When I think of sunny summer days I think of going to the beach to build sandcastles, to splash in the sea, to eat ice cream and soggy 'sand'wiches. I think of days at Port enjoying the excitement of the amusements, strolling the promenade and having salty chips by the sea. I think of long, warm evenings in the garden having a BBQ with lots of friends and family, playing in the paddling pool and finding comfort and joy in each others company. I think of hopping on a plane and jetting off on an adventure to see the wonder and curiosity in my childs eyes at her new surroundings, relaxing and soaking up the rays as well as the quality time together that holidays bring. These are all the things I had dreamt of for our summer together, all the things I envisioned our little girl to enjoy and experience for the first time. But they were to remain just that. Dreams, visions, desires; none of which would be our reality.
People have often said to me how strong I have been throughout this, how well I have handled it all and how positive I am. But the truth is, I really haven't been strong or positive. I have merely put on a front for the sake of my daughter. A little girl who has been suffering, who is going through something no child should ever have to, whose start in life has been massively unkind and unfair. I have just been trying to do everything I can to make her bad days better, to make her pain ease where possible and to make her good days memorable. I have been trying to make myself someone who she can look to and see happiness, love and warmth and not the pain, hurt, frustration and anger that I actually really feel.
It was killing me over the summer to see family after family flock to the seaside on the sunny weekends, to venture off on holidays together, to share their days of fun and laughter with one another. It was hurting me that we had to isolate Maisie from days spent at the caravan with her family, playing in the parks, on the beach, in the pools, to instead be at home in a chemo bubble facing endless days of tiredness and sickness. It was frustrating me to hear people complaining about how their holidays were spoilt because it rained for a day or two, or how their plans didn't turn out just how they had hoped. It was annoying me that no one seemed to realise just how lucky they were, how blessed their lives actually were, how all those small and insignificant details did not matter in the grand scheme of life. I was resentful of all those people who were making plans for weeks ahead and who were booking family holidays for the following year. It tore me up because we couldn't do that. We couldn't plan ahead, we couldn't create ideas and dreams of where we would go next week, next month or next year. We had no control over our lives and no idea where this journey was going to take us. It completely ripped my heart to shreds that our reality was, we had no idea if Maisie was even going to be here with us. How can you possibly handle that well? How can you at all be strong when that is a thought you have on a daily basis?
As the summer continued our days just started to blend together to the point where I had no concept of what time it was or what day of the week it was. Time was just passing and bringing with it relentless days of the same thing. My ability to keep up this front and to hold it all together was starting to wear thin as all those dreams and hopes I had for Maisie were crushed. I tried to avoid social media as much as I could but the world in which we live in now makes it almost impossible to ignore, and seeing everyone else enjoying the summer in the way I had hoped to with Maisie, was too much to bare. By the time September came my husband decided that we needed to get out of the house and have some time away at the caravan. We went during the week when we knew the children would be back to school and parents back to work so we could get out and about without fear of infection for Maisie, and without feeling like we need to turn away and cut ourselves off from the crowds of people.
During our time at the caravan, as I watched Maisie's strength and zest for life shine brightly in front of me, I realised something. I had always thought about how unbelievably cruel it was that a child of only 8 months old could be diagnosed with cancer. That their life could be riddled with such devastation and possibly be cut short before they even had a chance to live it. I had always thought about that side of it without looking at the teeny tiny 'blessing' that it also has. Unlike us, Maisie has no idea, no understanding or realisation of what she is missing out on, how limiting and isolating her life is. She does not know that her life is significantly different to other children's, or that her environment and experiences could be better. This is the life she knows. Devastatingly sad in one respect but like I say, a teeny tiny blessing in another. Maisie has enough suffering to go through with surgery and chemo and the impact all that has on her body, without having to bare the hurt of knowing fully how her life 'should be.' Looking back at pictures of her since her diagnoses, apart from the lack of hair on her head and the colour in her face, nothing else has changed. Her beautiful blue eyes still sparkle and her infectious smile is still as big. Despite all my worries and fear of her lack of adventures and experiences, she is showing me that she is happy. Her joy, her affection, her laugh, strength, abilities and her personality demonstrate to me that she is in an environment where she is loved, encouraged and given all the chances possible to thrive the best she can. And isn't that all we can hope for as parents?
