Nora's Legacy

10/02/2025

October is dwarfism awareness month and as you all know, I will always speak out for dwarfism. My beautiful Queen, my Nora, was born with one of the rarest and fatalistic forms of dwarfism. Rhizomelic chondrodysplasia Punctata type 1. With less than 100 known cases world wide, RCDP is something that most doctors know nothing about nor any clue how to treat the children with it. Most of these kiddos do not survive the neonatal period, and fewer still live to see adulthood. I was blessed with almost 3 beautiful years with my sweet girl. Everything she faced in this life she did so with a smile and a giggle. Despite all the challenges she faced she was happy and she made this world a brighter place and throughout her whole journey she changed every life she touched for the better. She brought awareness to thousands upon thousands across the world of who she was and the battle she fought with this rare form of dwarfism. Even now, she continues to do so through her memory and the impact she made on the world in her short time here. I ask you all, in honor of her, and her fellow RhizoKids and dwarfism awareness month, please take a moment to go read and learn about RCDP and the amazing group of tiny humans that it affects. Share her story and theirs and help us to bring awareness and as always is my hope maybe it will lead to a cure. In honor of Nora please share and if possible go to RhizoKids.com, read, learn, make a donation in her name. Help us to carry on her fight.

09/29/2025

My beautiful Queen,

Today marks 2 years since we said goodbye to you and you gained your wings and left this earth behind. 2 years that have felt like both an eternity and yet barely the blink of an eye all at the same time. Tonight we honored you and your memory with Grandma and Grandpa and your auntie Hayden and your cousin. We lit candles and oil lamps, played music and lit the fire pit and we all wrote you letters and burned them to carry our words to you on the smoke. I hope that all our love and words reached you and you know that you are still so very loved here on earth. 2 years without you is 2 years too long and yet the rest of my life remains to miss you. My heart still aches for you just the same as it did the day yours stopped beating. I love more than all the stars in the sky my beautiful Queen, and I miss you to infinity. Today tomorrow and always until we meet again. Xoxo

Love Mama ❤️

09/26/2025

My Queen, thank you so much for reminding me every day this week that you are with me. Every time I have stepped out side and looked up, there just so happens to be a big beautiful Monarch Butterfly 🦋 flying right over my head. I know it is you saying hello and showing me that you are still here. And what a beautiful and very fitting representation it is, you are the Queen after all, and forever will be. I love you more than all the stars in the sky my beautiful angel, and I miss you to infinity. Keep saving my spot for me and I will see you when I get there.

Love Mama ❤️

09/22/2025

My Beautiful Queen,

This week is a hard week. A sad week, as we draw closer and closer to that dreaded day, the 2 year anniversary of the absolute worst day of my life. The day my world stopped spinning and my heart shattered and my soul tore in 2. The closer it gets the heavier I feel, the more I miss you and the more the tears threaten to break the dams I have so carefully constructed to hide the grief behind. Please babygirl, wrap your wings around me and give me strength. I am gonna need it. I love more than all the stars in the sky sweet girl and I miss you to infinity. Today tomorrow and always.

Love Mama ❤️

Music video by Dani and Lizzy performing Dancing in the Sky. (C) 2016 604 Records Inc.http://vevo.ly/L2hRJK

09/16/2025

I miss you so much Queen. Every single day, every minute, I miss you. Xoxo

Love Mama ❤️

08/16/2025

Hello my Queen,

I miss you more than ever tonight. I am lying here wide awake just as I have found myself doing so many nights since you left us. I lie here in the quiet darkness and in this space, there is always you. The memories flood back and I lay here replaying them as each one leaks silently from my eyes and onto my pillow. This is not how I envisioned our life together, but still I am grateful for this time, for these memories, for where there is now great sadness there is also still the greatest love I will ever know in this life. That love remains now and forever. They say that grief is just an over abundance of love with nowhere left to go and I definitely feel that, all this love for you remains, here in my heart and in these quiet hours I sit with it and with your memory and I look forward to when I finally get to be with you again. I love you more than all the stars in the sky my beautiful angel and I miss you too infinity and beyond. Today, tomorrow and always.

