A walk in the woods

Yesterday we went for a walk in the woods. Just Pudding and me.

Ten minutes after we arrived we were still by the gates with me holding them shut to keep him safe. He was waving at cars going past, climbing on the bars and trying to pick nettles. I could feel that familiar impatience, the can-we-just-get-going-now-please-I’ve-got-other-things-to-do part of me that takes over far too often. And then, something happened.

I remembered the reason I was there. In the house, Pudding had said ‘di’ (meaning outside) and then ‘car’, pointing to where we keep the keys. He then got his boots and made a really good effort at putting them on, so I had agreed.

We weren’t at the woods because I thought it was something we should be doing. It was because he’d asked to go somewhere (not quite sure where – his language skills aren’t that good yet!). At that moment I realised, with guilt, that too often I want him to fit into my world: I get frustrated by his constant demands for food or tv; I get bored with the mundane tasks; and overwhelmed by the many appointments and arrangements that need to be coordinated. Sometimes I need to let that go, and embrace Pudding pace.

cropped-Danny3.jpgSo, we said hello to other walkers. We picked up sticks and hit trees with them. We threw leaves in the pond. We did silly walks and ran into imaginary walls. We laughed. We walked a really short distance.

We still got to the inevitable point where he fell over and wanted to be carried for a bit. But the moments that we had already shared made it easier to stop Impatient Mummy taking over.

Pudding pace will be deployed more often. Just remind me of that every so often please. I’m far from perfect and will forget otherwise….

Who’s who

The other day when on the way to yet another appointment, I got to thinking about all the individuals we’ve come into contact with since the start of this. How many people have we met? More than 10? More than 20? So I started making a list…

  • Speech and Language – someone who did the initial assessment, a community SLT and, just this week we’ve started appointments with someone who has more specialism around long-term language issues.
  • Portage – our regular weekly visitor. Also her boss, who is an educational psychologist.
  • Paediatric consultant locally, who did the first investigations. Assessment team in the hospital who took the blood/urine samples.
  • IMG_6484The team from Manchester Willink Biochemical Genetics Unit – Consultant, specialist nurse, ERT nurses.
  • Audiology (for hearing tests), Ear Nose and Throat consultants, and Physiotherapy – all both locally and in Manchester.
  • All the people involved in his operation – the surgeon who did his portacath, anaesthetists, etc.
  • The nurses in the High Dependency Unit who looked after us following the op.
  • Cardiology clinic for ECG and ultrasound on the heart.
  • X-ray department to check for skeletal abnormalities.
  • Paediatric Psychosocial team to assess his development and the impact on our family.
  • Children’s Social Services – responsible for co-ordinating respite care.
  • Healthcare at Home – just this week we’ve met one of the nurses who will be coming here every week to administer Pudding’s ERT.

Not counting others who I have spoken to on the phone but not yet met.

So by my reckoning that comes out at 36 people in the last 10 months – most of whom have been utterly charmed by my dear boy’s cheeky grin and funny ways.

I have been so grateful for the care and support we have been offered by the NHS and other organisations. Sure, I know there have been occasional hiccups and frustrations with the ‘system’, but almost everyone we have come into contact with has done their best for us; whether that is in little ways like asking how we’re doing, or by staying far longer than their contracted hours when I needed help. Bless every one of them, and long live the NHS!

New friends

A while ago, the MPS Society put me in touch with another Hunters mum and we’ve talked on the phone a couple of times. Today, we met her and her lovely son for the first time. It is difficult to describe what this meant to us.

IMG_6466He is a young man now, spending time at college and learning to be independent (travelling there on the train by himself), keeping in touch with his friends and enjoying hobbies such as watching sport. To see him and believe that there are still possibilities for Pudding, is wonderful and uplifting and fills me with hope.

When I first starting reading about MPS, of course I focused on the worst possible outcomes, looked at the statistics, started calculating the odds. And it’s true, the numbers aren’t great. But today, in front of me, I saw a real-live example of life after diagnosis. And I loved it.

Looking up

Time passes. The worst passes. Reading back some of these earlier entries, I am taken by surprise at the raw emotion – a sign that things are so much better now. Yes, I had an attack of the wobbles last week, and I can’t imagine ever truly accepting with equanimity what we are facing, but I have come to a calmer place. We are still waiting for the results of the DNA test which might tell us what prognosis to expect. But they may never be able to find that rogue gene. Until that time this is becoming our new normal.