As the summer ended we were still facing months of more chemotherapy, but with a different mind set I was ready to face them with my strong little warrior. I knew that I was still going to have days where I hated how things had to be, that I couldn't give her the life she so deserved and how she had to live in such isolation, but I also knew that I had a heart full of love to give her. Maisie is everything to me, she has made my life richer, my days longer but also full of purpose, and has changed me forever as a person. I owe it to her to try and be positive and to live the best life we can no matter what challenges we are facing. Because lets face it, she certainly does.
Wendy.
People have often said to me how strong I have been throughout this, how well I have handled it all and how positive I am. But the truth is, I really haven't been strong or positive. I have merely put on a front for the sake of my daughter. A little girl who has been suffering, who is going through something no child should ever have to, whose start in life has been massively unkind and unfair. I have just been trying to do everything I can to make her bad days better, to make her pain ease where possible and to make her good days memorable. I have been trying to make myself someone who she can look to and see happiness, love and warmth and not the pain, hurt, frustration and anger that I actually really feel.
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| Day after day at home - tired and sick |
As the summer continued our days just started to blend together to the point where I had no concept of what time it was or what day of the week it was. Time was just passing and bringing with it relentless days of the same thing. My ability to keep up this front and to hold it all together was starting to wear thin as all those dreams and hopes I had for Maisie were crushed. I tried to avoid social media as much as I could but the world in which we live in now makes it almost impossible to ignore, and seeing everyone else enjoying the summer in the way I had hoped to with Maisie, was too much to bare. By the time September came my husband decided that we needed to get out of the house and have some time away at the caravan. We went during the week when we knew the children would be back to school and parents back to work so we could get out and about without fear of infection for Maisie, and without feeling like we need to turn away and cut ourselves off from the crowds of people.
During our time at the caravan, as I watched Maisie's strength and zest for life shine brightly in front of me, I realised something. I had always thought about how unbelievably cruel it was that a child of only 8 months old could be diagnosed with cancer. That their life could be riddled with such devastation and possibly be cut short before they even had a chance to live it. I had always thought about that side of it without looking at the teeny tiny 'blessing' that it also has. Unlike us, Maisie has no idea, no understanding or realisation of what she is missing out on, how limiting and isolating her life is. She does not know that her life is significantly different to other children's, or that her environment and experiences could be better. This is the life she knows. Devastatingly sad in one respect but like I say, a teeny tiny blessing in another. Maisie has enough suffering to go through with surgery and chemo and the impact all that has on her body, without having to bare the hurt of knowing fully how her life 'should be.' Looking back at pictures of her since her diagnoses, apart from the lack of hair on her head and the colour in her face, nothing else has changed. Her beautiful blue eyes still sparkle and her infectious smile is still as big. Despite all my worries and fear of her lack of adventures and experiences, she is showing me that she is happy. Her joy, her affection, her laugh, strength, abilities and her personality demonstrate to me that she is in an environment where she is loved, encouraged and given all the chances possible to thrive the best she can. And isn't that all we can hope for as parents?
As the summer ended we were still facing months of more chemotherapy, but with a different mind set I was ready to face them with my strong little warrior. I knew that I was still going to have days where I hated how things had to be, that I couldn't give her the life she so deserved and how she had to live in such isolation, but I also knew that I had a heart full of love to give her. Maisie is everything to me, she has made my life richer, my days longer but also full of purpose, and has changed me forever as a person. I owe it to her to try and be positive and to live the best life we can no matter what challenges we are facing. Because lets face it, she certainly does.
Wendy.
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