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Just Stop and Think

18 Jun 2015

As nearly 5 years passes since I gave birth to my gorgeous boy I can't help but keep relive our past this week. Sometimes everyday life just gets you down. It all becomes to much emotionally, physically and mentally. My body is tired, my brain is tired and I'm running out of tears. The last couple of months have been hard and full on and as a single parent it's hard to get away from it, to escape to a world where nothing's complicated you just have "normal" worries and stresses. 

I've not talked much about the beginning before or a lot about my harder days. I'm usually so bright and happy and ready to take on the world, but somedays I don't feel like that. Somedays things get too much and it's hard to get back to not overthinking and worrying. 

 

Five years ago I was heavily pregnant. When your pregnant you have all hopes and dreams of what your child will look like, will it be mummy will it be daddy. What colour hair will they have, what will their personality be like, what will they grow up to be, what interests will they have. You've planned things your going to do with them and whether they will be off to university or take on the world in some heroic way. I did all this. Five years later every now and then it comes to my mind that all of those things I had planned for my child won't ever or haven't ever happened. The stark realisation that actually my beautiful new baby will never be able to do normal things forever comes to my mind. 

 

Our first few days with our baby boy were "normal". We were just the same as every other new parent. The day we were discharged from the hospital was one of the most life changing days of my life. The first seizure was one of the most horrific days of my life. The period that came after that I call the dark period. The bit where my tiny little new born baby boy had his body put him through some truly horrific experiences. The most terrifying and upsetting time of my life but little did I know that this was just the start. That first seizure changed everything. That was the start of the long process of the realisation that everything is not ok with my perfect newborn. It wasn't until a couple of years later when we got the final diagnosis that I actually had the massive kick in the stomach that my little baby had a life limiting and life changing genetic disorder. 

 

I will never forget the day I received the diagnosis letter. All my hopes and dreams for a planned future had gone. Before the diagnosis I had all sorts flying round my head. Already Ethan hadn't reached a lot of milestones he hadn't held his head up, he couldn't sit he couldn't roll and he wasn't walking. I knew something was majorly wrong but until the piece of paper confirmed it I hadn't allowed myself to realise just exactly what that meant for Ethan's future. 

I am a very positive person but all of a sudden I knew I needed to protect my little boy from an unknown world. Our new journey had begun and I never knew how hard and life assuring it would become. 

 

I've pretty much got on with everything and taken each day as it comes as this is the best way. I can't change anything, I can't change the past, I can't change the diagnosis and I can't make Ethan better. There's no point worrying about what you can't do but there are still times where you are upset and angry that things aren't the way you planned. This journey is nothing like what I had planned all those five years ago. Most days I don't think about those dreams I once had, the dreams that I never once imagined my child as being disabled or having complex needs. I don't allow myself to think of those plans I had but sometimes it's hard to not think about all the things we've missed out on and all the things Ethan's never done or may never be able to do.

I've never seen my little man take his first steps, feed himself for the first time, start crawling and pull everything out of my cupboards, ride a bike, falling over and grazing his knees, shouting at me because he doesn't want to do what I've asked, he's never told me he loves me or asked for sweeties, he can't run off when we go to the park or play on the swings himself. The list goes on and most things parents wouldn't have thought twice about or even appreciated. 

 

My way of coping is to provide Ethan with opportunities where he can try and experience normal things. I do a lot with Ethan taking him for days out or making things at home. Just because he can't do a lot doesn't mean he can't still experience and enjoy life. It's not the life I had planned for him but I will try everyday to make it an amazing one for him. 

Our life is full of hospital visits, health appointments, plans and procedures, schedules and routines. I'm constantly on call or waiting for the next issue to pop up. Life is not on hold we are living a full and happy life but it's hard somedays to see those with easy life's moaning about their children or their lives. Just because I know Ethan's disabled and I've accepted his life is different doesn't mean it's not hard for me to see my friends children doing everything Ethan should be. One thing I have never done is compare Ethan to other children because he's him and nothing can change that but I can't help but be upset for all the experiences he does miss out on everyday. 

 

Never take your life for granted or your children's health and well being. I would give anything to let my little man have all of those "normal" things. I would never change him because he's who he is and I adore him. We have an amazing relationship and he brings joy to my world everyday. I will never take for granted that I have my little man and that he loves me even though he can't tell me. He's my rock, my reason to be happy and alive. I will live everyday making his world as comfortable as I can and encouraging him to be the best he can be. I will still have days where I get upset for the life Ethan could have had and it's still hard to watch children of Ethan's age doing normal things but I'm greatful for our special life and that we're in this adventure together no matter what. 

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