That first year was a blurry mess of tears; it was an emotional roller coaster.
After the deaths of our two sons, within just one month I was pregnant again.
My God, fancy that, I am not really sure how it happened so easily. We were on a holiday, trying to escape the aftermath, trying to comprehend what had happened.
We were both suffering very differently, I could not control my emotions, constantly in tears. My husband handled it his way. We started some grief counselling, but after a few visits my husband, said he had enough. I decided to discontinue them as well. I think more so as I found it difficult to connect with someone, who really knew what it felt like to lose a child or rather children.
The months passed by slowly, life went on. The silence at home became haunting and by that I mean not having our son around. Even though Luke was ill, he wasn’t your average toddler, he was very quiet. He sat watching his movies, and I often read to him. He was sick, he had cancer, and for many months he was in hospital having chemo. Our lives revolved around hospital admissions, blood tests, and various other scans. We both continued to work; we had no choice, we still had a mortgage and bills to pay. Luke was our first child, so I suppose that made things easier, as we had no other children to bounce around to friends and grandparents.
Well into my third trimester and I was becoming anxious, really worried that this pregnancy was going to end badly. A few months after our daughter Tayla was born, I was diagnosed with post-partum depression. I had withdrawn from friends and had lost my self-esteem. I lost weight after starting anti-depressant medication.
I was a mess, it took almost a year to get back to where I was. I had support from close friends and family, but it wasn’t something I spoke openly about. It was a deep dark place, and one which I never want to revisit again.
Then the unthinkable happened, our eldest daughter was diagnosed with a rare disease.
Bam…we were blind-sided again.
After some months, I was struggling to cope and my emotions were out of control. It was hard going through this for a second time. We were back in the same hospital, some of the wards and rooms we stayed in were the same ones we spent with Luke almost 15 years ago. Tayla held strong, but conversations soon centered around cancer and death. They were not ones I was comfortable with.
How do you look your daughter in the eyes, and feel confident, feel absolutely certain that it isn’t cancer?
I tried my best to comfort her, to tell her I loved her, and we were in this together, (well actually all four of us were in it) for the long haul. The grief resurfaced again, I went back to that deep dark place of uncertainty. Grief was my best friend, it was something I was able to lean on when things got tough. Worrying that this situation could very well end like it did all these years ago.
Two years have now passed and we still have our highs and our lows, there are still hospital admissions, surgery, scans and tests. We know that Tayla has a rare gene that has caused these rare tumours to grow, and that my husband and younger daughter also have this gene.
They say knowledge is power, and so on occasions, I will jump on my soapbox and talk about her condition. I will talk about her illness to doctors, to anyone who is interested in hearing about it. As more is known about this illness, then more research and funding will mean one day there may just be a cure. So for now, I do my best to embrace these life experiences and hopefully empower and inspire a few people along the way.
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