Love Mama ❤️

07/24/2025

Hi there My Queen,

I am so sorry it has been so long since Mama wrote you a letter. Things have been a bit chaotic for your sisters and I. We left Indiana and moved back to Kansas to be back where most of our family is. It has been a rough move though. Leaving the house we bought for you was SO HARD to do. Starting over has been such a difficult time. We are in a much smaller space now and just trying to get everything back on track. To be honest some days it feels like such a huge failure on my part. I couldn't keep it all together and hang onto our home, but I managed to keep us all together, so I guess that's what matters. Mommy is waiting to start my new job and hopefully that will help, but it still is so hard to think that I would rather still be at home taking care of you and your sisters. Being your Mama will forever be the best job I ever had. I know I'll get it all back together eventually, but right now that all seems like such a long shot. I wish I could just go back to the good times, with you here with me, getting to be home with you and just be your Mama. It still feels so wrong being here without you. I miss you more and more every day. I will never be the same without you here. I love you more than all the stars in the sky my sweet beautiful angel and I miss you to infinity. Keep sending me signs that let me know you are with me sweet girl. I see them all the time and they keep me going. I love you forever. Today, tomorrow and always.

Love Mama ❤️

05/13/2025

Hey there my Queen,

You are on my mind so much tonight. As I sit here looking at the house that was supposed to be our forever home, the one we bought for you, it all looks so bare. All of the work I put into making this our home. It's all just gone, packed away into boxes...

Part of me is happy that we will be going back to be close to everyone we miss so much, but then at the same time my heart hurts so bad, this is the house where we were supposed to raise you and your sisters until you all were grown. This was supposed to be the last move we made for a very long time. None of what has happened was supposed to be this way. You were supposed to be here and this was supposed to be our home. Now it's all just going to be gone. You, the home I bought for you, the love that I have poured into it all to make it a home, it feels like it is all just being wiped away.
I have moved a lot in my life. But I gotta say this one hurts the most. Never have I felt so torn over a move before. This one is hard. I know that it is what I need to do for your sisters and I to be able to do better and not struggle so hard to get by, but my heart has such an attachment to this place, the last place that I had YOU...

I will be finding a way to take your Peonies with me from the garden, and you garden butterfly too, but those seem like such small things in the big picture. I just wish things could have been the way they were supposed to be. The way we planned them. Nothing is right anymore, and nothing feels OK. I wish you were still here my sweet beautiful Queen. I wish I could go back to when everything was right and I had you.

I love you so much my angel. I love you more than all the stars in the sky and I miss you to infinity. Wrap your wings around me extra tight tonight please, I need you.

Love Mama ❤️

05/03/2025

Hi there My beautiful Queen,

I just wanted to stop in and tell you how much I love you. Missing you feels extra hard tonight. We have had to do some work in your room, gathering some of your things to share with your RhizoKids brothers and sisters to help them out and while I am so happy to be able to pass on those things to help the other babies, it's still a very difficult thing to do. I know that this missing you, will never end and that's ok because I don't ever want to not miss you. Days like today are still just extra hard. There is always going to be a gaping hole in my chest where my heart used to be. I'm doing my best though to make the most of this life. I wish you were here to share it with me still though. I miss your smile and your laughter. My days with you were just so much brighter. You were my purpose in life. I hope that somehow, you can still see me and that you are proud of me for pushing on, even though it is so damn hard. There is not a day goes by that I don't think of you and miss you deeply my sweet girl. We are all just doing our best here and I am awaiting the day when I get to be reunited with you. I love you more than all the stars in the sky my sweet beautiful angel, and I miss you to infinity.

Love Mama ❤️

04/12/2025

Dearest Cyber Family and friends, I have a couple of heavy hearted requests for you today. I woke this morning to some pretty crappy news all across the board.

