches and bites and asks me why I hate him and screams so loud my ears ring.   He resists, naturally, and it takes ages to get through, ending in tears for both of us.  If he’s relaxed (we have children’s meditation/relaxation CDs which do help), if I’ve had the wherewithal to give him some pre-emptive pain killers a half-hour before, and if I pitch my encouragement just right, it ends with hugs and high-fives and cheering and maybe even a little (very careful) wrestling on the carpet.

When I’ve asked the doctors and therapists at the hospital if this level of pain in physio is normal, and if the difficulty in getting the active (powered by Lio’s own muscles) extension in his leg back after the complication is to be expected, they say, unsatisfyingly, that they “are not surprised” by any of this.  They’re not surprised because we are having to lengthen Lio’s bone at a considerably faster rate than they would do it normally because of the quality of Lio’s bone production.  But while it’s relatively easy to spin the screws and lengthen the bone, the muscles attached to it are having a very hard time stretching to keep pace.  This means that they will naturally be tighter and more painful when stretched, but it also means that keeping up the effort to stretch them is drastically more important.  When Lio is at his most tense he is certainly in more pain than at any time since he was in the continuous-passive-motion machine which flexed his leg after his surgery in New York two and half years ago.  And, honestly, the whole of this ordeal has been more demanding, difficult, painful and exhausting for both of us than anything we’ve experienced since those first dark days of Lio’s coma after the crash.  This is not something to be entered into lightly and when I’m able to rest I rest assured that I tried absolutely everything humanly possible to avoid and to minimize his time in a limb lengthening frame.

While we might have little control over the mechanics and biology of his leg lengthening, I keep reminding myself that there are things we can do, and are doing, psychologically to make the experience better— if we’re clever enough.  The daily ritual of the pin site cleaning, changing the dressings on and disinfecting the pins which connect the frame to his leg is Lio’s second least favorite thing in the world.  There had been days when he would begin screaming when my hand was still and inch away from the pin site.  Tired of being punched and cursed I told Lio that it was destroying our relationship.  I told him that I didn’t want to be the person causing him such pain, that I was to do fun dad-son things with him instead like build legos and make models, that I didn’t want him hating me and that I did want the bad feelings that were happening during the pin site cleaning to ruin the rest of our waking time together.  So I told him I was going to find a nurse to do it.  He was silent but I could tell he didn’t like the idea.  Over the next few days I made some phone calls and found someone to do the job.  When I told Lio that in three days a nurse would be coming to do his pin sites he said he didn’t want her to come.  I told her she had to because I wasn’t going to do it any more.  Lio grunted, “I she nice?”
I saw an opportunity.  “I don’t think so.  She sounds a bit mean on the phone.”  I said, hoping this lie wouldn’t backfire.  “She’s old and big and tough and fat, and she’s got a thick accent.  I think she must be German.”
Deceptive, politically incorrect and possibly even cruel as that might have been, it worked.  That night as I did his pin sites Lio hardly made a sound.  He bit his lip once or twice and I have no doubt that there was real pain, but the abuse and the hitting were gone.
When we done Lio said to me, “You did that really nice and gently.  That was the best one ever.”  The next two days we had nothing but hugs and compliments after the pin sites, and the next morning I called and cancelled the nurse’s visit.  She told me to call her again if I decided I needed her in the future.  I thanked her but told her I was pretty sure we were all set.

To accommodate all we’re doing for his leg he and I have had to drop almost everything else.  Lio isn’t practicing the piano and violin at home anymore but he still goes to lessons and enjoys them socially.  He’s looking forward to playing in the Christmas concerts and while he knows these won’t be his best performances he really wants to roll onto the stage.  Homework, reading, speech and language therapy have also pretty much fallen by the wayside.  We’re now doing the bear minimum simply because I can’t push him to do anything more.  All on his own though he will still do some singing.  He says he “likes how it feels” but I haven’t really probed what he means.  He also does his maths and asks me every now and again to quiz him on his times tables while we’re driving up to the hospitals in London (15 trips in the past two months).  Yesterday he came home from school with an enormous gold sticker on his chest dying to tell me he had won a “Head Teacher’s Award” for being the first in his class to figure out some multiplication problems.  I made such a fuss over that sticker the neighbors must have thought it was a Nobel Prize.  When I spoke to his special needs teacher later that evening she said that she almost teared up with pride when he went up to claim his sticker.  Earlier this month Lio had been finding school so exhausting and difficult that they were talking about having him stay out of school and having a teacher come out and teach him at home.
Lio hated the idea and said, “They can’t make me stay home.  I am going to school!” (That in itself filled me with joy.)
We did a deal:  I wouldn’t let anyone keep him out of school if he promised to eat all of his morning snack and all of his lunch every day and if he went to have a rest in the medical room whenever his teachers thought he needed it without any trouble.  I’m so glad we made that work because, in spite of the difficulties, he loves school.  We ride the benefits in little things like his Head Teacher Award for days and weeks at a time.  They help get us over all the other hurdles.  The last of which in the active lengthening phase of things happens tomorrow when I expect the surgeon will tweak Lio’s programme to deal with the last bit of rotational/alignment deformity left over from the crash.

Something so simple but so exquisitely and innocently beautiful happened yesterday as I returned him to school following his noon physiotherapy session, a session in which he was as angelically sweet as he was resistant the day before.  All of his friends were pouring out on to the playground after lunch while he was transferring himself from his crutches to his wheelchair in the corridor.  One of his classmates, Francesca ran by and paused to smile and say “Hi Lio!” before running on.
Lio shouted, “Francesca!  Will you wait for me?”
She shouted back, “Sure Lio,” and held the door open for him and he caught up and rolled through.
That simple desire of kids wanting to play together and that simple act of childhood kindness moved me more than I would have ever imagined.  I was so grateful to have seen that, so grateful that Lio has friends that hold the door open for him, so grateful to have his lovely little village school.  I’m as grateful for that moment as I am for his leg which is now straight and long and which will carry him proudly up plenty of aisles to collect plenty of awards and sheep-skins in his future.  Indeed I’m sure now that his super leg will carry him where ever he wants to go.

I’m also thankful for everyone who has stopped us in the street to ask how we’re doing and for every card, letter, phone call, email and text which Lio and I have gotten over the past couple of months asking about us and wishing us well.  I’m so sorry I haven’t had the time to answer them but please know that they really do help keep us going and keep us focused on the things that truly matter.

