A glimpse into Poppy’s Life

I took her to see her pediatrician and we were referred to the Royal Children’s Hospital for testing, such as an MRI, blood tests……then they asked for a swab of both mine and Wade’s DNA.

Unfortunately, on the 16^th of August 2019 we got the worst news you can hear; our daughter was diagnosed with Sandhoff Disease – a progressive and uncurable genetic condition.

They had told us that Poppy was going to live a very short life, meaning the life expectancy was only 3-5 years of age. They told us that it was terminal and there is no cure.

They told us that poppy would not be able to walk or talk, that she would eventually need a feeding tube as she wouldn’t be able to swallow anymore, that she may need breathing support, and that she would also be under Palliative Care.

It took months to understand and comprehend what was going to happen to my precious little happy girl, so we made the best of the time we had with her.

We continued to take Poppy to the zoo at least once a week, we went to the aquarium and we tried to give her the very best of everything that we could. The doctors told us that Poppy was going to lose her eye sight, so we wanted to make sure that she had the most beautiful memories with her family and friends before this happened.

We were in denial for a while, because at this stage Poppy was still mostly happy – smiling and eating her favorite foods (chocolate custard and Kinder Surprise’s she couldn’t get enough of!).

As time went by though, the change in Poppy’s mobility was very noticeable. She struggled to eat and swallow, she was losing weight and she was very lethargic. She started to have little seizures and that’s when our journey at the Royal Childrens hospital began.

Over the years Poppy had countless hospital admissions, sometimes one after another. Some for only a couple of days, others could be for weeks or even months at a time.

Poppy had a couple of very scary moments in hospital when she would struggle to cough up her secretions to the point where they would block her airways and she would stop breathing.

It was one of the worst positions to be in, watching all these nurses hover over your child trying to get her breathing again while there was nothing you as a mother could do but stand there and beg for her to start breathing.

Poppy soon needed a Bipap machine to help her with her breathing. She was sleeping the majority of the time and on quite a few different medications for pain, seizures, and help with her physical comfort.

***

I remember just sitting by her every day and night holding her hand, singing to her, telling her stories and always reminding her how much I love her and how beautiful she is. It was so important for me to tell her these things so that she would never for a second forget how loved she was – not only by Wade and myself, but by every single person whose lives she had touched.

I would always sneak Poppy into bed with me and she loved it. She would be asleep so fast and she just looked so comfortable! Poor daddy would have to sleep on the couch; she had that man wrapped around her finger so tightly! She loved her massages from daddy – she would hear Wade’s voice and instantly start to stretch to give him a hint that she needed a massage – she was so cheeky!

One of my favorite things was smelling Poppy’s hands and feet. It may sound weird, but she had her own scent and I was obsessed with it. It was her own special smell, and I couldn’t get enough of it.

She would still give us a little smile and giggle at times, but heartbreakingly Sandhoff started to take more control of her little body and she was just so lethargic with next to no energy.

***

In Poppy’s final weeks, we had been in hospital for a 3-month admission. She was very uncomfortable, she was on quite a lot of oxygen for a long time and some days we wouldn’t even be able turn down her oxygen without her numbers dropping dramatically.

That’s when they started Poppy on a morphine drip to keep her comfortable at all times. We would only give her a small dose to run through the drip but it helped her be more comfortable and settled and she was able to rest a lot more.

We would put our beds together each night and I would hold her hand, praying and begging her to hold on and keep fighting because ‘Mama needs you’. I didn’t want her to suffer, nor be in pain anymore – but the thought of losing her – my best friend, my daughter, the light of my life. I just couldn’t bear it.

***

I remember the last day of Poppy’s life like it was yesterday.

I woke up and checked on her and I saw her lips had turned white – I knew something wasn’t right. This wasn’t normal for her. I called in her nurse and then started to call Poppy’s family members to come in to the hospital.

It was surreal. I felt like I knew what was happening, but I didn’t want to believe it.

I just laid with her in her bed, telling her how much I love her and how brave and strong she was – cuddling right up to her and not wanting to let go of her.

***

On the morning of the 23^rd of March 2023, just 4 days shy of her 5^th birthday, Poppy very sadly grew her angel wings. She went to heaven wrapped up in Mummy’s arms.

I remember how peacefully she went. Just like she went to sleep – but this time I knew she wasn’t going to wake up. It destroyed me – the life I knew and loved with her for the last 5 years was over. I had just lost my baby. I knew she was no longer in pain. No more suffering, no more tubes and machines helping her to breathe – but I didn’t want her to go. I just cuddled her little lifeless body for hours begging them not to take her and asking for more time.

After Poppy had passed, we had her at home for 5 days. Our girl was finally home where she belonged.  We celebrated her birthday with her friends and family and then sadly on the 28^th of March it was time to lay her to rest.

We asked everyone to wear pink in honor of Poppy as this is her colour. It was a bittersweet day seeing how many people were there to celebrate her beautiful, precious life, and share all the memories they had with her, but also knowing it was the last day we got to say goodbye, to kiss her and to hold her little hands.

***

The days without her here feel like they go so slow yet so fast at the same time. I miss her every single day.  It’s like torture being here without her. You feel guilty for “getting on with your day”, but there is not a second that passes without Poppy on my mind. I’ve gone from caring for her and being with her for 24 hours a day to nothing. It’s like hell on earth – it’s cruel and it’s not fair.

I cry every night and beg her to come back to me. You question everything – did I do enough for her? Was there anything I could have done differently to make her still be here today? It’s something that I wish on no parent or child.

Sandhoff disease stole my baby from me. This wasn’t the life I had planned for Poppy and she didn’t deserve any of this. But now my baby is free from pain and suffering and I know that she is looking down on us, being our guardian angel and guiding me wherever I need to go. I know she is up there doing all the things that she wasn’t able to do here on earth with us.

***

Now that she’s gone, I catch myself looking at Poppy’s photos and videos every single day.

Sometimes I look at them and cry my eyes out, others I smile to see how beautiful and happy she was; always smiling, enjoying all the moments we had with her. And lots of times I feel so angry I want to scream asking myself – “why?”.

“Why my baby, why did this have to happen to her?!“

***

I sleep with Poppy’s special bunny “Miss Bunny” from the movie Bambi every single night. I cannot sleep without cuddling it. I will continue to share and honour Poppy’s life and her story in every single possible way I can – and I will not let Sandhoff disease define her and the beautiful girl she was.

She was and always will be such an inspiration to everyone who had the privilege of knowing and loving her.

Sharni Carlton, 1^st September 2023