Here is shot from the paint party at the start of the Ty Hafan Rainbow Run the girls and I took part in last weekend. Expect plenty of colourful images when I update you all about it soon!
Remember it’s not too late to donate!
With five children we have had our fair share of the usual children’s diseases and the odd longer term health issues, but I really can’t imagine how hard it must be to raise a child with a life limiting illness. These parents really give their entire energy and being to care for their children, making sure they live full, happy lives knowing that they are unlikely to reach adulthood.
Tŷ Hafan is the only children’s hospice in Wales and are a source of comfort, care and support for these families. Not only are they a safe haven during the darkest hours, providing expert comfort and assistance during the end, and beyond. Tŷ Hafan are also there to offer advice, support and assistance to ensure each child lives their life to the fullest. Providing care at home, school, in the hospital and in the hospice. They are often the only people able to care for children with serious medical needs to allow parents and siblings a chance to relax and recharge their batteries.
It costs over £3.7 million each year for Tŷ Hafan to provide their specialist one-to-one care and outreach services to life-limited children, young people and their families but because they are a charity and not part of the health service they get a very small amount of statutory funding a year. This means that Tŷ Hafan depend on donations to carry on their fantastic and much needed work. The Tŷ Hafan Rainbow Run is just one way people can raise the funds.
The Rainbow Run is more than just your average 5k. It is a walk or run where the participants are showered with powder paints along the route. It’s guaranteed to be a fun and exciting event which is why, when I was offered the chance to take part I jumped at it!
So, on May the 7th not only will I be donning my white t-shirt and sunglasses, but I’ll also have both of my fifteen year old daughters by my side in Barry Island to help me along the way. We would be really grateful if you could sponsor us, even just a few pounds, all money raised will be going to support extraordinary families and ensuring their children make the most of their lives.
Thank you x
One of the hardest parts of looking after children is coping alone while you are unwell. Throw a couple of sick kids, or really energetic healthy ones, into the mix and life can really start to get on top of you!
But there are some simple things you can do to make life a little easier to bear and also let you try and recuperate.
1. To begin with, don’t worry about the housework. Seriously, the house isn’t going to fall down around your ears if you don’t hoover the floor for 24 hours, neither is anyone going to look down on you if your house isn’t spick and span. You are sick, they are not. If they were any sort of decent person, they would be offering you any help they can, not judge you.
2. Don’t worry about what the kids are eating. Obviously if you all have tummy bugs, then food is going to be the furthest thing from your mind, if you eat much at all it is likely to be in the form of dry snack foods, like crackers, or toast. But if you have another type of illness you don’t need to stress. Even if you all live on beans on toast, take outs, tinned fruit or frozen pizza for a few days whatever is easiest for you all is just fine. You can go back to the organic, cooked from scratch, non processed foods when you are better (only if that’s your thing of course).
3. Drink plenty. I know this one isn’t rocket science and everyone says it, but that’s because it’s true! It doesn’t even have to be water. The best way to get rid of bugs is to keep hydrated, it can help flush them through your system much quicker than if you drink very little. Don’t worry about what you or your children are drinking, whether it be pop, fruit juice, tea or water. As long as it is getting fluids into your system anything you fancy is just fine.
4. Rest up. whether it be snuggling on the sofa watching movies together or huddling under the covers in bed reading, watching TV, snoozing etc. etc. Anything that can occupy your little one long enough for you to rest is good. We all like to enrich our children’s day with activities but sometimes sitting them in front of a screen while you close your eyes for a few moments is beneficial to everyone.***
5. Take any offers of childcare, or even ask someone if you are really poorly. Family and friends are bound to be happy to occupy small children for a few hours, even if they come to your house so you can go to bed for an hour or two.
5.5. Enlist your teenagers (or older children) to help. Now obviously this one requires a bit of forward planning, and bringing random teenagers into your home is frowned upon, but if you do have one of the ‘hormonal ones’ sharing your home do make use of them. Getting them to fetch and carry, make a simple meal or a cuppa and keep the little ones out from under your feet for a couple of days isn’t going to kill them. It may be wise forewarn them of what’s expected of them when you first feel like you’re coming down with something just so you can deal with the inevitable moans and complaints while your still mentally well!
***If your children are healthy and active, make sure the area you are in is safe and you have assessed any risks, just in case you nod off. You don’t want to open your eyes to find them having emptied the entire contents of the cupboard across the floor and are now painting the dog with nail varnish!***
How do you make your life easier while you are sick? Do you have any other tricks or tips to share?
