Imagine the challenges faced by families who have children living with life-limiting conditions. The emotional, physical, and financial burdens can be overwhelming.
Unfortunately not everyone has the access to the amazing care myself and my family have been fortunate enough to have. Bear Cottage is the only Palliative Children's hospice in NSW. We need more of these magical places so that all children and families are able to get the same care that my family was, while being able to make precious memories together.
This is exactly why Ryan and his beautiful wife, Karen, started Rio's Legacy, named for their little man, Rio π
Currently there are only 3 hospices / respite centres in Australia for children under the age of 18. The goal of Rio's Legacy is to bridge the gap by building Australiaβs fourth children's hospice in Western Sydney. This hospice will not only provide a safe haven for children facing serious health challenges but also offer respite and support to their families, so they can cherish every moment together.
In less than a week, Ryan starts his #aGIANTreasontorun challenge. He will be starting in Canberra on Sunday and running to Sydney, where he will finish at City2Surf on the 11th of August.
Follow Ryans journey as he helps raise money to build Australia's fourth children's hospice in Western Sydney.
Please help to make this happen ππ©΅π
Linkβ¬οΈ
https://city2surf24.grassrootz.com/giantsfoundation/rio-s-legacy?fbclid=PAZXh0bgNhZW0CMTEAAabsef-ADYqOXsPF4sCgHYLbZ46AWX_tQvMDWcav9-Vce50xHW8zkH9gimo_aem_tQCCTzBNCMKOFRYM-8TYsw
#rioslegacy #aGIANTreasontorun #fearfullyandwonderfullymade #WesternSydney #childrenshospice
Today, I had a meeting with two wonderful women from 'Palliative Care Australia' to discuss how my interests and experience can contribute to achieving the objectives of the "Shaping the Future of Paediatric Palliative Care" project.
It was such a lovely experience. To know that there are people out their trying to make changes, and even more so, taking in the stories and experiences of parents who have lived it made me completely overcome with joy.
I can't wait to see where this goes. This is such an important project, and I can't wait to see what comes out of it. I know it's alot of work and there is so much to be done, but I have so much hope that great things will come.
When asked what I would like to do to contribute to the project, of course, my reply was quite simple. "Anything and everything! Use me as you will".
I have been frustrated by the walls that have been put in my way since starting TWBR. When something is so close to your heart, when it is literally your soul, it hurts more than the usual everyday things that don't go your way. Just as I said in the meeting today, I would do anything and everything to make the changes that need to happen. So it's time to start climbing over those walls.
Mahatma Gandhi said, "Be the change you want to see in the world."
That is just what I will do...πππ»
#miscarriage #stillbirth #tfmr #babyloss #infantloss #childloss #sids #SIDS #peadiatricpalliativecare Palliative Care Australia
Another beautiful 'Rainbow Circle' yesterday π
I continue to be so taken back by the people that sit in this circle. They share so openly and the strength that they show, even though they have no other choice, is something to be in awe of. I will never get over the look on their faces when they walk in the door, compared to the look when they leave. It is so lovely to see a shine and the glimmer of hope in their eyes. That is what feeling heard and knowing that you are not alone looks like β¨
There is really something magical building. We have Mums that are coming monthly and it is so wonderful to see how they help to make the new Mums feel more comfortable in a place of uncertainty. We have many tears and so many big laughs. The room just feels like a big hug π§‘
Thankyou so much to Big Yellow Umbrella for giving us the space to make this possible. I am so very grateful to you π₯° Another big thanks to A little help from Jack for donating your amazing companions. They are invaluable and we are so lucky that you have put such a needed resource together π«Άπ½
I cannot wait to have our circle available to the Dad's out there....watch this space! And the little people in our lives will also have a place in our growing community β¨ We will be bringing the rainbows to everyone π©·
See you all next month for another beautiful Circle β¨
#therewillberainbows #miscarriage #tfmr #stillbirth #infantloss #childloss #griefsupport #westernsydney #narellannsw #camdennsw
After Arch passed away my sister bought me a beautiful hand carved stamp of his beautiful little face π₯° It adds a little touch of Archie to Birthday and Christmas cards, wrapping paper and cute little notes for the kiddies π§‘
So, I have gone ahead and started to hand carve my own stamps so that you can also add your Rainbow dwelling loves to your special little bits and pieces π
I hope you love them as much as I do π«Άπ½
Sending Rainbows....Dee πππ»
#memorialgift #handcarvedstamp #makeitspecial #therewillberainbows
If you have been following "Rainbows" from the beginning, you will know that this was not the original page π«£ If you are new to my page.....this is not the original page π
Unfortunately I had to shut my page down around 2 months ago for reasons outside of my control π€
I am now slowly going to start adding some posts from my original page onto this "new" page. I will do a little blurb at the top of the post to let you all know if it is a post from my previous page.
I put alot of work into the first year of "TWBR" and I don't want to lose it. This way I can share those posts with any new followers.
It took me 10 years to take this huge step. I only told my family and extremely close friends of the dream that I had to start this service. I was so scared to share it with the world for fears that I will hold close. Unfortunately, some of those fears have come to light. But, as Archie taught me from the second the ultrasound technician stepped out of the room to get the doctor at that 19 week scan...I don't have control over everything.
I started "There Will Be Rainbows" out of personal experiences. Creating a beautiful funeral for my Son months before he actually passed. Having beautiful experiences on the day of, and the days following, his passing. Putting together something that was all about him. Continuing to create memories as a family, even though he now lives at theπ Showing people that, even in all the grief, "There Will Be Rainbows" π§‘
Breaking the stigma and taboo around loss, grief and dying is something I have lived to do every day since the day I planned Archies funeral. It is something I will do for the rest of my life. Creating a beautiful personalised celebration, pre-planned just as we do with other life celebrations, making memories and being a support in the days prior to and following loss, building a supportive community for the lifetime ahead.
