Somewhere along the way in the past couple of years I forgot to make time for joy. I forgot what it meant to have fun.
Or perhaps, it isn't so much that I forgot how, but I couldn't figure out how to do it within the restraints of feeling so, so sick all of the time.
When Davidson made it to the NCAA tournament in March and then all the way to the Elite Eight, something ignited inside me. I was going to watch those games, cheer my heart out and pay whatever price I had to pay afterwards. Every game made me sicker, every game had a consequence, but every game reminded me that joy and fun were possible.
Ever since then, I've been making a concerted effort to make time for and to seek out joy in my life. Maybe it sounds strange, especially to those of you who know me as someone who is usually fairly upbeat, positive, cheerful, etc. to imagine that I wasn't actually experiencing joy much.
Since many of my blogs can be a bit sad or down-hearted, I wanted to share the joy I have experienced. In between each of my shots, I am sometimes getting little 'breaks' when I feel 'better' (better is a relative term here!).
This weekend the cold, rainy days finally turned to perfect, gorgeous weather. Everything is green, everything is blooming, the sun is shining.
Our neighbors have lived across the street from us ever since we moved here--I grew up playing with their children, running back and forth between their house and ours. Their daughter, Carrie, and I have always been friends but rarely get to see each other.
Two weeks ago, I was able to stop over at our neighbor's house to see Carrie and her six week old baby, Claire. This was the first time I knew something was changing with the Lyme treatment because I sat upright, holding a baby! Plus, I was at someone else's house other than my own. Also, for me, a being with children and babies is tops on my list of 'best things in life.' It had been about 5 years since I last held a newborn--another neighbor's child.
On Saturday, I spotted Carrie over at her parent's house again and headed on over to see her and Claire. When I arrived Claire was asleep. When she awoke, they let me be the one to pick her up, soothe her, give her a bottle, burp her and hold her as she slept in my arms. All the while, I got to catch up with Carrie and her mom, Brenda.
Admittedly, I'm a little out of practice with feeding, burping, and holding newborn babies! Still, with a little guidance to get me back into the swing of things, I got it down okay.
Perfection. That's all I can say about holding a sleeping baby in my arms. Finally, I had exhausted my upright time and had to reluctantly turn Claire over to Carrie.
It was way past my nap time, I had actually lost track of time when I was over there (which I never do), and I wasn't having extreme autonomic symptoms.
Yes, last night I paid a price. I was sick, tired, and needed to take extra medication to deal with the added nausea and agitated autonomic nervous system.
Still, I did sleep last night, only to wake up and have another 'good day' today. How often does that happen?
So, I soaked it in again. I did have a counseling session with my therapist (who comes to my house every few weeks), but it was a good one. She reminded me to keep seeking out joy, to keep making these activities that nourish me my number one priority.
And, while normally this would be the only thing I would do in a single day, I instead had energy to sit on the patio outside in the glorious weather wearing an all new outfit just purchased by Mom on her shopping extravaganza (well, not quite an extravaganza, but I needed clothes that fit!).
I threw the ring to Asher, watching him frolic and play, stop for a drink of water and trying to decide whether to bring the ring to me or to Mom. I ate watermelon out on the patio. I went for a walk with Mom after dinner to the 'bush' that is my new milestone in walking distance. (Next time I'm going to remember to take my pedometer with me!)
One day when I made it to this location, I sat in the grass with Anne and waited for Miss Alexandra to arrive and meet me there on her way home from school. When she spotted me, she hollered: "Miss Emily! Miss Emily! Look how far you walked today!" This little girl has the most gentle spirit for a 9-year old child. She's so incredibly perceptive, caring, and loving--always wanting to know how Miss Emily is feeling, or feeling sad that Miss Emily is sick.
I want to write this post because I want to remember that I can have these moments. I want to remember what my Mommy Bev told me. She told me that each of these moments is like a little bit of Spring. She told me that we often have long periods of Winter with this illness, but we do get moments of Spring.
And someday, she believes, it will be Spring every day.
I have to believe this to keep going, to keep facing the treatment.
I just finished listening to the book Kira-Kira in which a young girl dies of lymphoma. (I highly recommend this well-written, Newberry award winning book.) Her sister, Katie, realizes that Lynn wanted to keep living, even through all of her suffering because she still wanted those little moments when she could eat something, watch the sky, or be read to.