After a summer absolutely packed with tubing, castles, mountains, snowball fights on glaciers, swimming in lakes and rivers, bows and arrows, do-it-yourself theatre, briscola and more pizzas than you could stuff into a minivan, Lio returned home tanned and happy. A few days later he dived into school with pure delight, ready to tell all his friends about his adventures.

The pleasure he took in things this summer and his enthusiasm about what he’s seen and done are a daily tonic for me. The memories he created will serve him well in the months ahead when he’s wrestling with his leg-lengthening frame. Lio goes in for his big operation on Thursday of this week. It happens at Great Ormond Street Hospital in London and I’m extremely confident in the surgeon Robert Hill. Lio’s doctors back in the States are happy too and have told me that they know Lio is in very good hands and that this surgery at this time is absolutely the right thing to do.

Sadly one of the things he’ll miss during his ten days or so in the hospital is his class trip to Fishbourne Palace, the remains of a 2000-year-old Roman villa near Chichester. He really wanted to go with them so as an alternative I organized a little outing to Fishbourne with a couple of his friends from school last Sunday. The site happened to be hosting a re-enacted Roman village that day complete with Gladiator fights. The head-smashing hammers and the fake blood proved a little bit too much for me and Lio’s friends, but Lio didn’t seem to mind. After a pretend row in a Roman boat and some quite tasty (if garlicky) recreated Roman food the gore was forgotten and the kids were more interested in rolling down the two large grassy hills created when all the earth was moved during the archeological digs 40 years ago.

He is so enthusiastic about so many things (astonishingly so given all he’s been through). Whether it’s piano or Romans or singing or helping cook, Lio seems to have this almost magical ability to generate joy. I am grateful for this beyond words, and this disposition will certainly come in handy over the next 6 to 8 months with his leg frame (and the wheelchair and crutches that come with it). Please spare him a thought on Thursday the 24th as he takes the next big step on his journey.

The surgery a couple of months ago on Lio’s super leg went as well as we could have hoped. It was worth all the work and stress in December, January and February finding the surgeon who many other medical types said was the best in the country at these procedures. Robert Hill was able to remove almost all of the bone cement that had been inserted in Lio’s earlier operation to help his leg grow straight but which was going to interfere with future attempts to lengthen and straighten. He also, and this is something which still sometimes makes me feel uneasy, completely stopped all growth in Lio’s femur because it was growing crooked. Now all the length that we’ll ever get out of that leg will have to happen artificially (and painfully).

We have an appointment scheduled in a few weeks to see Dr. Hill again. After he looks at the x-rays we’ll decide on a next step. We have been talking about surgery in September or October to start the lengthening and straightening and I expect we’ll still be on track for this. Although the good Dr. Hill reminded me when we last saw him that “We do this all the time” there is no other word to describe this next surgery than “scary.” Lio will have an external frame attached to his leg for 5-8 months. Depending on the kind of frame they use, which is something they’ll decide closer to the time, it may need adjusting with a wrench four times per day. With luck we’ll get the one that only needs adjusting once a day. For his part Lio’s quite excited about this and keeps talking about how cool it will be to have “a bionic super leg.” I hope I can nurse this enthusiasm along past the first few weeks, but I am preparing us both for another long and intense stretch on this part of our journey. Whatever ordeal awaits him, we both take tremendous comfort in the outcome: this time next year he will have two perfectly straight legs and his super leg will be a bit longer than his normal leg. As he grows the normal leg will catch up with and then overtake his super leg— then in a few more years he’ll have the lengthening again. When I’m at my most positive about things I do think it will be very rewarding, if not even fun, to watch this transformation occur.

Lio will need to be in a wheelchair for a long spell after his operation. With that in mind I’ve been trying to find us a more suitable (flatter) house. Way back in February I found a nice little bungalow (ranch) house in Kingston, the village where Lio goes to school. But despite working almost daily for nearly four months (and employing two mortgage brokers) getting a mortgage on it failed on three earnest attempts. No surveyor was prepared to say the house had any value at all: it’s been empty for two years, hasn’t been touched for about 30 years, has no central heating and electrical cables with old-fashioned insulation, collapsed drains, asbestos, lead pipe, and only a single course of brick on the external walls. To call it a “fixer-upper” is something of an understatement. I’ve lost track of how many times this house seemed like it was going to slip out of our hands, and of how many times I thought that might not be such a bad thing. After too much trying and too much wasted time I called some builders to find out if they could still make the place habitable for Lio’s time off his legs. When they all said they couldn’t make the deadline I resigned myself to the fact that we were going to have to rent a more wheelchair-friendly place in the short term regardless. With this realization I became a lot less desperate about the house, have made an all-cash offer that is much less (and much less fueled by panic), and am hoping for the best. The house will still be very useful for Lio’s next operations, and if we get it I will approach the prospect of fixing it up with a lot more pleasure and a lot less anxiety. Sasha and I had always wanted to buy a house to renovate and it’s the kind of thing that has a lot of happy memories from my own childhood in which I and my brothers worked on lots of house projects with my dad.

Despite our continued battles with concentration and impulsivity Lio is in very fine form. He’s doing everything that is asked of him— most of the time with an enthusiasm that I still find startling. A few weeks ago as part of a unit his class was doing about “the seaside” he was asked to write a poem. That afternoon he didn’t struggle at all to tell me what he had done at school. He couldn’t wait to recite his throwing pebbles poem, explain how his teacher Mrs. Strachan said his poem was one of the best in class and inform me how it was going to be put on the school website. Beyond being simply proud, I took so much pleasure in seeing him proud, in seeing him really happy about an accomplishment he had made at school, with words no less. I sailed on the thought of those flying pebbles for days afterward.

Music is still the activity that gives him the most pleasure and the strongest sense of his own identity. He played a violin solo of “Allegro” at the school’s summer concert last week and some other pieces with his classmates. He really thrives when performing. The only difficult moment for him on that day came when watching some of his classmates play the piano as well. Lio really wanted to play the piano in the concert too, but he forgot to audition for the head teacher the week earlier. Then he got mad at himself a bit for forgetting. Trying to stop a downward spiral before it started I told him how brilliantly he had played “Allegro” and how he had piano concert organized by his piano teacher coming up next week. While this mollified him to some extent it didn’t really work on me. I remain a bit worried about his concentration and his memory which seem a bigger hurdles for him than for his peers, but I really can’t say how much of these issues are simply a function of him being seven years old.

