It’s 1 o’clock in the morning and after aimlessly searching through Netflix for some form of entertainment that just isn’t there, I have decided to write an update while an old/new episode of Beverly Hills 90210 drones on in the background. It’s so hard to find anything of interest on TV lately (or anything else for that matter)
I guess I’m going through a bit of a mental rough patch. Everything just seems more difficult lately, I feel like we are in a constant battle to keep our daughter comfortable and cared for in the way that we feel is appropriate.
Lauren’s diagnosis threw our lives upside down, the first few months afterwards felt dark. It was winter, we stayed in a lot and we were mourning the eventual loss of our daughter. Come January, we were tired of feeling sorry for ourselves – we were going to live, and enjoy every last moment (no matter how painful) that was afforded to us. We started taking Lauren to physio, massage, osteopath and any other form of therapy that we thought might help ease her pain.
We weren’t looking for a miracle cure, we knew there wasn’t one. We acknowledged that Lauren was only here for a short visit but that she still deserved to live the life of a child (or an abstract version). Lauren deserved to experience the world, to feel the sensation of floating in water, to feel a warm breeze caress her toes, to have the sun warm her face, to see beautiful things and hear beautiful music as long as her body would allow it.
I still believe in this today, but am having a hard time in keeping my sadness at bay. Lauren still experiences moments of joy but its tough not to let the gravity of her disease overshadow these moments. Each loss is heart wrenching – Lauren’s vision is almost gone, she can see lit up objects and shiny items but with every passing day I can see her remaining vision slipping away. She still smiles and laughs occasionally, but they a fewer a father in between than they used to be. I want to appreciate every single one she has left, but my heart is so heavy and I spend a lot of time fearing that each laugh or smile may be her last.
Krabbe disease is harsh and cruel, my daughter is dying and this disease will not let her go peacefully. It strips her senses and abilities, but she is so strong. She fights to laugh and smile even though this disease has shackled her.
What I find most difficult about our situation though is not the disease itself. Yes it’s horrible and hard, but what bothers me the most is how hard we have to work to care for her. Our local medical team will never see her through our eyes and understand that she still can experience joy, they don’t understand why we are opposed to sedating her. I am so tired and drained from trying to explain that we know that she is dying but that she can still enjoy life, she is still responsive. As her mommy and daddy we know when she is happy and we can see when she is sad. We know what medications she responds to the best and we challenge when something doesn’t make sense for her. Lately though, I just feel like these challenges are piling up.
I wish that I could just stop the outside noise sometimes and just love Lauren as much as I can without distraction.
Ahh enough of that! Here are some cute recent photos.
Thank you to everyone who continues to support us through our Journey with Lauren it is your help and encouragement that makes our days a little easier.