At the end of last year we were asked ifwe would like to review the Toddlebike2 before it’s launch in November. I have to be honest in that I had never heard of the Toddlebike before but when I looked into it I found that the original version had some fantastic reviews so I jumped at the chance to be able to try the new and updated one out for ourselves!
The Toddlebike2 is a ‘pre-balance’ bike. It has no pedals, just like a balance bike, but the four wheels are close enough that it is able to stand up on its own. It is designed to aid children as young as 18 months, who are independent walkers, to learn the basics of cycling. It comes in three bright and cheery colours; racing red (which is what we have), midnight blue and pinky pink.
O was so used to his tricycle style ride on, that he could lean on any which way possible and still remain steady on it’s wheels, that he avoided using the toddlebike2 for a good month or so, because he would topple over from trying to do the same tricks. But he eventually got more and more used to it and is now a pro at racing up and down the living room, or the park, on it.
When I first pulled the toddlebike2 out of the box I have to be honest that I was a bit dubious about it. It is extremely lightweight and made entirely of plastic and I did wonder how well it would actually stand up to a two year old. After all toddlers are not renowned for being gentle with anything! But I am happy to say that it has been banged around, laid down and used as a stool to reach things he shouldn’t, treated just as badly as a little boy treats all their toys and it has stood up to everything he has (literally as well as figuratively) thrown at it!
He now chooses the Toddlebike2 first over his three wheeled ride on as he can go much faster and it goes much further with each push of his feet. This is actually great for me because it is so lightweight it is really easy to carry. We live at the top of a steep hill so I have to carry it if we want to go anywhere off our street! The day I took these photos it started hail stoning really heavily, you can actually see it in the above picture, so I had to carry both the bike and O up the hill at one point because he slipped and got upset, I would have really struggled with anything heavier than than the toddlebike2!
Here is a little video of him going up our street. You can see how easily he manages even with it being on a bit of an incline.
If you are looking for a ride-on for your toddler I would really suggest looking into the toddlebike2, it is competitively priced (only £24.99 on Amazon) and although it may take them a little while to get used to it really is worth it and they’ll be whizzing around like pros in no time at all!
What ride-ons does your toddler enjoy?
Last year I shared my Welsh cakes recipe and I’ve had many compliments about them. If you have never heard of these tiny pieces of heaven, I strongly urge you to take a peek at the post to find out more about them and their history. Of course, I now have to alter most of my favourite recipes to make them safe for my gluten free, dairy free and soya free toddler. So after many alterations and plenty of taste testing, just in time for Saint David’s Day, here is my gluten, dairy and soya free Welsh Cakes recipe.
Feel free to replace the Trex and dairy free spread with 100g of lard, you can also use all Trex.
1. In a large mixing bowl add the flour, psyllium husk powder, spices and baking powder. Stir together.
2. Roughly chop the dairy free spread and shortening into cubes, add to the mix and rub together with the tips of your fingers and thumbs, you are unlikely to get a breadcrumb texture so just do this until everything is evenly combined.
3. Add the raisins and sugar then stir together.
4. Add the eggs and incorporate everything together using your hands until you get a thick paste. Remember that it will never resemble normal dough with gluten. You want it so it is still quite soft but so you can form it into a ball with your hands.
5. This isn’t a necessary step but you will find it easier if you put the dough into a sandwich bag or wrap in cling film and put in the fridge to let the fats harden for at least 30 minutes.
***10 minutes before you are ready to start turn your heat on medium under your bakestone. Turn to low before the next step***
7. Place cling film down on your work top and place a handful sized piece of the dough on top. Roll the dough until it is about 5mm thick. Use more cling film on top if the dough is sticking to your rolling pin. Cut them out using any size cookie cutter you want.
8. gently remove the welsh cakes from the cling film by putting your hand underneath and place them on your bake stone.
9. I use an icing spatula to flip mine but use what ever you have at hand a fish slice, a fork even, just be gentle! You want to flip them when they are golden, not quite at the brown stage. I can’t give you precise timings as it all depends on your heat.
10. When cooked wrap your welsh cakes in a tea towel on a cooling rack so the steam moves around but doesn’t make the ones on the bottom soggy.
11. When cool dip them into a bowl of caster sugar, you can just sprinkle liberally if you prefer.
Tips and tricks
It might take a bit of playing to get the right temperature under your bake stone. Don’t be disheartened if your first batch is dark on the outside and practically raw on the inside. I have mine set on the lowest heat but all hobs are different.