This week we went to Manchester on Monday instead, as we had an appointment for his ECG. I had thought previously that having a portacath would make things less stressful but Pudding has other ideas about that. He has never liked being dressed/undressed, nappy changes or generally being messed with. Accessing the port to stick the gripper needle in or take it out, therefore requires three of us to hold him down. I feel so sorry that we have to do this to him. He doesn’t understand why he’s there, or what a difference these infusions will make to his life. All he wants is to get up off that bed and go play. I’d love to let him.

As they’d changed the pre-meds this week and didn’t give him Piriton, he also wasn’t as drowsy, so didn’t have his nap on the busy ward. Uh-oh! Didn’t bode well for ECG! Too right… Jane mananged to distract him with pictures on her phone for that bit, but we had to pin him down for the ultrasound. Good news though; although the heart muscle was thickened, this hasn’t yet affected function.

Getting the Manchester trip over with early in the week has meant that it now feels like we’re having a holiday from it. Had a lovely day on Wednesday catching up with some good friends. And yesterday, I was able to drop Pudding at preschool to be looked after by the lovely ladies there. Walking home in the sunshine with no buggy to push, I felt lighter than air. I love my sweet, simple boy so much, but a few precious hours to do writing, or tidy the house makes all the difference.

And one really good piece of news from this week – as of November we should be able to have the ERT done at home. Hoorah!

Wobbly week

Whenever I think I’ve got this situation sorted and am dealing with it well, the sucker punch comes. I was so looking forward to this week – kids back at school, meaning the holy grail of child-free time again, and a nice straightforward ERT with no other appointments booked in. So of course it all went tits up.

Tuesday morning it was just me and Pudding in the house. I think he really missed having the others around and was incredibly grumpy. I gave up at 10.30 and put the TV on. His mood does make such a difference – on his happier days he is a little joy and we can get him over the little humps of demanding food, etc with a bit of distraction. We enjoy being silly or him climbing on me, can try a jigsaw, look at a book and so on. Still hard work, with the need for constant attention, but do-able. On the grumpy days, it is an uphill battle. There are only so many times that I can put on my enthusiastic face and say ‘Hey, sweetie! Look a bird!’

In the afternoon we had our assessment/information visit from the lady who sorts out respite. It was probably a good time for her to come, as I ended up crying and Pudding demonstrated plenty of bad behaviour – hitting me, crying and demanding food endlessly. She certainly got a clear picture of what life is like with him, so much better than his usual sociable side in company.

Wednesday, the ERT went pretty much to plan. We were finished at 12.25 so free to leave just before 1pm. Hoorah! Then 5 minutes after pulling out the carpark, while we were on a single lane, one-way diversion somewhere in Manchester, Pudding opens his eyes and throws up everywhere. After inching past a traffic light, I managed to pull up on some double yellows, and clean him up. Then had to make the inevitable phone call to let them know, and ask if we should come back. Of course when we made it back (I HATE Manchester roads) he proceeded to push a trolley around the ward, laughing and chatting up all the nurses. Nowt wrong with him! They’ll up the pre-meds next week though, just to be safe. The upshot was that we didn’t actually leave until 3pm.

That night, I got to bed, and the whole horrible world of Hunters kept revolving round my head. A toddler being sick is such a small thing in the ‘normal’ world. Yet with us now it has so many more implications. A few hours longer in Manchester that day, but probably more scrutiny in the future – the latest waiting game – will he end up with infusion reactions or not.

I haven’t actually cried much lately but it all welled up and I was soon sobbing loud enough for Hubby to hear me from downstairs. He did his best and was asking what he could do to make things better. The only obvious answer to that one is to stop Pudding having Hunters. Big ask, there!

The next day actually went much better, despite not being able to send him to preschool – he was in such a happy mood, singing and doing his little ‘Night Garden’ dance. And sunshine, sunshine was a big help.

So got through the wobbles again. And I know it will just be one of many. And of course, there are always the lighter moments. The moment when I switch the washing machine on for a maintenance wash to find that there are two spoons clunking around in it. The moment when Pudding wears the freshly washed car seat cover as a hat, peering out through the holes with his cheeky smile. The moments when he grabs Twiglet for a cuddle and they both end up on the floor in giggles. Those precious moments when all the worries and angst disappear and we enjoy the present.