Nora's Legacy

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...

02/28/2025

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 ❤️

02/17/2025

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 ❤️

01/28/2025

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 ❤️

11/23/2024

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 ❤️

10/29/2024

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 ❤️

10/03/2024

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 ❤️

09/28/2024

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 ❤️

09/18/2024

Hi my beautiful Angel,

I thought of you so much today. I miss you and I cannot believe it has been almost a full year since you left me here and went to go be free. I wish you were still here my love. Everything has been so much harder without you. I wish I could hold you and kiss your cheeks and tell you all about life. I miss our late night "conversations" when neither of us could sleep. I am doing my best to try to keep on going and make the best of things. It is not easy though. I did meet someone who makes it just a tiny bit easier though. He makes me smile in a way that I haven't smiled in such a very long time. I wish I could introduce him to you. I bet you both would have adored one another. I know that he would have just thought the world of you. Your big sisters like him too. It's so strange how life just keeps moving forward. I am trying hard not to get stuck and to honor your memory by living a beautiful life still. We all went to the river this past Sunday and had a blast. Lil loved it, she went full feral and wanted to swim in it, so we let her. Ronnie (that's Mommy's new special friend I mentioned) and her spent a lot of time playing in the water and I took lots of pictures. It was good to see everyone just having a great time. I know you would have loved it too. I think next time we might try to go fishing and see what we catch, and of course we are talking about going camping and stuff too. I am really trying to get out and enjoy little bits of life again. I miss you big every day though. There is not a single day that goes by that I don't think of you and miss you. I hope that you can see us from wherever you are. I hope we are making you proud. Keep painting the sky in beautiful colors for me my love. Keep letting me know that you're still here with me. I miss you to infinity my beautiful Queen. I love you more than all the stars in the sky my love. Today, tomorrow and always!

Love Mama ❤️

09/13/2024

My sweet beautiful Queen,

I am struggling so much here lately. I miss you so much. I find myself in tears at the strangest times for seemingly no reason. I hate September, I will forever hate September for the rest of my life. I wish I could just sleep straight through from August 31st to October 1st, never waking and forever in my dreams where you are. I miss you so much baby. I miss you more than there are words to describe. September just sucks. I miss you to infinity my love, and I love you more than all the stars in the sky. Today, tomorrow and always.

Love Mama ❤️

09/03/2024

My dear sweet beautiful girl,

I miss you so much it hurts today. Not that it is not an ever present incurable ache within my heart and soul. But today it feels as though that wound has once again been torn open anew and all attention brought back round to the massive gaping hole inside of me in the shape of you. If only heaven had visiting hours so I could come right up and get one of your radiant smiles and spend hours enveloped with your sweet cuddles. I miss you to infinity my love, my beautiful Queen. I love you more than all the stars in the sky. Today, tomorrow and always.

Love Mama ❤️

08/25/2024

I have seen your little signs everywhere today my Queen. Everywhere I look there you are letting me know that you are still with me. I miss you more than words could ever say my sweet Angel. Thank you for showing me that you are here still. I love you more than all the stars in the sky my sweet girl and I miss you to infinity. Today, tomorrow and always.

Love Mama ❤️

08/14/2024

I missed you so damn much today my dear little Queen. This ache inside of me is nearly unbearable some days. Today was one of those days. I tried not to let it show and I'm pretty sure that I managed to hide it well so you're sisters wouldn't see me hurting, but damn, I really really really missed you today babygirl. I know you were with me though, staying close by because I saw so many dragonflies and I just knew that was your way of letting me know you're there and sending your love. It is not the same as having you in my arms though and holding you tight. I miss you to infinity my love. I long for the day that we will meet again. I love you more than all the stars in the sky my sweet beautiful Angel. Today, tomorrow and always.

Love Mama ❤️

08/09/2024

Hello my sweet Angel,

You have been on my mind so much today. I miss you deeply. I wish you were here with me my love. I miss your smile so much and the sound of your laughter. I listened to your songs the other night and it was so strange because here I was feeling comforted so much by the sound of your music that we used to listen to every single day. Each night when you would go to bed and I would play your playlist for you to sleep, I would be laying here listening to it too through your camera that we kept on to be able to hear and see you through the night. It was a comfort laying here listening to it, but also bawling my eyes out because it hurt so much knowing that you weren't in the other room listening too like you should be. This life without you is such a foreign place still. I feel like I have been picked up and deposited into a parallel universe that while it LOOKS similar to my own, it has no place for me where I fit anymore. I was not meant to be here without you and I still feel that empty out-of-placeness every moment of every single day. I love you more than all the stars in the sky my sweet Queen. Today, tomorrow and always. I miss you to infinity.

Love Mama ❤️

07/29/2024

My sweet beautiful Queen,

How has it been 10 months already? 10 months since last I held you, 10 months since I kissed you, 10 months since my world and my heart both shattered into a billion tiny pieces as I held you in my arms and said goodbye. 10 months has passed and yet I still feel as though my whole world is standing frozen in time without you here. Each day passes the same, monotonous and just empty, I go through the motions of what I know is expected of me... How I "should be". I show the whole world what it needs to see from me while simultaneously remaining frozen in that exact second when your heart stopped and the whole Universe caved in upon itself and was swallowed into nothingness. I remain here, in the nothing as time moves by... 10 months of eternity... I miss you my angel, I miss you to infinity. I love you more than all the stars in the sky my sweet Nora. I really wish wherever you are had visiting hours. I guess I will have to just see you in my dreams. Xoxo.

Love Mama ❤️

07/17/2024

I did not get to post this yesterday Cyber Family, we were having a bit of a small crisis going on here as well, however, I am asking you once again to wrap another Rhizokids Family in your love and light as they mourn the loss of their sweet girl Nisanurum. She passed away yesterday morning and again our hearts break for them. As a community we shed tears beside them and hold them in our hearts from afar. Another beautiful angel has joined her Rhizo brothers and sisters to watch over us all.

Give my girly a big hug for me please Nisanurum, and know that she will show you around and together you will both run free. We love you all. Fly high sweet Angels.

Nora's Mama