One week ago today I was sitting in the Hospital Emergency Room arguably facing one of the new “longest nights of my life”. We were in the middle of a 15-hour “medical marathon”. My beautiful 22-year-old daughter had suddenly and inexplicably lost the use of her legs 24 hours before. This was our second long night in a row keeping vigil in an ER. The previous night we had spent 6 hours in a much smaller hospital as the poor ER crew juggled a full house, including 5 ambulance traumas. With “unremarkable” initial test results and no neurologist on call they eventually could not determine our daughter’s issue, so they sent her home saying it would “probably go away on its own” and instructing us to “come back if it gets worse”. (begging the question, exactly how much ‘worse’ is “not being able to walk”?!)
Eventually, she would be admitted for “more evaluation”. It’s hard to believe that was a week ago. In some ways it feels like a lifetime ago, but in many ways it seems like we’ve simply been living in one long, extended, dreary night. We are still trying to adjust to our ‘new normal’ – which is simply accepting the unknown. We are trying to live “one day at a time” – but unsure what that really means.
- Try not to think about the future.
- Try not to make any plans.
- Try to push back all the fears and worries that come with looking ahead.
- Try hard to count our blessings and look for all the ” little things” that are our tender silver linings.
Daughter A has now been working so hard each day doing intensive rehabilitation therapy. She’s trying to get her brain and body to talk to each other again. And she wisely quips, “The brain is a very tricky bowl of noodles”.
- She still can’t stand on her own, let alone walk. But, she can transfer herself from her wheelchair to the bed, or from the wheelchair to the toilet seat on her own. That seemingly small event is a great victory.
- Her upper body strength is really improving. Her arms are getting stronger. She can push her body up with her arms and hold for a few seconds.
- She has totally mastered the wheelchair. She holds the ‘champion wheelchair racer’ title on her floor (hidden talent!) :)
- She is keeping a positive attitude. She accepts help with such simple kindness and graciousness.
- She has faith that God is aware of her and that this is – somehow – part of His plan.
It’s hard to believe that just two weeks ago today we had been hiking a mountain together as a family and having a picnic enjoying one of our last beautiful warm Fall days and all the colorful autumn leaves. We were carefree and taking the ability to simply MOVE and go anywhere we pleased for granted.
I’ve tried to survive for the past 9 nights averaging about 3 hours of sleep. A body isn’t meant to do that. It’s finally catching up to me. My brain is in a fog. I’ve been feeling a little “shaky” and cold all day. I feel deeply, desperately fatigued. My whole soul is just worn out. I’m trying to gather some mental strength for tomorrow – Sunday – always the longest and most challenging day of my week. I have a huge project due at work that needed attention today in order to meet the deadline. I’ve struggled with being able to concentrate, and feeling at times panic-stricken I won’t complete the project in time, and at other times angry and defiant that I am even being expected to do this project in the middle of a family crises! My emotions have run the gamut (I hear being sleep deprived does that). So, basically, I’ve felt completely and utterly overwhelmed. The burden was just too much to carry anymore right now, and I went in my bedroom and knelt by my bed and cried to the Lord.
I wiped my eyes, went back to my laptop, and started working on the dreaded project again. But, the Lord had heard my cry. In moments, I received three sweet emails of support from family, and a kind text message from a spiritual leader. Next, I received a phone call from my best friend who gave me a much needed scolding for not taking better care of myself, and a very stern (but loving) curfew. I felt bouyed up, and thought I just might make it after all. But, then the Lord opened up the windows of heaven and sent a phone call from my Mom & Dad who are serving a full-time LDS mission miles away in California right now. Oh, how I needed to hear my Daddy’s voice right then! I can’t express how much that meant to my soul! We talked for almost a whole hour and it was just so sweet – just what I needed. A tender, personal reminder that I am a beloved daughter to both my earthly and my heavenly fathers…and I’m going to be OK. I can do this! One night at a time. (thank you, Daddy)
Tomorrow morning the Mormon Tabernacle Choir will perform a personal favorite of mine from our repertoire, “My Song In The Night”. It became one of the Choir’s first YouTube music video’s released in 2009. I’ve blogged previously about this song, and this video – but, it seems especially applicable right now, during this new night-time of my life.
“Songs, like trees, bear fruit only in their own time and their own way”
– J.R.R. Tolkien, The Lord of The Rings