‘Changing Chapters’

Hey there, Newly Diagnosed Self.

How are you? You don’t have to answer that actually. I can see for myself. Struggling I know. It’s a couple of weeks since I spoke to you last, and in many ways things are even more confusing for you now than they were then. All cried out aren’t you? Yep, it’s like Niagra. Tears – they sting.

Numb yet in agony? Yep, I remember that feeling.

Can’t sleep yet so tired? Yep, I remember the worries of the early hours. Things are so very lonely and more painful at night.

Love those boys so very deeply yet scared of them too? Yep, they are so tiny aren’t they…so vulnerable. Yet you will learn you are their biggest protector.

Want the Drs to talk to you, yet quite often hide from them so they can’t give you any bad news? More bad news.

One day soon you will get a glimmer of hope. Some positivity. Until then, I thought I would let you know some stuff that’s happened since to help that glimmer alight. There is so much to tell you. So much that will make you smile, laugh, cry. 5 years is a long time but so much is going to happen. You are going to face a huge amount of change.

Change. Not something I have ever liked much. I like to know where I’m at, like to feel settled and the unknown isn’t something I go much on. Guess this is why the twins’ diagnoses hit me like a tonne of bricks. Nothing like an unexpected life changing conversation to hit you right smack in the face.

Back at the point you are at now Newly Diagnosed Self, that news gave us the greatest unknown. Drs were absolutely sure how much the damage to the twins’ brains would affect them, but this left us with massive gaping holes in the future and what it would mean for them and for our family. What I did know though is that things were about to change. Unrecognisably.

Career, friends, hopes, dreams, goals, expectations, choices – all subject to change. People will come and people will go. People will amaze you. People will disappoint you. (Don’t even try to guess which ones – it even surprises me still to this day). What you loved the most before you gave birth will change to things that hardly seem important now. Hopes and dreams will be rewritten. When you are experiencing all that change, it’s made even worse when you have no control over it. Quite a bitter pill to swallow when you are a self-confessed control freak. But what I have come to realise is that what has happened to our family is a roll of life’s dice. The odds weren’t kind to us but this journey’s going to be a lot smoother once you know that along the way, the change that you fear is actually going to bring great things.

There will be many chapters to go through and just when you are getting used to one, along comes time for another. It’s very important though to not be fearful of the change, nor rush towards it. The most important time is the one you are experiencing right now. The chapter you are in now is the most vital one. Don’t wish your time away. You do not gain anything by worrying about what has been or what might be. After all the worrying you spend doing, you will realise you haven’t enjoyed the now.

I am not too sure at what point I realised that. I am not quite sure at which point I realised I had reached acceptance either. I know for you, that seems a virtual impossibility right now. Don’t get me wrong, Newly Diagnosed Self, I will never ‘accept’ what has happened to them. How can any mother truly ever be completely ok with their child facing the daily struggles that this disability brings? However, at some point along the way, I have reached a point when I can say ‘we are ok’. Yes we hit obstacles – some we avoid – but some we crash into at the speed of light. But we bounce back up and get back into the swing of our life again. Keep calm and carry on and all that. The pain that you are feeling now will never go away….it will fade and it will linger but it will never die completely. Yet you will start to see things in a different light soon. Just like when spring brings the new shoots from the ground, things will start to emerge in your life where you can see change. A spring fresh feel to what was a dark winter. You will have a fresh feel – like spring – to the dark times you have lived through recently.

Of course, I hate the way the disabilities negatively impact on their lives – yet I love the positives it brings, and there are many. Disability has taught me so much about perspective and importance, and it has led me to people I otherwise never would have met. Beautiful, wonderful people who hold your hand when you need it the most. Once you realise that you can be at peace with the life you lead, you can lead it much more positively in the power of hope and pride, rather than in the shadows of despair and hate.

Don’t get me wrong. I have many demons that hide inside the dark depths of my head that rear their ugly faces at times. Those doubts in my ability to make the right decisions for them is one of my biggest villains. Change creates many decision making opportunities and moving from one chapter to the next forces you to soul search to make these decisions. I often wish at times like this I was 5 years old again….a little girl where someone would have to tell me what to do. But I’m not – I’m now the adult in charge of two vulnerable little boys’ lives and they depend on me to do the right thing. No pressure then. You will have to find those balls of steel we talked about last time Newly Diagnosed Self. But I always think, and I always apply this rule, go with what your gut says, as intuition and instinct are hardly ever wrong.

Change will lead you to new opportunities though some will create reminders how different your lives are now. Different to the lives you had hoped for or planned for. That will always bite you on the arse. ‘What would his voice have sounded like if he could sing in assembly like the other children? What would his drawings look like if he could hold a pen? Where would he come in the school races at sports day if his legs worked?’ You are just going to have to swallow those gut wrenching feelings Newly Diagnosed Self as they are just there and I am afraid they never ever go. However, always look for the flip side. THEY said he would never talk and he chats away in his own little way. THEY said he would never eat and today you bought him his chocolate easter egg. THEY said he would not know who you were, yet he gave you the biggest beaming smile when you picked him up today.

And…..You won’t ever, ever believe this Newly Diagnosed Self, but R is about to start full time school. Mainstream school. I know, right?! Amazing or what? He loves it there. Yet by saying ‘hello’ to mainstream means saying goodbye to some very special people who helped him to get to that point. This has been a very hard and agonising decision to make, but one I know is right. Never has a truer word been said than ‘at times the best decisions are the hardest ones to make’. Yet this is a positive change, and one we will grab and embrace. I will relish in the new chapter, with massively fond thoughts of the people that helped us build memories in the last.

I often think – I wonder where we would be, what we would be doing if life had not rolled us these dice. Sometimes I am as scared of that as I am of the life we lead now, as this is ‘our normal’. And our normal, newly diagnosed self, is one I respect, love and cherish very much.

“Just because the past didn’t turn out like you wanted it to, doesn’t mean your future can’t be better than you ever imagined”.

Newly diagnosed self, you will be just fine.

Haanagh xxx

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