That is what "There Will Be Rainbows" is. It is my heart. It is my boys legacy π
This is Aurora βΊοΈ Aurora is Archies little cousin. She was born in 2014, 3 years after Arch went to the π
Aurora went to school camp on Monday. She called me in the morning, before she left, to tell me that Archie was coming to camp with her. She thought he would love to come because he didn't get to go to school camp π₯Ή She also knew that he would keep her safe and help her not to worry when she missed home.
Aurora was a little bit worried about the fact that Archie does like to sometimes steal things or move them π€£ She said she would tell her friends that it was him if anything was to go missing. He does usually return things, but sometimes it can take years ππ«£ I have had calls from many a family member and friend over the years asking me to please ask my son to return their stolen (or misplaced) items. I always respond with "I have no control over that child" π€£
Archie is very much part of our lives and the lives of so many people around us, some of which we have never met.
πThere is a spot at every Christmas table for him
πHe is part of the cousin KK every year
πHe gets gifts for his Birthday and Christmas
πHis stocking hangs 3rd in the row of 9 at NanNan and PopPops home, right after his oldest cousin and big brother
πHis birthday and anniversary is celebrated every year. Although some years not as big as they hit me a bit harder.
πI receive messages constantly when someone sees a π or a π§‘π (I wish the emojis would have a orange ladybeetle π)
πHe is on every card I write
Archie is a huge part of every aspect of our lives, just as my earthside children are π₯° He is loved every second of every day, just as my earthside children are.
Although I may cry when I receive calls like the one I did from Aurora on Monday morning, it doesn't mean it is all tears of sadness. Yes, I am sad because the school camp experience is another "first" that both Arch and I didn't get to have and will never get to have. A
"Legend has it that Dragonflies were given an extra set of wings so that tiny angels could fly on their backs"
A huge thanks to The Little Potion Co for creating this beautiful potion as a way to remember loved ones that now live at the π
I am so thankful to you for getting this special delivery to me in time for my Archies' 13th Birthday party back in February. His cousins were so excited to receive their potion pouchesβ¨
It is also a little extra special as the Dragonfly is the adopted symbol of PCH, the condition that Archie was diagnosed with. The dragonfly is the adopted symbol of recognition due to the likeness found within MRI imaging.
"Wings of a Dragonfly" was created in memory of a precious little girl taken far too early. What a beautiful way to honour beautiful Isabelle ππβ¨
#memoriesforlife #Dragonfly #stillbirth #miscarriage #tfmr #babyloss #infantloss #childloss #pchwarriors #loveliveson #griefjourney #siblingloss #therewillberainbows #funeralplanner #funeralorganiser #beprepared
Time.......It is a constant complaint for us adults. It is also something that is a daily annoyance for many kiddies. From very young we are counting down time, or we are counting how much time we have until a certain something. At the moment, there is a countdown to Christmas, a countdown to holidays, a countdown to the new year. We are controlled by time, and it never stops.
When a loved one passes, all you want is that extra time. You want time to stop. You plead with time to give you more time. Unfortunately, there is no way to stop the inevitable, but there are ways to give you more time.
It was such a gift to be able to spend so much time with Archie after he passed. We were able to be with him for the three days after he passed, just hanging out and spending quality time. I have been lucky enough to have a CuddleCot sponsored by Earthing Solutions Pty Ltd, Archies NanNan and PopPop, my amazing Mum and Dad. The CuddleCot enables parents to be able to spend that much needed time with their baby, until they are ready to let them go. This time allows the loved ones to do things such as bathing, dressing, cuddles, spending family time at home, reading books, drawing pictures.......anything you need to do to make those last moments together ones to remember. The cuddlecot allows for time to be slowed down and the grieving process to be eased into a little more gently.
The gift of time had such a special and important impact on our lives when it came to our grieving process. I am so grateful that I am able to give this gift to others πππ»
#cuddlecot #giftoftime #stillbirth #tmfr #miscarriage #infantloss #childloss #griefjourney #bereavedparents #makingmemories #memoriesforlife
'Rainbow Circle' is a free local community event that is hosted by me, Nadine from 'There Will Be Rainbows'. It brings together other Mothers in the community that have experienced the loss of a baby or child. We welcome anyone that has lost at any stage of their pregnancy, be it miscarriage, stillbirth, infant or child loss. 'Rainbow Circle' has been created as a safe space for all Mothers to come together in a space filled with love and support.
There are no words to express the beautiful feeling that flows through the room at our 'Rainbow Circle'. Mothers sitting in loss, surrounded and held with so much love. We sit and listen with open hearts. Honest and valuable advice is shared and received with warmth and gratitude.
Little pieces of our precious children and their stories are shared with other Mothers who fully understand our feelings. No judgement, just peace, silence and an unconditional love and appreciation for what others in the room have been through. Have been through, are going through and will forever be in the midst of.....a grief that no-one can understand unless you have stepped into those shoes and walked the life-long path of miscarriage, stillbirth, baby-loss and child-loss.
We share things about our lives that we thought were our own, only to learn that it was the norm for a loss parent. Things that hadn't necessarily sat comfortably with us, but we were finally able to find comfort in, knowing that we were not alone in our feelings and thoughts. Not alone in the way we react to situations and the way we deal with our grief and trauma.
There is so much comfort in knowing you are not alone. Knowing that there are others out there that feel like you do. It is OK to not be OK. And for parents that have to live a lifetime with a portion of their heart missing, not being OK does last a lifetime.
To sit in the presence of the women in that circle is a experience that will be with me forever. To sit in their presence will be something I will be