September is Leukodystrophy Awareness Month

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

Lauren’s 3rd Birthday Party – Save the date – Sunday Jan 26th!

Dear Friends,

I wanted to invite you to an event that we are having for our daughter’s third birthday! As you already know, our daughter Lauren has a terminal disease known as Krabbe disease. The average age that children who have this disease reach is about 13 months, Lauren is turning 3! To celebrate this amazing milestone there will be a fundraiser/birthday party happening on Sunday January 26th with proceeds going to the MAB Mackay Foundation and our family.

There will be tons of fun family events, bouncy castles, face painting, princess tea party, a reptile show and lots more.

Please consider joining us for this fun event.

At this time we are also seeking event sponsors (details in the photo I posted), raffle prizes and Loot bag item donations. If you or anyone you know may be interested in helping please let me know.

Thank you for your continued support and kind thoughts over the past few years, it means so much to our family.

xox

To be a sponsor or donor please contact – Rania at Rania@rougeeventdesign.ca

Lauren’s website: www.lifewithlol.com
Face book page: https://www.facebook.com/Lifewithlol

Click on the image to enlarge

The County Marathon

For the past few months, Stephen and I had been training for our first Full and Half marathons (respectively). We started out feeling extremely motivated but then as the summer’s end neared and the days became heavy and humid, we both found ourselves struggling to run.  By the time that the weather cooled we were forcing ourselves to train. What kept us training was that we weren’t running for ourselves – we were running in honour of Lauren and the CLSC Lac-Saint-Louis & Pierrefonds foundation.

We ran on October 6th 2013 in the Picton County Marathon.

Stephen and I woke that morning to a dark sky and rain – perfect conditions for a Marathon 🙂 I snuggled in bed for an extra hour with our Lauren while Stephen headed to the marathon starting line. By the time his sister Marlena and I were headed to the race with our friends Jonathan and Kelly, Stephen had just begun his run.

It was raining but it seemed to be letting up, it actually stopped for a short while when we were getting ready for our half marathon to start. As if the rain was on a timer, it picked up just as the half marathon began, within an hour it was raining so hard that I had to swipe water off of my eyes to see. Nonetheless it was a really beautiful run. I remember at one point in the race watching a single red maple leaf twirl down slowly in the air before me, finally landing and the shiny wet asphalt and thinking to myself how it was like something in a movie. (side note: Isn’t it strange how we often equate things of beauty to a movie or painting – real life is spectacular!)

The course had us running through an amazingly beautiful area, we ran past a beach area, woods, cute towns. It was so lovely and scenic that even in a downpour it could be appreciated.

The first few kilometres passed well, I jogged a slow and steady pace out of fear that I would burn out early. Just before reaching my seventh kilometre I noticed a friendly face next to me. Stephen had caught up to me, I was so excited! We held hands for a moment, then I wished him luck for his finish. I watched him run ahead for a few seconds, at which point I decided to pick up my pace so that I  could catch up to him and give him a kiss for good luck. The next five km were easy as Stephen was still in view ahead of me, it felt motivating to see him. By the twelfth kilometre he was too far ahead to see.

The rest of the race went by pretty well. At my seventeenth km I tried to take a break and walk for a few minutes – this was a brutal mistake. The second I slowed down my muscles started to scream, muscles I didn’t even know I had pulled and tightened. So after about twenty seconds I realized that I would have to continue to jog it out or I wouldn’t be able to finish.

In the end, Stephen and I both finished our races with huge smiles. We couldn’t wait to get home and see our real champion of the day – Lauren!

It was a wonderful experience, and we were so moved by all of the support that we received. We broke our goal of raising $2,500 and came in over $3,200 for the amazing CLSC Lac St Louis and Pierrefonds foundation, with funds going to palliative care. This money will go to help our family as well as others struggling with terrible circumstances in our area. We have been so appreciative and thankful for their help and are excited to be able to raise money for them.

We will be submitting a list of donors to the CLSC this month, and thank you again for your encouragement and support!

Holding the real champion of the day! Lauren was so happy that Daddy and Mommy did such a great job in finishing the race.

Three thermometers

Lauren owns three digital thermometers…we once had four but I threw one out.

Why would we need so many?

