This week was difficult to start, Lauren was feeling more pain than in days previous and was unable to enjoy the things that she likes best – being held and dancing around with mommy.
Adding to the stress of Lauren’s pain issues we received a tasteless letter from the Quebec SAAQ on Monday denying our request for a handicap parking permit. Instead of advising us that they would need more information they wrote, “We are unable to process your request. At this point in time, the child’s limitations due to his (her) young age may be mistaken for inabilities.” I couldn’t believe that someone reviewing our file could write something so insensitive, I mean did they really think that we applied for a handicap permit just because our one year old can’t walk! After a day or so of being angry I just decided to focus on building a better case and send them a note from our doctor accompanied by a (highly edited) note from myself requesting that they take a second look.
The good news is that the week did improve as it went on. Valentines day was nice and relaxing, Lauren gave us many kisses and Stephen surprised me with beautiful roses and one of the most touching cards, we ordered in from an italian restaurant and enjoyed our time together in the family room.
On Wednesday, we received a very exciting package in the mail, Lauren’s lavender bracelets! We ordered these bracelets to help us to raise money for Lauren’s care (stuff that insurance can’t cover) and to raise awareness about Lauren and her journey with Krabbe disease. On a side note, If you would like to get your hands on one of Lauren’s ultra fashionable bracelets you can click on How to Help in the menu or just click here.
Thursday, we headed to the Montreal children’s hospital to see Lauren’s Neurologist. The appointment went well and we were able to get Lauren on a new medication – Indocin, an anti-inflammatory. From my understanding this medication can help lessen some of Lauren’s symptoms by alleviating the inflammation in her brain. It’s a little too early to tell if the medication is helping, Lauren does seem a bit more alert but she still screams when we try to move her. We will be going back to the hospital on Tuesday for an EEG so we will be monitoring her pain levels until then, I’m hoping that we wont have to increase her pain killers just yet.
On Friday Lauren’s Nonna arrived from Belleville, and with her came goodies for Lauren! Jenn Munro (check out her blog post about Lauren here) had captured some beautiful images of Lauren in January, and with the help of her fans raised money for some gorgeous canvases and a donation. Along with the canvases came a cute blanket by Dezignz by Liz and decorative pom poms from Pom Tree. She even inspired a musician named Emelie Mover to raise money and dedicate a show to Lauren, how very cool is that!
At this point you may be wondering about the title of this blog, well I figured why not save one of my favourite moments of the week for last!
On Valentines day Stephen and I started a memory jar, it’s an idea that I came across on Pinterest and fell in love. A memory jar is basically a place where you store memories that you jot down before forgetting. The fun part about it is that it doesn’t take much time, and can be added to at any time using any piece of available paper. So many fun things happen in our lives and sometimes we forget, with the memory jar it’s easy to find a scrap piece of paper to record those fun memories. Another great feature is that unlike a journal or diary anyone can take part in adding memories to the jar, family and friends alike are welcome! The memory jar has also been a great tool for helping me to focus on the good things that are happening around us at a time when it can be so easy to drown in the bad.