Thursday, 16 August 2012

From Olympics to Grand Rapids …

So, did everybody enjoy the Olympics? Go Team GB! As Brucie (for those old enough to remember) used to famously say "Didn't they do well?"

In April of last year I entered the ballot for Olympic Games tickets. I had a notion in my head, and a hope in my heart, that 2012 was going to be a year of doing normal things, of being a normal family. Not that there's anything particularly 'normal' about going to watch the Olympics, but how wonderful would it be to be looking forward to this incredible, once in a lifetime event; to travel up to London together to see some of the competition, and enjoy the amazing atmosphere?

Oh come on. What on earth was I thinking? When was 2012 ever going to turn out like that?

But that's ok. Well, it's not actually ok, but it'll have to be ok because that's how it is. What else can it be? What else is there to do apart from live the life you've got, try to make the most of it, and hope you somehow make it through? You may read my words on here and think we have it tough, but others have it far tougher. We no longer have the life we once had, we'll never again have the life we once had, but we can choose to get on, as best we are able, with the life we've got now rather than dwell upon that which is lost forever.

If you've followed my updates you'll know a lot of what we've been through with Adam. You'll know much of what Adam has had to go through whilst we have stood by and watched; though hardly as innocent bystanders having made the decisions, signed the consent forms, brought a happy child time and again into an environment from which he will inevitably return broken and in distress.

But what you may not know is the impact on Jake and Jessica. I seldom mention either of them on here, this has been about Adam's journey. But we've been doing this for three years now. Three years during which Adam has had to come first. Three years where treatment, scans, clinic visits, home recovery, hospital stays, transfusions, infections, mood swings, sickness, weeks away in London, six months back-and-forth to Germany, and now treatment in America, has been placed above school, clubs, parties, sports days, assemblies, homework, football, cricket, dance, holidays, days out, birthdays, Chrismases, family time … the list goes on. Add to that the stress and burden that Alison and I carry around with us each and every day and that's the environment Jake and Jessica have been living in for the last three years; a very different environment than before. Out of shear necessity our other children have been de-prioritised and re-prioritised on a repeating loop. We try our hardest to make sure they don't miss out too much, that we're there for them whenever possible, but the hard truth is they never come first if Adam is somewhere in the equation. They kind of understand, but at the same time they don't understand at all. They are caring, considerate, mature, compassionate, protective, loving, jealous, childish, confused, resentful, scared, angry, fed-up. They're just children growing up, their emotions are spontaneous and transient. When Adam was diagnosed, Jake was 10 and Jessica was 7; they're now 13 and 10. Jessica was just finishing infants school, next month she'll be starting her final year of junior school. The two of them have lived some of their most important developing years in the shadow of the beast.

When all's done, if Jake & Jessica grow up to be decent, well-adjusted and happy it will give me greater pride and satisfaction than all the qualifications they could ever attain, all the money they could ever earn, all the successes they could ever achieve. And that pretty much sums up how my life has changed in the space of 36 months. I no longer think as I once thought, as I had been seemingly almost programmed to think. I don't resent for one second this change in outlook, my only regret is that it took something so devastating to bring it about. I had always taken our children's health for granted before Adam was diagnosed. Sure when Jake was a baby we bought one of the stupid cot alarms that wakes you up half a dozen times a night because your baby has apparently stopped breathing, but that was because we were frightened first time parents who hadn't got much of a clue what they were doing. And when Adam was younger he had a couple of seizures which were incredibly scary, but as time went by those too stopped being a worry. Only now do I truly know the importance of that oft used phrase 'health and happiness'. That's all I ever want for my children now. Truly.

Returning back to the present, not only did I apply for Olympic tickets, I actually got some. Women's Volleyball Gold Medal match and, believe it or not, the evening Athletics session on Sunday 5th August featuring the men's 100 metres final. With everything that has been going on with Adam, particularly since April this year I don't exactly 'look forward' to anything. Things, no matter what they are, just no longer register in that same way. Don't get me wrong I was still glad we had the tickets, that Jake & Jess would be able to look back on this time in years to come and be able to say 'I was there'. Because of the restrictions on the ballot we only had 3 tickets to each event, so there was always a question of who was going to accompany them. And then we formulated this plan to take Adam to Grand Rapids, and things sort of fell into place.

On Sunday the 5th, Alison took Jake & Jessica up to London for a late lunch at Southbank and then on to the Olympic Park. They soaked up the atmosphere and marvelled at the spectacle. They clapped with the high jumpers and triple jumpers, screamed at Christine Ohuruogu as she tried to chase down the American on the final straight in the women's 400m, and witnessed Bolt proving all the doubters wrong as he stormed to victory in the men's 100m. They got home around half-past midnight exhausted but still buzzing from excitement.

As the kids slept Alison & I packed for the impending trip to the U.S., and shortly after 7am on Monday morning the taxi arrived to take her and Adam to Heathrow. That's how we roll in this house. Olympic athletics by night, flight to America for cancer treatment the following morning. It may be a rather extreme example, but nonetheless is an insight into this crazy life we lead.


  1. Your post on how things have had to be different for Jake & Jessica has reminded me to tell you about this charity (if you haven't heard of them already): Over The Wall run activity camps for children with serious illnesses, and separate camps for siblings. I know it's a while away, I think the next sibling camp is in the Easter holidays.
    The sibling camp is for children just like Jake & Jessica, perhaps they would enjoy it, and like the chance to meet other kids who've faced the same difficulties and de-prioritising as them.

    Also maybe when Adam's time is a bit less occupied by treatment, he could go to the serious illness camp. I can't remember if the youngest campers have to be 8 or 9 years old - I mostly volunteer with the teenagers!

    Hope all goes well in America and glad all enjoyed the Olympics.

  2. Crazy indeed, but you are both fantastic parents, and yes I know its necessary and you just get on with it but I have been reading this blog for a while and what shines through - besides that its tough and that you have to deal with it - is that you do your best, always looking, trying, fighting. All your children have great role models and despite living a different life now, they have had normality and can't doubt the love, with or without the mega special day of the olympics. I'm really pleased you got tickets tho, well done you, on all fronts.