When the going gets tough

I wanted to focus on how tough life has been for Ryan and us as a family over these past couple of months. His anxiety has heightened to the point where he is desperately trying to shrink his world into such a small box where he feels safe and comfortable but unfortunately life doesn’t work like that. Myself, Kristian and Noah are Ryan’s security blanket in life and we, along with grandparents, are the people that he feels safest with.

We try and do our best to give Ryan all the opportunties he deserves in life and set him up to be as independent as possible so he can have a life away from us that is his own just like everyone else does. At the moment this is really difficult as he struggles to go out and be around other people. He has been struggling in every aspect of life, school, home, in the community. Sometimes I think it is easy for people to forget that just because Ryan has a learning disability and special needs he still experiences emotions like the rest of us do. He gets happy and excited about certain things and he gets upset, frustrated and angry like we all do at times but he finds it difficult to express his emotions and I wonder whether he understands his emotions and what they mean? He has been more expressive of his emotions over these last couple of months. As a baby Ryan rarely cried, it’s heartbreaking now to see him get upset to the point where he is distressed and crying, something we aren’t used to but it is the way he is able to express himself at the minute. I can’t imagine how hard it must be to not be able to express how you are feeling to other people, we end up second guessing how he is feeling sometimes and that is really difficult because as parents you want to do everything you can to protect your children and make sure they are happy, healthy and safe.

The majority of our time over these past few months have been focused on Ryan and the issues we are trying to overcome but this has definitely taking a toll on us as a family. It sometimes feels like our whole world is centred around the problems we have faced with Ryan and the fights we have had to endure to get what he deserves. We spend all our time thinking and talking about it and we forget what else our life is about. Noah has definitely felt the impact of this more recently, he is more aware of what is going on but struggles to understand what it all means. Through no-ones fault he has been put second a lot of the time and as a mum it breaks my heart to know I haven’t given him enough attention, I don’t want him growing up thinking Ryan comes first when they are both equally as important to us and the one thing I dread the most is Noah thinking as he grows up he hasn’t had the same love and attention as Ryan and I don’t want him to think he is going to have to be responsible for Ryan in the future.

I try and protect Ryan and Noah as much as I can from seeing me emotional and upset on those really tough days but sometimes it is difficult to hide. I am meant to be the one comforting them, making sure they are ok not the other way round. It’s hard to keep it all in when the frustration gets too much and you need to vent, Kristian and I are lucky that we have each other but these past few months have even tested our relationship at times. We are very lucky that we have supportive families and I’m extremely grateful to have some amazing friends in my life who will sit and listen to me, give me a hug and provide the cocktails when needed! If these past few months have taught us anything it’s how important it is to look after ourselves as well as our boys. The boys will always be my main priority but I have come to realise how necessary a bit of me time is to recharge my batteries ready for the next battle.

I do believe that everything happens for a reason and on those extremely tough days when you just want to run away I now stop and think we can do this. Ryan came into our life for a reason & Noah did, all it takes is a hug from Ryan, a I love you mum text from Noah and I think this is exactly where I’m meant to be and do you know what we are going to be ok……