"I remember constantly feeling like life wasn't fair..."

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I started telling Summer's Story around the end of November 2017. Summer was born in April 2017 and the beginning of her life was a total whirlwind. After weighing up many pros and cons to sharing a peek of our life I decided to share it through this space. Paul & I have continuously promised to be honest throughout our blog in hope to share awareness into living with a disability and adapting life in every way. And to also help other families relate in every way possible.

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I remember sitting in my hospital bed two floors up from my baby in the neonatal unit in UCLH hospital in London. After 30+ hours of pure blur my mind starts gathering thoughts and trying to remember whats actually happened. My daydream was quickly ended by a newborn cry in the cubicle next to me.. surely I was dreaming - is that Summer's cry? I had no idea, I hadn't yet heard her cry, it wasn't.. The happy couple next to me filled the air with noise of pure happiness, cooing over their new baby.

The mother in the cubicle opposite learning how to breast feed her baby by the midwife.

I sat so still surrounded by pink balloons, bags of presents and endless amounts of energy food i just couldn't face.

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I had to rest up on the ward, I remember flicking through my Instagram to pass some time and seeing new mums who shared my pregnancy journey with me almost blanking out the pictures as I stared at them. I far from felt like i'd just brought Summer into this world.

It's only now as she's approaching 9 months old I have time to reflect on our journey as it unfolds beneath my hands through the keyboard.

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When we arrived at Great Ormond Street Hospital Summer just a week old, life was still just a complete blur. The nurses were teaching us how to force a tube up through her nose and down the back of her throat. Like it was normal, like all parents had to do this before leaving hospital with their babies. 

I remember looking at Summer's tubes thinking she'll only have these while she's here in hospital then when its time to head home they'll be taken out.

I've never seen another baby with a Nasal Pharyngeal Airway before so mine wouldn't leave hospital with it. I was almost certain. I'm not even sure i've seen a baby with a feeding tube before.. (what a shelter life i lived).

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I remember constantly feeling like life wasn't fair, that feeling has worn off slightly now but there are definitely still days I have this mind set. I gave up smoking, I stopped drinking alcohol, I ate really well, I took multivitamins and done lots of exercise so why was my baby suffering? It just isn't fair. 

I found myself peeking through prams as I pass them by (which was my pet hate when Summer was that little) just to see what those ladies babies looked like. Life just isn't fair.

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I have spoken to endless amounts of consultants at various hospitals in relation to Summer's condition. One in particular asked me if I blamed myself, I paused, I guess at first I really did but actually upon reflection I don't blame myself. I gave up all of my bad habits and I know deep down I done everything I could to grow a healthy baby.

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Life is all about perspective, Summer is one of 50 babies a year born with Pierre Robin Sequence, this is something to celebrate not dwell on. I have a super strong baby who can endure pain with ease and who lives an extremely happy and healthy life despite needing a little assistance with breathing and feeding.

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I've wanted to write this story for a while now, this year really is where the magic happens. Summer at some point this year will be able to breathe alone without the help of her tube. She will also begin (again) her weaning journey.

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I wanted to write this story today because I've met so many mums recently who I know can & will relate to this. Sharing how we feel some days is so healthy for the mind, and if we change the way we feel and think we have actually created miracle babies. 

And actually its O.K and perfectly normal to feel like this. Its perfectly normal to have different emotions that come in waves of good days and bad days. Let your baby be your light and accept the bad days and let them pass by. It happens to a lot of new mums without having to adapt to life with a disability, just be careful not to dwell on it too much for it will steal todays happiness and precious time we won't be able to get back.

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From constantly thinking that life's not fair to being strong enough to be able to care for our daughter and take care of all of her needs the 'it's not fair' mindset really clears and actually she shows us how strong she is and I as her mum can hold my head up high and know I done everything in my power to have a healthy and positive pregnancy and I am so exciting to be raising such a strong, happy and precious baby girl.

 

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Thanks for reading its not fair to strong enough to care,

I guess we all have down days and stronger days but when you change your perspective of your mind, life is actually pretty special.

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Jessica  x

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