Since his last operation his therapies are now much more integrated into his life and much less of a disruption, although physiotherapy remains an obstacle. I usually have to bribe him before-hand and reward him after. In addition to maintaining his knee flexion we’re trying to get his core muscles really strong before his operation in the Autumn because the results will likely be better and core strength will help with the frame, the crutches and the wheelchair. Despite being a bit slender he’s already really strong in his upper body— it’s all the tree climbing and dangling off his bunk bed. One of his favourite things to do now after physiotherapy is to ride out into the country, hire a canoe for an hour from a pub on the river, and paddle around for a bit with one of his friends. I had promised him that when it got hot he could try the rope swing attached to a big old oak tree about fifteen minutes up stream from the pub. Yesterday it was almost 90 degrees F (32 degrees C), so after physio we drove out, got our canoe and headed for the rope swing. After about three or four minutes of giddily trying to convince himself he wasn’t scared he yelled, “Yee hee hee, Tarzan!” and let himself go. After that it was impossible to get him to call it quits, dry off and head for home. We have a date for next week. It’s such a wonderfully normal seven-year-old boy thing, and I am so grateful for it.

With the summer holidays now in sight I’ve starting to focus on giving Lio a special vacation before we have to start dealing with the difficulty of his surgery. We’re going out to Italy where there will be lots to do: we’ve organized a headstone for Sasha and we’re going to get the same sculptor to do a piece in oak for our church back in Lewes as permanent reminder of her in England. Penny has a show of her art work involving Sasha’s writing that will happen at a mountain lodge that we all frequented and Lio is keen to help her hang her paintings. With these things it feels as if we have at long last turned the corner in our grieving.

But the thing Lio is looking forward to the most is visiting lots of the people he knows out there who have always taken such a deep interest in his progress. He’s really keen to see our eccentric friends the Velluti again and try to walk up to the Piani Eterni. When we were last out there for his spring break we went exploring in the little town of Soncino with its moated medieval castle. Lio wanted to walk down to the bottom of the moat (long dried up) so we found a trail and headed down. Amongst the dead pigeons and cigarette butts Lio found a very strange book that must have fallen from the castle walls: it had a slightly battered wooden and leather cover with a brass cross on the front, and it was tied shut with two black cords. Lio excitedly opened it and was a bit perplexed to find that all the pages were blank (it was probably a prop for some show). I suggested we take it our friends Federico, Oscar and Laura Velluti who are restorers of old churches and medieval art because they might be able to tell us something about it. It was all Lio could talk about for two days until we arranged to see them. They, courtesy of their own spur-of-the-moment creative genius (and a bit of lemon juice), were able to find in the book’s pages a secret message in invisible ink addressed to “Cavaliere Lio.” It was a request for help from a good witch being held prisoner by an evil sorcerer in a castle high up in the Piani Eterni of the Dolomites and it promised a magical reward. Lio has been completely captivated by idea of finding this castle, something that the Velluti have alluded to before in there stories to us. In fact much younger Velluti told some of the same stories to Sasha about thirty years ago. Lio loves the idea of a being sent on quest and we will give it a try. I’ve told him that it’s a long long way to the Piani Eterni but he says he’s not bothered and he knows the way. If we don’t get there this summer, he says, he knows we will get there eventually. I find this reassuring in ways I can’t express.

Tomorrow Lio goes in for surgery on his super leg.  It’s been a long time coming.  Too long in fact.  We had originally planned on surgery for a couple of days after Christmas but then the surgeon scheduled to do the operation, someone I trust enormously, started expressing some reservation that even if it did work (which was itself no certainty) it might not really save that many months in a limb lengthening frame.  So I was prompted to reconsider.  We saw five surgeons in London, most of them connected in some way to Great Ormond Street Hospital, to see what they could offer.  All of them were proposing some combination of lengthening and straightening at various intervals during Lio’s growing years.  While they all mentioned the possibility of stunting the growth on Lio’s uninjured leg to save him some lengthening on the super leg in the future, some were more keen to avoid that than others.  Given that I’ve worked extremely hard to not have that happen up until now I naturally gravitated to the surgeons who shared that disposition.  Neither Lio nor I want to see the good leg stunted in the service of the injured one.

Still, none of the surgeons we spoke with seemed to think that trying to coax another couple of centimeters of normal straight growth out of the super leg was worth doing.  This meant that we were going to have to resign ourselves to the idea that there was never going to be any more good growth in his super leg, that at 7 years old it was going to be surgically forced to not grow any more, and that all the length we’d ever get out of it from this point onward would have to be through unpleasant artificial lengthening.  I simply hate to think of the rest of his childhood as punctuated by episodes in a leg frame.  This has been very difficult psychological hurdle to get us over.  But, after considering everything (and I have considered everything) I think that it’s the best way forward with Lio’s leg.  At least this way we’ll be able to plan things and prepare for surgeries rather than anxiously checking every few months to see how it’s growing.  The limbo of waiting and seeing, coupled with the torturous worry about whether or not the current length discrepancy and angular deformity are causing (or are about to cause) any problems for his knee, hip, ankle or spine, is almost as stressful as the decision to stop the growth completely.

There were, in the end, two surgeons who seemed to have the right kind of experience and ideas.  One with an excellent bedside manner, communication skills and a desire to answer questions, but with a slightly more conservative and variable approach to Lio’s situation, while the other was extremely confident in what he could do, and came with the recommendation of the director of Great Ormond Street Hospital for Lio’s particular issues, but was slow to respond and sometimes did not respond at all.  I had first decided on the good communicator.  But then, as fate would have it, a misinterpretation of voicemail led to Lio being booked in for surgery with the other surgeon as well.  After months of doctor visits and doctor phone calls and doctor emails and sleepless night after sleepless night I had finally made what I thought was the right decision—only to be thrown back into it all again because of someone’s administrative error.  I was exhausted and collapsed to the floor with the letter still in my hand.  Rather than get (too) upset by this—I was going to have to cancel with one of the surgeons and I did not want to alienate either one of them because I had no way of knowing who Lio might need in the future—I decided to take it as an opportunity to carefully reassess everything.

