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.
The next video was taken this weekend during Lauren’s Nonna’s visit.
Thank you to everyone who has been praying and thinking about our Lauren, sending much love to you and your families.