Its been a really long stretch since my last update, I’m sorry for that.
The past month has been mentally difficult and although I’ve tried to keep a cheery disposition throughout the past few weeks I have been struggling internally as the sadness creeps in. October 28th marked the anniversary of the worst day in our lives – it was a year ago that we had first taken Lauren to the hospital. A mere few hours after arrival we were hit with painful news that would alter our lives in a way we could have never imagined in our worst nightmares. We wouldn’t have a definitive diagnosis until months later but we did find out that Lauren’s symptoms were most likely caused by a neurodegenerative disease for which there was no cure. I can still remember every detail of the room that we sat in when our Neurologist first delivered the news. We asked so many questions, we were grasping at straws, trying to hold on to any shred of hope – but it seemed that every answer delivered a more painful blow than the one before.
When I try to remember back to the first couple of months that followed our return home from the hospital I have trouble. It was like I was living under water, sound has been muted from my memories.
Sometime just before Lauren’s 1st birthday I shook the sadness to the side and put my best effort into living life for Lauren. Steve and I have focused the past year on making as many memories as we can and trying to ensure that Lauren is given a multitude of wonderful experiences.
And finally I get to the title of this entry…My bucket list for Lauren. I think that as parents we all have a list of things that we want to do for/with our children, whether it be as simple as making them a birthday cake. I have a list of things that I have wanted to do since before Lauren was even in my womb and a few others that I added along the way. As the time passes, the urgency to refer and add to the list grows.
Lauren’s progression through the disease has not been as fast as we were first told, still so much of her abilities have been lost. When first diagnosed Lauren laughed, smiled, waved, sat on her own and had begun speaking (nothing fancy, Hi’s, Bye’s and of course Dadda, she called me nyanna, I think she was aiming for Amanda). Today Lauren cannot smile, her laugh is inaudible, her movements most often come from spasms and her vision is extremely weak. That being said Lauren still understands and is cognitively aware of what is going on around her, she loves music and having stories read to her. She even gets bored and is not shy to let me know – mommy is no longer allowed to sing Itsy Bitsy Spider, but Rudolph the Red nosed Reindeer is appreciated.
So far this is the list of things that I have wanted to do for Lauren and have accomplished (there are probably more but it’s past 2am so I’m likely to miss a bunch!)
Have Lauren meet Santa – Last year we got Lauren’s picture with Santa and I am thrilled that we’ll have another shot at it this year (last years Santa seemed grumpy in the picture – I’ll have to scope out a few locations before picking a final Santa this time!)
Bake and Decorate her Birthday Cake – 🙂 Check that one off, I had taken a cake decorating class before Lauren was born for this sole purpose. I almost didn’t do it because I was tired and run down at this time last year but am thrilled that I did!
Take Lauren Sledding – So it wasn’t down a hill! We still had a great time going around the block
Take Lauren to the Biodome – Nonna made this one happen – Lauren got to see all kinds of animals but the Penguins were by far her favourite.
Play in the leaves – We missed out on this one last year while we were in the hospital, we did not let the chance slip away again this year!
Sew her first Halloween costume – Another one that I almost backed out of! Those Old Navy costumes were more and more tempting the closer we got to Halloween but in the end I sewed Lauren’s costume because I knew that no matter what I told myself I would regret missing the chance to do that for her.
Go on her first date – I have to thank Natasha and Mayte for this one (Both Krabbe moms like me). Thanks to our digital age Lauren attended her friend Gabrielle’s online Halloween party with her super cute date Kenan.
Make a Memory Jar – This was a pinterest find that I posted about before, it helps to capture the less monumental but yet extremely special moments that could go forgotten if not noted down.
Some things that I would like to do for Lauren but haven’t yet had the chance.
I want to put Lauren’s feet in the Ocean – This is one that I am upset I missed out on this past summer. I so badly want for Lauren to experience the feeling of her little toes in the sand while the waves lick at her feet. I want to show her real Sea shells and I want her to feel the ocean air on her skin and through her hair.
This winter I would love to take Lauren to Santa’s Village. I’m not talking about the lame mall display that they setup for a money-making photo shoot with Santa but a whole Village made to do so 🙂 I hear that there is one up North near Montreal that opens on December 1st, Lauren and I may be among the first in line!
Lauren will help decorate the Tree this year as I will be making a salt dough ornament with her footprint, or fist print (I can’t get her hands open)
Finger paint – This seems easy enough but I haven’t done it with Lauren yet, it is on the list and I will be sure to post up her masterpiece!
Take Lauren to a movie – a risky one if she is in a bad mood. I figure we can catch a children’s movie during the week when most kids are at school (with their germs!)
Bring Lauren to a concert – Anyone know if the Backyardigans are coming to town.
Take Lauren to a zoo – Nonna took us to the Biodome in the summer which was awesome, but I think the next step will be a full Zoo!
Attend a sleepover – Any takers? 🙂
Go to Bishops – Both daddy and mommy are Bishop’s University Alumni, we would love to take her on a day trip to Bishop’s one day.
That’s what I can think of now, I’m sure that tomorrow I will come up with at least five more things!
Do you have any ideas of things that we could add to the list that Lauren might enjoy! Please leave us a comment, we would love to hear some of your ideas.
Each item on the list is a potential new memory, a special moment in time to remember with our baby girl.