I put every scrap of paper I’d scribbled on about the two of them all around me on the floor, along with all their reports and emails, and I read through everything making a careful list of absolutely every advantage and disadvantage to the both of them.  It was brought home to me in that little exercise how well and efficiently Sasha and I made decisions together, how we would talk over the details, pull out the relevant issues, banish each others’ unwarranted fears and distill things down to their essence—and then just decide and not look back.  I’ve missed that way of talking things through more than anything these past few months.  Earlier on in our ordeal I seemed to have had an innate ability for making hard decisions quickly and well, but this time I was stumbling.  There was too much to process and there was no way I was going to become an amateur expert in paediatric orthopedic surgery overnight.  So without Sasha to bounce things off of I went with what my lists were telling me and chose the one with the highest recommendation from the director of the hospital.  I’m now very happy with this, but I will be even happier tomorrow when Lio’s surgery is done.  Please keep us in your thoughts and prayers on Wednesday the 18th.

While I’m extremely pleased we have something settled I’m trying to not let the worry that we’ve waited too long and his leg has grown even more crooked get to me too much.  Having settled on a date for surgery I’ve been trying not to let the preparation for it dominate our lives.  We’ve been distracting ourselves by getting reacquainted with playmates we haven’t seen since before the crash and focusing on a couple of music concerts Lio has had recently.  In the first one, Lio’s school’s Spring Tea, he played a couple of piano pieces.  He had just learned “Sea Chanty” (“Drunken Sailor”) from his wonderful new piano teacher and the other was a piece he had learned from his grandfather Nigel months ago called “Soul of Man” (“Canaan’s Land”).  During the second performance, the one I was at, he got a bit muddled in the middle of “Sea Chanty” but recovered very well and played “Soul of Man” perfectly—it was especially moving for me to hear Lio play that one in public as it is a song that has touched us all at some point during the past two years and was a song we played while burying Sasha’s ashes.  Lio also played in his second big violin concert last weekend at the large secondary school in Lewes and again I was pleased beyond words to see him smile as he took his bow.  He really likes music and has a real aptitude for it.  Some mornings he’ll even pick up his violin without my prompting, and when that happens my heart swells.  I can’t help but think how happy that must make Sasha, she who was so talented in so many things (music included).  I regret that I never did an instrument when I was a younger because I struggle to help Lio’s now when he’s wrestling with music.  But honestly I don’t really care how much he gets right or wrong, how well he plays or doesn’t; I am just extremely grateful that he is doing it, that he gets some pleasure out of it, and that when he’s doing it his other issues recede.  Nothing could make me happier.

But I think if you were to ask Lio what his musical highlight of the past several months has been he would tell you it was singing in the choir at Westminster Cathedral (the big Catholic Cathedral in London).  Lio had been mentioning that he might like to start singing so I started googling around for choirs near-by.  I came across an open day happening at Westminster Cathedral Choir School where boys aged 6 to 8 got to spend an afternoon and an evening wondering around the school, rehearsing with the choristers and then actually singing with them in the mass at 6:00.  When Lio processed in, limping only slightly, hands folded, wearing black vestments, he simply beamed the perfect image of a choir boy.  When he added his little voice to the Latin hymns which filled the enormous victorian church I was again overcome with joy for what we have.  As we left and headed for the train I asked him what he liked the most about his day at the choir school.  He said without hesitation, “All of it.  I loved every bit of it.”  I don’t know if he’s fully understood that it’s a boarding school and what that might mean, but I’m happy that he had the experience.

I’m glad he’s into his music because it’s the kind of thing he can do during his bouts of recovering from surgery.  The current operation is relatively minor compared to what’s in store for him in the autumn when we will likely begin the leg lengthening and straightening.  With a view to him having to spend some time in a wheelchair and in a walking frame then I’ve been looking for a new house, one with a bathroom and a bedroom on the ground floor.  But when Lio learned that we might be moving he was distraught.  He simply doesn’t want to leave our little house in Lewes, the house that was our house as a happy family, the three of us together.

It would also be difficult for me because the idea of moving to another house to accommodate a wheelchair stings a bit, it seems a slap in the face to the attitude that’s gotten us this far, an attitude which embraces possibilities rather than limitations.  But having made the decision to stop the growth on his leg there are some basic realities which have to be dealt with.  One of those is that a house with a bedroom and a bathroom on the ground floor will make our lives much easier.  And it’s also a pretty good time to buy a house and get mortgages.  So in the end, to help soothe Lio’s anxiety, I promised him there and then that we would never sell our house in Lewes and that it would always be here for him whenever he wanted.  While this did calm him somewhat the thing that really made him warm to the idea was actually going out to Kingston where the potential house is (the village where he goes to school) and playing in the garden of what might be our new house.  The garden is a mess, in fact it looks as if nothing has been done to the whole house in about 30 years, but Lio dove under bushes and climbed trees and imagined what we could do with the garden shed (he reckons we should turn it into a pizzeria, with seating for three).  That little visit was certainly the right thing to do, now it’s just a matter of mortgages and interim payments from the law suits.  It’s also a project that I’ll look forward and it makes me happy to remember that Sasha and I had talked for years about buying an old house and fixing it up.

The months since Christmas haven’t been all doctors, therapists, law suits, music and real estate though.  When the opportunity presents itself to have real fun we don’t let it pass.  I had thought of having Lio’s surgery during Lio’s half-term holiday week but when I realized it wasn’t going to happen I booked us flights to Crete.  Lio’s grandmother Trudy came and while we saw more snow than we did sun it was an enchanting little escape where (because of the time of year) it felt like we were the only tourists.  Lio hiked up to hill-top ruins and we played hide-and-seek among the ancient stone columns with the aid of his Christmas-present walkie-talkies.  And as he snuck under a barrier to sit on the actual 4,000-year-old stone throne of King Minos of Knossoss I forgot his leg and saw only a happy 7-year-old doing something fun if a bit mischievous now and with lots more adventures ahead of him.

The past few months have been consumed with trying to find the best way forward with Lio’s super leg.  We learned in September that it had started to grow crooked again.  The first surgery to remobilize his knee and to reactivate growth in his injured leg had worked brilliantly well for about a year and half.  Then the growthplate partially reattached itself to the bone and it started to grow crooked again.  We had planned to have another operation (a repeat of the first) to reactivate the good straight growth.  But when the surgeon in New York, someone I really trust, started to express some reservations about how well it would work we were all prompted to rethink.  The surgery planned for a few days after Christmas was cancelled and the past couple of weeks have been spent shuttling up to London to meet with pediatric orthopedic surgeons there.

