Tears will fall

21 Feb

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.

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13 Responses to “Tears will fall”

  1. Stephine February 22, 2012 at 12:45 AM #

    This breaks my heart. I lost my little boy at 9 days old, he was born prematurely and we did not expect him to pass because he was pretty healthy, despite being tiny. He got an infection. However, I still cannot imagine your pain. I cannot imagine the feelings that you feel. It’s hard to think our situations are the same and different all at once. Sometimes I wish I had known my baby was going to pass, I would have spent so much more time with him. Every single second. I admire you for stay positive. You are SO strong and you give me strength to keep going.

  2. Cindy February 22, 2012 at 2:00 AM #

    Leukodystrophy a Horrible ride! I am so sorry that you have to deal with this heartbreaking illness. It is so brutal in so many ways.
    It has been hard for me to watch the videos of how my son used to be.
    But as hard as it is I wish I would have taken more of those video’s because they bring my older children a lot of joy remembering how their little brother used to jabber and crawl and his attempts at walking.
    We had our son tested as a baby for the type of Leukodystrophy that runs in our family and the lab report came back that he was healthy and didn’t have it. then 15 months later we were pretty certain the lab was wrong we had him tested again and he did have it.
    It was such a horrible mistake it took away all of our options for transplant.
    But I know these children are here for a reason and God watches over them. I would do it all over again to know such special children.
    May God comfort you and Bless your precious baby♥

    • lifewithlol February 28, 2012 at 2:46 PM #

      Cindy your story made my heart drop. I can’t even imagine what it would have been like confirming that your son was healthy to only find out that someone had made a mistake. It breaks my heart that you were robbed of the chance to try for a transplant.

      This disease is so heart breaking, I will pray for your continued strength and for comfort for your son

      Bless you and your family,
      Amanda

  3. Janet Loughheed February 22, 2012 at 8:31 AM #

    In everyone’s life there are days when you are afraid to start crying because you can’t be sure you’ll stop again. Let the tears flow, there is no one helping you who cannot understand and accept your need to be human within a very difficult situation. When you’re done, pass the tissues over..

    Aunt Janet

  4. Stephanie Reid February 22, 2012 at 9:25 AM #

    She is an amazingly beautiful girl and her laugh is infectious! Thank you for sharing these sweet videos. I find when I read your blogs it encourages me to be appreciative of the small things which unimportant at the time. Sending love your way. Hugs to you and Stephen.

    • lifewithlol February 28, 2012 at 2:48 PM #

      Thank you Stephanie. I love her laugh too 🙂 She sometimes surprises us with a small giggle and it puts us over the moon. I’m happy that Lauren’s story helps to bring focus on some of the small things that can mean so much.

      Hugs,
      Stephen, Amanda and Lauren xo

  5. Louise Ottinger February 22, 2012 at 9:41 AM #

    Amanda,
    I read your update this morning and it was heartbreaking. I can say that I know exactly what you are going through. I can also say that you are facing this challenge with the best possible attitude. Focus on the positive, focus on your time with Lauren, enjoy her every minute. Build memories with her that you will always cherish. Remember every day what she can do! I am struggling for words, but wanted you to know that I think of you often.

    Louise

  6. Anna Gregory February 22, 2012 at 11:05 AM #

    Amanda,
    Becky sent me your blog. Thank you for sharing your experience with anyone who can stumble upon it or are lucky enough to have it sent to them. Through your beautiful, candid writings, you are touching the hearts and teaching the minds of everyone who reads your blog. You are going through a tremendously heart wrenching life experience that NO one should go through, yet, you are taking the time to share your experience with anyone who is fortunate enough to read it. I too have tears for Lauren, anytime I read your blog or just think and pray about your little girl. I received your card with Lauren’s picture, she is adorable and cuddly. Enjoy the time you have with her, know that you are a great Mom and that she is blessed to have a wonderful family and fantastic parents.
    Love, Anna

    • lifewithlol February 28, 2012 at 2:54 PM #

      Hi Anna,
      I’m happy that Becky sent you to our blog. Lauren is a special princess and I want everyone to know about her and her terrible journey with this disease. Every moment that we have left with Lauren is a gift and we are so thankful.

      Thanking you for your kind words,
      Amanda, Stephen and Baby Lauren

  7. ann morfitt February 23, 2012 at 7:57 AM #

    Dear Amanda, Stephen and Lauren,

    Thank-you so much for these touching videos. They truly depict your family’s spirit of love in good times and hard times. You do not skip a beat really, inspite of the pressures of earthtime and pain, you carry on, constantly modelling the ‘way’ of love.

    Lauren, you are the cutest baby and your giggles make me giggle. Your great-great Aunt Nellie had a few giddy moments watching you. She kept telling me to play the videos over and over. She had 5 cups of tea so that shows you how you can captivate your audience.

    May the light be constant
    And the tears form rainbows
    Over your forever trinity bond

    Love Ann and Aunt Nellie

    • lifewithlol February 28, 2012 at 2:56 PM #

      5 cups of tea! I love you Aunt Nellie!

      Thank you Ann!

      Love,
      Amanda, Stephen and Baby Lauren

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