Tag Archives: lauren loughheed

Happy 7th Birthday to our sweet Angel Lauren!

8 Jan

Warning – This is a longish post I wrote at 4:30am on Lauren’s birthday. If you found us through Lauren’s Random Act of Kindness campaign and want to skip to those details you can check out the link below.

https://lifewithlol.wordpress.com/lifewithlolrak/

Lauren with Zoe (1)

January 8th 2011 – Lauren Olivia Loughheed would be born, my beautiful, perfect daughter.

The contractions had begun on January 7th around 3pm. My mother had been visiting with me at home. With every first contraction I felt a mix of wonder and fear. So excited to meet our daughter and the fear of the unknown of what having her (i.e. childbirth) would be like.

I remember our trip to the hospital – We were driving through the snow, there was a buzz of excitement in the air – Soon I would meet her and my life would be forever changed. But not before making Stephen turn back home because I forgot my Yoga pants, which I NEEDED with me that night at the hospital and could not go without. (They of course, never left my hospital bag once we put them in there)

By 2am on January 8th (after our second attempted trip there) we were in the hospital waiting on her to make her entrance into this world.

As I settled in, for what would be another 9 hours of waiting, the day was going to become even more special. My best friend since childhood had arrived at the hospital to welcome her own princess into the world as well! My imagination, already conjuring up a beautiful life for both our girls – destined to follow in the mothers tracks and to live as the best of friends. What I didn’t know then was that those dreams, and the life I had imagined for our daughter was one that was never to be. My bliss, excitement and joy would be shattered just 10 months after this day when she would be diagnosed with a terminal disease – Krabbe Leukodystrophy. I hate Krabbe Leukodystrophy.

I sit here, the words I want to share muddled. I have too many thoughts, too much to share. I want to tell you about the incredible joy and happiness Lauren brought into my life – the beauty and inspiration. With every breath she took, I saw the world more closely. In winter I didn’t just see our cold and bleak surroundings – I saw the sun shining on the snow, the stunning glow of it. Snowflakes and frost were indescribably beautiful, the silence of winter so peaceful. She brought a warmth to the coldest days. In the summer, the world was so alive – the magnificence of the colours around us were appreciated in a way that as an adult I had forgotten. Lauren made me look and remember how beautiful our world was, I wanted her to experience it all!

Life with Lauren wasn’t perfect (although she certainly was!), I experienced and continue to experience many dark days. The memory of her illness and the pain she experienced at times still haunt me. With her removed from this world, my drive to focus on all the good and beauty has become much more difficult. Without Lauren in my arms, I am able to see the big picture of what her disease had done, how incredibly horrible it had been. Living in the moment vs then having a chance to review a collection of moments is so very different.

If you don’t know our story, I invite you to look back through our blog articles. Then read about our family and our journey with this terrible disease. As a short summary I can tell you, our daughter was born appearing HEALTHY, she hit milestones, some early even! We were gifted smiles, her sitting, her first waves, and even a couple of words. She was as perfect as can be. In her 8th to 9th month, small changes began, unnoticed or brushed off at first. For each change we would have an excuse.

Irritability – teething of course!
Her absolute resistance to eating solids – they each start on their own time
Her stiffening legs – maybe she wanted to stand!
When she wasn’t sitting as well as before – She’s tired, she’s busy growing

We were new parents, we didn’t know things weren’t right. Then again the parents around us didn’t either, not until the disease really began to show. Our daughter began regressing much more rapidly in the month of October 2011. Thinking back now with my stomach in knots, I know that I knew at the time that something was off, but I could not have ever imagined what was to come. How could I know, a fate worse than any of my nightmares was waiting.

Lauren lived to be 4 years old and 3 months. That was well after the prognosis we had originally received. In that time we vowed to give her a full and magical life. We travelled, we had her experience swimming and music and as much fun as we could find.

Through Lauren’s life we were afforded many beautiful acts of kindness from others. Sometimes we would receive acts of kindness from friends, people we had known from our own childhoods but had lost touch with or even strangers who had heard about Lauren. It was another gift that Lauren had given us. A reminder of what good still existed in the world. I truly believe that we made it through her life because of our awareness of good. Without the kindness and good around us – I’m not sure if we would have been able to come up out of the darkness that had been consuming us since the moment we knew that her life was going to be unimaginably hard.

