Hey there, Newly Diagnosed Self. You might need to share the tissues a bit with me tonight.
I guess everyone has their difficult days. I know everyday is a tricky one for you right now, so I shouldn’t bleat on. I originally started writing to you ‘cos I wish I had known back then what I know now. Today that sentiment hit me between the eyes good and proper.
Look at this photo, Newly Diagnosed Self.
This, for you, is a few months away yet. For me, it’s 6 years ago. For you, time will be a healer when things become less raw. For me, today, I wish I could turn back the clocks.
I bet you think I’m crazy. Why would anyone want to go through what you are feeling now?! That turmoil, that pain and anguish. The worry. Mostly, the stomach gripping fear.
Today, I came across the photo above. I was making a book for Reuben to explain his disability to him (don’t be scared, Newly Diagnosed Self, it’s ok) and I stumbled across these two little faces.
I remember taking this picture. Zach was wearing a little baby gro with ducks on and the word ‘quack’ written across it. I remember thinking it was so cute as one of his neonatal nurses had nicknamed him ‘Zachary Quack’, after a character from a children’s book. He had little red cheeks, caused by the tape from his oxygen tubing. He was having some time off the oxygen each day, as we weaned him onto air. I bet you can’t imagine that can you, Newly Diagnosed Self, as at the moment the ventilators are the main thing keeping that tiny boy alive.
Reuben wore a spotty blue baby gro. Even to this day, blue is his most favourite colour. I remember thinking the dark blue matched his eyes.
I don’t often look back at the really early photos, as still they recall memories in my mind of when things were worrying and heartbreaking. Today though I did. I went through photo after photo right back from when they were in London, then onto Portsmouth and then home. Each stage and each phase filling me with both sadness, pride, tears and joy. These photos truly refer to how much they’ve grown, Newly Diagnosed Self. You just wouldn’t believe it if you saw them now. Big strapping boys, chatty, hair like strands of gold, no tubes but plenty of scars from years of blood taking to check all was well – almost like war wounds to show what they went through and how they survived.
As I moved through the files of photos, it was plainly evident how much they’ve done. Damned with a diagnosis that condemned their quality of life, the pictoral evidence was very clear about the amazing quality that their life has been and continues to be. So many experiences, so many opportunities, so much fun. I don’t want to ruin the surprises, Newly Diagnosed Self, but you are going to find yourself with those tiny boys in some wonderful places. Meeting Mickey at Disneyland where Zach’s little eyes lit up like he’d met his hero. Ice creams on Cornish sand. Shaving foam fights in a Welsh valley. Hot tubs on a cruise ship. Dinghy inflatable fun in Cheshire. Chips on the beach just local to your house. Picnics in the park. Family time. The fun in these photos shone through. The love radiated more.
Whilst I smiled at these photographic memories, I became rather wet eyed as I remembered sitting in your seat and the worry that lies ahead of you, Newly Diagnosed Self. It’s consuming. As most of these memories, whilst they were amazing times, were in the early days surrounded by worry and grief. Grief that things didn’t work out as they should and worry as to what the future would bring.
Well, I’m in your future now, Newly Diagnosed Self and I can tell you – the worry got me nowhere. I looked at that photo above, and stared at their little faces, realising how much time I have lost.
I’ll never get that time back now. I’ll never get to just enjoy them, without the dark cloud of trepidation of what was going to come. I’ll never be able to just take for granted that they were growing, without the fear of when they were grown. I’ll never be able to take them to baby groups without the fear of what other parents thought or how out of place they made me feel. I’ll never be able to just enjoy their baby years without searching the Internet for magic cures or new therapies to give them the best chance. I’ll never just get to be their mummy, without the guilt of their early delivery or spend each day just wishing things were different.
They were the most beautiful babies. They grew into stunning toddlers. Now I find myself with handsome little boys. Time flew. It passed in a blink. It passed as I trudged from one hospital to another, receiving one diagnosis one week and another not long after. (To be fair, it’s still a little bit like that now!)
If worry made money I’d be rich. I’ve worried and been fretful and stressed about what would happen as they grew. I cried when I should have smiled. Now I’m here and I realise that worry got me nowhere. It lost me sleep mostly. It made me cry a lot. It gained nothing positive. It just made me lose so much time I should have been using to take it all in, to absorb how incredible they were and how they were defying the odds. The worry robbed me of precious time. That’s not fixable.
So, Newly Diagnosed Self, if there was one thing I could tell you today it would be take it day by day and don’t let the worry take over. Worry won’t get you anywhere. They will still grow and become the awesome little people they are today.
A friend advised me once ‘never let medical knowledge impinge on your time with them’. How right was she.
If only I could turn the clocks back. Let time be your friend. It’s the best gift we have.