Our Story

On the 17th of February 2010 my son, Archie, was born. He arrived into this world breathing and crying and, just as a Mummy would be, I was completely overjoyed. Archies pregnancy had been extremely bumpy, to put it mildly. At the 19 week ultrasound they had found a few issues. This led to weekly ultrasounds to monitor the development of the baby, aswell as the development of the condition they were monitoring him for. They weren't certain if the condition would have an impact on the baby breathing when he was born so, when he did the relief was beyond anything that I had felt before. The team around Archie were extremely happy with him and the outcome was looking very positive. Where we were preparing for a baby that would have a very uncertain future, we now got the news that he would need physio and OT and may have some learning difficulties. When Archie was 5 days old, he was put in a full cast to correct the foot contracture that he had, aswell as hand splints to correct the contractures in his tiny little hands. He was so brave and I was so proud of this tiny little boy that I was lucky to call my own. Archie was in NICU at Westmead hospital from 5 days old. I spent every day and night by his bedside. We would only go home to sleep and to spend time with our other little boy who was two and a half at the time. I hated leaving my baby and I missed my big boy so much. It was a very difficult time and I was so grateful that I had such an amazing family to support. us. 

Fast forward 2 weeks and Archie was doing well. He slept alot and he still had to be tube fed, but he was doing alot better as the days went on. He also struggled to get off the last tiny bit of oxygen he was on, but the doctors didn't seem too concerned about that. We were taught how to put the tube down for tube feeding, shown how to use the oxygen and we were getting excited to finally be able to take our baby home and start our new life with his big brother. 

One day I was doing my regular daily ritual next to my little boys hospital cradle and I noticed that he was twitching. I advised the doctors what I had seen and, after a bit of back and forth, they booked Arch in for a few tests and scans. The next day we were meeting with the team around Arch (and it was a big one) to get all the information we needed to finally transition home with our baby. We were so eager, so excited and we could not wait to have that meeting and start living life outside of the hospital. That meeting, unbeknown to us at the time, would change our life forever.

"Your son has a rare condition. PCH Type 4. It is a degenerative condition and effects boys much worse than it does girls. The way Archie is declining, we expect that he may only have a few more weeks to live. At the most a couple of months". The rollercoaster ride that had been the last 10 months had come to a peak and I was now flying back down to earth at full speed. No seatbelt, no carriage and nothing to make it a more gentle drop. My baby, the baby who I had been told we would be taking home in a couple of days with just a little bit of support needed to get him through until he was a bit stronger. My beautiful little boy. He was going to die and they told me to take him home and keep him comfortable. Where do we go from here? What do I do? I hadn't been in this situation before and, living in the bubble of healthy family, healthy children that I had always lived in, I just couldn't even comprehend it.

When you are taking your baby home from NICU, they put you in a room with them for a couple of nights so that it is not such a shock taking a sick baby home. I was in there by myself with Arch for the first time and, in less than a minute, he started to have the first seizure that I had seen him have. A proper seizure. I had never seen a tiny baby have a seizure before. I had no idea what to do or how to help and I was terrified. I was told that he couldn't have medication as he was so rare that they just didn't know what would work. I refused to leave the hospital without medication, oxygen, bi-pap, follow up appointments.......education! I am someone who likes to be prepared for the worst and hope for the best. I refused to take my baby home and just let him die. I would do whatever I had to do to give him a full life surrounded by love and with everything that he could need at his disposal. So with that Palliative care made a suggestion. They told me to have a look at a place called 'Bear Cottage. I researched it and decided that there was no way I was going there. To go to a hospice meant that I would have to come to terms with the fact that my Archie was dying. I would not go there. Well.....I did go there. On the 17th of March, Archies one month birthday, we left the hospital and stepped into Bear Cottage for the first time.

We stepped out of the lift doors and there was a gigantic blue bear cake sitting on the outdoor table. So many people surrounded it. Big smiles, loud voices and love that exploded so much that you could just feel it. We had started our first stay at Bear Cottage on their 10th Birthday. And so our journey at Bear Cottage began, our journey with a terminal baby, our journey into the scary unknown. I wouldn't have been anywhere else. I love you Bear Cottage....then, now and forever. 

