One Small Step

Apr 4 2011

It’s amazing how much can change in just ten minutes. Today, as Hayley had her Mother’s Day sunbathe, Camille went from a tentative stroller to a confident walker. This could be a major change in our lives; with Camille walking she can hopefully gain some more independence, play with her cousins and friends and get things for herself, probably sparing a lot of the frustrations that make her angry each and every day. Today could be a major turning point for Camille; we all hope so.


It’s been a gradual build up though. Hayley and I have suspected for weeks that she has been able to walk freely, but a lack of confidence has prevented her from letting go of that piece of furniture, hand or wall. Over the last week we have managed to coax Camille into walking between Hayley and I in our bedroom where the carpet is nice and soft. Tentatively, she took baby steps with an unorthodox gait between the two of us. Over the week she has pushed it further and further given her a little bit of extra confidence each day. We had an appointment at the Physiotherapist on Wednesday which wasn’t a great success, probably a little too early for Camille. As soon as the physiotherapist attempted to get Camille walking the tears began to flow and the screams shook glass throughout the building. Camille wasn’t prepared to branch out and walk in any other room apart from the safety of the soft carpeted bedroom.


Yesterday the improvement continued; Camille now willing to just walk with Hayley in attendance, turning as she got to the door of the bedroom and going back to her Mummy. Any suggestion of expanding her repertoire out of the bedroom would be met with a startling scream and a slump to the floor in defeat. So imagine my shock today, with Hayley by the pool and Lucia watching Tangled on DVD; Camille asked to go and walk in the bedroom, which I obliged. After almost running around the room for a few minutes, I got my camera out to film her and dropped Hayley’s laptop, suddenly a “blue screen” faced me and the thought of Hayley thrashing me into tiny pieces for losing all of our photos. As I hurriedly tried everything to get the laptop up and running again (nothing was working), Camille said “Do you want me to walk to the sofa?” You know what it’s like, you’re trying to do something urgently and a little voice says something run of the mill yet in this case, somewhat out of the ordinary. I did a double take as Camille pranced out of the bedroom into the living room and over to the coffee table. She then proceeded to stroll around the apartment for the rest of the day. That’s all it took, one confident stride and no pressure. You’ll be glad to know that the hard drive had just popped out a bit and I needed to push it back in again; no photo loss and no blood spilt. It was a perfect day for everyone.


We have had loads of appointments this week in addition to our normal daily proton therapy visit. We went to see the Occupational Therapist early in the week; this was exactly what we want to achieve with Camille’s Appeal. They had a standardised assessment that they worked through with Camille to properly assess her against standards for her age. It seems so simple, but yet we don’t have that in the UK. We want to get a copy to bring back with us as it forms that basis of Camille’s rehabilitation and the foundations of the Camille’s Appeal charity.


We also had to go back to see the child psychologist. This time I took Camille by myself and on arrival, I was ushered back into the waiting room so that she could spend some one on one time with Camille to get a good idea what she was like. I settled in with TIME and read a fantastic article on the Singularity (seriously, buy a book on it) and after an hour I was called back in. Camille was in a cracking mood after playing for the whole hour; she had been telling the psychologist all of the things she does in hospital, confused her with what Jimmy Jammers are and explained how she doesn’t like American sausages. The good news is that the psychologist was pretty happy with Camille giving me confidence that the two years in hospital and the constantly fussing parents hasn’t screwed her up. She must be a strong little girl.


We only managed to get through four proton treatments this week. Friday, April 1st, I received a call at 7.30am from Gina at the Proton Institute to say that the machine would be down all day and not to come in. After putting the phone down, I sat there and realised it was April Fool’s Day and considered whether it was an elaborate plan to swash buckle and bend me. Clearly it was real and now we are faced with a flight another day later and any more delays pushing it out into a further week. I hope not, I don’t think my boss can take it!


The Proton Institute is great, the whole team are wonderful. Lucia loves the time when we leave though as a particular receptionist always calls after her to see if she wants a “Suurrrrcccckkkeeerrrrr!!!!!” The first time she wailed the immortal words “Suuurrrrccccckkkkeeerrrrr!!!!” Hayley turned and looked at her as if to say “What did you say to me?” For those of you who are trying to work out what the flinging flang a “Suuuurrrrrrccccckkkkkeeeerrrrrrr!!!!!” is, it’s a lollypop. So Lucia walks really slowly past the Sucker lady touting for surgery treats. However, this week, old Sucker went off piste and pulled out some green surgery birds out of her drawer. For those of you who are a Dave Coaches fan from Gavin and Stacey, Lucia spent the rest of the week referring to them as her “Sugar Chicks”; priceless.


We spent the pre Mother’s Day day in St Augustine, the oldest town in the whole of the United States. It is an amazing place to go; it couldn’t look more like a set from Pirates of the Caribbean if it tried. It had the old Spanish style architecture with nooks and alleys leading to little shopping arcades. The water’s edge boasted an original fort that kept the sea dogs out and the land lovers in, there was even a pirate ship sailing around the waterway. The only problem with St Augustine is that a whole band of morons have decided that a good way to make money in a wonderful American landmark is to set-up rubbish shops that sell the sort of tat that you would expect from an old run down British seaside resort. It was really unfortunate; the only silver lining was the odd shop of any quality, but they were few and far between. The taverns looked great and by the time we left I would have chewed my right arm off to sit in one of these little establishments with a cold brewskie.


I wouldn’t be giving a full and frank account of the week if I didn’t mention my near death experience. We arrived back from Proton in the rain midweek to find a youngish lad sheltering under a car port near where we park our car. After we unloaded and started to walk towards the apartment he politely approached me and in a soft voice asked if I’d give him a lift to somewhere I couldn’t make out. I thought it a little forward so said I couldn’t, I had to get the kids in and left him. I looked out a few minutes later to see if he was still there and saw another lad running across the community street. We asked the girls at Proton what we should have done, after all he did look quite sweet and he did speak so politely/ They were unanimous in their advice that we did the right thing; apparently there is a lot of this and there were probably a few of his mates behind a bush somewhere. I don’t think either Hayley or I are convinced that this was the case with this young lad; we both think we have seen him since and would you bother robbing someone in the rain, I wouldn’t.