Tuesday, 20 October 2015

Fundraising for a Quality of Life!

It's been a while since I have written a blog post but as many of you know I have not been doing nothing.  Behind the scenes, and through Facebook, Denise and I have been working our socks off trying to get our fundraising for Rowan off the ground.  It's been a rocky process, and I really didn't think it would be this difficult, but it is what it is, and I will not give up or be beaten!

So, a question I am often asked is 'what are you fundraising for?'.  Now if you'd been with us at the beginning of the journey you would know that we were fundraising for the down payment for a Wheelchair Adapted Vehicle.  Rowan was meant to be getting a power chair, and therefore we needed an adapted car to transport the power chair.  More recently however, there was some difference of opinion amongst professionals and therefore, as it stands at the moment, Rowan will not be getting a power chair.

I was really hurt and upset at the time, and I had to take a time out.  It took a few days, maybe more for me to get my head straight. I was worried that I had misled everyone who had already donated, that I had let everyone down.  I was ready to give up fundraising and hand back all the prizes we had had donated.  Give everyone back their money for tickets to the disco we had arranged, and call it quits.  If i had done that though, it would also have meant the money we had in our just giving account (nearly £300 at the time) would have gone elsewhere, and I didn't want that to happen either.
The fact still remained however, that Rowan was in pain every single day.  The fact still remained that as his Mum all I ever want to do is take that pain away, and I can't.  A significant part of my day is spent distracting, soothing, making hot water bottles, rubbing, massaging, stretching muscles, strengthening muscles, encouraging pacing, running warm water over various body parts, and crying inside.  It's horrible having a child who is in pain, and knowing there isn't much you can do about it, but you try anyway, just in case THIS time it makes it go away, maybe it's the 876th time you rub his back that's the charm.  Some days are better than others, some days are a lot better than others, but whether it's a good day, or a shockingly awful day, the one thing we, as a family (and Denise), are determined to do, is give Rowan and his siblings the best quality of life we possibly can.   His pain will not rule our lives, and it will not limit his life experiences, nor his quality of life as long as I breathing.

This determination not to be beaten was, ultimately, the thing that made me dry my tears, put my big girl pants back on, and work out what the next steps were (with lots of help from Denise).  So, the underlying purpose of fundraising was to make sure Rowan had the quality of life he deserves, the quality of life he fights every day for.  That has not changed, and will not change.  What has changed however is the aim of fundraising.  We have 2 immediate targets, that will enhance Rowan's quality of life, and a longer goal as well.

The first is to purchase a Nutribullet pro 900.  Some people may know what that is, and some may not.  In Rowan's words it is a 'fancy schmancy whizzer'.  Rowan currently can't eat very much, both in variety and in quantity.  In order for him to taste things it has to be a smooth consistency which will drain out of his gastrostomy (the tube in his tummy) into a drainage bag (I know it doesn't sound pleasant, but it's a part of our lives).  This does cause him some pain, but he says it's pain he can manage and it's worth it. There becomes a point (after 2 years) that you just get bored with the same jelly, yoghurts, custard, ice lollies and soup.  I had a hand blender, but it was inconsistent, and unreliable and basically has now given up (I used it to puree food for Katrina as a baby 12 years ago, so it did it's job!).  The last few times we have visited the hospice, one of the things Rowan has looked forward to is mealtimes, they have one of these fancy schmancy whizzers and it means he can eat ANYTHING after it's been in the Nutribullet, because it's more powerful than other products of a similar nature, it's a fantastic piece of kit!  Rowan is extremely excited about the prospect of eating things he has missed out on, flavours he has missed, curries, cheesy veg, spag bol, lasagne, all those things I cook everyday that smell so yummy.  I have even said I will whizz a McDs burger and see what happens, we can experiment!  These currently cost approximately £130, but will make such a huge difference to Rowan!

