The real Maisie May

"Like a wild flower; she spent her days allowing herself to grow, not many knew of her struggle, but eventually; all knew of her light." Nikki Rowe.

 

Until Maisie had a two week break from chemotherapy, I had never realised that I actually didn't know my own daughter. Not really, not the true little person she was. The Maisie I had come to know and love over the past year had been living with a secret struggle that noone knew about. Hindsight makes it easy to see that all those endless days and weeks that she spent crying, squirming and pulling her little legs up to her chest were not because of colic, silent reflux, constipation or any other 'normal' baby condition that we could blame. She wasn't just an unhappy, restless and irritable baby like we all thought, this wasn't just 'her wee way'. Unbeknown to everyone, this was cancer. All this time she had been fighting against the odds, trying to grow and develop while a cancerous tumour invaded her body, pushing and squashing her internal organs fighting for space in her abdomen. No wonder she was always discontent, always crying, always wanting to be held by her mummy. She was suffering and no one knew. Once she was diagnosed the suffering continued; chemotherapy, surgery and then even more chemo meant that for her entire life, Maisie's little body had never been her own. She had never had a chance to be 'just Maisie'.

That was until she was given a two week break from her chemo treatment. For two whole weeks she was tumour and chemo free and the difference we all saw in her was incredible. Maisie has always had a beautiful smile but in those few weeks I saw her smile grow bigger to the point her little eyes would squint and her button nose scrunch up. Her giggle also became louder and it honestly took me by surprise. Up until that point Maisie rarely giggled, you had to work so hard to hear that sweet sound but now she was laughing louder and more freely. My little girl was finally happy, finally content and it was so obvious to see. Her hair started to grow back, she started to eat again, she was sleeping better and she was beginning to pull herself up onto her knees to get into her toy box. She was growing in strength and in character and I was so in love with her new little ways.

We spent the entire two weeks enjoying life and bouncing off Maisie's energy and spirit. She celebrated her first birthday, experienced her first band parade, had days out in the sun, had afternoon tea in the park, lots of playtime in the garden and lovely summer walks.

One day stands out in particular for me though. One morning I woke and the weather was beautiful, (a rarity here in Northern Ireland), so I decided to pack up a little picnic and take Maisie to our local park where I knew it would be nice and quiet. I laid out a blanket and we spent some precious time together reading books, playing peekaboo with the parasol, having cuddles and tickles and eating strawberries. It was all kinds of perfect and I still remember that feeling of contentment as I watched my daughter really enjoy herself, really smile and really laugh out loud. I had honestly never seen her that happy before, I had never seen her look so relaxed, so at ease with herself and it was a joy to see.

 

However, these feelings were like a double edge sword and the happiness I felt was bittersweet. I realised in those little moments just how much cancer had really taken from her. This was the happiest that I had ever seen my little girl in a whole year of life, this is the person she should always have been. This is the life she should always have been living. Cancer had been hiding Maisie's funny character, it had been shadowing her mischievous personality and dulling her bright light. It had stopped her from being her true self and my heart ached for her.

 

 

I also realised that cancer had stolen from me too. It had taken away all my confidence as a mother and had replaced it with feelings of blame and guilt. From very early in Maisie's life I struggled to find my feet; I was drowning in her tears and sleepless nights and felt like I always fell short of giving her what she needed. Nothing seemed to work to make her content and I blamed myself, thinking that I was not good enough for her. That I wasn't the mother that she needed or even wanted. I always felt like I wasn't a 'proper' mummy, but those two weeks showed me different. I realised that motherhood wasn't supposed to be just this hard or this difficult and it wasn't supposed to be filled with endless days of pain and suffering. I had been given a glimpse of what our life should have been like and I longed for more days like this.

 

 

But I knew this wouldn't last. Another 19 weeks of chemotherapy lay ahead of Maisie which I knew would once again strip her of her energy, quieten her laugh, and dim her light. It was so unfair. On the morning she was due back up to the clinic my heart was breaking. I wasn't ready to hand my little girl over to cancers hands again, I had only just gotten to know the real her and she was funny, mischievous, full of life and quite a character. I couldn't bare to see all of this disappear.

 

 

And it did. Chemo hit her hard and completely floored her. She was tired all the time, restless in her sleep, she was pale and off her food. Cancer once again had control and I was powerless to do anything about it. I couldn't stop it, I couldn't make her better or take away her pain and for three weeks I cried sore every single day. I couldn't bare to watch what this was doing to her anymore.

 

 

After some time though, I realised that I couldn't keep going the way I was. I was sinking and allowing cancer to have all the power. Maisie didn't need that. Maisie needed me to be strong for her, to be ready to hold her through the tough days and to make the most of the good ones when they came. I had to get out from under the black cloud that had been hanging over me. As painful as it was I had to accept that although chemo was making her this unwell, it would ultimately make her better. That one day, just like the wild flower growing in the most unlikely of conditions, her light would shine again.

 

 

 

 

 

 

Wendy.