Well earlier this year our first digital thermometer started acting wacky. It wasn’t the most high-end digital but it also wasn’t the cheapest. It was kind of sucky in that it took about a minute (which always felt like 20) to finally settle on a final reading. One day my thermometer seemed to have become increasingly “sucky” when it just couldn’t read Lauren’s temperature and instead annoyingly read a capital letter L in place of a number. Later that same day when I tried again it read 32 degrees Celsius by an underarm reading – a ridiculous temperature, one that would mean she is hypothermic. I had a enough and tossed my thermometer in the trash and headed to the pharmacy to buy a higher end version.

While Lauren was at home with one of our amazing caregivers, I headed to Pharmaprix to scope out a more expensive digital thermometer. After comparing a few and shelling out a little over 30 dollars, I came home armed with a fancy quick reading digital thermometer that even had fun colour displays so you couldn’t mistake if your child had a fever.

Upon arriving home I tried out my new masterpiece of digital thermometry and do you know what it read… L, a capital L!!! I was enraged, I couldn’t believe that I had bought a dud. I left the house a second time that day and headed to the Dollarama to buy a two dollar digital just to see what it would say, I didn’t want to spend another 30 dollars – I couldn’t understand how I managed to acquire two malfunctioning thermometers, I mean that’s a bit crazy isn’t it!?

The cheap thermometers (I bought two this time) that I arrived back home with gave readings (probably because Lauren had warmed up) it was 32.2 degress celsius by underarm and 33.4 rectal. She was cold, and I mean really cold.

I remember the panic at the time, I felt helpless and so completely frustrated. I had heard that temperature regulation could be a problem for our kids (kids with Krabbe disease) but I hadn’t seen anything like it before. My daughter was so cold that to kiss her cheek would leave your lips chilled, it reminded me of kissing a child’s face who had been playing outdoors on a cold day. I spoke to our doctors and nurses, and it seemed that there wasn’t much I could do but keep her bundled and wait for her temperature to rise.

The worst part about it, the absolute suckiest part – Lauren gets multiple spasms that are very uncomfortable when she is cold.

These temperature drops seem to come and go, sometimes lasting only a few hours, other times half a day. We are as used to them now as we can be, but we will never be at ease with it.

Tonight she is cold… 32.2 degrees and I hate it. Along with her temperature drop came the spasms. Her little arms flail up and shake, she has small seizures and pained tiny screams pass her sweet cold lips.

We had such a wonderful day together that it was going to be the original topic of my blog. I love sharing the fun times that we spend with Lauren, like how she went swimming this afternoon and loved it. I also wanted to share how her first city council meeting went (she’s a very involved citizen you know!).

Instead I decided to let you in on just one of the consequences that this terrible, awful, horrible, disgusting disease has on my darling princess Lauren. As I type this she is lying next to me bundled up in layers of blankets with a warm buddy sheep and a giraffe hot water bottle, she is medicated with Tylenol and Ativan which have finally kicked in since I can hear her snoring softly. Our dog Buddy is affectionately curled up by her feet, protecting his big sister the best way he can.

If you have a moment to think or pray about our daughter, I would really appreciate it. Please pray for this to pass quickly so that we can greet tomorrow’s new adventures openly. We are so blessed to have Lauren in our lives. She is a strong little fighter and she has been doing so well considering everything she has to go through.

I’m going to leave you with a sweet picture of Lauren and her dog buddy taken just yesterday. I already shared these through our Facebook page but wanted to make sure that everyone had a chance to see them.

Tomorrow I will update you on Lauren and how her night went and hopefully spend more time on the “fun” moments.

Pennies in a fountain

I’ve had a very hard time trying to finish a post for our blog – the past two months have been mentally trying for our Krabbe and Leukodystrophy community. Since 2013 has begun we have lost six of our beautiful children. Each loss leaving us with a bigger tear in our hearts.

      Madison – Age 6 ½ 
      Adam “JoJo” – Age 2 
      Candise – Age 9 ½ 
      Matthew – Age 2
      Madelyn – Age 1 ½ 
      Montgomery “Gummy” –  Age 4 ½

Although I don’t personally know the families of the children listed above I can say that I know them better than some of my closest friends. We share the same hopes and fears, we have relished in our children’s small successes and we have shed tears together as our children struggle through the journey of this awful disease. Each child although unique is also a reflection of our daughter.

