Writing this blog has been one of the hardest ones to word. Usually the words flow so easily but this one has been hard to get my point across without sounding like I'm moaning or trying to look for sympathy. I'm really not. My life is no where near as hard as some and I am eternally greatful for the life I have and that my little boy is hear to share every moment with me.
Sometimes it's frustrating when people are going about their daily lives and everything is a struggle to them. Most of these people have "normal" things to deal with. I'm not saying that those things are unimportant or that our day is the hardest out of everyone's. I know it's not and in very greatful for how good our life is compared to others. When I hear those moaning that their child is mis behaving or their struggling to save money to extend a house they already own I find it hard sometimes etc. Our life is hectic, full of hospital appointments, seizures, physio schedules, strict routines, lifting, moving, feeding, changing, work, early mornings and late nights all on very little sleep. Ethan needs full support 24 hours a day as he's unable to attend to any of his own needs himself. People don't understand our life and that's ok, frustrating sometimes, but ok. Unless your in someone else's shoes then you won't. Everyone handles things differently and we all different strengths and coping methods. We have many people supporting us through our journey and although we've lost some along the way we know who is by our side no matter what. Our journey is full on and that takes all of my energy to cope with and this leaves little time to be there for everyone else. Only very few people understand that sometimes we just need to chill at home and have a day to ourselves without the stresses of going out. Those that understand and make the effort with us to be there no matter what are the ones who we will invest our time in. It's and isolating world being a parent of a child with severe complex needs and as Ethan gets older and we are less able to go out and enjoy things those that have stuck by us Through it all will be the ones we will spend more time with.
I love our life I really do but sometimes I wish it was easier and straightforward. Everything is a battle to access and we are constantly fighting for just the bare necessities. Just because Ethan's needs are complex does that mean he doesn't have the same right as everyone else to live a normal life and be able to access the world like everyone else? Why should life be a constant stress to access on top of an already complex life?
Being a single parent has been a huge experience for me. There have been times where I think I can't cope anymore or times where I've struggled but seeing my little mans smiling face makes me know I'm doing ok. Being a parent is hard, being a single parent is hard and being a parent with a child with complex needs is hard, put them all together and you get a whole lot of hard and complicated. I am fortunate enough to have found a man, the love of my life, who is willing to cope with all of this. He is there for me and Ethan no matter what and excepts us both just the way we are. He would do anything for either of us and supports us through everything. We're not together all the time though and that's hard. When he's here it's amazing how much easier it is with two people to cope with everything. The stress is halved and it allows us to enjoy fun and laughter more as everything is easier. It's still full on but having someone to help and support is incredible. We're not in a position to live together at the moment because Ethan's complex needs don't allow for that because the world is still not adapted enough for him!!
So Ethan and I are on our own pretty much most of the week. Weekends are great, but full on. Ethan goes to stay with his dad every other weekend and in some respect i'm lucky because I get respite for two nights which others don't get but I pay it at some cost as I'm on my own the rest of the time. The time I have apart from Ethan is hard and I miss him every second of that time apart. However I also use it to its full potential. I enjoy a lie in (no 4.30 starts) an early night (or a late one!) I enjoy having a shower without interruption, being able to eat my food with two hands, being able to pop to the shops without it taking hours to get out the door, washing up whenever I like without waking Ethan, going to the toilet and flushing the chain in the night or whenever (Ethan has incredibly sensitive ears and every sound wakes him), sneezing and coughing, cooking dinner and being able to wash up afterwards, turning the Hoover on first time without 2 practice blasts to stop from scaring Ethan, visit friends and family but most of all special time with my man as this doesn't happen during the week. Time is precious and I make the most of it. When I have Ethan for the weekend I love to do as much as I can with him. As he gets older we are becoming more limited to things we can do and go to so we're making the most of it while we can. Days out are special and visiting family and friends but equally time at home to chill, do physio and more importantly play and explore are just as special. As Ethan gets older more time will be spent at home and I do worry that that means missing out on visiting people and joining in normal days out but I know it can be equally as fun at home for us and people will have to adapt to coming to visit us instead.
I love Ethan to pieces and I wouldn't change our life (apart from making it a bit easier oh and more sleep!!) because that would mean changing Ethan. Yes I would love to take away his pain and troubles but that would mean changing Ethan and if I did that he wouldn't be who he is. God has blessed me with a child full of love much more loving than other children, a child who takes joy in the beauty of the world, who sees the love in people's hearts, who rarely moans but instead enjoys life to his full potential and above all a child who is simply strong courageous and brave. For that I wouldn't change a thing. He's taught me a lot about life and how to appreciate every bit of it. Too love others who aren't the same as us. To appreciate what we've been given and to make what we can with what we've got. A lot of people should learn a few things from my son because he's one of life's wonderful creations.
To all of the special people in our lives thank you for going the extra mile to fit around our crazy life and understanding just how full on it is and that if we had more time we would make more effort. Thank you for always being there to support us no matter what.