Nora's EIEE

08/12/2023

Its been 2 years since we had to let Nora go. She did so well, gave us much more than we hoped for.

We wish she was here with us. She can't, she is needed elsewhere 🥺💔
but on Wednesday, it was Finland's independence day and Noras light was shining, along with 40 other lost warriors' lights, in a brooch on top of Alexandra's (the Founder of an organisation that makes dreams come true for severely sick children and their families) heart. while she walked to greet our president Niinistö in the Independence Day reception in the president's castle in Helsinki.

I am very grateful for her work and that she honoured the memory of our children on a very special occasion ⭐️♥️⭐️

Nora Valo Aurora 22.11.2015-25.11.2021

Itsenäisyyspäivänä halusin kunnoittaa edesmenneiden lasten muistoja ja kantaa heitä mukanani Tasavallan presidentin vastaanotolle. Yksi tyttärensä hiljattain menettänyt äiti ehdotti, että voisivatko edesmenneet tuikkia tähtinä asussani. Surussa hänelle toi lohtua ajatus siitä, että oma lapsi on yhä läsnä tähtenä taivaalla.

Mert Otsamon keksi koskettavan idean suunnitella pukuuni sydämen kohdalle kallankukka. Siihen on kiinnitetty yksi kristalli jokaista lasta kohden. Marraskuussa kun puvuvn suunnittelutyöt alkoivat, kristalleja oli 38. Kuukauden aikana kristalleja tuli kolme lisää. Olen saanut etuoikeuden kulkea näiden lasten ja heidän perheidensä rinnalla toteuttaen heidän unelmiaan. Puvussani olevat 41 kristallia kunnioittavat näiden Supersankareiden muistoja sekä heidän merkityksellistä elämää. ❤️

Haluan sydämestäni kiittää jokaista perhettä ja heiltä saadut viestit ovat koskettaneet syvältä. ♥️ Kiitos kuuluu myös teille kaikille, jotka olette mukana we4you:n toiminnassa ja mahdollistatte vakasti ja parantumattomasti sairaiden lasten unelmia toteuttamisen. Yhdessä saamme unelmat käymään toteen. 💫💛

Kuva Mikko Huisko / Iltalehti

11/12/2022

A year ago today, we said our final goodbyes to Nora 💔 even though it was one of the saddest & most difficult day in our lives, it was also warm & beautiful. Family & friends took part in our grief and helped us through the day ❤️

Rest in peace little princess, we love you ❤️💜🖤

25/11/2022

"I pray you'll be my eyes
And watch her where she goes
And help her to be wise
Help me to let go

Every mother's prayer
Every child knows
Lead her to a place
Guide her with your grace
To a place where she'll be safe

I pray she finds your light
And holds it in her heart
As darkness falls each night
Remind her where you are"

Nora Valo Aurora 22.11.2015-25.11.2021

Today we light candles for our warrior princess🕯
Please send a prayer or a wish for our little girl that she is safe and in peace 🙏❤️🕯

A Mother's Prayer:

Celine Dion - A Mother's Prayer Lyrics

22/11/2022

If I think how Nora is in heaven;
She is happy and kind, has no more earthly limits. No more pain. She looks like a princess with wings. She is dancing around like a ballerina. Just being herself, she makes the heaven a better place ❤️

Today is Noras birthday!
7 years ago she made us parents. One of the happiest days in our lives ❤️🥰 The night before she was born, snowed so much, more than normally in Vaasa at this time of the year. I said the snow brought Nora to us ❄️ same happened the night before Nora passed away; snow came to take her back to heaven.
Every time it snows I feel Nora near me ❤️

"She was wearing her pinkest ballerina tutu,
a seven-year-old phase.
The vanity mirror showed her sparkly smile and her happy gaze.
Her dancing feet were tapping up dust in a tiny little dusty haze.
You are so gorgeous! Your costume is exquisite your face ablaze!
The happy ballerina had not known many happier or joyful days"

❤️⭐️Happy birthday Nora⭐️❤️
We love and miss you so much 🥰

06/10/2022

Today we remember those living in a demanding, stressful and really valuable time of their life:
A day for palliative and end of life -care.

We lived 1842 days knowing we gonna loose the fight in the end. Nora fought so hard; she gave us time to collect valuable memories with her, more than anyone dared to wait for.

We are so grateful of every day with her.

But at the sametime, living in that kind stressful and devastating time; it breaks you from the inside, drains out all the energy and makes you physically weak.

You are not hoping anymore for a cure, you are just hoping for one more moment, one more hug.

