People often say to me ‘I can’t imagine what you’re going through’. And they’re right. Unless you have been in the horrific situation of loosing a child, then it is a truly unimaginable place to be. Believe me, I’ve been on both sides. I’ve seen people close to my heart loose their babies. And I thought I understood. But I didn’t have a clue. So let me try and scratch the surface of what life is like.
You long for them, you find out you’re pregnant. You’re excited. In that moment, you’re already thinking to the future. The scans, the day they are born, what they will look like, who they will look like. How will your life change. How will you cope with two under 2. The fact that you will need a double pram. Nursery is going to cost a fortune for two. Oh my god, what will work say?!
Then you think a bit further. The things they will do, the shape your family will take. Their first birthday, their school years, what they will like/dislike. What will they want to do with their lives. Before you know it, this tiny being that you have just discovered is a full on living person. They have a future, plans and a personality. They are part of your family. You have great plans for them.
They are born, you love them, a love that is indescribable. This little person, wholly dependent and reliant on you.
In a normal situation, this little one would go on to thrive and live a normal, healthy and happy life. They would achieve and succeed in their own way.
In our case, Thomas was very sick. But he still lead a life. He had enjoyment and smiles. He had a personality. He played, he knew who we were. He achieved and he succeeded. Just in a very different way.
But then that day came. The one that threatened us from the day we found out about his CHD. The day he died. The most horrific, traumatic, truly devastating day of our lives. The day that changed us, who we are, who we will become, forever. Never again will we be who we were before Thomas died.
When he left us, he took a huge part of us, of our family with him. And I wouldn’t want to be that person again. Because Thomas had a profound affect on our lives. We are SO proud of him. Regardless of his medical issues, he was our baby. Everything we hoped and dreamed for. Gone.
So what happens next. We plan a funeral. We get through the funeral. God knows how. Then we do what the majority of bereaved parents do. We go on holiday. Try and ‘find ourselves’ again. We concentrate on Thomas’ big brother Henry.
And before we know it, we are thrown back into life. Because unbelievably, the world kept spinning and life went on as normal whilst ours had been shattered into a million pieces.
But ‘normal’ will never ever be achieved again. Dan and I both still look like who we were before. But we are no longer the same.
I look in the rear view mirror when driving and I am reminded, that’s where his car seat should have been, in the SUV that I bought when I found out I was having another baby. Putting up my double pram, but with a single seat. In my house, a whole room full of Thomas’ stuff. A room that would have become his, once he came home. Thomas’ room. Reminders everywhere. Not one hour goes by where I don’t think of him. Not a day goes by where I don’t feel upset at the loss of him. He is everywhere. He’s in the places I visit, the decisions I make, the conversations I have, and everything that I do. He’s also in what I don’t do. That I can’t do. Because the stark reality of him not being here is often just too much.
He’s in random conversations, he’s in the least expected places. He is never out of my mind. But yet life goes on for everyone else. If I could rewind it, I absolutely would. If i could pause it, until the world made sense again, I would. But I can’t. So I have to learn to live this new ‘normal’. And at the moment, it’s just that, learning.
Dan and I are lucky to have amazing friends and family and a network of support around us. People that, thank god, will not understand our loss, but feel it with us and empathise for us.
But no one, other than those walking the same path of us will understand the magnitude of loss, devastation, anger, frustration, hopeless and helplessness that we continue to go through on a daily basis. All the should have beens. All the lost possibilities that will continue to keep us in a state of bereavement for the rest of our lives. The birthdays, Christmas’, celebrations. The firsts…nursery, school, teeth, crawling, walking, talking. Never hearing his voice. The list is endless and drives you insane thinking about it all.
Today marks Thomas’ first birthday. A day that we should have been looking forward to. Buying presents, making cakes, inviting people to the party that we would have thrown. Just general excitement and some reflecting. ‘This time last year…’.
Instead, we have had the dread of this day. The sadness that our baby, that one year ago today came into our lives, in a very dramatic, dropping his heart rate, category 1 emergency c section way, will not see. The worry that we are not celebrating him enough as we haven’t looked forward to it. The anxiety that we are not doing enough for him, to remember him and to keep his legacy alive. And the profound grief that is ever present in our world, that we try to hide from daily but that rears it’s ugly head often and usually at moments that are unexpected and often inappropriate.
Today now marks the beginning of the ‘anniversary’s’. In three days time, he will have been dead longer than he was alive. In 9 days time was our transfer to the only place that Thomas could call home, Alder Hey Childrens Hospital. The place where I would learn more in 6 months than I have ever learned in my life. The place I got to understand the severity of Thomas’ complexities. The place where I loved him more than I knew possible, felt his every procedure, set back and surgery as pain in my heart and celebrated the smallest of achievements. The place where I became really genuinely thankful. For what they were doing for Thomas and for our family through the good and the bad.
In 13 days time, his open heart surgery day… the list goes on and on. And finally will end on 29th April, in 6 months and 2 days time.
People may think that the trauma stops after they die. I can assure you it doesn’t. There’s the thoughts, be it good or bad, the memories, the flashbacks when you’re driving the car, or stood in marks and Spencer’s and someone sets the alarm off and it’s the exact same sound as the crash alarm in ICU. And in an instant you are back there, watching your blue child not breathe, feeling that feeling that you did back then. Looking like a crazy person in the middle of Marks and Spencer.
Watching the little girl flat line and her parents screaming. Watching her dead body being passed around distraught relatives and watching her be carried out.
Then there’s the memories, the memories of hope that you felt at so many times. But now the story is complete, the hope will come back for a split second, and then the reality will hit and you feel it again and again.
When out in a soft play centre and there’s that family opposite with two under two. That should have be us. The double prams being pushed around. Why wasn’t it us. In Tesco a couple of weeks back, a complete stranger coming up to me and saying ‘be glad you don’t have two, then you’ll really know what hard work is’. Strangers asking me when I’m going to have another. If only they knew. How do you even begin to deal with this?
But this is the reality of our lives now. Having to accept that although we are a family of four, we will never be seen as that. Accept the ignorance of those that don’t know us and let it brush right over us (I can’t do this yet…) Accept that there will be challenging situations, and learn how to deal with those too (again, I can’t do this either).
So, life for us as bereaved parents is a very difficult life to the one we expected when we decided we wanted to have children. Through all of this, we have Henry. The most wonderful, bright, hilarious (and challenging!) little boy. He gets us up on the darkest days, and drags us out when we would otherwise stay in. He gives us reason and purpose. He is now starting to question Thomas. Tom Tom. ‘Daddy, where Tom Tom?’ Is the first thing he said one morning a couple of weeks ago. So we tell him straight. He obviously doesn’t understand but he does know he’s gone. ‘Tom Tom gone’ he often says, when looking up at his picture in the living room, or on my phone case, or when looking though pictures on the iPad. ‘Where’s Tom Tom gone’ I ask him. ‘Up there’ ‘High sky’. Not sure where he’s got that one from… He may mean the picture as he often point to it. He may mean something else.
Today, we remember Thomas. We will remember his strength, resilience and sheer determination for life. We will celebrate his life and his tenacity and we will remember the good times,as there were many. We will give presents to Henry and we will have cake and balloons. And in us doing this, he will live on in the hearts of his family, our friends and everyone who has followed his journey so far. And his legacy will continue.
Happy 1st Birthday Thomas. Love you.
Mummy, Daddy and Henry xxxx