The world lost another beautiful soul this morning as Nora's Rhizo sister Claire gained her wings and went to join her this morning after a battle with HMPV. Please hold Claire's Mom Katie Peterson and the rest of her family in love and light as they navigate this grief filled time. My heart is breaking for them. Fly high sweet Claire. Hug my Queen for me and be free of pain together.

I also learned this morning that one of my closest and dearest friends Katelynn Destiny Benefiel-VanArsdale has been diagnosed with Leukemia yesterday and has been admitted to the hospital here in Indianapolis. Katelynn is one of the sweetest, kindest spuld I have ever met and been blessed to call my friend. Please hold her and her Mom's and the rest of the family in love and light as they set forth on this very scary leg of her journey through life

Please lift both of these families who are so dear to our hearts in loving and healing energy and prayer. Thank you all.

04/11/2025

Hi there My Queen,

I just wanted to come here and tell you how much I am missing you lately. Everything feels so chaotic and just wrong sometimes now that you aren't here with me, and lately I have been feeling it extra. So often I find myself wishing I could just go back in time and stay there with you when everything felt right. I knew who I was and what my purpose in this life was without any doubt. I felt joy in every single day that I was with you. I find joy extremely difficult to find these days. It is all tainted with a bit of sadness and anger now. I know that is not how you would want me to live and I am trying so damn hard to not feel that way but some days it is just so much harder than others, and on those days I feel even more like I am letting you down. Like I am failing to properly honor your memory. You faced everything you went through in this life with a smile. I feel I should be able to do the same, but it is so so hard. I wish you were still here with me. With you I smiled every day, how could I not when I was surrounded by your radiant light. You will forever be my light sweet girl. I hope you know that. And I hope you can see just how hard I am trying to make you proud and keep on going. I love you more than all the stars in the sky my sweet beautiful Queen, and I miss you to infinity. Today, tomorrow and always.

Love Mama ❤️

03/18/2025

My sweet beautiful Queen,Tonight has been an extremely emotional night for this mama. I cried my eyes out reading this update from MedLife Discoveries today. They finished their phase one trials and the results of that were spectacular. Now it seems they are getting ready to move into phase 2, which means the long awaited administration of this breakthrough medicine to the RCDP kiddos. On one hand I am SO very happy! Absolutely overjoyed really. I cannot wait to see what amazing things are on the horizon for all of your RhizoKids brothers and sisters! All of the good that this will bring and the things that will get better, how THEY will get better! That being said, grief is a terrible and ugly thing sometimes, and a part of me cannot help but also feel so ANGRY because well, we missed it by a year and a half. This breakthrough is a year and 6 months too late to save YOU sweet girl, and while I know that I should not be, I cannot help but feel just the slightest tinge of bitterness at that. While I know that it is silly, I feel so CHEATED out of what could/should have been. It is an odd feeling to experience both, such pure and joy and excitement for all of the families that we have been so blessed to come to know and love and what this means for them; while simultaneously experiencing such a deep and burning rage mourning the fact that we did not get that same chance for you. Needless to say, I am a snotty, blubbering mess tonight as I lay here processing it all. I have cried so many tears this evening I no longer know which are those of joy and which are anger as they all stain my cheeks and pillow just the same. And, as always, overshadowing it all is the ever present constant ache within my soul of missing you that has become the core of my existence since you left me here without you. There's nothing in this world that I wouldn't give just to have you back in my arms once more my Queen. I love you more than all of the stars in the sky sweet girl and as always I miss you to infinity and beyond. Today, tomorrow and always.

Love Mama ❤️

RCDP is a rare pediatric disorder caused by mutations in one of the genes in the plasmalogen biosynthetic pathway, resulting in low plasmalogen levels. The plasmalogen deficiency leads to several clinical manifestations causing profound physical and cognitive deficiencies and a significantly reduced...