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For the happiest girl in the world

  • Missing you

      21 April 2020
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    It was this time last month we told our baby girl that she could go if she wanted to, I've replayed our last moments with her over and over - sometimes feeling regretful and sometimes feeling relieved. I knew she always had a plan and we just had to go with it. When she left she broke our hearts and took irreplaceable pieces of them with her. Throughout this month we've just spent time trying to put them back together again little by little. We grieve for her, for the past we had, the present we have and the future we never got. We know that there will always be those pieces missing from the day she left, but when we think of her those pieces are there and our hearts are full again even if just for that moment. Missing her really is the hardest but loving her is still just as easy. She taught me so much.. Lessons unconditional and unexplainable. She showed me my own capabilities of being a mama, gave me a strength I've never known to accept life and all it's bounds and above all just to be happy. I am forever grateful for my baby girl and all that she is to us, god knows we miss her every second of every day ❤

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  • Peace

      1 April 2020
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    I've tried to write this out a few times now but I feel like I still can't get all my words together.

    Grief has been hitting us like waves this last week, sadness coming and going. Even though we've already been living through this grief for over a year nothing could prepare us for missing our baby this much.

    Trying to cope with our new normal and having the whole nation on lock down couldn't have come at a worser time, it limits all of our whanau support massively, not only for ourselves but them too - trying to awhi eachother through the phone has been difficult. But in a way I think Ryan may have wanted it like this as a time for us all to grieve and be okay with ourselves before heading back out into the world without her. Reminding us to be appreciative of all things and that with each day it will get a little easier even when it doesn't look like it..

    The hard days are good days, and we embrace them even though they're really tough and full of tears. Memories flow through us all day everyday and open up emotions happy, angry and sad. I try to hold onto them all.

    Trying to remember that there are positives throughout all of this and know our baby is at peace - it's a battle for me sometimes. But when I look at my Grey I see her there. Ryan's smile and all her happiness is all there in her sister and I am thankful and know that she is truly a blessing to us. A gift from her sister, our Te Rangimarie. She see's all our mamae and puts it at ease, reminding us that she's there to pull the hand brake when it feels like it's all too hard to deal with. A strong little girl just like her sister. Our hearts will always hurt for her as I know she misses her just as much as we do. And these memories will fade for her, but we will always remind her of her big sister and how much she loves us all.

    Thank you to everyone for everything over these last few weeks. Ryan touched alot of hearts in her short time with us, she created alot of love just by being here and I'm glad we got to share her with you all ❤👼

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  • One year

      24 February 2020
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    Hey whanau, just another update on our baby Ryan - keeping to the monthly reports 🤚

    She is doing so great still, even despite her picking up a cold and a UTI recently - her recovery process at home has been good without her needing any extra care or overnight stays in hospital (touch wood) 😊

    Today she had first physio session with a standing frame, we weren't sure how she would tolerate it because the whole restraining thing just ANNOYS her but she actually loved it 👏 (in small doses lol). The equipment we've been given is really just to trial at the moment to see how she goes, we're hoping with good routine and all the weight bearing she'll begin to start doing more things on her own without all the extra supports - like WALKING 😱🙏

    Her eating and drinking has been consistently going at a normal rate for the last few months now that we no longer need to be under the care of our dietary team which means we can safely say R.I.P to the NG tube 🙌 Her appetite has increased like crazy too and she will literally eat anything she can now 🤪🍎😋

    She has also been referred to the palliative care team who are supporting us in making everything we do with her as comfortable as possible. They've even organized free trips to the zoo and butterfly creek for our whanau to take Ryan 😁

    But with all good things being said we unfortunately got the results of her blood tests back a couple weeks ago stating that there has been no significant change since starting the new treatment. Our rheumatology team has suggested an increase to twice the original dose might show some effect so we're giving that go and hopefully we'll see a change in her bloods next month 🤞

    This month actually marks a whole year since Ryan had her first stroke and I wouldn't be honest with myself if I didn't say that this journey with and for our girl has been unfair, disheartening and depressing at times. We've had moments of weakness and frustration where sometimes it's because we're just tired of being strong all the time.. And that's okay but those moments pass and we quickly remember our strength, where we are now, where we have been and where we need to be with all the love behind us for her ❤

    So nga mihi again, thank you all for loving our baby and us! Supporting us and walking this journey together with her 👣🥰

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  • Hopeful

      22 January 2020
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    Hey guys, just another update and thank you for all of the support and koha we've recieved. We are still so thankful for all of the hearts behind our daughter, it's crazy. We've been very lucky through the xmas/new year period and have had no emergency visits to the hospital with Ryan so far. She has been the best we have ever seen her! 🤩

    She has had a great start to the new year and has started trialing her final treatment, Ruxolitonib. It is still early days which makes it difficult to determine if it's making any significant changes in her but we should see some results from her blood tests in a couple weeks, and if all is still looking good we will finally start weaning her steroids again 🤞

    With her doing so well at the moment we have been able to do ALOT more with her, we've been able to spend more time with all of our whanau and friends, we've been able to take her away on holiday, birthday parties, beaches, SWIMMING! And we've even been lucky enough to take a night off for ourselves 🙌 Things that we wouldnt have been able to do just a few months ago.

    This all has made it more easier to look back on the last year and reflect on how far our girl has come, what crappy things she's been through and what AMAZING things she can do 🙏 With that being said we look forward to the new year with hope and will continue taking every day by day and doing our best with our babies ❤

    **Just a side note I figured I'd start updating Ryan's givealittle page once a month or whenever neccessary - just to keep all of our whanau in the loop 👌

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  • Appreciated

      13 December 2019
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    Hey everyone, just wanted to say thank you again for sharing our baby's story 🥰 My whanau and I are overwhelmed by all the koha and tautoko we've received this past week. It's amazing to see how many people have taken the time out to read this and share it around and also relieving to know everyone has a better understanding of what's going on with our Ryan too.

    Since I posted this Ryan's been in and out of Starship ED with a couple viruses and a random rash. She's doing really well though and managing at home 👍 Doctors aren't sure what the rash is so once it clears she'll be able to start trialing her final treatment. Her CT results have come back and confirmed that she will be fit for surgery in the new year and we've been given a month or so to make a decision on that. We know it wont be an easy one, and so far on this journey with Ryan this will be the hardest obstacle we've come across but I know we'll always do our best to choose the right path for her.

    With everything being so up and down this year the continuous support from everyone has been widely appreciated, especially all the awhi from our whanau walking along side with us. Thank you all for supporting us and loving our Ryan 🙏❤

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  • Thankful

      5 December 2019

    Thank you all for sharing Ryan's story, she has alot of love behind her and we are so grateful ❤ Today she will be going into Starship for another CT to determine whether or not she will be eligible for surgery - a decision that is still undecided for us. But our hearts are full this morning and I just wanted to say thanks 🥰

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