When Lauren was first diagnosed with Krabbe disease I felt as though my whole world came crashing down around me. She had been served a death sentence and I mourned her life, I mourned my smiling healthy baby girl and I prepared to begin a new path with my dying child. I remember thinking that no moment to come in my life could possibly hurt more, and that when Lauren would pass I would be prepared.

As time passed, I discovered how resilient we are. I pushed aside the idea of death and the future and instead shifted my focus to the moment at hand. Lauren is alive, she is present, she deserves to be treated like the living. So began the quest to ensure that Lauren would live with a quality of life. My husband and I learned to look for small signs and moments to rejoice in. While other babies her age were walking for the first time, we were happy to hear Lauren’s voice. While other children began speaking, we would hang on to Lauren’s sighs and the occasional almost silent laugh, a laugh sweeter than any other sound we have ever heard.

We have adjusted to our lives, and the more time that passes the more I fear to lose what we have. Life is not easy, and it is not fair, but I have found joy and happiness in our greatest struggle. I can’t imagine losing it….

My heart is broken for the parents of our Angels, there are no words that can make right of the moment you lose someone you love. I pray that they may find peace.

I pray for a miracle, I pray that God heals Lauren and that He heals Lauren’s sisters and brothers. I Pray for a cure for this disease, I PRAY!

I also make wishes all of the time, i wish on stars, the moon and with pennies. I welcome any opportunity to express my hope.

The other day Lauren and I were shopping at the mall and we decided to take a rest by the fountain. I looked into the water at the cracked tiles that were littered with copper coloured coins. The pennies shone a dull glimmer, and for a brief moment I remembered how magical this fountain had seemed when I was a child. I looked back at Lauren and asked her if she would like to make a wish, she batted her long eye lashes at me (of course I took that as a yes). I grabbed a penny from my wallet put and held it against Lauren’s soft palm for a moment before tossing it into the fountain. I would share our wish but I hear that’s bad luck, I’m sure that you can guess it 🙂

Lauren looking at the fountain while she makes her wish

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

A Mother’s Bucket list for her child

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 🙂

Tears will fall

The tears flowed freely today – Maybe it was because I was tired or it was just my emotions catching up with me, either way I couldn’t help it.

It began this morning when we took Lauren to the rehab centre to try out an adaptive car seat. The rehab centre is also a school for children with disabilities and upon arrival we were met with hallways that were brimming with beautiful children who were enjoying their recess. Our appointment with the seating department was located on the floor below, making our way to the elevator I could hear children laughing and playing together. Once downstairs the children playing above sounded like a rainstorm, full of activity, it was then that I broke down. My heart ached for Lauren, I wished that she too could have the opportunity to laugh with friends, play and learn.

Later that afternoon we went to the hospital for an EEG to check if Lauren had been suffering from seizures. The appointment went well, although we don’t yet know the results. In meeting with our doctor to go over Lauren’s medication doses, I cried again. Medicating for pain is a tricky balancing act, too much and we could prematurely lose a smile or small giggle, too little would cause suffering. The reality of Lauren’s disease tore at me, once again I knew that there was very little that I could do for our baby.

At home I can ignore reality, focusing on the moment at hand so as not to see the greater picture – the reality that we are losing our little girl. Reality is harsh, Lauren has already lost so much, and yet there is still more losses to come.

I pray for more time, time is precious and in life there are no guarantees that we will be given more. Lauren has opened my eyes to this.

I wanted to share some short video clips with you of Lauren before and after Krabbe disease stole her ability to laugh and smile. This is how I still see my daughter everyday. (They are not edited and I apologize for the quality). You can find more on Youtube by searching lifewithlol, I’m hoping to add more as time goes on.

August 2011 – Lauren is Seven months old and laughing up a storm!

October 2011 – Lauren is Nine months old, she has lost her ability to sit on her own but she can still use words

The next video was taken this weekend during Lauren’s Nonna’s visit.

February 2012 – Lauren is thirteen months old

Thank you to everyone who has been praying and thinking about our Lauren, sending much love to you and your families.