Rowan much prefers it in blue though!
The second item is a bit more boring.  As many people who read my blog and have liked Rowan's facebook page will have seen, we like to take every opportunity and run with it, wherever it may take us.  We travel all over!  From Nanny and Grandad's in Sussex, to various hospitals, up to Louise in Tamworth for yummy cakes, to the Natural History Museum, West Midland's Safari Park, Paulton's Park, all over!  And we have many, many more destinations to visit on our list!  Obviously this means lots of travelling time in the car, and up until the last 9 months or so we have been just fine, however, more recently Rowan is experiencing more and more pain in his car seat.  His back hurts, his legs hurt, and he gets pins and needles in his feet.  He can't be in his car seat for more than about 45 minutes before the pain sets in, and even after we have stopped and got him out the car, stretched and done anything we can think of to make him more comfortable, after another 20 minutes he is back to being in pain, crying, complaining, screaming.  We have tried everything from rear facing, to forward facing, crossing his legs, leaning them on the seat in front, a tens machine, nothing really works that well.  Just to get to Great Ormond Street is about a 2 hour drive (on a good day) that's 2 stops each way, and lots of tears (Not just from Rowan usually!)  If we are travelling 'to' a destination, it means before we even get there he is in pain, and sometimes that does impact on the experience although we try hard not to let it, although the journey home is often.....challenging.  I have researched, a lot, and asked a lot of questions, and it would seem the way forwards is a new car seat.

Only, as soon as you add the infamous title of 'special needs' it automatically gives the right to suddenly multiply the price by 10!  Rowan needs a car seat that will support his back, keep him sitting in the best position, prevent him from slipping down and sitting on the bottom of his back, support his feet, and just make sure everything is lined up exactly how it's meant to be.  This then, should mean that his pain is reduced, and he can rest properly in the car, and be comfortable while every part of him that needs supporting is supported in the right way.  There are 2 car seats that I have come across that will give him what he needs, both, I have been told are approximately £2,500+  Is it worth it?  Absolutely.  You just can't put a price on things like this!

You may see Rowan walking around and can't work out why he needs these things, because he 'looks' just fine, but looks can be very deceiving.  Rowan's muscles just aren't as strong as they should be, he has to do exercises every single day, and despite these he still gets completely and utterly exhausted, to the point where he physically can't walk up the stairs and his legs give out from beneath him, he gets pain from doing the simplest of things, that we all take for granted.  Unfortunately Rowan's body just doesn't do what he needs it to do, no matter how much he wants it to, or how hard he works for it.

In order for Rowan to live the life he deserves, the life he fights so hard for, he needs a bit of an extra helping hand.  I would love to be able to afford these things on my own, and not have to ask for help, but it just isn't going to happen.  I know in the current climate everyone is strapped for cash, it's not easy for any of us, but every penny (or cent, or euro etc) gets us that little bit closer to our target.  Every penny someone donates, is making a positive impact on Rowan's quality of life.

Rowan has his own just giving page if anyone would like to make a donation, I just want to point out as there has been some confusion, the money you donate does go directly to Rowan.  Tree of Hope are a charity that helps families like ours to raise money, they hold the money for us, and we apply to them to release the funds, it gives those who donate a reassurance that their donation is going on what we say it is, it also gives us the advantage of a text to donate number, and a charity number as well, but it does go into a fund specifically for Rowan.  Here is the link Rowan's Reality

However, if, like many people you want to get fully involved in the process, Denise and I have worked our socks off organising a Halloween Disco this Sunday (25th October) in Kingsthorpe, Northampton.  There are about 20 tickets left, and the information is below, if you'd like to come, let us know! There is a mobile number, and an email address below, or message us through Rowan's facebook page and we will get you sorted out.  Denise and I have a couple more ideas for fundraising events once we have gotten over this one (and some time to recover) and we are grateful for every single one of you who are behind Rowan, and believe in him like I do, even if you can't donate, even if you can't come to our events, please share his fundraising page, like his facebook page (Rowan's Facebook Page), and see for yourselves the difference you are making.

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