We saw four surgeons last week and have one last appointment tomorrow.  After that one I want to make a decision quickly, maybe by the end of the week.  It’s clear something needs to be done and done soon:  the difference in length between the two legs is now about four centimeters and the angular deformity is now about 20 degrees.  This could pose potential problems for the alignment of the rest of his body.  The thing is, to look at him you barely notice an issue.  He seems to be going further every day, moving well, playing well, mastering the Chinese yo-yo (the diabolo), riding his bike and doing every wonderful, simple thing that six- and seven-year-olds do.  If you just look at him it’s impossible to say he’s not doing well and enjoying being a boy.  And on the days that his leg is not hurting him I can forget that anything is a problem for long spells of time.  For this I’m continually grateful.  But there is no denying that the angular deformity is getting worse and that he needs surgery.

The first step (probably), something that will be done in a month or two, will be to permanently stop the growth on his super leg before it gets any more crooked.  Giving up the hope for straight growth and permanently and artificially stopping the growing on his little leg is something I have some psychological problems with.  The next step would be to begin the very long and unpleasant process of lengthening and straighten which, depending on what surgeon you ask, might be done in one, two or three phases.  Each phase would imply months in a medieval-looking lengthening frame which would encircle his leg and have cables through the flesh  and attached to the bone which would have to be adjusted daily.  This will not be fun for Lio but he assures me that he can handle it (although he says he hopes it won’t hurt as much as the leg bending machine he was in after his last surgery).  Sometimes he even says it “will be cool to definitely have more operations than anyone else in my class” and he really likes when I talk about him having a “bionic leg.”  I guess we’re both lucky in our imagination.  That may get a work out in months to come but together I think we’re up for it.  The thing that looms in the background is the spectre of having to surgically stunt the growth on his good leg in order to spare him lengthening on the injured leg and to ease the medical management of things.  If I have problems with the idea of stopping the growth on his crooked super leg I can barely begin to describe my resistence to the idea of shortening his good leg.  Thankfully some of the better (or at least more confident) surgeons we’ve spoken to say that won’t be absolutely necessary, but they all do discuss it as an option.

Cognitively and socially Lio is flourishing and flowering.  He had a fantastic autumn term at his sweet little village primary school in Kingston.  His violin playing, something that evolved out of music therapy during his neurological rehab, has become a real part of his identity.  He especially likes being on stage and performing.  When he played a solo of Minisnoa at the school Christmas concert you could feel how happy he was.  Performing is a real motivation for him and he rehearsed and rehearsed his lines for his class Nativity play with an intensity I’ve never seen before in him.  He loved wearing his gold-thread embroidered shirt and making his big gestures at front of the stage.  Nigel and Penny came down to see the show and we were all proud beyond words.  I couldn’t help but think that Sasha was proud too.

As we were anticipating having surgery at the end of December, and a long period in a straightening frame after that, I really wanted to give him a tremendous Christmas and birthday before hand.  For his birthday party with school friends this year we booked Anne of Cleves’s House, a medieval house and museum just around the corner from where we live in Lewes.  We had a double party with Kate, one of Lio’s classmates with a birthday around the same time.  Kate and Lio helped brainstorm for the party and it was good to see him struggling and succeeding to articulate ideas about what he wanted included.  The two of them came into the hall dressed as a Tudor Lord and Lady to the huge delight of all their friends.  I’m hoping that won’t be the last time Lio dresses up for a birthday party but we are approaching the age of things not being cool—another bitter-sweet milestone.   They had a treasure hunt in the museum, and another outside in the garden, played “Tudor Bingo” with the names of their friends instead of numbers, tossed paper snowballs, ate cake and were buried under an avalanche of presents.  Once again I was struck by the generosity of our friends, not the in presents, but in the time and help and encouragement which has not diminished the slightest bit since the accident.  I don’t know why I’m surprised, but it was an utter success in every way.

We were back in New Jersey for the holidays and for Lio’s birthday on the 26th.  The clear skies, the snow and the great sense of space were a tonic after too many weeks of dark and damp English winter with too much panicking about Lio’s leg.  And with the operation cancelled, with nothing hanging over our heads, it was possible to simply enjoy every minute of it.  We went into New York City where Lio devoured the Christmas scene and where he got to play with his friend Sofia, the daughter of an opera friend from Italy who happened to be singing at the Metropolitan at the time.  Lio played and played with his cousin Kevin, who lives only two doors down from my mother in New Jersey, and after seeing each other almost every day for two straight weeks it was hard to pull them apart on our last day.

Lio’s grandmother was a saint as usual.  She was accommodating and generous in every way imaginable, considered in what she said and so marvelously helpful with Lio.  This meant I got to sleep in on serval occasions, a infrequent luxury for me.  We had Christmas Eve, Christmas Day and Lio’s birthday all with her.  She baked Lio’s birthday cake, I put the icing on it, Lio and Kevin decorated it with M&Ms, and he was buried under a mountain of presents for the third straight day.

It’s good for Lio (and for me as well) to get back to the States every now and again, to stretch out, reacquaint ourselves with the sun and unplug from all our medical and legal deliberations.  And now that we’re back home, recharged and relaxed, I find that my anxiety has been replaced with a sense of hope not just about Lio’s leg, but his whole future.  It’s easy to forget the progress he’s made if you spend too much time staring at x-rays.  He is really good at so many things I never imagined he would excel at.  His tricks with the diabolo and his songs on the violin are all certainly beyond me, but over and above that he is a wonderfully sweet and compassionate person, empathetic far beyond his years.  I’m also much more hopeful about his leg now.  One surgeon last week said, completely unprompted and without my fishing for reassurance, “He’s going to be fine.”  He’s going to be better than fine; he is going to have a marvelous life.

Today is exactly two years since the crash that killed Sasha and nearly killed Lio. When I think back on everything that’s happened and everything we’ve been through it seems surreal somehow, like the events of a film you watched years ago and are struggling to remember. It seems impossible that so much could have happened and that the road we traveled could have led through more joy than tears.