We had many stays at Bear Cottage. We spent our days surrounded by people in our world. We were all the same there. The outside world was a world that I didn't feel comfortable in anymore. Bear Cottage felt like home. You didn't need to explain anything to anyone and it wasn't unusual to be different or look different. We were a big, unconventional family. I was able to spend time with my eldest son and we were able to be a family and do normal family things. He absolutely loved it! There was so much fun to be had, excursions to go on, ice-cream to eat, arts and craft to do. It is honestly the most magical place. I was able to spend time with other Mums who were going through the same thing. The staff and vollies were amazing and became like family. I was so very fortunate to be part of such a beautiful place, even if it was for the most horrific of
reasons.

Archie was only in and out of hospital a few times. If he wasn't doing well we would usually head to Bear Cottage. But at the end of August 2010 he ended up in ICU. We were there for 2 weeks and we had to say goodbye to him a handful of times. But, he kept fighting, against all odds and against what the doctors had originally said he would do. The first time they extubated him he was doing well, but after an hour he had to be intubated again. The next time they were due to extubate him they had a discussion with us to find out what we would like to do moving forward. They didn't think that Arch would be able to breath on his own, so they gave us options. We chose to let him go peacefully if that is what it came to. So on the 13th of September, just after 10am they extubated my boy in my arms. I spoke to him softly, told him I loved him and I would be ok. He closed his eyes and went to sleep....he didn't pass away. The next day we left ICU and went to Bear Cottage.

The night after we arrived at Bear Cottage I made a decision. My son had survived through so much. He had made it so far beyond what they said he would. I had fought to get him OT, Physio and ENT. They said he would not be responsive, but he smiled all the time, he moved his head side to side, he recognised different people, he loved music. He lived a beautiful full life. He was so sick in the ICU and it was honestly a miracle that he survived it. So, that night I decided to plan his funeral. I researched all the readings and documented what I wanted. I documented the songs. I documented the balloons and the flowers and I had links to exactly where to get them from, I found a place that sold his special 'Bacio' chocolates in bulk and I documented the link to that. I found the stickers that I wanted to cover his coffin and I ordered them to keep on hand. I decided what outfit I wanted for him and found where to buy it. I made my list. The only thing I didn't do was put the booklet together, but I had everything that I needed to go in it. I then gave the list to my Mum. I asked my sister to put together the slideshow and add to it as she went. It was done. 

After two weeks of End of Life care at Bear Cottage and fighting the biggest fight to stay as long as he could, on the 1st of February 2011, two and a half weeks before his first birthday, my Archie went to his new home at the rainbow. We were at Bear Cottage surrounded people that knew my boy and our family. We were safe, we were loved and we were in a place that was home to us. My eldest son was happy and playing and it was just right for him. He was able to come in and spend time with his little brother if he wanted and then leave and go back to his fun loving three year old life scootering the grounds and playing all through the Bear Cottage building. If there was a perfect way to be at a time when your child had just passed, then this would be it. Arch stayed in the special cooled room that they have at Bear Cottage. It's called 'Clifton Gardens' and is set up just like a beautiful bedroom. Our room was connected to it and we were able to come and I go as we pleased. Our family came and spent time. They would go and sit with him and play music, sing, read books....just be. We had a lovely lady come and do Archies hand and footprints for us and make up his little fingerprint jewellery. We had someone else come and do hand and foot casts for his frame and she made sure that we collected more to keep for the future. We collected his hair. The staff of Bear Cottage took pictures, some staged, some in the moment. I didn't want a white coffin, so one of the amazing husbands of a beautiful staff member spray painted it "Archie Orange" for me. I left the coffin in Archies room and people would add the little ladybeetle and garden decals to it when they came in to visit him. Everything on the list had been set in motion and I was able to take in every second that I had left with my little man. Because of Bear Cottage, I was able to do that.

