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.
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|
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|
|Playdates in the park|
|Sea Life Centre Adventures|
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.