Hard questions – tougher answers

Everyday you wake up and your day ahead will be full of questions – What should I wear? What should I have for breakfast? Shall I go out tonight?

Having children presents you with a whole new set of questions – What should I dress them in today? Where should we go out ? Questions become a whole lot more exciting and interesting. You begin to think towards future questions like – ‘I wonder what they will grow to be: a teacher, a pilot, a doctor, famous? Will they be popular in school, intelligent? Will they get married and have children of their own?’ – ┬áThese are all questions which me and my husband faced when our darling baby boy Archie was born. Two years on and those questions have changed! Changed in the worst possible way.

Archie was taken poorly last week. After a few manic hours in Cardiff’s A & E we were told he had developed pneumonia. While we watched with heartbreak as around 10 to 15 doctors worked on Archie one doctor approached us and asked – ‘What is your end of life care plan for Archie?’ – complete and utter devastation consumed us both. We know the time will come when we have to let our little boy go, but really so soon? This was very unexpected.

During our week stay in hospital while Archie recovered we knew the haunting question we were faced with days before had to be addressed. We knew we had to discuss this along with others like, where we would like Archie to die, and how much we would want doctors to intervene with keeping our Archie a few months longer. These are the toughest most heartbreaking questions any parent could ever imagine to answer or even contemplate. How does any parent answer such questions? We did so like some sort of robots. I didn’t cry, I answered as if it was the most natural thing in the world. Why? How? I don’t know! I really can’t answer that. There are so many hours in the day where I break down and cannot bear to cope any longer but there are other times when something takes over me and leads me in a very robotic manner.

We cannot plan for the future with Archie like most parents do for their children but we can plan to give him the most loved dignified special ending possible. When Archie tells us he wants to go and sleep with the angels we have planned to make him comfortable and stay by his side until he takes his last breath. We want family and friends to be able to send him off with love. Archie will know he is and will always be loved.
People reading this may wonder how on earth can I write and talk about this so calmly. Some of you may wonder why am I even telling you all. Please trust and believe me that it is not done without complete and utter devastation and emotional and physical heartbreak. I had a nightmare the night after we were faced with these questions. The nightmare involved me losing my child. I woke up as from most nightmare to hopefully be granted with a sigh of relief however I remember I am living this nightmare. There is no waking up from it!

Being a parent to a terminally child leaves you no choice but to cope with what has been dealt to you. It simply comes down to you either cope or you don’t. Myself and my husband have decided to cope. It clearly doesn’t come without its struggles. I have learnt through this journey that there are days when I don’t want to cope anymore , I get days where I don’t want to see anyone and I simply want to cry and hold my hands up and give into the strong image me and my husband so often portray. I have learnt that I am aloud these days and I will have them I just might not show anyone.

Why am I telling you all this then? My reason is I want people to understand life is extremely hard for us and all the other families in the same situation.

We are faced with the most traumatic, heartbreaking questions and situations ever imaginable but we deal with them.

We deal with them with some inner strength you might feel you don’t have.┬áPlease don’t tell me you could never do it because the hard bear fact is if it were your child you would.

Why? Because you have to.

Please, please remember that for all that bravery and toughness we portray in front of you the public, behind closed doors our hearts are aching, we are broken, we are still human after all. Be patient and gentle with us as we deal with the situation and questions simply because we have too, not becasue we want to.

5 Comments

  1. Reply
    Diane Dolan September 27, 2012

    Reading this was just like I had written it
    myself. Each day is a battle that must be
    fought and needs strength an determination
    just to make it through to the next one. X x

  2. Reply
    Sarah September 27, 2012

    To Lauren, Brad, Jack and Archie.

    Our thoughts are with you all always. A very touching write up. I do think how do you cope? , but then understand really now that you only do to an extent.
    Keep being you and dont change for the world. So proud of you all.
    Big Hugs

    The Family. x

  3. Reply
    Melanie September 27, 2012

    Thank you for sharing this, I hope it will help me to support my friend and do a better job of understanding. It’s utterly heart breaking to watch you all suffer.

  4. Reply
    Nicola October 8, 2012

    Lauren you have written this as if I had written this myself. You have summed up the emotions and feelings exactly what we went and are still going through. it’s been over a year since Ethan passed away and I’m often told how well I’m coping but what other option is there? I still have Callum to look after and I am living myself something so precious that was taken away from Ethan. I vowed to him I would live everyday like it was my last and do all I could to make him proud. Nothing will prepare you for the time you have to say goodbye but I did experience this overwhelming sensation of when the time was right to let him go.. I told him this at approx 6am on 3rd July 2011 I told him I loved him, that he was my inspiration, that he was loved and always would be but that if he wanted to go we would understand and that he didn’t have to fight anymore. At 8.33am he took his last breath in our arms with a little smile on his face something we had not seen for many months xx

  5. Reply
    Hawa October 23, 2012

    Hi Lauren,

    This is written as if you have read my mind. And yet I still wish that the hardest decision on our day was “what shall I wear today….”

    My son has Tay Sachs too, and its completely true what you say. Somewhere inside you find the strength to carry on and you’re not sure where it comes from.

    In my journey, I have found myself to be stronger than I knew I could me, more resilient than I thought possible. But I still wish we didn’t have to be….

    Hawa x

    Archie is such a handsome little man xxxx

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