Thursday, September 27, 2007

Hectic, as ever

I really promise I will keep this blog updated more from now on. Things have been so hectic since we came home from hospital. We have been trying to sort out William's statement of educational need, something that never seems to work out as easily as it should and we are still having meetings and discussions about. In the meantime, I have been settling William into playschool for 3 afternoons and one morning a week. William can not be left without either myself, Paul or a qualified nurse. Thankfully, they have agreed to provide a nurse for William at playschool, despite the fact his statement has yet to be finalised. Luckily for us, one of William's lovely respite nurses works around a school day so this is perfect for her. William adores her and they both seem to have a lot of fun together.

On top of all this, Hope has been setting into her secondary school. She has grown up so much, perhaps too much. It is lovely that she is making lots of friends and likes to incorporate a social life into walking home. We have had to spend the last week or so reigning her in a bit and reminding her that she is still on 11 years old and her whole life can not just yet be organised through her mobile phone. Hope hs been chosen as a school council rep. She is also keen to play basketball and football. These clubs take place at 7.30am so we are set for an early start tomorrow.

We are all getting a bit sporty these days. Paul is currently searching for a gym to join as it has been ordered by the physio as part of his rehab. Hope and Ellie are both about to start a Christian Football Academy, Kick London, that is being organised through church. I am to be a coach at the academy and am in the middle of my FA level 1 coaching certificate. This has taken place on 3 evenings and all day last Sunday. This Sunday is assessment day when I have to deliver a 15 minute session, based on a game given to me last week. My game is a bit of a tricky one involving throws, heads and catches in a 5 v 5 game.

It is all very hectic and, as usual, the appointment letters for William are piling up. He is due to go to the muscular dystrophy clinic at Hammersmith Hospital at the beginnig of November. It now seems that he does have some kind of progressive neuropathy and this is the best team to monitor and help him with this. With his motor deterioration and time spent attached to his TPN in mind, he will soon be given an electric wheelchair. We tried one out on Monday. It needs to be adapted to make it a lot smaller and enable him to reach the controls. This will take a couple of months. This is fine though as William needs a few more lessons with the occupational therapist to learn how to use a joystick to control a chair. Tomorrow, we are being visited to see exactly what we need to do to our house to make it accessible for William. It looks like a major rebuild will be required.

It is all these practical things that dominate our lives so much. I have been juggling two part-time jobs, working from home, with it all. I have just come to the decision that it is all a bit much. One of the jobs - being the director of "The Brompton Fountain" works very well but the other is very stressful. I won't go into too much detail in a public blog. One thing we learn time and time again on our journey with William is that life is just too short. I am also fed up with playing catch up the whole time. Now I can put all my work energy into building The Brompton Fountain. Funds will be a little tight but I am a strong believer that things will work out if it is the right thing to do.

Tuesday, September 18, 2007

Another Year, another challenge.

It has been a while since I updated this blog with any regularity. So much has been happening and we have been so busy, in and out of hospital, possible diagnoses, starting schools, statement of educational special needs... I promise, I will catch up on all the news over the next few days, and show you some lovely pictures. For today, I want to tell you all about Sunday.

During July 2006, Paul was run over and spent a month in hospital with a horrific leg injury (He has only just been able to put two shoes on again in the last few weeks and finally has a leg that is not held up with mechano see William's physical disabilities were becoming apparent and, I have to confess, I was struggling. A good friend of mine, Emily, was struggling even more. She was in the end stages of cystic fibrosis and her lungs were barely managing to stay inflated for a few weeks at a time while she waited for a call to say her turn had come to get new ones. One day, I received an email inviting me to join "Emily's Angels" in doing the Hydro Active. Emily was planning to be pushed around in her wheelchair, attached to the oxygen that was keeping her alive 24 hours a day. Not only that, she was going to turn up the oxygen and walk the last 500 metres. To you or I, that would be an ultra! I took up the challenge and decided to raise money for CHASE, who were keeping me sane at the time with support at the hospice and in the community whilst I juggled looking after William and visiting Paul (the girls were at Grandma and Grandads). I planned to walk with Emily and her angels but felt shamed by her 500 metre walk and William's courage as he totters about, falls and gets back up again. If they can do that, I can run 5K, I thought. So, I dusted off a pair of trainers that had not seen a pair of feet for over 10 years and went out for a run in the park. Meanwhile, Emily was in and out of intensive care with her ever deflating lungs and many of us worried that she may not make it to walk those 500 metres. Emily the biggest fighter I know and escaped from hospital to walk over the finish line. I managed to jog around and finished in 32 minutes.