You are so grateful for all help you get, that you become tired of being grateful. You just want to shout: "I don't want to NEED your help, I don't want to be so tired that I can't take care of my child by myself" But you don't shout, you just continue being grateful.

You don't sleep, you just wait partly holding your breath. You have no time to sit down and read a book. You are tired to stay in the hospital. Tired of evaluating if you need to go to hospital or can you manage at home.

Because of the infection risk, you can't see your family and friends as much as you want and need to.

But you are so afraid to wish that you won't need anymore help. You are afraid to wish to be able to sleep or read a book. You are afraid to wish to be able to see your friends freely or plan traveling. You are afraid there will be no more need to open the door to the pediatric ward.

You know that day will come. That day you have no rush, no demands, no need for help, no need to stay home, no need to be in the hospital, no hope, no medications, no palliative care.
That day you have just time, pain and sorrow.

The Only thing you have left is love and hope. You hope that your child knows how much she means to you, how much you love and miss her. You hope that whereever she is, she is happy and safe. You hope that one day you will be with her again 🙏⭐️❤️

23/09/2022

Kuolleiden lasten muistopäivä 23.9. ⭐️🕯❤️

Memorial day for all the children who have passed away ⭐️🕯❤️

We went with Nea to listen church bells that were rang to honour the children who have passed away, then we went to lit a candle to Noras grave. I put a candle inside and outside at home.
Nea said she wants to sing for Nora, because she loves Nora..

We miss you Nora 🥺💔

14/08/2022

6 years ago today 14th August we saw Nora's last smile 💔 that evening she got the seizure that took us to PICU for 2 months, she was sedated in a ventilator most of that time and lost all her "skills" and her smile 🥺

Today marks the day we got pulled out from our happy "baby-bubble" to the life of constant fear, sorrow, many fights but also to the life of love, happiness and proudness of our Nora. 3 months after the first status epilepticus, we got to know that we won't win this battle. But she won many fights, lived her life in her way and taught us so many things. They told us we might get only or two days with her, but we got so many more; 6 years and 3 days ❤️❤️

Tomorrow she was supposed to start first grade in the primary school. Instead of packing her tiny backpack and checking her clothes, I have been on her grave talking to her and watering the flowers 💐❤️ now she is an angel watching over all first graders.

Every day we are learning how to live without her, every day we are grateful that she was given to us. Every day we love and miss her more and more ⭐️❤️

25/05/2022

When Nora was born, I felt something was wrong, I had a feeling my little baby needed help. Everything seemed okay and I couldn't say what made me feel that way. Midwifes and doctors assured me everything was normal, we should just go home and enjoy the baby time 👩‍🍼
25th of November 2015 (three days later) a pediatric doctor, specialised to neonates was asked to check Nora, before we got to go home, so that I would relax. She examined Nora, said she knew what I mean, she got also a feeling something was not right with the baby. She ran some tests and told us that our 3 days old baby-girl might have an encephalitis (infection in the brain) and the following 24 hours would show if she survives.
She didn't just survive 24 hours, she survived 6 years and 72 hours ❤️

It's now 6 months (or 182 days or 4352 hours) since Nora took her last breath ❤️💔 She fought so hard, but in the end she had to give up. Somedays I wonder if it was worth all the fight, or would it be better if she passed away when she was three days old 🥺😭 but then I remember all the good days she got, she had more good than challenging days ❤️ she also had a purpose in her life; she brought light in our life. She taught us patience, love and hope. Her eyes catched attention and she calmed down the busy world around her. Her aura was, and still is, bright and calm ❤️⭐️

I feel blessed that I got to know her, I got to love her and keep her for 6 years and 3 days. I am proud that she is my daughter🥰
♥️ we love you Nora ❤️

"In the end; it does really matter" ❤️

https://youtu.be/WNeLUngb-Xg

06/05/2022

Yesterday we finally got the gravestone for Nora ❤️💔
Behind the small window we will put candles 🕯 The handprint is Nora's own, from the day she became an angel, the print will fade away when the weather is humid and be more visible in dry weather, it's a touch of our beloved angel ❤️
Now we will put more soil in front the stone and plant some colourful flowers 💐

25/03/2022

Now you can find the way to Nora's final resting place ❤️

Rest in peace our little girl, we miss you so much 💔

21/03/2022

Not sure if I should laugh or cry; so I did a bit of both 😭😂😭😂😭😂

This letter, that came today, summarises the lost hopes and dreams, on so many level 🥺💔

“It’s a letter saying Nora has to start attending school”

25/02/2022

3 months ago we lost our Nora 🥺💔⭐️

Today I am a mother for a 6 years old girl, but I am not waiting for a message from the city to know in which school she will start after the summer, I am waiting for a message which tells me the coordinates to my child's eternal resting place, to her grave.