Today Lauren would be 7 years old! Our big girl. We miss her terribly.

To celebrate, we are continuing our Random Act of Kindness Campaign in her memory. #lifewithlolRAK 

If you would like to participate, the campaign will run until the end of this month. Its easy – you do good and then share it. There is no act too small to note, and it doesn’t have to fit in any specific box or description – Just be kind!

To help spread the campaign, use the hashtag #lifewithlolRAK and post a picture or description of an act of kindness (Random or not) that you completed in Lauren’s memory. This will not only help us to honour her legacy but to spread awareness of her disease. Spreading awareness not only helps bring a spotlight on Krabbe Leukodystrophy and its need to be included in newborn screening and research but also aids newly diagnosed families, to find us and to find a supportive community.

There’s a post with printables that you can include with your act here. Please check out the link if you like.

https://lifewithlol.wordpress.com/lifewithlolrak/

Also feel free to comment here with any fun acts of kindness that you took on this month in our Lauren’s memory. Thank you so much for sharing in this journey with us, and for wanting to do good.

xox

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September is Leukodystrophy Awareness Month

10 Sep

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September is Leukodystrophy Awareness month. Leukodystrophy is a disease that affects the white matter in the brain, it helps to send signals across the brain and is essential to gross motor function.

Our daughter Lauren had Krabbe disease which is a form of Leukodystrophy, the average age of her disease is said to be 13 months. Lauren lived to be 4 years old and 3 months.

Born appearing healthy, Lauren reached healthy milestones until about 8 months of age. By 9 months it had become obvious that something was wrong when our princess couldn’t sit up well on her own anymore.

By 10 months her limbs had become stiff, her head heavy to support and the use of her left side almost gone.

By 11 Months (her first Christmas) she needed daily painkillers and had begun tube feeding by her nose. She still smiled and laughed but both were a little weaker each day.

At 12 Months Lauren had a gtube placed that would help tremendously with her feeds.

By 16 months Lauren’s vision had become poor, but would come and go for the next few months.

I still remember the overwhelming feelings, the helplessness of watching my child lose what felt like everything at the time.

Officially diagnosed with Krabbe at 11 months of age, I watched her deteriorate significantly within the next 5 months.

Once we were able to shake off a little bit of the fog and hopelessness of our situation, Stephen and I took action in making Lauren’s life as joyful as possible. Though her abilities limited her, she still experienced the world and we wanted to make our time with her count.

We lost Lauren on April 13 2015

Did you know that all of the above might have been avoidable if newborn screening had been available to us. Through newborn screening, Lauren would have been a good candidate for a stem cell transplant that could have stopped the disease in its tracks before much of the damage had been done. If only…

#WhiteMatterMatters

Check out Judson’s Legacy’s website to learn more about the #WhiteMatterMatters campaign

http://judsonslegacy.org/latest-news/white-matter-matters-campaign

Check out our interview with CBC Montreal News

10 Feb

Kate McKenna of CBC Montreal News swung by Lauren’s party on Sunday. She interviewed Stephen and I about the event – if you would like to check it out click on the link below! You will have to fast forward to minute 8:00 of the broadcast 🙂

http://www.cbc.ca/player/News/Canada/Montreal/ID/2652737423/

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In honour of Lauren’s 3rd Birthday

26 Jan

Well the BIG day is upon us – Lauren’s Birthday Party and fundraiser benefiting the MAB Mackay foundation and our family is today January 26th!

To commemorate the big event, Lauren’s auntie Marlena put together a really fun video that I would like to share. Thank you Marlena! 🙂

Click here to open the video on a mobile device

I’m up late tonight finishing off some of the last-minute details and because I’m too excited to sleep. I haven’t felt this much nervous excitement about an event since my wedding day! But I have some awesome helpers that are sure to make the day a success.

We have been working so hard along with our wonderful party planner Rania of Rouge Event Design to throw a birthday party to be remembered. Rania has taken a dream that I had and turned it into something amazing and I can’t wait to see it all play out.

If you are available you should come check us out at the Dollard-Des-Ormeaux Civic Centre Banquet hall from 11am-4pm. There will be tons of fun activities for the kids as well as some amazing raffle prizes for the adults. I really hope that you will consider joining us!

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