This summer was intensely emotional in almost every respect. We began it by burying Sasha’s ashes in the garden of the beautiful old mill house she found in an unfashionable corner of the Italian Alps more than twenty years ago. Her parents Nigel and Penny bought the place back in a time when it was possible for normal human beings to do such things and all of us (David, Sasha, Nigel, Penny and I) have worked on restoring and improving it in the intervening years. We chose a spot with a view of Monte Pizzocco, a favourite of Sasha’s and a mountain Sasha and I had climbed some years ago. It was a beautifully intimate little ceremony with just family, flowers, music, children dancing, some shared memories, lots of silence and a single pine log beacon that burned through the night into the next day. Like me at her funeral service in Lewes a month after she died it was clear that Lio did not want the proceedings to end. At the instant we were ready to start Lio decided that he wanted to draw one last drawing to put in the ground with the ashes. He took a sheet of paper and started to pencil tiny hearts on it. He meticulously coloured in each one until he had filled the entire page. I can’t remember him ever sitting still for that long at any task and it seemed like it took him half an hour. The sun shone brightly, the mountains were clear, we brushed the earth out from under our fingernails, went for a walk in the hills, drank nice wine, embraced, laughed and remembered her well.

Some days later we went to Lio’s favourite castle, Castello di Zumelle. The managers there, Renato, Lucia and their son Nicola, had been our friends for years but since the accident they have become especially close. They knew Penny had been marking each month since Sasha died by making a large moon-shape collage of leaves and flowers and seeds and other natural material (Sasha had died on a blue moon). They invited her months ago to mount a show of her work at the castle which would open on the feast of St. Lorenzo, Zumelle’s patron saint. With only a little convincing and cajoling she agreed. It was extremely rewarding setting it up: the moons, Penny’s silk screens from decades ago, her paintings of Sasha and David, and photos of other environmental sculptures she had done quietly in the corner of a common near their house in London. Lio shuffled about bringing me wire and pliers and string until he got bored and scooted off to climb the tower with Nicola. On the day of the opening there was a mass in the castle at which a little local choir sang and Renato elegantly spoke about Sasha and Lio. Afterwards the show was formally opened and about a hundred or so people enjoyed a buffet with some very nice prosecco. Later that evening there was a harp concert out in the castle’s courtyard and from behind the open doors of the exhibition hall Penny’s large red portrait of Sasha had a perfect view of everything. Simply put, it was an exceptionally beautiful evening.

Over the past months of thinking about how to bury the ashes we had also been giving a lot of thought to a marker or a monument or a stone of some kind. We decided we wanted a bit of the Dolomites, a bit of that lovely pink-orange marble shot through with quartz that makes the sunsets in that part of the world so dazzling. Down below some of Sasha’s favourite mountain walks is a small valley called Zoldo dotted with sweet little villages that haven’t changed much over the centuries. In nearly each of these villages though there is a very modern marble fountain. These very abstract forms seem a bit out place given the slightly dilapidated surroundings but maybe that’s what Sasha liked about them. In any case, she was really fond of them so we decided to see if we could find out where the stone came from and maybe get some for our marker for Sasha. After several trips in the rain and snow last spring and winter, asking around in village bars and shops, we were finally directed to the quarry. I made some calls this summer and eventually got to speak to the surveyor in charge of selling the stone. We met him at the quarry one afternoon and explained to him what we were after. He was so moved by what we told him about our search for the perfect stone that he offered to give us two great big boulders for free (if we arranged to have them delivered). Lio was on fine form that afternoon, asking the surveyor about his family and even inviting him out to pizza with us later that evening. He smiled a broad smile, politely declined and left Lio to play among the rocks.

As Lio scampered through the boulders I couldn’t help but think the doctors back in New York would pleased with how well his leg is doing when we see them in a couple of weeks. Things seem to be going wonderfully well on that front—while Lio still has an obvious limp and deformity, and while he still complains of pain some of the time, he is completely unafraid to use his super leg and there are times when both he and I can completely forget it’s an issue. I sometimes get a bit nervous when I let his leg-exercise regime lapse on holidays, but it never takes him to long to regain his flexibility after our little breaks. His strength in his leg is simply amazing, and as he will tell you at the drop of hat he managed a two-hour hike up a mountain to a little church (although I admit I did tempt him along with the hope of finding a hidden castle and evading parties of marauding orcs). I’m grateful for his persistence and his perpetual willingness to try. I’m also grateful for my ability to encourage him and get the best out him. I made a little promise to myself that the next time I caught myself worrying that I wasn’t doing enough to find more or better treatments for him I would remember that hike in the mountains; I would remember particularly the moment in which Lio was so motivated to climb on in search of the castle that he cried when I told him we had to turn back because it was getting dark and I might be afraid of monsters.

After Lio and I had done our trek I took my own walk up into the mountains for couple of days. It was the first time I had been away from Lio for two full days since the accident; I went with a friend that I knew from Lewes. We walked above the clouds on some of the same mountains I had walked with Sasha. It was exhausting, glorious and transcendent, a sort of line under the very deep sense of loss I wasn’t sure I’d ever be able to shake. When I returned Lio ran into my arms and I felt we were both a bit more relaxed for my time away. I was simply happy to have my boy back in my arms again, and while I know there is no end to the list of therapies that I might be trying, and no limit to the amount of time that Lio wants to spend with just me, we’ve both done a pretty marvelous job getting this far.

This summer was especially lovely in that the lack of medical restrictions and urgencies meant we could all concentrate on our own favourite little projects with Lio. My mother, who was with us around the burying of Sasha’s ashes, read to him everyday and organized wonderful little treasure hunts for him. Penny drew with him and Nigel did music exercises with him. And without other children around there was rarely the temptation to compare Lio to peers. This meant that I saw only his accomplishments—his moments of profound sympathy as we lay Sasha’s ashes to rest, his ability to follow quite complex instructions while we were building him a treehouse, his fertile imagination battling orcs with a wooden sword after watching the Lord of the Rings films on rainy afternoons, his startling ability to pick up music so quickly, and his delight at being able to pull himself further than he had the year before at his favourite adventure park (ropes and nets and pulley-slides strung between tree branches outside a town in France where we have friends). In all these moments I see only what he has, what he does and the joy he experiences. I wish I could bottle these up and save them for when I find myself wishing he could speak faster with his friends on the playground or sit for more than a minute without fidgeting while doing exercises or not deteriorate into wild silliness when things get a little stressful. We may have a ways yet to go, but he is only six.

While I miss Sasha everyday and while I would be lying if I said I never pined for my old life, the life Lio and I have managed to create in the wake of the accident is a remarkably beautiful and fulfilling one—better than I could have possibly imagined. I spend hours with Lio everyday coaching him through concentration and memory exercises, music, reading, numbers, Lego building, wrestling and just silly playing. All this is great for his continuing neurological recovery but it’s also good for me. In fact I’ve come to think that Sasha’s last and probably greatest gift to me is an awareness of how precious my time is with Lio, and the opportunity to make the most of it. But I’m also aware that not much of what we’ve been able to achieve over the past two years would have happened without all the love and support we continue to feel on a weekly basis from family and friends not just in Lewes but around the world. For every card, every email, every web page comment and every kind thought I remain continually grateful.

