The Weight of Worry

The Weight of Worry

I had this horrible experience last week. I was at a café with a friend and her daughter, they had a playground and when we arrived it was packed. So many children running in all different directions. Immediately, I was already feeling a little bit overwhelmed and anxious, but I put Piper down to play and I made sure I stayed close.

The Weight of Worry

I had this horrible experience last week. I was at a café with a friend and her daughter, they had a playground and when we arrived it was packed. So many children running in all different directions. Immediately, I was already feeling a little bit overwhelmed and anxious, but I put Piper down to play and I made sure I stayed close.

What it means to tube feed my child

Feeding Tube Awareness Week is February 6 – 10 so I thought I would write about my experience with tube feeding. I knew nothing about feeding tubes or that they ever existed until we had Piper.

From where we started

I must admit I never really go into detail with Piper’s stuff, mainly because people don’t understand and I would be talking for a long time, so I shorten things and say ‘good’, it’s ‘good.’ But really it is so much more than good.

Searching For the Positive

But as for me, I will sing about your power. Each morning I will sing with joy about your unfailing love. For you have been my refuge, a place of safety when I am in distress.
– Psalms 59:16

Piper’s Daddy

This man oozes strength and confidence. I’m forever thankful and grateful for this guy. I get to call him my husband, I get to love him, share our life together but most of all I get to call him Piper’s dad. The most important role in her life. I know he’s been...

Victory

Everyone that has followed our journey so far is already aware of the amazing progress we have made with Piper’s feeding. I am so proud of her and where we are at and I want to share it with you.

What it means to be a Special Needs Mum

I remember every detail of the day we received Piper’s diagnosis. I remember what outfit I was wearing, the chair I was sitting in, I remember the expression on the doctors face as he delivered the news.

Feeding Your Baby

This one’s going to be painful! As a first time mum I planned everything out. I decided I was going to breastfeed or at least try as hard as I can and if it doesn’t work then I will give her formula. I was okay with that. I was just going to give it a go. There is so much pressure on mothers to breastfeed and the way we do it. For me, I didn’t even get a choice to breastfeed or even bottle feed my daughter.

The Best Parts of 22q

I often feel really alone on my journey. My friends and family don’t quite understand. I know they hurt with me and understand parts of it, supporting and loving me unconditionally where they can, but never really getting the full picture. I think when you are actually living and experiencing it with no one around you that can fully understand, it’s lonely.

Expectation vs. Reality

When I fell pregnant I had an expectation of life being all sunshine and roses. Everything you hear and the photos you see tells you to expect a cute little bump, your boobs get bigger and you want to have sex all the time. You feel your baby kicking, you can eat for...

Being Brave

Fear. An unpleasant emotion caused by pain or danger. Trying to be brave enough to face the spider in the corner of the room, to squish it or even go close to it. The first day of high school or moving across the other side of the world at 12 with no friends. Facing...

I Hate the Word Normal

I hate the word normal... I remember back to the day we walked into the NICU a gloomy feeling among the hospital. Sitting in the chair when the doctor came in to deliver the news that Piper's test came back positive for DiGeorge syndrome (22q). What is it!? A missing...

Piper’s Story

This is a speech I wrote and the first time I spoke publicly about our journey. I was asked my one of my old teachers to talk in front of 200 mcc students.

“So be strong and courageous, all you who put your hope in the Lord!”

– Psalms 31:24

Leigh Edwards

I was born in Derbyshire, England in 1992 and I emigrated to Mandurah, Western Australia May 2004. I married my high school sweetheart Josh at 19 and we had our daughter on 14th February 2015, our valentines baby and our little miracle, Piper.

She spent 7 weeks in hospital in NICU. She under went many tests. She had surgery at 5 weeks and was diagnosed with Digeorge syndrome (22q11.2 deletion syndrome – 22q).

I decided to write a blog to journal and express my feelings. This journey isn’t easy but here is an insight into our life.

Get in touch

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