Don’t try to roll out too many at the same time, its best to just use a small amount of dough that will cut out 5 max to keep it manageable.
Use as much or as little spice as you like, I often add none at all.
Use dairy free chocolate chips instead of the fruit, or just leave plain.
Welsh cakes aren’t usually served with an accompaniment but taste divine (and extra naughty) spread with butter. You can also split them in half and make a jam sandwich with them.
I do hope you try this gluten and dairy free Welsh cake recipe, they really are something everyone should try at least once. Please let me know if there is something you’d like me to explain more below.
Mwynhewch! (That means enjoy in Welsh!)
This is LM:
LM is your typical pre-teen. She is silly, stroppy, giggly, shouty, loving, stubborn and very silly (seriously that needs to be there twice). First impressions most people would make is that she is small for her age, very slight in build, active, happy and healthy. And yes she is all of those things, but those first impressions are where the problem lies.
You see LM has an invisible illness and unless you have watched her joints popping in and out and bending in ways they really shouldn’t, or have lived through the endless nights filled with tears you’d never really know she was different to any other child her age.
LM has Ehlers Danlos Syndrome. There are many types of this syndrome, but she has the Hypermobility Type (formerly known as type 3). It is sometimes referred to as Hypermobility Syndrome, not to be confused with hypermobility or being “double jointed”.
LM’s invisible illness means that she is at risk of any and all of her joints dislocating or subluxing (moving out of place but not fully dislocated). Her wrist bones move apart by themselves and need clicking back together. She struggles to stand for long periods and gets dizzy every time she stands up. This is just a quick summary I will do another post to explain in more detail about growing up with Ehlers Danlos Syndrome soon.
It is great that LM looks so “normal” on the outside. She can fit in without having to explain herself if she doesn’t want to. When she is feeling good, being able to pretend there is nothing wrong is a wonderful thing for an almost teenage girl. But sometimes I wonder if having an obvious illness would make life easier for the rest of the world to understand what she goes through.
We have had many looks from strangers over the years when LM was carried on her dad’s back, because she couldn’t walk even one more step, even though her little brother was upset he couldn’t get a piggy back. I’ve had to defend the fact that for two years we needed to travel to Great Ormond Street Hospital because “if she was that bad she’d have a blue badge”. I have sat dumbfounded when a physiotherapist said that the only thing wrong with her was that she was too skinny and she should eat more biscuits and cakes to fatten up a bit. Seriously, this was AFTER her diagnosis!
In LM’s eyes, the worse thing ever to happen was at school and involved her footwear. She wears boots provided by the hospital but she’s only provided one pair at a time and the waiting time between appointments is ridiculous. She is often left without them for anything from a few weeks to a few months when she outgrows them. Finding supportive and comfortable footwear for those in between times is a nightmare and are never 100% suitable meaning she is at her worst physically and mentally. She’s had repeated comments about her footwear (even while actually wearing her boots), the worst coming from the headmaster himself who, in the middle of the busy dining hall, told her that he knew she was waiting for an appointment, but her trainers were unacceptable and we needed to go and buy more appropriate black school shoes.
She was absolutely devastated.
Okay, yes her trainers were white and pink and she had been wearing them for about two months but to pull her up on it in front of pretty much the whole school was totally inappropriate and unacceptable. I knew I couldn’t hold it together if I spoke to him in person so I wrote an extremely long winded and aggrieved letter explaining how upset she was, how much she would love with all her heart to wear normal school shoes. I even pointed out to him that if she had been in a wheel chair he would never have even considered approaching her about it.
I did get a phone call of apology, but not from the head teacher, and nothing has ever been said to LM. Although she has noticed that not a single comment has been made about her uniform since! Hopefully there won’t be any major issues through the rest of her schooling, even if people don’t understand the actual issues, just being understanding of her feelings will go a long way.
As for the future? My hope is that someday society will understand people like LM a little better and know that their pain and illnesses are not just in their heads.
I think we are a long way off from total acceptance of those with invisible illnesses. But maybe, just maybe, by the time she leaves school the world will be a more empathetic place and accept without question, that some days she can conquer the world, yet she won’t be able to lift her arm long enough to brush her hair the next.
Do you have a child with an invisible illness?
O loves going to see the chickens. He happily wanders around the enclosure with his little cup of mixed corn and grains scattering it about while I get on doing the things I need to. He’s even happy to sit and let all the chickens gather round him close, I thought he might freak out a little when the cockerel got right up to him but they just eyed each other up and Stampy got on with pecking about!