One year of loving you

Dear Jaxon,

Despite my previously depressing blog. My feelings on the unfairness of your ill health and my feelings on you, are two entirely different entities. When it came to writing this blog, all that was playing in my head was Drake “I’m so proud of you”. That lyric sums up my feelings for you. Oh how precious you are.

Truly, you amaze me.

After going through all you have, the way your face lights up with happiness fills me with joy. Everyone always asks me how I do it. I want to know how do YOU do it baby boy? How do you have so many problems and still smile every day? Your resilience truly amazes me.

After screaming in fear, frustration and pain as you’re restrained for blood tests. Pricked 4, 5 ,6, 7 times in an hour as they try and fail to bleed you from a vein. You hug me and settle. Comforting you, soothes me. I am your home. Where ever I am, you will be. My arms will always be able to hold the weight of your world, no matter how heavy. Within minutes, you’re unphased, happy and smiling. You even laugh now and it’s the cutest thing in my world, my whole chest fills with love and admiration.

Though you can’t yet sit, we work together like ying and yang. I help you see the world from a different angle when I support you sitting and you remind me you like your view from the ground when you push back telling me you’ve had enough. You know exactly how to get across what you do and don’t want.

You have so many reasons to not try. You were born with a virus that causes disability, you have two cysts on your brain, you have part of your chromosome missing leaving you without key information to aid your learning, and then, you have that big heart of yours thats making your whole body work overtime just to keep it beating. You must be so tired. It must be so frustrating for you. You must be so worn out. But you ALWAYS try! You’re still an explorer. You’re still eager to learn, to feel, to touch, to see. You make me stronger.

You’ve only been in this world for 365 days, yet you’ve endured more tests, needles and diagnosis than many will in their lifetime.

My favourite things about you right now as you turn one… the little things you do that light up my world are:

  1. Bathtime. Being blessed to see you SO excited and happy is amazing. Your legs kick like wild fire. You cover me, the walls and the floor in soap suds and I love it. I drown in your happiness. Sitting you up is a slippery disaster waiting to happen but seeing you pat your hands on the water to splash and kick your legs exploring the difference in the sitting position makes it a fear filled bliss.
  2. The way you reach out to me with both arms whenever I pass you lying on the floor. I’m a sucker for it. The times in the day where I give up, stop what I’m doing and give in to your sweetness for cuddles are some of the most beautiful raw moments that we share.
  3. Your babble. I thought we lost your voice. We did for a short while. You started saying mama at around 6 months but by 9 month you’d ‘lost’ it. Its common for special needs children to regress and lose skills when they’re ill. I was scared we’d never get it back. But a month or so you came back loud as ever. Mama, amongst many other loud and creative gobbledegoop sounds. You’ve finally mastered raspberries too!
  4. You eyelashes! Everybody loves them. They’re insane! I literally have to compete with you, with my lash extensions! And they perfectly decorate those big blue eyes that have lit up to show your happiness since even before you could smile.
  5. High five! You’ve been doing this for a long time now. But it gives me so much hope for your cognitive ability. You understand it and respond happily.
  6. How sociable you are! Don’t get me wrong, sometimes it takes you a little time to stop staring someone out analysing them on a first meet. But generally you’re fabulously friendly and responsive to a stranger smiling at you!

I love everything about you. From the way you stick your tongue out when your smiling or babbling and you look like an old man whose taken his teeth out, to your scrunched up crying face. The fact your skinny little bum isn’t peachy and perky but goes from back to leg cuz you’re a lanky bean. The way you’ve got four teeth at the bottom and non up top. The way your legs go in directions that are super abnormal and you use them to push things on the floor to hand reaching distance. I adore you.

You have taught me so much. You have taught me a love I didn’t know existed. You have taught me strength beyond humanity. You have taught me patience and compassion. You have taught me to be less judgemental and more compassionate. You have taught me there can be a million wars raging behind a happy face. You have taught me more than I can list and probably more than I’ll ever realise myself.

I am so grateful you are blessing my life. It may be stressful, it may be hard, but if YOU can endure it, so can I. And if I can take any of the discomfort away, if I can minimise the pain, if I can broaden your horizons, if I can better your quality of life – I will do it by any means possible. Nothing comes before you.

One year of us baby.

I love you, you love me, we’re a happy family ❤️

I could go on forever. Sometime I wonder if I’m consumed by ‘normal’. If I’m so programmed with expectations from society, childhood, my own encounters and those wretched ‘9 months: your baby can now..’ emails, that if I didn’t know any other, this wouldn’t be so bad. No, his diagnosis and lack of prognosis wouldn’t change. I don’t think it would ever be normal or acceptable to hear that your baby may not make it to their first birthday. But the development delay. If I wasn’t programmed expecting him to sit at 6 months, and be toddling by one, maybe I wouldn’t feel so sad for him. That being said, these are some of the signs for other parents to recognise an issue. It’s just hard


Thank you for reading.

If you have any thoughts or feelings reading this blog post. Drop a comment below. I love the messages I get about my blogs but they do get lost in the inbox. Posting them on the actual blog allows me to save and remember them.

My main platform is Instagram so feel free to follow me on there for more blogs like this and regular updates on my special journey with my son and our normal. Also we now have a Facebook page.

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