Yesterday, Emily and I were back at the Hydro Active Women's Challenge. A year is a long time and in the last 12 months Emily has had a double lung transplant. I have spent the last 12 months getting ever more addicted to running and more and more serious about my training. So, this year there were 2 major changes. Emily planned to walk the whole 5K, while holding a banner showing herself last year, in her wheelchair on oxygen, and this year, walking and bouncing along. I planned to run a PB and dedicate it to her and William, the inspirations that got me running. It was exciting as well because Hope and Ellie joined in with the Angels. It was also the first time I had put a team together to run for the charity I direct, The Brompton Fountain.

We got t Hyde Park at 9 to get ready to say hello to the team and prepare for a team photo. Granny came to look after William and I left Hope and Ellie with Emily and the other angels before taking my place at the front of the mass start with other club runner capable of a sub 25 minute 5K. We were just behind the elite runners and celebs so got to watch them all be introduced to the crowd. It was really exciting being at the front of such a big event and to set off on the clock. We were away within seconds of the elite runners and could even see the time car becoming more and more distant on the first stretch. I had a clear run and, as usual, set off a bit too fast. However, I managed to keep pretty close to my starting pace and finished the first mile in under 7 minutes I could have kept pushing at that pace if my legs were not a little tired, untapered in the peak of marathon training. I didn't drop too much though and kept my pace below 7:30 most of the time. Just before the final turn, I was counted in by an official letting me know that I was in the top 100 and would receive an official time. As I approached the finish, I could hear the announcer tell the spectators that the runners finishing now are all strong club runners, capable of keeping the pace throughout the course. I finished at 22:18 on my Garmin (which also told me I had run a few metres long). On crossing the line, my number was taken and I was given a bottle of Hydro Active. What a difference from last year when I staggered across the line, red and puffed out in a tutu! It was a strange experience. The area where the goody bags were given out was almost deserted and my photo was taken by 2 official photographers and 2 more asked if I wanted one. Later, when I finished again with Hope and Ellie, we had to queue to get a picture together. I walked past Meseret Defar and Jo Pavey wondering around, waiting for interviews before heading back to find Hope and Ellie. My official time was 22:27 and I came 81st out of more than 15000, many of whom were walking. I am listed, beneath the elite athletes, in the race report on the Hydro Active website (

I am not known for my great sense of direction so I wandered back to the start and jogged along to find the back of the race. Eventually, I caught sight of Emily's banner and found the girls. We walked the rest of the course together and made a pact that, if the girls can jog it next year, I will do it with them. I did enjoy being up at the front though and would love to make up a bit more ground on the elite runners in front. I WILL go sub 20 in a 5K on tapered legs sometime in the not too distant future. Emily did really well and even managed to run the last 300 metres - amazing! Ellie ran bits of the last mile and ran over the line. (As I walked over the line again, I hoped people would notice that I already had a medal on and was not finishing for the first time).

After the race, we met up with William and Granny again and had a picnic with Emily and some of the Angels. Paul turned up after singing in Church and, by now, it was getting a little cold so we headed off to the Science Museum to see William's beloved engines before setting off for home to catch the highlights. He also had great fun playing with Hope and Ellie with the hands on games in the Launch Pad.

It was a great day that marked for me how far I have come with running this year and that I can feel that there is more to come. Emily was as inspirational as she always is. As a Mum to a child like William, Emily's Mum inspires me at least as much. Her strength and amazing personality has, doubtlessly, contributed so much to what Emily is today and if I can just be part of the Mum she is I will have succeeded so it was great to see her again too. Hope and Ellie had their first taste of a big running event and, I hope, got inspired to work towards running in future. Above all, we had a lovely family day out. Next year, I will develop the charity participation to include a family picnic. It won't be the Hydro Active next year as it becomes the Addidas Women's Challenge. It will remain a special day out for me though. I will always have a soft spot for the race that got me running

Wednesday, September 05, 2007

Hope's first day

We are finally home from hospital and there is lots to post to catch up. This is a quickie though as I am about to go to bed. Hope started secondary school today. What a milestone day! She had a great day. I marked the day by having a "feel younger and fresher" hair cut. Much needed, not least after the weeks in hospital. The girls also had hair cuts and Hope had her first grown up layer cut. You can see that on the more relaxed, after school picture..

We are still up at the hospital every morning for IV drugs for yeast. William lost his line to a yeast infection that made him very poorly and we have to treat to protect the new one. I will post a longer entry to tell the whole story later in the week, after I have got all urgent work done!!