Back in June, a few days before Tom received his first implant, Nik visited the Ear Foundation for an open day. Directed at prospective/potential implantees and their families, the day was a tremendous source of information imparted not only by professionals but also those who’ve been through it and went a long way to addressing Nik’s concerns. What it also did - probably the most important benefit in fact - was prove that we weren’t alone.
I don’t have many clear memories of my teenage years; age and a general feeling that I didn’t enjoy the experience very much has led to a suspicion that I watched those years on a bootleg videotape rather than participated in them. One of the few clear memories I have, though, is of having a persistent feeling that I wasn’t really in on the joke. Life was going on, sure, but when I approached, all the participants put their hands in their pockets, started whistling (metaphorically of course) and waited until I’d gone away until continuing with life without me. Why am I bringing up this crushing teenage paranoia? I’m not entirely sure; it might be to do with the fact that I’ve been awake far too long today but I did feel a sense of exclusion again during the early appointments after Tom’s deafness was diagnosed. As a family we were isolated; we were told about this group of people like us but, until we spoke to or met any of them, it didn’t really help.
This is where The Ear Foundation come in (it’s also where
CICS, the
meningitis trust,
NDCS and the
CICircle to name a few come in too, bless ‘em all). On that day in June, Nik learnt a great deal about devices, therapies and services but she also met Donna and her son Noah. Noah is a few months younger than Tom… there isn’t much in it…but that isn’t where the similarity ends of course. Noah and Tom also share the misfortune of contracting pneumococcal meningitis at the same time, and losing their hearing as a result. I wouldn’t wish the pain, tears and heartache of what we’ve been through on anyone but to be able to share with people who know exactly what its like without any need to explain… it has made an enormous difference.
Contact with Donna, Richard (her husband) and Noah has continued through emails, phone calls and a brief meeting. Last weekend we met up again at the Ear Foundation’s family weekend in Centerparcs where we sat in a restaurant chatting about our boys and our experiences. Tom and Noah charged around, laughing and just being two years old. We could have talked all evening.
So they did it - Tom's Grandpa Will organised an assault on the summit of Ben Nevis in aid of the Meningitis Trust and they all made it unscathed. That's snow on the ground you can see but still proudly wearing short sleeved T-shirts emblazoned, if you look carefully, with Tom's grinning face.
That was all a very meandering introduction to the real thrust of this post. If you follow the links and read some of the journals then great but more to the point, I've got to know some great people through IgoUgo, many of whom have been very kind and have sent supportive messages over the past year or so. Kristin has gone some distance further than most. Last weekend she took part in the Three Peaks Challenge, raising money for the meningitis trust, a charity that, not so coincidentally, have been a part of our lives during the past year. We have been the beneficiaries of financial and counselling support from the trust; support that has been a vital part of Tom's and our recovery.
Now I'm pretty certain that Kristin was going to tackle the challenge before she read about Tom but it is wonderful to know that she took on the peaks with our son in her thoughts and those of her fellow walkers. Each person on the climbs carried with them a pebble, engraved with the name of a meningitis survivor and Kristin's carried Tom's name. She also took with her a couple of T-shirts; one for Tom and one for herself. It was the shirt for Tom, now signed by all those involved, that arrived in the post this morning and was the cause of a tear or two.
