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Wrong Assumptions.

If you are an avid reader of the blog, you know our story by now. However, I wanted to take a different approach, when I submitted a piece for my medical files series. It is about the assumptions people can make about you when they find out about your son's condition and the journey we took in that fist year of Elijah's life. It does not all disappear and become hunky dory when you come home. This is with you, for life.
The look in the consultant’s eyes when he looked at me and then at my partner. He and his colleague then said, ‘we will leave you alone for a moment’. As soon as the door was softly closed, I crumbled. I was being told that my son, the same son who had just been diagnosed with a heart threatening heart defect called Tetralogy of Fallots that would require surgery has had a Neo Natal Stroke. They couldn’t tell me what the lasting damage would be. He may be disabled, he may not reach milestones, he may not walk or talk.
I was left hollow; the assumption from everyone would surely be that I as Elijah’s mother would cope with whatever was thrown at me. That I would love and accept my child no matter what. But, I began thinking, could I really bring up a disabled child? Do I have the strength to do it? I was angry with myself, for not creating a perfect baby, that it was my fault we were going through this. That I didn’t grow Elijah properly and caused his heart defect, that the delivery caused his Neo Natal Stroke. Back in those early days, I was in denial that there was even anything wrong with Elijah. That they had got it wrong. That any minute they would turn around and tell me they made a mistake. I was angry, angry at everyone, but mainly myself. I began to worry what people would think of me and my less than perfect baby. What would happen if he was disabled? But most of all what would people think? Would they judge and selfishly would they blame me?

Elijah, 5 days old in the NICU
The pity in friends and families, eyes and voices when we updated them of Elijah’s diagnosis made me angry. I didn’t want their pity, I wanted for my son to be okay. I wanted to not be going through this. To not spend my first 7 days as a mother watching my child hooked up to every tube and wire. To not be told at 6 am one morning that he had been having seizures. To not have to sit next to him holding his hands for 2 hours while they glued probes onto his head. Or that he wouldn’t feed for 3 days. That I couldn’t just pick him up, put him in his car seat and bring him home. Like everyone else, like the ‘normal mothers and babies’.  I began to internalise all of these feelings as I didn’t want to admit them out loud. I was expected to be strong, to keep positive.
Elijah was amazing, and after 9 days came home. With regular appointments, and check-ups we were told to expect the surgery date to be around the 6-month mark as this is when it is its most successful. As we settled in to being new parents, soon people forgot that Elijah had a heart defect and needed surgery. We were a ‘normal family’ of sorts to the outside world. People admire my beautiful little boy when we took him for a walk, and he met all of his milestones when he should if not before.

Every time someone commented on Elijah I hid the fact he had a CHD and was waiting for surgery. It became our dirty little secret. Except do you know what happens when you try not to think or speak of something? It is actually all you can think and speak about. I think I began to tire my friends with my selfish stories about how unlucky we were and I began to resent others who went in to have a baby and came home on the same day. At baby classes I did one of two things. I was the martyr who had to cope with all of this, and was doing so well when people asked me how brave I was to go through such an awful thing. Or I hid everything and pretended Elijah was completely fine. I regret not telling them the truth, that I wasn’t eating and I was abusing medication just to get through the day.

When Elijah came home, I think the assumption is that you just have to get over and on with it. Yes, we were in NICU, but look your baby is home now, savour it and enjoy your time together. Except I couldn’t and I began to stay inside, and not go out as I couldn’t face the questions from people we knew. I look back now and that time is tainted, and I regret how I acted. I should have just been honest, not bottled in up, not worried what others would think of me as in actual fact it was really normal to be feeling like this. It was the same with Elijah’s surgery, people just assumed we were ‘bearing up’, and we were ‘keeping positive’, and after the success of the surgery and we returned home we could put it behind us and move on with our son and his ‘fixed heart’. I felt like shouting that it is not over, I have nightmares, flashbacks and I didn’t eat properly for months. I was clearly depressed and I was in a very dark place. It doesn’t just end; you do not just get over something like your son having open heart surgery.
They opened my child up, I instantly get a flashback every time I see the scar running down his chest. I vividly remember the blood draining from his chest into the pump. I remember taking him to have his stitches cut out of him. We do not just ‘move on’, we have check-ups, appointments and heart scans. Every time Elijah is ill, I hope it will not result in a hospital visit. When you look at my child you would not think there is anything wrong with him. He is happy and he is healthy. After all, no more surgery is due until he is likely to be a teenager. He does not take medication and yes, we really are now just a normal family. We do not even have an hospital appointment until Jan 2017.
Accepting my heart warrior mum status with pride.
I have learnt a very hard lesson in Elijah’s first two years, that one must not assume that just because everything is okay on the outside, that the person feels like this on the inside. I wish I had been honest to all of the people who said to me ‘how hard it must have been’, ‘how strong you are’, ‘keep positive’. I wish I hadn’t hid behind the denial of Elijah’s condition in those first 6 months. I wish I had sought help earlier. I wish I hadn’t been ashamed of how I felt, and let the guilt over take me. But most of all when people felt sorry for me, secretly glad it wasn’t them going through this, that I was just honest with them, maybe this would have put the wrong assumptions to bed for good.
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