A Mother’s Bucket list for her child

19 Nov

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.

xox

Lauren’s first encounter with Santa – Christmas 2011

Lauren’s First Birthday Cake!

What’s a birthday without Cupcakes 🙂

Lauren loves when daddy takes her sledding

Lauren hanging with a Penguin at the Biodome

A Sunny fall day with Lauren in the leaves

Lauren on her date with Kenan 🙂

30 Responses to “A Mother’s Bucket list for her child”

  1. May Lou November 19, 2012 at 3:56 PM #

    I would love to meet Lauren so I really hope that you are able to make down to campus sometime soon…. it is as beautiful as ever!

    • lifewithlol December 5, 2012 at 11:37 PM #

      Hi Mary Lou,
      Hopefully sometime soon! Maybe when the weather warms up!

  2. jenn November 19, 2012 at 4:13 PM #

    Stars and strollers is during the day on Thursdays in Belleville!! and …you can sleep over here! Also, your bucket list for Lauren makes me think and realize that I too should slow down and take time to do these little things you are doing… with my own kids 🙂

    • lifewithlol December 5, 2012 at 11:37 PM #

      Stars and Strollers during the day! How does that work? Where are the stars 🙂 Lauren would love a sleepover! 🙂

  3. Mary November 19, 2012 at 4:35 PM #

    You are right!! Santa did look grumpy…lol.

    Lauren is so fortunate to have such amazing parents. A bucket list for Lauren……that’s beautiful. Thank you for making us realize how important and precious little things really are. Looking forward to seeing more pics.

    • lifewithlol December 5, 2012 at 11:36 PM #

      Hi Mary,
      He did right! ha ha

      Thankfully I’ve gotten some great leads on Jolly Santas for this year 🙂

      Thank you for following Lauren’s jourmey

  4. Terri November 19, 2012 at 4:46 PM #

    If you haven’t already done so, make Lauren’s first snowman and snow angels.

    If she’s able to, go swinging or sliding, so she can experience the butterfly feeling in her tummy.

    Zoe’s only 9 months and we live all the way in Hamilton, ON, but she’d love to have Lauren over for a sleepover 🙂

    • lifewithlol December 5, 2012 at 11:35 PM #

      awww Terri, Lauren would love the sleepover too! She’ll give Zoe a ring if she’s ever in town 🙂 Snow angel is now on the list!

  5. Kyla November 19, 2012 at 7:06 PM #

    Wonderful idea and post. I sent you a PM through Facebook – it will probably be in your “others” folder. Have a look and let me know 🙂

    • lifewithlol December 5, 2012 at 11:34 PM #

      Thanks Kyla! I think that it’s a wonderful idea. I live a little far away though, in montreal…

  6. Courtney November 19, 2012 at 8:16 PM #

    Lauren’s a lucky little lady 🙂 I think Santa’s village is a fantastic idea!! xo

  7. Dulce November 19, 2012 at 8:58 PM #

    It’s wonderful of you taking the freedom to enjoy the very special lovely things with Lauren…I am sure the bucket list for Lauren is very full with love from amazing parents..!!!!

  8. Debbie Strongilos November 19, 2012 at 9:45 PM #

    I loved her Halloween costume! But yet she has nothing in Marylin!

    The Butterfly exposition at the Botanical gardens is great.. It just started again and ends in the spring. You can even stand and see them fly all around you.. I haven’t been yet and I’d love to see them!

    • lifewithlol December 5, 2012 at 11:33 PM #

      Hi Debbie,
      I love the butterfly idea! A few people have brought it up. I’m going to have to look into that soon!

  9. Brenda November 19, 2012 at 9:57 PM #

    This is so beautiful! God certainly took great care in picking parents for Lauren , she is so blessed to have such a wonderful mom and dad.
    Painting sounds like great fun! Maybe a walk or drive to check out all the Christmas lights…maybe a gingerbread house….. 🙂

    • lifewithlol December 5, 2012 at 11:32 PM #

      Thank you Brenda, I think we have plans to visit a lit up village in upper canada, we are so excited. I like the gingerbread idea too, we will have to figure out the logistics 😉

  10. Nikki November 19, 2012 at 10:30 PM #

    I am wondering if the Make A Wish Foundation would help you get to the ocean. It seems to me the perfect kind of thing for them.

    This is a beautiful bucket list – such a good reminder for all parents of the importance of enjoying the little moments with our children.

    You don’t know me, but I am from Belleville and we have a lot of connections. I follow your FB group and you are often in my thoughts.

    • lifewithlol December 5, 2012 at 11:31 PM #

      Thank you Nikki,

      Lauren is still to young to apply for a wish, I think that she would beed to be at least two and a half. The way things are going it looks like we will have the time to try for it 🙂 A real miracle

  11. Anne Myescough November 20, 2012 at 5:51 AM #

    I desgined a cart that held Chance’s stander, and the we went for walks outside as he stood up to see the world. Oh Amanda the list goes on, with stuff I did with Chance, When there is a will there is a way.. Anything that layes close to your heart for Lauren, you can make it happen. My best was putting Chance in daycare, and he had lots of amazing little friends that cared about him, and fought to just sit beside him or push his wheelchair. That got my heart the most. Dream it and it will come alive. You have a great start to building your memories…..

    • lifewithlol December 5, 2012 at 11:30 PM #

      Thank you Anne 🙂 what wonderful things you did for Chance, I’m sure he loved them. Hugs

  12. ann morfitt November 22, 2012 at 1:46 AM #

    Love that very traditional Christmas family photo. Could be the cover for a book you write
    “Lauren and Santa”. Love, Ann

  13. Jenn November 26, 2012 at 10:54 AM #

    I have followed your blog since my daughter was born with a cataract in her eye and threatened her sight, but I have never commented as I just didn’t have the words to express what I wanted to say. I truly admire you and your husbands strength and tremendous love for your beautiful daughter. She is one very lucky little girl and it makes me realize every minute is precious and to treasure everyday, like you do with lauren. Many prayers of hope and strength as you’re going through this rough time. My heart goes out to you and your precious little girl.

    • lifewithlol December 5, 2012 at 11:28 PM #

      Thank you Jenn! I wish you and your daughter all the best. How is her vision?

      • Jenn December 12, 2012 at 8:49 PM #

        She’s doing very well so far, we won’t know how we’ll she is seeing until she actually tell us. Wishing your family, especially that precious daughter of yours a very merry christmas. Hugs.

  14. Shannon August 1, 2013 at 12:59 PM #

    The story of your amazing family is one filled with hope and love. Lauren is a gift to you and your husband! What about bringing Lauren to a “Build-A-Bear”, picking our her favorite stuffy, and having a wish or prayer placed inside. That could be her forever stuffy, that all our mothers keep from our childhood. Lauren is in my thoughts and prayers!

    • lifewithlol August 11, 2013 at 1:25 PM #

      Shannon, that is such a sweet idea. Lauren has her monkey chico that she is very close to but a bear with a wish or prayer inside would be awesome too! Thank you for your thoughts and prayers.

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