Three weeks ago Lio and I went to my brother Anthony’s wedding in the Caribbean. It happened to coincide with Lio’s half-term holiday and my mother was putting us up in a nice house she had rented for everyone. Despite a bit of first-day sun burn, he enjoyed every minute of it. Tearing around the whiter than white beaches, building sand castles, playing in the bluer than blue water, he was in fine form. He even learned how to snorkel. We took lots of work with us and were pretty good at doing his speech and language exercises and his brain gym exercises. We even schlepped out his violin but he only opened it once or twice just to show aunts, uncles and cousins that he could play a bit.

He loved playing with his cousin Jordan (a few months older) as he always has done. Although I couldn’t help but get a little anxious in watching them together. When they had been together before the accident I had always marveled at how mature Lio seemed by comparison, but now the opposite seems true. He has fun, he has such tremendous, uproarious, hilarious fun with her, but sometimes he gets a bit carried away and makes a big scene of pee-ing in the pool or throwing his clothes out the window or eating leaves. He is getting better, especially with his evening bouts of euphoria which have ratchetted down several notches — and most of these antics can be put down to him simply being a six-year-old boy. The problem is mine more than his really: I just have to learn simply to not compare him and to remain focused like a laser on what he is doing well rather than what I’d like him to be doing (the music, the sense of adventure, the try-anything spirit, the willingness to talk to people and ask questions). And for all those things I am extremely grateful. He was, for instance, an absolutely ace snorkeler, doing it time and time again with real persistence and determination. He only had a few moments of fear and frustration otherwise it was pure joy. He would yell excitedly down his snorkel and point as he saw sting rays and star fish, crabs and wavy coral. If I must compare, he did this far better than any other six-year-old we saw that week.

I changed our flight to stay an extra day because Lio was enjoying it so much. And due to a booking error on Virgin Atlantic’s part we ended up staying another two days. This meant Lio got to snorkel with giant sea turtles which we found on St. John’s Island, certainly his favourite adventure of the trip. He swam all the way down to the bottom to be with them and to grab some of the seaweed that they were eating. Back on the beach he was telling our uncle Dick that he had swam all the way to the bottom. Dick asked him why. His response really threw me, he didn’t say to see the turtle or to get some seaweed but he said, “To make papa proud.” It moved me far more than I would have ever expected to hear my little boy say this. I was struck again the quality of our relationship and my influence over my little miracle. It was “awesome” in the real nature of the word and I worried a bit about using this influence in his best interest.

Back in England Lio, tanned and happy if a bit tired, spent days recounting the highlights of his holiday to his patient friends. We’ve been striving to take advantage of the good weather as well with exercises outside and lots of bike riding which Lio, up until recently, has really enjoyed. Within the past few weeks however it’s been a bit more difficult for him: one of the older boys at school had shown him a trick of taking hands off of handlebars and clapping while riding. Lio, wanting to be like the big boys, now tries to do this. He, of course, falls and scrapes knees and hands. I tell him, yell at him even, to keep his hands on his handlebars, but he just sobs and tells me that he “has to clap”, that he cannot help it. He’s finding it so difficult to override this compulsion that he now would rather not ride his bike at all. I find this terribly sad, but I think I can get him over it by just getting him on his bike again and gradually increasing the length I expect him to ride with his hands on the handlebars. He will remaster it and will enjoy trying—if only because I will be bribing him heavily at every step of the way. It’s just a matter of regaining control over his impulses. Wrestling has worked in the evenings to subdue his risky behaviour at home, and we’re working on taming other ticks. I’ve adapted one of the psychometric tests used by one of Lio’s psychologists to help in that regard: I have coloured word flash cards and I give him a set of rules which require concentration and the ability to control an initial reaction. For example, I tell him to read all the words on the cards but when he comes to a blue word he’s meant to say “red” and when he comes to a green word he’s meant to name and animal. He’s got to control his impulse to simply read all the words and simply name the colour that he sees. He seems to be getting better at this little exercise if not his real-life moments of impulsivity. In spite of his bicycle clapping issue I take great comfort in the fact that setbacks like these are now fewer and farther between. It’s five steps forward for every one step back rather than two ahead and one back.

Last week I had quite an intense meeting with my lawyers. It was our first meeting with the barrister after all of the initial reports had been submitted and all the expenses tallied. Eric, my very calm, reassuring and straight-ahead solicitor, met me in the lobby of the barrister’s nice London office. He said as soon as he sat down that the good news was that Lio’s potential claim is one tenth what he imagined it might have been when he first met us in the hospital. This is “good news” because it means that Lio’s recovery has been so extraordinary that he will need less monetary compensation. And I was grateful as no amount of money could ever compensate for the losses as they were first conceived. That was the good news. The somewhat astonishing news, is that despite all of the anguish and the tears we have endured this past year and half our situation probably does not fall within the very limited definition of “pain and suffering” established by British law. So a claim for that seems unlikely. More stunning even than this is that the maximum claim for the loss of a mother (for the entire life of the child) and the maximum claim for the loss of a spouse have been capped by British law at £5,000 and £10,000 respectively (I’ve written and you’ve read correctly: £5,000 and £10,000). Of all the things I have missed about America I am now perhaps missing its legal system most of all. There will be lots of other money though for Lio’s treatment, our loss of Sasha’s income and other things, and I’m sure we will be fine financially when the dust settles but just having these figures in front of me was a slap in the face.

Glad to have the meeting over, as if a distraction from my real job, as I took the train back home from London I put on my headphones and refocused on what I’m doing for Lio right now. I’m reading voraciously trying to get his diet sorted out. After having been told by Lio’s neurologist that what works for ADHD children might also be useful for Lio, I’ve immersed myself in nutrition and brain chemistry. Apparently, and surprisingly, most fruit, especially apples (of all things) is to be avoided in cases like Lio’s because it contains salicylates, a substance that can interfere with brain function. We’re also doing lots of brain gym exercises, in particular those which activate the corpus callosum (the structure which connects the two hemispheres of the brain and a site of some of Lio’s injuries).

