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  • Rob Mullen

Chloe's Story - Chapter 5

Thanks for reading this important story; if you missed Chapter 4, please click here to catch up, otherwise, over to Jamie once again:

How should I feel? We were supposed to walk out of Worcester Royal hospital with twins but instead we walked out of Bristol St Michael’s 10 weeks later with the knowledge that we were likely to have a severely disabled daughter.

Do I feel grateful that she survived? Some parents with a single pregnancy walk out with no child - was I supposed to feel better because, ‘at least we got one?’ Am I resentful that this has happened to me, why me? All these thoughts, positive and negative, light and dark, streamed through my consciousness during this spell but I think my overarching emotion was relief; Chloe was still a very small baby - none of the challenges Chloe would face were obvious at this stage.

We were going home and that was great, but as the weeks and months rolled on, looking back I now know I was avoiding processing what had happened. I started going to the gym; a good thing some may say, but I was avoiding the situation. As the hospital appointments stacked up with Chloe and the full realisation of her future disabilities came to light, the full extent of how our life had changed started to overwhelm me. All this, coupled with the death of a child, started to gradually build up.

The stress and strain in the background of the usual day to day just started to catch up with me, it felt like a mental death by a thousand cuts - that’s how I would describe it. My mental to do list just kept on getting longer day after day and nothing was getting chalked off.

Chloe was born in December 2015. By November 2018, I had noticed a change. 2018 in my mind was a fantastic year. We were living in the countryside in rented accommodation while we waited for our new house to be built; we had snow with the beast from the east in March (which I loved), a hot summer with fantastic memories of events, memorable evenings with my mates watching the 2018 world cup, a trip to a music festival with the whole family, visiting the local fetes in the surrounding villages, trips to the national trust, taking William for his 1st cinema experience, our first UK family holiday and finally moving into our new house. 2018 will be one I remember in 25 years’ time, but as the Autumn faded out and the Winter set in, I just remember feeling like nothing seemed to register in the same way, enjoyment or sadness.

As I moved into 2019, the mental to-do list was full and I felt like I couldn’t take on any more. I didn’t know what was happening, it felt like my brain needed a reboot. It wasn’t until the Summer of 2019 when an innocuous work letter pushed my stress levels to tipping point - I went to my mom and dad’s house and burst into tears. They had said they had recently spotted a change and suggested I go ask for help from our family doctor. Three and a half years later and it had all finally caught up with me. I went and visited the doctor. I am fortunate to have not suffered from ill health over the years, so as I walked in, I think the doctor knew. He was brilliant, and even just talking through a few things in that appointment helped.

Luckily, I swiftly got back on the right track. A low dose anti-depressant for two courses over about 3 months and some medical grade vitamin D supplements to combat what was a dangerously low level (vitamin D deficiency can cause fatigue, tiredness and depression) and I soon felt able to process life’s challenges. The biggest thing I did was give myself time - the time to switch off, to not continually add to that mental to do list. To think only about now and not the thousands of possibilities that the future holds.

I have been good since; had more clarity and a new direction, but that’s not to say the past has been parked or forgotten. Life is suffering but filled with moments of wonder and joy. I put value in the smallest of interactions, the majesty of simple moments. I truly believe that what will be, will be. I’m not a ‘what if’ type of person, I am happy with my life, but am fully aware of how different our life will be to the one we had imagined. There have been a lot of difficult moments in the last 4 and a half years and coming to terms with how our future life changed and really mourning the loss of Phoebe has been the biggest challenge. Even small things can bring a lot of raw emotion flooding back. Answering the question, how many children do you have? A question asked by people who are genuinely interested in your life, but every time its asked, my inner monologue questions why I exclude Phoebe. TV programmes with baby loss in I find difficult to watch, particularly with Lisa, when I can see tears beginning to well up in her eyes as the memories come flooding back. I struggle to see twins; they remind me of what should have been. In some respects, Chloe and Phoebe being identical twins makes it worse as I can just duplicate the image of Chloe in my mind and there’s my twin girls. I look at Chloe, move my head slightly to the left or right and imagine her sister sitting next to her. This is difficult, and always present. It is very different to mourn the life lost and not lived rather than the life lived. I am mourning the hopes and dreams I had for Phoebe, not my memories of her, having never seen the sparkle of life in her eyes.

Chapter 6 (the final chapter) to follow the meantime, please consider donating generously to this important cause. CLICK HERE to donate.


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