Finding Moments of Joy

2 Apr

I wake up every morning with a heart that is full of pain and sadness, but as I drag myself out of bed I make the conscious decision to open my heart and to accept the small but significant moments of warmth and light that are presented as they come.

It has been about three weeks since my last update and I’m happy to report that we have several moments of Joy to share.

Let’s begin with Lauren’s second and very momentous St. Patricks Day. Last St. Patricks day came and went without much thought (Sorry mom!) but this year with Lauren encouraging us to live in the moment, we made sure that did by hosting a quick family photo.

Uncle Roger, Grandma, Cousin James, Lauren, Mommy, Cousin Julia, Auntie Linda and Daddy

Later that week we took Lauren for her first massage. After some resistance she finally relaxed, and I mean RELAXED!   I think that it lifted all of our spirits to see her fall so sound asleep.

Lauren enjoying a very Relaxing Massage at the Mediclub

Friday of that week rolled around and with it came a very fun day – Lauren’s first day in the pool program at the Rehab centre. This was a big moment of joy for me, we were so excited that us girls went and bought almost matching bathing suits  the night before. Lauren’s bathing suit bottom ended up being a little big but she still wanted me to take her picture in the complete outfit.

Lauren in her fancy new swimsuit - Which way to the pool?

The pool water was warm and relaxing. Lauren got a lot of attention from her physiotherapist and loved floating in the warm water. She was especially excited about getting to take part in songs and activities with other pool friends! Halfway through the class, Lauren was so relaxed that she fell asleep!

Loving the water!

In the week that followed, Lauren got to go and meet with an Occupational Therapist. She tried out a very fancy bath seat and got to use some really neat sensory toys. In the picture below she is trying out a Boing illuminated ball, one that she loved so much, Mommy ordered it right away when she got home :). We were also able to borrow a sensor switch that hooks up to a CD player and plays music when Lauren is able to move her arm slightly. I have trouble putting down in words how cool this really is. Lauren has lost a lot of mobility since her disease has taken over, so much so that I would normally attribute a lot of her movements to spasms. With this switch it has become obvious that she is able to make small purposeful moves. Our little smart angel is so strong!

Lauren with her Occupational Therapist mesmerized by a lit up Boing Ball, while trying out a bath seat

Video of Lauren testing out the Musical Sensor Switch


Some other things that Lauren got to enjoy recently include a second trip to the Osteopath, and some wonderful at home music therapy! The music therapy was really fun for all of us and Lauren really got to enjoy it, which was extra nice since she had been incredibly cranky minutes before it had started. Amazing what some good twinkle twinkle little star, and itsy bitsy spider can do for a cutie like Lauren.

Another thing that brings us joy – our Lavender Bracelet campaign! Thank you to everyone who has and continues to support Lauren in her Journey with Krabbe disease. Knowing that people are wearing the lavender bracelets and thinking about our angel warms our hearts so much. Your gifts go to help us care for Lauren’s quality of life in many ways! Thank you for including our daughter in your hearts.

Thank you for continuing to read our blog updates, it is your following that encourages me to reflect on the positive moments in our life. It is very difficult to watch our daughter suffer at the hand of this disease, but it is so important to remember that good still exists in our lives, we just have to look a little harder sometimes.

Lauren's Beautiful Bella Letters, check out - Thank you Kate!


8 Responses to “Finding Moments of Joy”

  1. Ken Roberts April 2, 2012 at 5:14 AM #

    Wow!! You guys have certainly been busy & you are doing, I think, all the right things for Lauren. Thank you for another great update & allopwing us to be part of Lauren’s life.
    Ken. XX

  2. NatalieS April 2, 2012 at 6:01 AM #

    You are never far from my thoughts and always in our prayers.

  3. Anne Myerscough April 2, 2012 at 8:18 AM #

    Wow!!! She is so very smart and I am happy to visually see you all enjoying the life that is Lauren’s. She is living with her Disease, and doing the best that she can.

    My heart brings warmth to you all. Keep up the great parenting.

    Anne(Chancey’s Mommy)

  4. Noreen Schiavi April 2, 2012 at 9:37 AM #

    These latest pictures of Lauren and the family are so beautiful. It has brought a tear to my eyes this morning. You will always have these memories in your hearts for the rest of your lives. You and Stephen are so strong, I could not have done this. Love, Noreen

  5. Despina April 2, 2012 at 9:45 AM #

    Everytime I read your posts I can’t help but tear up. I pray that your little girl suffers as least as possible. You are very brave and amazing parents. I’m sure the love and attention you show her help her go on every day.


  6. Hayley April 2, 2012 at 1:07 PM #

    Inspiration would be an understatement. Although this disease is horrible and I begin to feel the pain you are going through, Lauren picked you guys. You guys are GREAT parents. You are doing wonderous things for your baby girl ❤ Everytime I read these blogs, I sob. I pray everyday for you guys and think of Lauren very often. We all only wish we could make it better! I shout to the Heavens about it often. All my love. Thank you for letting us all be a part of Lauren's life.

  7. Emily April 2, 2012 at 2:07 PM #

    I think the swimming and the music are really going to help Lauren……I was a little worried when I read the part about her falling asleep in swim class, but Amanda, you were right there with her, so she was safe the whole time. 🙂 Also, I’m glad she likes her glowing ball–any kid can tell you that toys (and even mundane objects like toothbrushes) are just more fun when they glow, flash, or light up somehow. 😉

  8. ann morfitt April 6, 2012 at 4:56 PM #

    Another joyous moment to add to this post, Cheryl’s support of your decision, Amanda, at that time. You really, really know your daughter and thank God you were given many normal healthy months for Lauren to disclose her happy, loving chararcter. It doesn’t surprise me that the latest victory is all about music. Lauren has always had a passion for music and this is well depicted in the video you kindly shared with us before there was any indication of any health issues whatsoever. This is the video of Lauren (7 mos.) deliberately choosing ‘Glee’ music over crying in mommy’s arms. She discovered what comforted her then and, by golly, she found her power to manipulate her little muscles to control that sensor switch now. And the way Lauren is keeping the beat with her eyes, what a gift! These are the wonderful messages that reaffirm your little daughter is fully aware of the love around her, as she sits center stage, in that lovely green celebratory family pic.

    Lauren, you look adorable in your pink-trimmed zebra-striped mult–colored heart-splashed swimsuit and with those big blue eyes wide open, you’re eager to get it wet. Splash! Great news to hear that Lauren fell fast asleep in the pool! What a powerful ‘natural relaxant’. Combine that with another successful session of physio, and I’d say, Amanda, all your efforts resulted in a very happy child. A penny for your thoughts, Lauren, what a quizzical look you have as you touch and study the Boing Ball.

    May St. Patrick use his staff to guide all of you towards the light ‘always’. The family love just jumps off the screen in that pic and that is reality!

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