Hope for Heidi

Today marks two years since I held you in my arms for the last time and said goodbye. Watching you take a peice of me wi...
19/06/2022

Today marks two years since I held you in my arms for the last time and said goodbye. Watching you take a peice of me with you as you left this world for another.

The desperation that I feel daily, the longing, the ache, to have you back for even just a moment has led me to realise something i never thought possible after seeing this photo pop up in my phones memories.

I would go back to this moment again.

This moment where I sat there with you in the PICU and realised that you were not going to survive. The moment that broke me even further than watching you endure everything you had during your battle.
That one moment, where I knew I had to be your voice, one last time and tell the world that you deserved to stop fighting.

It was the hardest moment of my life, that second where I sat and actually seen you, seen what this disease had done to my sweet baby who now lay before me, the spark gone in her eyes, trapped inside a body that was shutting down and struggling in everyway possible.

Its a thought and a choice no parent even wants to imagine, even just remembering it brings me to tears and creates a physical pain inside of me but I would go back there right now if I had the chance.

Why?

Because it would mean I would have another chance to hold you, to touch your skin and smell your hair. To caress your tiny fingers in my hand and whisper in your ear. To feel your heart beating, even if I knew i was going to hear it stop.

Even though it literally breaks my heart to relive the trauma of the memory that holds our last minutes together, I would endure it over a thousand times, just to get that chance to feel those things, to feel you, one more time.

Even if it was only for a moment.

05/04/2022

β€” What is Normal After Your Child Dies? β€”
Normal is having tears waiting behind every smile because your child is missing from all the important events in your life.

Normal is feeling like you can't sit another minute without getting up and screaming, because you just don't like to sit through anything anymore.

Normal is not sleeping very well because a thousand what if's & why didn't I's go through your head constantly.

Normal is reliving the day your child died, continuously through your eyes and mind, holding your head to make it go away.

Normal is having the TV on the minute you walk into the house to have noise, because the silence is deafening.

Normal is telling the story of your child's death as if it were an everyday, commonplace activity, and then seeing the horror in someone's eyes at how awful it sounds. And yet realizing it has become a part of your "normal."

Normal is each year coming up with the difficult task of how to honor your childs's memory and their birthdays and survive these days.

Normal is a heart warming and yet sinking feeling at the sight of something special your child loved.

Normal is having some people afraid to mention your child.

Normal is making sure that others remember your child.

Normal is everyone else eventually going on with their lives.

Normal is weeks, months, and years after the initial shock, the grieving gets worse, not better.

Normal is not listening to people compare anything in their life to your loss, unless they too have lost a child. Nothing compares.

Normal is realizing you do cry everyday.

Normal is being impatient with everything and everyone except someone stricken with grief over the loss of their child.

Normal is sitting at the computer crying, sharing how you feel with other grieving parents.

Normal is being too tired to care if you paid the bills, cleaned the house, did the laundry or if there is any food.

Normal is asking God why he took your child's life instead of yours.

Normal is learning to lie to everyone you meet and telling them you are fine. You lie because it makes others uncomfortable if you cry. You've learned it's easier to lie to them then to tell them the truth that you still feel empty and lost.

And last of all...

Normal is hiding all the things that have become "normal" for you to feel, so that everyone around you will think that you are "normal."

Written by A Grieving Mother πŸ’•
β€”
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I thought I would share some of Heidi's journey for world spina bifida day       She was the toughest little cookie righ...
25/10/2021

I thought I would share some of Heidi's journey for world spina bifida day



She was the toughest little cookie right from the start and over came so much in her short life. But her life as a warrior began long before she was diagnosed with cancer.
Heidi was born with a form of spina bifida called lipomyelomenigocele, which meant she had a fatty lump on her bum that had attached to her spinal cord through a hole in her spinal column.

Despite taking my pre natal vitamins and doing the usual routine doctor visits ect, it wasn't discovered until a week after she was born when I was bathing her at home and took her to the doctors because we were worried about the bruise (haemangioma) on her bum.
Soon after her diagnoses, we came to realise heidi couldn't feel her feet and would rub them together until they bled at times due to her nerves being damaged from the pressure on her spinal cord.

Having a tethered spinal cord can be so scary as it can cause permanent damage as the baby grows and the cord is stretched and unable to move freely. It can cause all sorts of dangerous physical and neurological issues and often the nerve damage is irreversible.

After loads of clinic visits, MRIs, ultrasounds and plenty of sleepless nights for me wondering if my baby would ever be able to walk, we finally managed to get her in for surgery to De-tether her spinal cord, remove the lipoma and release the pressure that had been causing nerve damage.

