Nora's Legacy

13/05/2025

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 ❤️

03/05/2025

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 ❤️

12/04/2025

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.

11/04/2025

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 ❤️

18/03/2025

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...

28/02/2025

February 28th is Rare Disease Day. I will love you loudly, speak your name, and share your story forever and ever and ever my beautiful Queen. You were the brightest shining light this world has ever seen. You left this world far too soon, but the mark you made will live on infinitely. My heart will forever belong to someone rare. I love you so much my sweet Angel, and I miss you to infinity. I love you today, tomorrow and always ❤️

Love Mama ❤️

17/02/2025

Hi my beautiful Angel,

You have been on my mind and my heart so much lately. Not that you aren't always, just lately it seems a little bit tougher. I miss you so much my beautiful Queen. I wish I could just hold you again, even if only for a moment, I would make that moment last a lifetime. Come visit me in my dreams my love. I will be waiting for you there. I love you more than all the stars in the sky my sweet girl and I miss you to infinity! Today, tomorrow and always xoxo.

Love Mama ❤️

28/01/2025

Hi my Queen,

I know it has been so long since Mama wrote you a letter here. I am so sorry for that. I think of you and talk to you every day as you know, things have just been a little chaotic here and Mama hasn't really been up to writing much. I thought I would take a second though and write to you today.

Mama's new job is going well so far, I think making this move was a good choice for me. Getting to take care of someone again, someone who needs me and cannot care for themselves has been fulfilling. It has helped something inside of me just a little bit. I even gave your pink curtains to one of the gals I am caring for. Her room is all pink, just like yours was, she loves pink, just like you did. She didn't have any curtains though and was using a sheet to cover her window. Your curtains have just been hanging in your room, I didn't think you'd mind if we passed them on to her. It made her so happy and now every time I go in her room and see them it makes my heart smile to see them and know that you are still touching people's lives even now.

Buddy came to join you last Friday, I hope the 2 of you are taking good care of each other and both of you are enjoying blue skies and sunshine being pain free now. I bet he and Minikin were so excited to be reunited again. The other kitties have been a bit sad since ce he is gone and your sisters have struggled a little, but it has comforted them a little bit to know that all of you are together there and caring for one another.

We love you so much sweet girl and we miss you every single day! There is not a day that goes by that I am not thinking of you and carrying you with me. I will do so for the rest of my days until we meet again. I love you more than all the stars in the sky my sweet girl, and I miss you to infinity! Today, tomorrow and always. Xoxo

Love Mama ❤️

23/11/2024

Happy Birthday my dear sweet beautiful Queen. You would be 4 today had you not left this earth too soon. I miss you every single second of every single day. No words are big or strong enough to describe the way that my heart aches for you. I hope that you always know how loved you are. I hope you're dancing in the sky now my sweet girl. I love you more than all the stars in the sky and I miss you to infinity. Today, tomorrow and always. Xoxo

Love Mama ❤️

29/10/2024

My beautiful Queen,

Today was hard, 1 year and 1 month since you left us, and exactly 1 year ago today since your final celebration of life. I miss you so much my Angel. I am trying so hard to keep living this life in a way that will make you proud. I miss you every single day though. I know your are with me though, I find you in everything along the way. A red bird that flies by, a little sea turtle on a store window, a half rainbow in the sky, a little bee buzzing around my head, all of it makes me think of you. You will forever be with me ever step I take through the rest of life's journey. I just wish you were here in my arms still. I miss you so much my beautiful Angel, I miss you to infinity. I love you more than all the stars in the sky my sweet Queen. Today,tomorrow and always.

Love Mama ❤️

03/10/2024

My beautiful Queen,

Tonight is a hard night. Tonight I cannot help but wish that things could just go back to the way they were. To when the world and life just seemed right. When you were here and it was me and you side by side taking on the world. Now everything is a mess and nothing feels right anymore. I feel like the more I try to put the pieces back together, the harder it gets and the more everything just falls apart. And babygirl, I am so TIRED, like deep down in my SOUL tired, and I just want to rest. I just want to set all of the weight down and not carry it anymore and just finally rest. I miss you to infinity my beautiful Angel. I love you more than all the stars in the sky.

Love Mama ❤️

28/09/2024

Oh my beautiful Angel,

I am lying here tonight listening to your playlist and sifting through all of the amazing memories you left me as the tears roll down my cheeks and moisten my pillow. I miss you so much Queen. I can't even find the words right now, I just miss you. I can't believe that somehow it has been one year ago today that I faced my own worst nightmare turned reality. What will forever be the absolute worst day of my entire existence. The day you left this world. That day still sits crystal clear in my mind, precise down to the tiniest detail as though it were only yesterday. Yet somehow, it has been a whole year. A whole year without your smile in my world. A whole year without your laughter. It still doesn't seem real sometimes. There are still days that I wake up and for a split second, think it was all just a horrible nightmare. That you will be right where you belong in your crib in your room. Just a split second, then reality comes crashing in and I am crushed by it all over again. 365 days in a world without you just doesn't seem possible. I miss you to infinity my beautiful girl. I love you more than all the stars in the sky. Today, tomorrow and always.

Love Mama ❤️