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Red Bull, Nurofen and Cuddles

So the title of my blog pretty much sums up my weekend! This week I hurt my back lifting some of Ethan's equipment into my car. We have been borrowing a walking frame to check that it's the right thing for Ethan. I decided to take it into preschool for Ethan to try as they have lots of indoor and outdoor space for him to move around in. I obviously strained my back lifting this heavy piece of kit into my car and have paid the price for the rest of the week! Hurting my back has really highlighted the reality of Ethan's condition and how much help he really needs. Your probably thinking well you do it every day so why now?? Since hurting my back I've had to be careful as any lifting of Ethan has hurt. I've noticed just how much Ethan needs me to do everything for him. He is totally dependent on me for EVERYTHING. While his head control has come on and we've pretty much said he's got head control now which is a massive achievement he still is unable to sit up or stand alone. He lacks control in his arms and so is unable to play with toys himself. He can't help me to move him as he doesn't have the strength or understanding to do it. While we now have hoists at home they have highlighted just how much more space we need in our flat! As Ethan gets bigger every day and by bigger I mean taller, (I swear he shoots up every day!!), I have noticed how much harder it is to manoeuvre him. The hoists are amazing don't get me wrong but we've had a few issues with the whole starting to use them process! The first problem I encountered was once hoisted Ethan should be put into his chair and then moved around to the next room. While this sounds easy, in reality this wasn't the case. I have carpets in the lounge and bedrooms and Lino in the hall. The door rods to connect these carpets are to high for Ethan's chair to be moved across so I was straining my back more moving room to room than I was just carrying Ethan. This issue has now be resolved in the short time by removing the door rods with the view to try flat door rods in the future. The second issue I came across was hoisting in our bathroom. To say our bathroom is tiny is not wrong! Having to hoist out the bath and into Ethan's chair is logistically a nightmare and very hard work! There is just not enough room!! How we can resolve this is uncertain at the moment so the battle goes on! So while I've had my bad back I have been trying to use the hoists as much as I can but it's not easy! Ethan is only 3 and so isn't huge yet. While I need to save my back for when he gets bigger and I really can't lift him I'm also on the other hand wanting to still lift him sometimes. Not only is it quicker and easier but it is nice to be able to pick Ethan up and have a quick cuddle before he goes into his next position. I know I should be good but sometimes it's easier not to be! Due to my bad back and both myself and Ethan having bad colds we cancelled our plans for the weekend. We're currently fundraising for a walking frame and specialised bed for Ethan and so had to miss a fundraiser as I'd been overdoing it getting ready for it, ironic right! As I mentioned before we borrowed a walker for a few weeks. The frame is a Leckey kidwalk and I can honestly say it's amazing! Ethan loves it and as a parent I cannot tell you how amazing it is to see your child's face light up through just being able to stand and move on his own! When you dream of having children you take a lot for granted. People always say I just want a healthy child and that's all. When your pregnant you never think what if my child can't walk or move, you just dream of their future and don't think about how they could be disabled and how they may not become a well known surgeon or a nurse or a pilot. I was no different but I knew that if I had a child with special needs that I would love them no matter what and it's true. My ultimate dream is for Ethan to be able to be independent and not have to rely on me for everything. That's all. However he does this will be amazing. I can't allow myself to actually dream this dream though as it causes heartache when I know this might not happen. We live every day as it comes. Having a walking frame will help give Ethan a small amount of independence. He is able to move the frame himself, it may be backwards at the moments, but that's great! He is so proud of himself and he loves how he can make the walker bounce up and down! The other thing we're raising money for is a specialised bed. Now we can get some funding for this I'm not sure how much but we still need to raise a large amount for it. A specialised bed will help me to be able to change Ethan . It will save my back no end from bending over to change him or settling him at night. The bed will be able to move up and down and tilt at the head . Ethan suffers from reflux and so has to be up quite a lot to help this. At the moment he has a few pillows under him but if we could raise his head this would be much more comfortable for him. Fundraising is important to me. I have struggled with health professionals and getting equipment. It's hard as a parent to have to fight for every bit of equipment that could immensely help you and your child. I'm fed up of waiting months on end for equipment which is so badly needed to help Ethan cope with every day life. I'm fed up with battling to prove why he needs things. This is why I'm taking matters into my own hands. It's quicker and believe me much less stressful! Fundraising is hard work and I know I over do it trying to organise things but it's much better than the stress of waiting! We are so greatful to all our supporters, friends and family for helping us. Without you all it would be impossible. While we are putting in our own money we don't have it all and so cannot thank you all enough for everything you to help us. So to end on a high note. Whilst hurting my back has been hard it's also given me the time to take a step back and appreciate some one on one time with Ethan. We spend lots of time together but at the weekend were not often on our own at home. I love spending time with Ethan more than anything. I've noticed so many little changes in him. He is so happy and very cheeky. He passed wind and laughed! Now he does this a lot but this time he thought it was hilarious!! For a child with a neurological disorder this amazes me! Against everything he goes through he has his own character. He truly is amazing. He now gets excited when we get to our front door knowing we're home, he has to listen to one direction on repeat to cheer him up, he chooses his own snack, he look at me from the side of his eyes and smiles now, he watches my mouth when I talk to him and he smiles when I say good boy Ethan. He is on an incredibly hard journey and dispite it all he's happy. That is truly all I need to make my day. If he can smile dispite having had a seizure or no sleep well then who are we to complain. He truly is my little hero.


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