She bounced back like it was nothing! My brave little warrior was up and trying to walk only days after her surgery and was able to feel her feet again! After only a few short weeks she was walking along furniture and taking steps with her walker and she was so proud of herself πŸ₯°

Before Heidi, I had barely known anything about spina bifida. Now I see how common it actually is and that it doesn't only just affect people who don't take their folic acid like some doctors would have you believe. It can affect anyone and is on such a huge spectrum as to how it will present, it could be anything from a dimple or tuft of hair on your back to a fatty lump or an odd birthmark. I have barely ever seen two cases that present the same or with the same symptoms and there many people who go undiagnosed until later on in life when their symptoms get worse.

Which is why I think its great to raise awareness and understanding for the children and adults who are living with this condition with days such as this 😊😊😊

Please donate or share if you are able. It is so important that they get more funding to find better treatments for our ...
31/08/2021

Please donate or share if you are able. It is so important that they get more funding to find better treatments for our loved ones!

27 DAYS TO GO until we join in solidarity to Walk4BrainCancer! πŸ˜€πŸšΆβ€β™€οΈπŸšΆβ€β™‚οΈπŸ’ͺπŸ‘πŸ’œ

Please register for the Virtual Walk, create your fund-raising page &/or make a donation, share the page & spread the word & encourage others to do the same πŸ™ This cause means so much to so many. πŸ’œ

All proceeds go to the Cure Brain Cancer Foundation & the mission to increase survival rates. They are making real progress & need our continued support! ⭐

Let's Come Together! Let's Join The Movement! Let's raise much needed funds & awareness, celebrate the survivors, honor and remember loved ones we have lost to brain cancer & support one another. πŸ’œ

Hand in hand, one foot in front of the other, Let's Beat It Wollongong! πŸ˜€πŸ‘«πŸ‘¬πŸ‘­πŸ’ͺπŸ†πŸ’œ

Please visit https://walk4braincancer.com.au/walks/wollongong/ to register to walk, create your fundraising page and /or donate πŸ˜ŠπŸ’œπŸ™

10/08/2021
https://m.facebook.com/story.php?story_fbid=10219585715695226&id=1285440979
19/06/2021

https://m.facebook.com/story.php?story_fbid=10219585715695226&id=1285440979

Remembering Heidi 15th April 2019 - 19th June 2020
β€œWith brave wings, She flies”

Today a year ago sweet little Heidi passed away surrounded in love.
She was diagnosed with Atypical Teratoid Rhabdoid Tumour just after her first birthday in 2020, she had surgery and began an intensive chemotherapy protocol but unfortunately got an aggressive infection tragically passing away on the 19th of June 2020.

Beautiful Heidi left this world way too soon, a loving daughter and adored sister, although her life was short she left a magnificent mark on this world and her impact will always be felt.

An absolutely delightful little soul, Heidi is deeply loved and missed every day πŸ’ž

Surrounding Heidi’s incredible family and all those that love her in so much love. ❀️

πŸŽ—


Awareness=Funding=Research=Treatments that HEAL and do no harm
πŸ’›

https://m.facebook.com/story.php?story_fbid=762150714325868&id=127338854473727
20/05/2021

https://m.facebook.com/story.php?story_fbid=762150714325868&id=127338854473727

The cost of Brain cancer - Heidi 15 April 2019 - 19 June 2020

Sweet little Heidi was diagnosed with Atypical Teratoid Rhabdoid Tumour just after her first birthday in 2020, she had surgery and began an intensive chemotherapy protocol, she unfortunately got an aggressive infection and tragically passed away on the 19th of June 2020.

Heidi is deeply missed every day πŸ’ž
With gratitude to Heidi’s incredible mother for helping spread awareness in an effort to help others πŸ’™

πŸŽ—





Awareness=Funding=Research=Treatments that HEAL and do no harm πŸ’›

19/05/2021

πŸ’”

https://m.facebook.com/story.php?story_fbid=754607125080227&id=127338854473727
07/05/2021

https://m.facebook.com/story.php?story_fbid=754607125080227&id=127338854473727

β€œEVERY nine days, an Australian child dies of brain cancer.
It is the deadliest childhood disease in this country yet there is so little government funding that survival rates have not improved in three decades β€” only one in five survives for more than five years.”

β€œWe lose an entire classroom full of kids to brain cancer each year, around 35 to 40 children. A lot of parents are told there is no real treatment so a lot are out there fundraising and it is not appropriate that they are out there doing the fundraising,” Ms Bilyk said.

https://www.dailytelegraph.com.au/news/nsw/government-funding-needed-to-help-find-cure-for-childhood-brain-cancer/news-story/110515c6e9af54fa7e8646862c9c41bc

πŸŽ—




Awareness=Funding=Research=Treatments that HEAL and do no harm πŸ’›

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Albion Park Rail
Wollongong, NSW
2527

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