On the day of Archies "Going to the Rainbow" party I carried my boys coffin on my lap as we drove in the yellow Volkswagon Beetle that had generously been donated to us for the day. I just had to have my little beetle driven in his own little beetle to his party. He wasn't going to have a formal or a wedding, so this was his time. It was a beautiful day filled with colour and everything Archie. Ladybeetles, Rainbows and Sunflowers. Bacio chocolates were handed out to the guests who were covered head to toe in bright colours. I read the Eulogy. It was hard, but I had to do it as I wasn't going to be able to stand up and talk about my boy at his 18th or 21st. This was the time I had and I wanted everyone to know how proud I was to be this brave, strong, amazing little boys Mummy. We left straight from the chapel and went to a ice-cream parlour with our immediate families. It was the most perfect day. It was everything that I had hoped for when I planned it. And still to this day, I can look back on it and smile because I know that my boy would have loved everything about his "party". 

Having the staff from Bear Cottage there to guide me through that day was absolutely priceless. I had people who had supported so many parents through this. They put into action things that I would not have even thought of so that I would always have keepsakes of my son. That, combined with having everything I had done for Archies funeral before hand, made it a beautiful time at a horrendous time, rather than just a horrendous time. I will always be so grateful to everyone at Bear Cottage. They will always be my family. I am so thankful for the ongoing support to myself and my children. When you have lost a child at any age, you feel like nothing makes sense anymore. It is a feeling of being lost and feeling like no one understands. The world is a foreign place. To have a community that you can count on and fit into is everything.

After losing Archie and coming into contact with other parents that had lost children, some of them now very dear friends, it became apparent to me that my experience was very different to alot of other people. People don't know about the keepsakes, the ways you can spend time with your child, that you don't have a set time limit, that you can have a bright orange coffin, that you can travel in a Volkswagon Beetle, that you can make that time whatever you want to make it. When the time does come you are in a fog, you go through the motions and you certainly don't ask questions. Taking the step to organise Archies funeral wasn't easy, but I didn't want to live with any regrets. I wanted it to be perfect. We spend months planning birthday parties and years planning weddings. A funeral is a celebration of someones whole life......why do we cram the planning of it into less than a week? Making Archies funeral all about him rather than just cookie cutter, has helped so much with my grief moving forward.

So, this is how There Will Be Rainbows' was born. I wanted to give people what I was so fortunate to have. I wanted to continue my Archies journey through the journey he set us on and the one I continue to travel. Let me support you through your grieving before, during and after your loved one passes. Let me create the most beautiful day for you at the most terrible time, whether pre-planned or otherwise. Hand the list to me. Let me coordinate everything so that you can spend time with your loved one. Let me give you and your family a community to belong to.

I will do my best to help make your journey through grief a little less scary. With some planning and support, I can show you that, even through grief and loss....... There Will Be Rainbows x 

After we came out of ICU in September 2010, we were staying at Bear Cottage. We were asked to appear on SBS INSIGHT on an episode that discussed Palliative Care. 

This was the stay at Bear Cottage where I had also put together every aspect of Archies funeral. He was his beautiful self and living life as he did, although a little more poorly than usual, and as he lay next to me I was laying out plans for his funeral. To say that moment was hard is an understatement, but would I change it.... no.

I was able to give my Archie exactly what he deserved. I gave him my all and dedicated my everything to him each second of his life. I made it the most joyful and beautiful life that I could and that was not going to change in his passing.

The choices that had to be made were not easy. The amount of times that I said goodbye to my baby, just in that ICU stay, were enough to rip my heart out. But, as I said in the interview, I looked at my boy and and he told me what to do. He was stubborn, just like his Mummy and he was the one that made the decisions, I was just simply along for the ride. I was his voice and that is what I continue to be. But, I will say, he needed to know that I would be ok. I made sure I told him that and I have followed through to the best of my ability 🧡

You can see the love that I have for my boy in this video. A Mother's love is all conquering and without limits and if that meant organising a beautiful "going to the rainbow party'" before Arch actually left, well that is what I was going to do....and that is exactly what I did 🌈🐞🌻