Soul Sisters

This is a very special post,  it involves two of the most beautiful and wonderful girls one can ever meet – Naéva and Lauren.

Naéva is beautiful, she is sweet and delicate and shares many similarities with Lauren. The two girls are so stunning and angelic that you can feel their beauty deep in your heart.

These ladies were fast to be friends from the very start, they have the same great spirit, fashion sense, gorgeous big eyes framed with the most stunning lashes and the sweetest noses and lips, they are soul mates.

Sadly they both suffer from the same horrible disease, Krabbe leukodystrophy.

In early December my mom called to tell me that she had seen a mother post on Lauren’s Facebook page whose daughter was like Lauren and that they lived nearby! With the disease being as rare as it is, we couldn’t believe that we had found another living child so close by.

Soon after Naéva’s mother and myself were exchanging messages. As fate would have it a week later we would find ourselves crossing paths at the same hospital (a complete coincidence!).

Come January we just had to have the girls meet for a proper play date. We went to visit at Naéva’s home, to say that it was an amazing experience would be an understatement. The visit was so comfortable that it was like meeting with old friends, the visit brought joy and relief to have someone to talk to about what we have been through. It also brought sadness, Naéva like Lauren is so special and I have such a heavy heart that her family has to face the same destiny.

This past Saturday we were lucky enough to have the girls meet again for Lauren’s Birthday party! (more pictures of that to follow in another post!)

We are so fortunate to know Naéva and her family and look forward to sharing many more moments with our daughters together.

You can check out Naéva’s website here: http://www.naeva.ca/

Lauren watching over her new best friend

Slumber Party! 🙂 Two princesses take an afternoon nap together

Because their toes are too cute not to share!

Group Picture! Josée, Yannick and Naéva with Lauren, Stephen and Amanda

When a thousand words just aren’t enough

A couple of days ago I wrote about how I recently discovered that Lauren likes it when I make her bounce on our bed in the morning. Not knowing what tomorrow will hold I made sure to capture the moment today. Mommy did both the bouncing and the filming so please beware that the footage is shaky. 🙂

I have to mention that a couple of months ago Lauren stopped smiling and I feared that I would never see her sweet little lips curl upwards again. She is a true fighter, and a happy little girl. A happy little girl with a dimple, something that mommy and daddy didn’t even know about until a few days ago.

Thank you Lauren for all the joy that you bring to the world

Click here to open the video on a mobile device

I’ll love you forever

I’ll like you for always,

As long as your living

my baby you’ll be.

– Robert Munsch

This morning both Lauren and I awoke in fantastic moods! We chatted in bed for a while and then started to get ready for our day. I changed Lauren’s diaper and put her in a cute new outfit that Grandma and Grandpa had given her for her birthday. I pressed on the mattress under Lauren’s bum so that she would bounce lightly up and down, she loved it and awarded me with many sweet smiles. Such a perfect way to start our morning!

I carried her downstairs to the living room and set her up in her favourite spot on the couch, right next to the window.

I quickly snuck over to the kitchen and prepared my morning coffee while thinking back to how far we have come in the past year. So many memories were made, each one an incredible gift. It reminded me of the Memory Jar that I had started last February, I neglected it for a few months when times with Lauren seemed to be getting more difficult but now more than ever feel motivated to start adding to it again.

Coffee in hand I rejoined Lauren and decided to read her a story. I picked Love You Forever, by: Robert Munsch. I really don’t know what I was thinking, this story always sends me into a furry of tears but i felt strong and thought that I could make it through without shedding a tear. Well I read the first page and sung the I love you verse to Lauren. The second and third page went by perfectly….but then the fourth page happened, I could feel a lump in my throat and tears welling up in my eyes. I decided to finish the story and read the remaining pages while sobbing uncontrollably. I looked at Lauren and wondered what she thought of mommy’s performance and BOOM a special memory hit me that i just had to share!

When Lauren was about seven months old I read her the same story for the very first time. No one had warned or prepared me for how touching and sad a story I Love You Forever is. So I began, and just like today i found myself crying loudly as I soldiered through the book. Lauren who was healthy at the time had never heard her mommy cry before. She didn’t understand sadness or crying and assumed that my sobs were laughter. Suddenly she was booming with laughter, she thought that mommy and her were having a great laugh. I can still picture the sparkle in her eyes, I remember what she wore and exactly where we were sitting. Her laugh was amazing and super contagious, she had cured me of any tears within seconds.

It’s funny because this was a memory that had gone forgotten until this morning, it’s one that I had not added to the Memory Jar.

I bet that you can guess what I will be doing as soon as I publish this post 🙂

Lauren smiling with her beautiful cousin – this was taken around the same time as the memory that I shared today

Happy 2nd Birthday Lauren!

I’m so sorry that the blog has been quiet lately, we’ve been very busy with the holidays and I promise an update soon BUT for now I have to take a moment and say….

HAPPY BIRTHDAY TO OUR PRINCESS LAUREN!!!!

Lauren is 2 years old today, this is a HUGE milestone for our little girl. When she was first diagnosed with Krabbe disease we were told that she would most likely not make it to her 2nd birthday. Today she has crushed that prognosis 🙂

Thank you to everyone who has taken the time to follow us through our Journey.

With love,

Amanda, Stephen and baby Lauren

PS – Have you checked out our facebook page yet? If not, you should, we post daily photo updates on there 🙂 http://www.facebook.com/Lifewithlol

January 8th 2011
11:45am
8lb1oz
Our baby girl Lauren Olivia Loughheed (lol) is born!

Lauren with mommy on her birthday! Check our the full head of hair

What a proud daddy!

Lauren enjoying some birthday cake on her 1st birthday!

Lauren is two years old! Her tutu and headband are a gift from BellaCoco designs, http://www.bellacocodesigns.ca