Another month gone and sadly it’s not getting easier, Toby is still having around 100 seizures a day lasting from one to ten seconds each which seem to be causing him more distress and pain as he’s crying out, he’s also having fully convulsive seizure where he’s out of it completely and needs oxygen and rescue breaths to keep him going but he’s amazing and keeps smiling through it all although it seems the ‘terrible two’s’ are beginning to emerge with tantrums and shouting if he doesn’t get his own way.
Lots of incredible people have done lots of wonderful things for Toby this month, we want to say massive thank you’s to:
Rob Jordan again, this time for his ‘big gig’ which was a fantastic night and raised loads of money for William Crook’s Brighter Future fund and Toby’s Trust.
- Felicity Oliver, our good friend and neighbour who swam a mile in Lake Windemere and raised over £1k for Toby.
- The Leiths, Brocks and the Jordans for little gifts that are rays of sunshine in dark days.
- Matt for the loveliest bunch of flowers to cheer us up.
- The silent heros who donate to Toby’s Trust every month, you’re so kind and generous and we don’t thank you personally enough.
It feels like we’ve been away a lot this month, we’ve just come back from a Helen House visit, we tried to see friends in Worcestershire last weekend but Toby had a really violent nasty seizure and we felt it would be safer for him at home and in his own bed and earlier in the month we took a short trip to Bournemouth for a break, sadly Toby wasn’t great but our good friend Rachel came to see us for a night and she’s written this lovely piece so you can see Toby’s life through a different perspective.
24 hrs with Dravet
I’m welcomed to the holiday apartment with cuddles, tea and lunch. Toby is having his nap. I can hear him shuffling around his bed on the monitor which is with us on the table. We natter away and after a while, we talk of Toby. I now know he is having many absences but slightly less partial seizures, they have improved from one every 2 minutes, to every 5. He also had a full clonic tonic seizure that morning.
I realise that despite my friends being on ‘holiday’ and welcoming me ever so warmly and contently, they are exhausted. Dravet came on holiday too, even though it wasn’t invited.
Toby loves his toy rocket. It’s plastic, green, yellow and blue. He’s not so bothered by the other toys (even though I’m desperate to play with them). Today, we love the rocket. He sits and spins it around and around repeatedly on the floor and we make rocket noises. Toby loves noises and will look at you to encourage (polite way of putting it) you to repeat. You are rewarded by his gorgeous smile and you happily repeat, challenging yourself to find more adventurous noises which relate to rockets.
Toby is wearing his hat – the helmet. It’s a hard sponge navy blue helmet which you generally see on England rugby players. I sit close to Toby with my arms stretched out ready to catch him if and when a seizure hits. We are happily playing and without warning, Toby’s head falls down and hits the wooden floor of the apartment. I can’t explain how quickly this happened. I grab Toby and he is instantly awake, back with us and spinning the rocket. I look up horrified this happened on ‘my watch’. I instantly understand, it is utterly impossible to always be there and this for a parent must be devastating. The helmet helps but it’s not enough. How can you stay close (and I mean, millimetres) to a 2 year old all the time?
I curl my legs around Toby, thinking that this will create a safe and soft ‘play zone’. This doesn’t work. I hold my arm out by his head ready for when the next seizure hits but Dravet is so quick and silent…….. I manage to get my hand between Toby’s helmet and the floor this time to help soften the bump. “Phew – I caught him. I won’t be asked to move aside”. I talk softly to Toby to welcome him back and he just looks at me with his cheeky eyes and smile and I’m instantly reassured he is okay. HE. IS. AMAZING. After a few minutes of playing with my arms out stretched, I decide that it’s not the best approach. I don’t want to restrict Toby’s play, suffocate him or for him to sense I’m anxious. Therefore I give him ever so slightly more room and we continue to play with the rocket. I decide I won’t blink instead. We play for 15 minutes. Toby has another 4 seizures.
Tim graciously encourages Kim and I to take a walk. We love the sea air. Our hair doesn’t! We walk for maybe a few miles along the quiet beach front and cheer every time the sun peeps through the clouds. Kim is determined to get a holiday tan. We decide we could be anywhere in the world as the beach is empty, golden and vast. We chatter away and stumble across a bar on the sea front. We decide to sit outside, sip cheap (yet expensive) wine and work on our tans, in 18 degrees. It’s relatively a customary pastime for me but it’s an utter luxury for Kim. We savour every minute of our precious outing. And every sip.
We and our big hair arrive back at the apartment in time to put Toby to bed and to a gorgeously prepared meal thanks to Tim. We spend the evening talking and laughing with Toby with us on the monitor. Whilst I drink prosecco and them their water (as they’ve already had their quoter), I’m updated on their other friends who have taken the time to raise money for Toby’s Trust and Helen’s House and we once again find ourselves talking about how amazing people are. This includes the huge hearted residents of Olney who are constantly being little rays of sunshine. I’ve genuinely never heard of such a community. One day, I will move to Olney.
