Lio Spinelli

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.

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