On top of that, Lio’s learning lots of music, something that was recommended long ago as good for recovering brains. He’s continuing with piano and violin. In fact his violin goes almost everywhere with us and he’s really proud of what he can play. Glyndebourne, the most important opera house in Britain, is less than five miles from Lewes. As it turns out one of the tenors there, a charming and gregarious Italian named Massimo, has his daughter in school with Lio. We’ve naturally been spending a lot of time with them since they relocated here a few months ago. Two nights ago we were having dinner with Massimo, and two other Italian opera singers and a French harpsichordist from Glyndebourne. Lio insisted on bringing his violin and in-between some exquisite pasta and soaking the other two children with a water rifle he got out his violin and serenaded everyone with a perfect rendition of Twinkle Twinkle Little Star, followed by somewhat halting interpretations of Lightly Row and Song of the Wind — all met with rapturous applause. He thought nothing of it. He is so brilliantly ready to try and really does think of himself as someone who is capable of anything. We will work with that.

As if in a last ditch attempt to keep us in States a bit longer, Lio’s grandmother arranged for nearly a foot of snow to fall during our last two days there. While it didn’t stop Virgin Atlantic it did offer Lio and his cousin Kevin a great opportunity for some sledding and snowman building. It was a lovely way to end an otherwise intense week. All of the doctors appointments went extremely well and it’s always nice to spend time with family back home. Friends made long trips with kids and pets to come and visit us and it was lovely to see Lio at play with them in the wide-open spaces of rural New Jersey. Next time though we’ll schedule less and enjoy more.

When we came back to England we faced the run up to Mothering Sunday. Lio’s teacher, the saintly Mrs. Dumbrell, was a bit worried that Lio might feel somewhat left out with all the other kids making Mother’s Day cards and talking about their mums. So she suggested that the school organize a cake sale to raise money for Sasha’s scholarship fund. We had expected it might raise just £30 or £40 for the fund but when the dust had settled we were all shocked at the total of £250. Almost every family in the school contributed something, from organic, free-range lemon sponges to decidedly delicious but unhealthy chocolate chip cookies (made by Lio and Alice). Kids bought biscuits during playtime, parents bought cakes by the bag-full after school on the playground and I was reminded yet again at the goodness of people and of warm and caring the community around Iford & Kingston CE Primary is. The local paper, which has taken to calling Lio “Lewes’ little miracle,” ran a story about the event after he and I had received the hand-drawn big cheque at an assembly last week. As usual, he’s very keen to show anyone he meets the article with a big picture of him and all his school friends.

We had a bit of set back on Easter Monday. Things had been sailing along so smoothly for months. At physiotherapy I’ve been combing his leg exercises with speech and language exercises and number work; both Niki his physio and I had noticed a tremendous improvement in recent weeks. The length of time he is able to concentrate was also inching up as well and our wrestling was dealing with a lot of his impulsivity. He was enjoying being a six-year-olds in the company of other six-year-olds. On Easter Monday, after snow called an early end to the nice bike ride we were having down by the river in Lewes, we decided to go to the big Victorian aquarium in Brighton with Lio’s neighborhood friend Chrissy. They lapped it up for the first hour, bouncing from touching crabs to imagining what piranhas would do if you stuck your hand in their tank. We were heading to see the shark feeding when the boys dashed off through a long glass corridor under the enormous turtle and shark pool. Lio was trying to catch up with Chrissy when he tripped in the crowd and fell on the corner of one of the wooden benches. He let out one of those shrieks reserved for real pain and blood started gushing down his chin. He had knocked out a tooth and loosened two others. Fortunately the hospital was only five minutes away and they were all baby teeth so there is no permanent damage. But it upset me more than I expected it too. I so want him to have as normal a childhood as possible, to be able to be physical and chase after friends; and, as much as I might want to sometimes, I simply cannot and will not wrap him up in cotton wool. It was just an unfortunate combination of things: having a great time with one of his friends plus some impulsivity plus being a little unsteady on his super-leg plus a large crowd in a zig-zaggy corridor plus a bit of Easter chocolate in the morning equals a trip to Accident & Emergency. Given how much he does and how eager he is to play full-tilt I’d say we’ve done remarkably good job of avoiding trouble so far.

Still, when he smiles now and he laughs with his mouth open I can’t help but wince a bit (though I’m trying very hard to do this internally). One of the things that Lio has going for him is that he is simply a gorgeous child — dozens of people have said so again and again throughout this whole affair. And, now that the swelling has gone down from his lips, he remains a beautiful boy — perhaps a bit more so now when he smiles with his mouth closed. But he had already (naturally) lost his first two baby teeth last year and two of these injured choppers were the next to go. In a year the new ones will be in without too much fuss. And his natural charm will compensate in the interim. But I must admit to still being a bit phased by the whole event. I was spending more and more time every day oblivious to Lio’s “special” status, he was more and more like any other normal child his age. But now, every time he cracks his bashed up smile, it’s hard not to be reminded that we still have things to work on.

Lio, is not at all phased though, his bruised mouth is just another badge of courage for him that he’s proud of on the playground. And apart from the teeth he seems to be showing no other ill effects from his fall. This morning he woke up bright and early as usually, and after some help dressing made his way down stairs, got his violin out and started practicing before I had even made it out of the bathroom. He may still have some issues but tenacity is certainly not one of them. While we were back in the States a few weeks ago, after getting tangled up on a problem in one of his psychometric tests, the doctor complemented him on his effort. Lio said without missing a beat, “You know Dr. Dan, I always try.” I almost teared up with pride.

He’s had lots of opportunity for that charm of his to shine recently in media appearances beyond the local paper. ITV is doing a documentary about lorry traffic on motorways and came down to interview us. Lio shown brightly for them tearing around the medieval priory ruins on his bike and then dazzling them with “Away in a Manger” on the piano — his favourite song to play. The interview was a bit harder for me with the expected emotionally fraught questions about the accident and then struggling to communicate why I wasn’t really interested in blaming anyone in particular, which is not —I think— the response they expected. In the end though I got the impression they were pleased with our contributions. The producers were extremely sweet, so much so they even sent us flowers a couple of days afterwards. While these experiences remain a bit taxing for me, after they’re over I find they put me in a space that I quite like being in. There is something about having to vocalize my memories of Sasha and our lives before the crash that makes the after-the-crash life not simply more bearable (because it is so beautiful in so many ways) but that bridges the divide between them somehow, that helps me remind myself (even as the rest of world so often says the opposite) that Lio and I are the same people.

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.