2018 has been one full of many happy memories and also many challenges. Unfortunately this year I just couldn’t muster the energy to write a new blog post so I’m re-posting last years. If you hadn’t read it then, I hope that you will.
This year my girl would have been 8 years old on January 8th! What a fun birthday that would have been. We will still celebrate her birthday and memory as a family. That includes the fun #lifewithlolRAK campaign!
Please consider taking part this month! If you’re looking for an extra challenge this year, please consider doing 8 Random acts of Kindness in memory of what would have been her 8th year! Don’t forget to use the print outs or hashtag on social media, also make sure your posts are public so that your efforts can be shared and encourage others to spread kindness as well!
Pictures are always fun to share BUT I know sometimes its hard or sensitive to photograph a Random Act of kindness, just sharing a description of the act along with the hashtag in these cases are also appreciated!
Print outs and details can be found here
https://lifewithlol.wordpress.com/lifewithlolrak/
❤ Amanda (Lauren’s Mom)
Warning – This is a longish post I wrote at 4:30am on Lauren’s 7th birthday Last year. 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/
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
lifewithlol 