We reflect on our day and wonder how Toby will be tomorrow. We review the counter Tim uses to count Toby’s seizures and as we bid each other goodnight we concluded 100.
Rise and shine and B.A.T.H time
The best thing about staying with the O’Grady’s is your morning alarm clock. You are gently awoken to the sound of educated business professionals doing their best interpretations of avid story tellers or animal noises. These sounds are only disturbed by Toby’s delighted giggles. Toby has the best laugh and you can’t help but smile as you hear them all together.
Toby and I are playing when we are told it’s Toby’s B.A.T.H time. As a blonde dyslexic, it takes me a while to work out what they are spelling out. Apparently Toby gets so excited at the thought of the bath; they have to spell it out to keep him calm. Tim and Kim appear slightly anxious and work together to get the bathroom ‘ready’. Toby and I continue to play, still with the rocket.
The bath and bathroom are ready. The water temperature is checked twice (seizures can be triggered by changing temperatures) and fluffy towels and oxygen tanks are on standby. Toby is called to the bathroom by (pretend) excited parents and he knows exactly why. I’ve never seen him crawl that fast, he cannot wait and off he goes up the corridor to his favourite pastime.
Calm and collected (on what I suspect is the outside only) Tim and Kim take their well-practiced positions by the side of the bath and Toby is lifted into the water. The smile on his face doubles. As soon as his limbs touch the water his automatic reflex is to kick his legs and move his arms. He has a completely nature front crawl swimming style and is literally making waves. I stand there convinced that Toby could be a world class professional swimmer one day. This happy moment is destroyed by the sudden silence and stopping of all movement as Dravet hits, knocking Toby who falls face down into the water motionless. Tim lifts Toby within milliseconds who is now awake and you hear the sound of Toby gasping for breath. Toby’s eyes open, he sees the bath. He smiles and starts swimming again in mid-air. It’s frightening but Toby is utterly undeterred. We continue the bath and by the time we have washed Toby, he has had another 3 seizures.
Calming Bob the Builder
Washed and now also dressed, Toby and I get to curl up on the sofa for a few episodes of Bob the Builder on the iPad whilst Tim and Kim get ready for the day. As Toby settles, he has an absence and I hug him tight. We then watch Bob for half an hour and Toby is completely still and present. It’s a whole 30 minutes of no activity – just fun times watching Bob and the gang on their adventures. The only interruption is the ‘grown ups’ talking too loudly which is preventing Toby from hearing every word. Toby hits the screen to indicate he would like the sound turned up. Toby is as bright as a button and Bob the Builder is medicine.
DRAVET does Terrible Two’s
Toby has two types of screams;
Scream 1: “I’m in pain or uncomfortable”. Sadly I’ve heard this more and more this month with Dravet escalating. It is ear splitting, makes me anxious and feel totally helpless.
Scream 2: “I want that now!” Classic terrible two tantrum – you all know what that sounds like!
Toby is screaming Scream 1, so we decide to venture out for a walk to help distract him. He’s completely maxed out on drugs, including pain killers so distraction is our only option.
As we leave the apartment, we instantly start the game “What can we see?” Toby screaming subsides. Kim and Tim never miss a chance to help Toby learn. We name every object we pass, teaching Toby and occasionally encouraging him to repeat. As we walk past a dog, Toby repeats ‘dog’. Okay, so the pronunciation might not have been perfect but I am filled with triumphant pride nonetheless.
Now we’ve established Toby’s love for water and probable swimming skill, the cruelness of Dravet is felt again as we reach the beach promenade. Toby spots the sea which we conclude must look like a giant bath tub to him. A desirable huge pool of water, but alas, it’s at least 50 metres away and there’s a huge desert in-between us and that lush looking water. Scream 2 begins.
What with Toby being so poorly recently, the impact of all the seizures has reduced his muscle tone resulting in him not being able to walk (even guided) as much as he normally does.
Toby’s eyes are transfixed on the water so we let him out of his pram and with Kim’s support, Toby starts to walk the 50 metres towards the sea.
As I watch Toby’s footsteps, I realise how he constantly has to relearn how to walk after every serious clonic tonic seizure and despite the support from the sporadic physio appointments, it is Kim and Tim who coach Toby and build him up again.
Toby reaches the water’s edge and we watch the waves crash onto the sand. Scream 2 increases. He obviously can’t go in or even paddle. Poor Toby. But the gorgeous boy had walked the furthest he has ever done. Another glorious achievement.
I drive away from the apartment filled with many emotions. One of which is warm admiration for Kim and Tim’s unequivocal devotion to Toby and their awe-inspiring team work. They are an incredible family unit. The type I aspire to be and have. Other than being furious that he wasn’t allowed in the sea, Toby is happy, very happy. That is completely evident and this is purely down to the loving and safe environment Kim and Tim have created. Toby is not anxious or scared. He is simply loved.
As I join the M3 motorway, I wonder how we can inject fun, energy and more normality into our friends’ lives to help give them the vigour they must have to dig so deep to constantly find.