Saturday, 30 April 2016

The longest wait.


A brave lady who I met via the wonderful world of Instagram @heartwarriorwill has recently opened up about how hard she is finding the wait for her son’s surgery is. This is something I know all too well. I suppose it one of my biggest regrets in how I dealt with this at the time. I look back on those 6 months of waiting for Elijah’s op date and although we were very lucky in having our son home with us they were so tainted.
 
Tainted with the feelings of uncertainty, anger, resentment, denial and anything else that was thrown into the mix for good measure. It’s one thing to deal with your son needing a potentially life threatening operation, it is quite another to try and cope with the fact you know this is coming, but you do not know when. We should have counted ourselves lucky we knew Elijah needed to have surgery within the first year. This is when the success rate for the op is at its highest. Normally it is in the first 6 months.

Elijah was a very well and healthy little boy and we should have been happy he did not need the surgery sooner. However, it doesn’t work like that, you do not think you are lucky. I was clearly in a spiral of depression, and at times denial. It wasn’t until we went down to Great Ormond Street for Elijah’s first pre admission I even acknowledged the fact that was something really wrong with him that only the surgery could fix.

Elijah at 6 Months

We celebrated Elijah’s half birthday still not knowing when the surgery would be. We had begun the process of liaising with the Cardiac Office in Great Ormond Street but because he was so well, after a surgeon’s meeting it was looking more and more likely that he would be having surgery at around 9 months. Another three months, of not being able to make plans, not being able to tell work when I would be back. I have to say my work were amazing, they said I would always have a job waiting for me. They made it so much easier, but I did feel like I didn’t even know if I would even get to go back. We didn’t know how the op would go, or how long the recovery would take.

I made the snap decision one day, I had enough. At times I thought I didn’t even want him to have it. Deep down I knew this would save his life, he would die without this. I couldn’t face any more uncertainty, I needed us get on with our lives. I was in self-destruct mode, at times mine and Greg’s relationship became very strained. I was clearly depressed, not really eating, or sleeping and living in a negative world where I was convinced my son was going to die. I have an amazing group of friends, some who I have known since I was 12 or 13. I felt perhaps at times I was not the easiest friend to get on with.
Trying to enjoy time as a family
I was very selfish and self-consumed with what was happening. I couldn’t shake the depression or mind-set I had got myself into. They stuck by me, even when I was miserable old cow, even when I cancelled on them, or only spoke about what was going on with us. They were patient, understanding and even though I didn’t know it at the time they were the reason we got through this. I decided one day to call the Cardiac Office and put Elijah on the cancellation list. I didn’t even ask Greg before I did it. It means we would be sent an appointment for pre admission, we would go down have all of the tests and checks and come back home.  The tests would be kept on file, and if there was a cancellation or space we would get a call and go down for the surgery.

It felt like this way I had asserted some sort of a control over the situation. To gain control of our lives again. To become me again. It turns out we didn’t have to wait that much longer. We had a surgery date of 2 weeks later just before we were due to go home from pre admission. The one thing that I was in denial about for all those months, then suddenly wanting more than anything was now a reality. The minute we got a date, a real date I broke down. It was real now. It was happening. We spent the next two weeks getting ready for our lives to be spent in hospital for who knows how long.
Elijah's bag ready for London
Those 2 weeks were the longest and the quickest of my entire life. I felt conflicted one on hand I didn’t want this to happen, on the other I just wanted this to be over. I tried to deal with this on my own, however at times I couldn’t help being so overwhelmed it would just spill out. Trying to be normal on playdates and that you were okay ended up with me crying my eyes out in the middle of the park saying I was so scared he was going to die and not knowing what to do.  Friends and family coming down to bring him presents and wish us well, normally ended up with me upstairs in the bedroom crying and Googling surgery procedures and survival stats.
Playdates in the park
Looking back, I know that I should have been happy and made the most of the time that I had Elijah at home with me and making memories. But doing that felt like I was doing these things in the event he didn’t make it through surgery. That it was for show. I spent so much time being angry that it was happening to us, resenting others that didn’t have to go through this all at the same time of self-destructing. I think I tried to self-destruct to punish myself as I secretly blamed myself that it was my fault he had to go through this. It also gave me some control back over the life I clearly had no control over what so ever.
Sea Life Centre Adventures
I couldn’t enjoy those first 6 months, or if I did then I was soon reminded of what was happening. Yes, I could have handled it differently and it is only now 12 month’s post-surgery that I have clawed my way out of the depression and anger and really began to process how I really felt. But more importantly I have acknowledged and accepted why I felt it at the time.

So many people would say, ‘count yourself lucky’, ‘it could be worse’, ‘stay positive’, at the time this is not want I needed to hear. What I needed to hear was that my son would survive. That I would see him grow up. That I could be a ‘normal’ mum. There is so much pressure in these situations to slap a fake smile on your face and put on a front at the same time of saying, ‘I am bearing up’. Why? I don’t know. I think this was just one more thing that I felt shit about. T

he guilt for feeling this way, for not trying to think positive, for not enjoying the time we had, for not being a happy and wonderful mum. Instead I was emotionally unstable and going through the worse time of my life. I wish I had just accepted these feeling instead of trying to pretend they were not happening. At the time you are in a spiral you cannot get out of. It has taken me 12 months to get a new perspective and process this. Do you know what ? Yes, it took me a while, and yes at times I get drawn into those feeling again but that’s okay. I have accepted it.

Waiting, waiting, and more waiting


No one can tell you what you are supposed to be feeling, if you are feeling it then you are feeling it for a reason. Having a child that needs a lifesaving operation and all of the uncertainty and waiting around is one of the hardest things that anyone could ever go through. We all handled things differently.

For me I didn’t handle it that well. I was however tried to be the best mum I could be to my son at the time, I made sure is was as strong and healthy as he could be for surgery. Yes, it could have been different, hindsight is a beautiful thing.
Coming to accept my feelings of the first 6 months and the long wait.
But do you know what I made it. We made it after the longest wait of our lives and it’s made me realise that I can dare to hope again.

2 comments:

  1. Waiting for surgery is such a horrible feeling and everyone handles it very differently. You have nothing to feel guilty about with how you felt in the run-up to Elijah's surgery - it is such a difficult thing to try and deal with and comes with such a huge rollercoaster ride of emotions. I'm glad that all went well and Elijah is doing well now. We've just been told we have another year or two before the team is planning to do Jessica's next surgery and I feel like the most huge weight has lifted. I have spent the whole of this year so far feeling like I was waiting - and experiencing many of the emotions that you have described. As you have said, you did the best you could at the time - which is all you can do. Thank you for sharing with #hearttoheartlinky - I am sure there are many other heart parents out there who can relate.

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    1. Thank you so much Louise, I read about little Jessica and so happy for you all. You can really enjoy some summer time together without the worry of it lurking over you. I am sp happy I joined the linky to read all the other chd stories x

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