I am not writing notes, when did my child learn to read or make a cartwheel. I am filling in a book; the first year without you. A book that helps me to survive without my child.

I am not looking for new furniture to my girl's room. I am looking for a gravestone for her. Walking around the graveyard to find ideas, using an application to design one for Nora. Trying to decide what kind of a stone will be worth to represent the beautiful soul my daughter has and the short time she was here with us.

I am not getting to know moms & dads, so I can safely trust my child to go and play at their homes with their children. I am getting to know moms and dads who have also lost a child, who also know that sorrow is not just a feeling; it is so much more.

I am not telling Nora's sister that she can't mess up Nora's playing or go to Nora's room. I am reading to her stories about losing someone you love so much. We also play a card game that teaches feelings that even most adults can't handle. Nea is not even 4, and she already knows that "Nora is dead" are not just new words that she has learned and can repeat. Those words are so huge, deep, and sad that it takes a long time for any of us to really understand them. To most people, it's enough to know how to say them, just words. To us those words: "Nora is dead" are bigger than the life itself.

Even our lives changed a lot 3 months ago. One thing has not changed and never will: we love Nora, miss her and are proud of her ❤
❤

25/01/2022

I am so sorry Nora 😔
as your mom I was supposed to keep you safe, keep you always near me. I failed.
U know that I did my best, but it was not enough, I blinked my eyes and you were gone. If love could have saved you, you would have lived forever. Now you are gone, and we miss you so much.
Our hearts are broken 💔
They say you are in a better place. I don't think so. Best place for you is home with us, on the couch in mom's arms, staring deep in my eyes and moving your lips like you're trying to say something.
Home, with mom, dad & Nea, is the best place for you. Nothing is better 🥺
But I know you have it good now. No more epilepsy, no more suctioning, no more weak muscles, no more getting sick; you can smile, play and run freely ❤
We love and miss you forever 🌈⭐️

25/12/2021

Missing our little girl 🥺😭 This is such a beautiful song 💔❤💜

"Angels are calling
Heaven is crying
Crying tears of blood 'cause it was not your time
Angels are calling
Hard rain is falling
Covering my tears and my pain"

Beautiful, melancholic ballad by Amazing Ari Koivunen. His voice is so unique ♥ I hope you enjoy. Images: Google Images~All rights belong to their rightful...

23/12/2021

4 weeks ago we lost something so important and great, that we still don't quite understand it. We lost our daughter and Nea lost her sister 🥺💔 our family will always be broken

Nora was a true warrior princess 👸
She won so many battles during her 6 years of life that we lost the count. But she didn't live in pain, between the battles she enjoyed the life. She spread calm and positive energy around her.
She is our light, the brightest star in the sky.

Last autumn we were racing against time, death was running after Nora. But again, she didn't give up. She knew that mom wouldn't survive if she had died from pneumonia, cuz at the same time mom was also having pneumonia and too weak to be in the hospital with her. Nora knew mom and dad wouldn't survive if she died in our arms when she got the anaphylatic reaction.
She didn't give up to any infection, even all doctors said that infection will take her from us in the end. But No, She beat all infections, even the last one with the anaphylaxis...

She left this world as we had wished, at home; the disease, caused by the EIEE-35, progressed to the deepest part of her brain, where the breathing center is, and her brain just shut down. No more oxygen needed. No more bloodflow needed. Her body didn't have any panic due lack of oxygen in the brain. She just slipped away from this world quietly. She looked peaceful. In her mom's arms her heart stopped beating. Tears of mom & dad, the sweet loving kisses from her sister sent Nora to a better place.

"She danced with the angels, danced a small dance.
Left after her show, just like the flame of the fire.
She danced with the angels just one waltz
But I know I never can see anything more beautiful.
I know I never can forget her"
(By Yö: Hän tanssi kanssa enkeleiden)
Our Nora Valo Aurora ❤👼👸

12/12/2021

💜💔🖤

02/12/2021

Today we dressed Nora and put her into her eternal bed, where she can safely rest with her bunny, picture of us with her, letters from the family, guardian angel and a dream catcher ❤

Then we took her to the chapel from the hospital to wait for the funeral. On the way we stopped at the church and listened to the bells
🔔 🔔 🔔 🔔🔔🔔

They were to honour Nora and her life ❤💜

"I pray you will be my eyes, and watch her where she goes.

Lead her to a place,
Guide her with your grace,
To a place where she will be safe"

Celine Dion - A Mother's Prayer Lyrics