I have told our story countless times, to many people. Sometimes, I have provided a sheltered version as I didn't want their pity. Sometimes I glaze over my real feelings in fear of being judged. Sometimes, I feel like I cannot even recount it in fear of leading myself back down the familiar path of self-pity, depression and negativity. The truth is, I have nothing to be ashamed of. I should be able to tell it without people pitying me, without me being drawn into the downward spiral I found myself after I gave birth.
Giving birth to a beautiful baby should be such a joyous time. I can say what followed the birth of my son was far from the best time of my life. It was the worst. 12 hours post birth Elijah began to go purple and have 'dusky episodes'. He was admitted to NICU where he was diagnosed with a serious heart defect. He also had a neonatal stroke which caused seizures. 24 hours as a mother and I had to face that my son would need surgery to save his life at some point. Also that he may have learning difficulties from the bleed on the brain he had.
I spent my time longing to be the other mothers taking their 'normal', babies home in their Maxi Cosi car seats. That I didn't have to visit my son in an incubator every day. That I didn't have to go home after seven days in hospital choosing to discharge myself without my baby. I couldn't cope so I did what I did best. Punish myself. I stopped eating, I pushed everyone away. I couldn't face what was happening to my baby. I was in complete denial he even had something wrong with him. I kept wishing and wishing that they had got it wrong. That any minute now they would tell me that no, he didn't have Tetralogy of Fallot, and that he did not need open heart surgery.
After nine days, Elijah was discharged and we brought our baby home. We didn't have a surgery date but they said it was carried out normally at around six months old. I couldn't enjoy those first few months waiting for the date to come through. With the uncertainty. The time was so tainted, I was constantly worrying and had become depressed. I couldn't enjoy the milestones without being reminded of the fact Elijah needed an operation and he may die coming to punch me in the gut. I was still in denial. I self -destructed. After six months I couldn't go on. My relationships were becoming strained and I was becoming a recluse. I believed it was my fault he needed this. That I didn't grow him right and I gave birth wrong. I became jealous of everyone I knew who went in to give birth and come home. I resented them for not having to go through what we did. I became ashamed of those feelings.
I decided to put Elijah on the cancellation list for the op. We went down for preadmission and before we came home we were given a surgery date for two weeks' time. This was it, six months of waiting and we had a date. I spent the two weeks in fear my son was going to die, that I was consenting him for a surgery that would kill him. I self-medicated to try and get through the night before the op. It was all a blur walking him across the road, onto the ward ready to go to theatre. 30 minutes before he was due to go, his op was cancelled. A heart transplant took precedent and we were sent home. We didn't have to wait along until another surgery date came through. I spent more and more time Googling surgery and success stories. I was fixated my son wouldn't make it. That we would go down and the op would be cancelled again. But it wasn't, it went ahead and we became one of those success stories.
Elijah is now a fit and healthy toddler. I have begun to accept and process what we have been through. I now don't want hide what I felt during that dark time. I want to be honest and confess to others what it was truly like. I want to help, support and mentor others in the same position. To encourage them to accept their feelings and not feel guilty about them. I want to tell my story in hope it provides comfort and that it is okay to feel angry, hurt or resent others. I mean it is your child's life we are talking about, but they are warriors, after all YOU gave birth to them.
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