Piper Starts School

Piper Starts School

I can’t believe we completed the first term of Kindy. The lead up to Piper starting school was really tough for me. I remember every time I thought about the possibility of Piper going to school, the fear took over my body and I felt physically sick. The thought of...

Hope Trafficker Book

Last year I set the goal to finish writing my book, so here it is! I’m so excited to share this with the world. I never considered myself a writer, but after I started blogging and God put on my heart to write about my unexpected journey of deep pain and taught me that that hope can be found. Hope in us stirs hope in others. My prayer is that after you have read my book, you will be encouraged on your own journey, that you would carry hope and be a HOPE TRAFFICKER.

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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.
What it means to tube feed my child

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

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

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

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

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

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

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

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.

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

– Psalms 31:24

Instagram post 2200586571069998701_20336831 Taya Edwards, 3.4kgs of perfection born 1:46am. We are so in love with you! ✨Our precious gift of God.✨
Instagram post 2185375377757491359_20336831 Feeling thankful to be surrounded by these amazing ladies.✨😍
Instagram post 2180336659816428946_20336831 4 years ago today we made the decision to get pipers tubie, aka peg tube. Never imagined I would feed my daughter through a tube. It’s brought a lot of grief, but it’s also given great joy being able to know this little tube is keeping her alive and she’s thriving and for that I’m so thankful. It’s sometimes still a foreign thought that she isn’t able to eat food and the pain that brings but I’m so proud of my little P and I love how proud she is of her tubie. I love celebrating these moments and reminding myself of how far we have come, they far outweigh the grief. #tubefeedingawareness #pipersjourney #22q
Instagram post 2167280454868933175_20336831 What I love about my brother - he is generous, and kind, he’s loyal and loving. He has a huge heart, he’s caring and he is so loved. 💙
Instagram post 2154857028527132543_20336831 Just you, me and baby for the next 3 weeks! 🥴 #sendhelp #icandothis #31weeks
Instagram post 2143412532480324633_20336831 Trying to remember why I wrote this book, Grief seems to have hit another level this week. Piper’s desire and desperation to eat is more and more intense right now. The begging for us to eat, so she can have licks and the constant repetiveness of saying no, it sucks. 
There is a line i wrote in my book “Grief isn’t cancelled by time or distance but it is covered by hope”. Having hope in God doesn’t lead to disappointment but rather our unshakeable God is something we can cling on to. In the unknown and in the heaviness we can choose to keep hoping which will compel us to find joy in the messy, and in the painful and in the beautiful moments in between, like when Piper leans over, cuddles me and says “I love you Mummy”. Hope is real and sharing our hope and our story, stirs hope in others so that we can keep on hoping, one day at a time. ‭‭ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀ “Let joy be your continual feast. Make your life a prayer and in the midst of everything be always giving thanks, for this is God’s perfect plan for you in Christ Jesus.” 1 Thessalonians‬ ‭5:16-18‬
Instagram post 2129792215405120929_20336831 “I BRAVE” 🌻 yes you are my girl.

The last few hospital visits have been rather traumatic for Piper since her surgery 5 weeks ago. I spent the afternoon being sad in bed, because this journey is so painful some days for me, but now as P is older she’s aware it’s hard for her too and that’s tough. As i picked myself up to have a shower, I reminded myself as I bumped into a complete stranger this morning at the hospital who told me how she read my book, and is on her own journey with her twins, one with trisomy 21 and then I remembered in that moment I can choose to keep hoping. Hope is real. Hope in God. Hope tomorrow is a better day. 💗 #hopetrafficker #22q #pipersjourney
Instagram post 2123218455550228909_20336831 We love you daddee today and everyday. Happy Father’s Day! 💜
Instagram post 2120286798408908734_20336831 The best kind of surprise, all the way from England! Heart is full 😍💜
Instagram post 2119661375647997506_20336831 “Fear is so ugly, but focus is so powerful”. Wrote some words about being pregnant over on my blog. Link in bio. 🌻
Instagram post 2106537350726082541_20336831 This girl managed a whole day at school today, wouldn’t even know she had major mouth surgery 4 days ago. She’s amazing 😍
Instagram post 2104066341896760471_20336831 Piper had her sub-mucous cleft repaired yesterday. Hasn’t been the greatest recovery. We won’t know if it will be successful for a while until she re-learns her palate again. It’s been a pretty rough night, barely sleeping 20mins without choking on her saliva because she can’t feel it to swallow it. Asking to go home, This journey is absolutely heart wrenching but I’m so proud of her brave little spirit and constantly reminded myself throughout the night that’s God’s peace rules in our heart and not in our circumstance. I love you sweet P. 💗 #pipersjourney #22q
Instagram post 2101412568879727827_20336831 The most lacklustre gender reveal 🤣 P still doesn’t get it and was more interested in doing her eating 🙈💗💙

Leigh Edwards

Married at 19, I became a mum at 22 to our beautiful daughter Piper, diagnosed with 22q (22q11.2 deletion syndrome – 22q),  I was taken on an unexpected journey.

Born in England I moved to Mandurah, Western Australia when I was 12. I don’t consider myself a writer, but after I started blogging about my journey of deep pain I discovered  hope can be found, and hope in us stirs hope in others.

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