That part of the book really spoke to me because that is why I keep fighting. The moments that are life here on earth are worth fighting for. The trick for me is to literally seize the moment, however fleeting it is, that I feel well enough to physically and emotionally experience joy. I have to consciously let whatever else is on my to-do list fall off of my radar screen and soak up the joy because I never know how long a 'good' moment will last or when the next one will come. (My next step in therapy is to get past feeling guilty, lazy or selfish for following my joyful heart first over other things!)
I'm still sad that joy always has a physical consequence for me. I'm sad that when the physical storm hits so does an emtional one--sadness, frustration and sometimes even anger.
While there shouldn't be a consequence for joy, I'm still going to keep making efforts to seek it out. That way, each week before my next bicillin shot, I'll have something to hold on to, something to remind me that things can and will get better, and that Spring will come again.
There's nothing like a new baby or a playful dog to remind us of what life is all about, and that Spring is possible.
Blessings and joy,
Emily
Or perhaps, it isn't so much that I forgot how, but I couldn't figure out how to do it within the restraints of feeling so, so sick all of the time.
When Davidson made it to the NCAA tournament in March and then all the way to the Elite Eight, something ignited inside me. I was going to watch those games, cheer my heart out and pay whatever price I had to pay afterwards. Every game made me sicker, every game had a consequence, but every game reminded me that joy and fun were possible.
Ever since then, I've been making a concerted effort to make time for and to seek out joy in my life. Maybe it sounds strange, especially to those of you who know me as someone who is usually fairly upbeat, positive, cheerful, etc. to imagine that I wasn't actually experiencing joy much.
Since many of my blogs can be a bit sad or down-hearted, I wanted to share the joy I have experienced. In between each of my shots, I am sometimes getting little 'breaks' when I feel 'better' (better is a relative term here!).
This weekend the cold, rainy days finally turned to perfect, gorgeous weather. Everything is green, everything is blooming, the sun is shining.
Our neighbors have lived across the street from us ever since we moved here--I grew up playing with their children, running back and forth between their house and ours. Their daughter, Carrie, and I have always been friends but rarely get to see each other.
Two weeks ago, I was able to stop over at our neighbor's house to see Carrie and her six week old baby, Claire. This was the first time I knew something was changing with the Lyme treatment because I sat upright, holding a baby! Plus, I was at someone else's house other than my own. Also, for me, a being with children and babies is tops on my list of 'best things in life.' It had been about 5 years since I last held a newborn--another neighbor's child.
On Saturday, I spotted Carrie over at her parent's house again and headed on over to see her and Claire. When I arrived Claire was asleep. When she awoke, they let me be the one to pick her up, soothe her, give her a bottle, burp her and hold her as she slept in my arms. All the while, I got to catch up with Carrie and her mom, Brenda.
Admittedly, I'm a little out of practice with feeding, burping, and holding newborn babies! Still, with a little guidance to get me back into the swing of things, I got it down okay.
Perfection. That's all I can say about holding a sleeping baby in my arms. Finally, I had exhausted my upright time and had to reluctantly turn Claire over to Carrie.
It was way past my nap time, I had actually lost track of time when I was over there (which I never do), and I wasn't having extreme autonomic symptoms.
Yes, last night I paid a price. I was sick, tired, and needed to take extra medication to deal with the added nausea and agitated autonomic nervous system.
Still, I did sleep last night, only to wake up and have another 'good day' today. How often does that happen?
So, I soaked it in again. I did have a counseling session with my therapist (who comes to my house every few weeks), but it was a good one. She reminded me to keep seeking out joy, to keep making these activities that nourish me my number one priority.
And, while normally this would be the only thing I would do in a single day, I instead had energy to sit on the patio outside in the glorious weather wearing an all new outfit just purchased by Mom on her shopping extravaganza (well, not quite an extravaganza, but I needed clothes that fit!).
I threw the ring to Asher, watching him frolic and play, stop for a drink of water and trying to decide whether to bring the ring to me or to Mom. I ate watermelon out on the patio. I went for a walk with Mom after dinner to the 'bush' that is my new milestone in walking distance. (Next time I'm going to remember to take my pedometer with me!)
One day when I made it to this location, I sat in the grass with Anne and waited for Miss Alexandra to arrive and meet me there on her way home from school. When she spotted me, she hollered: "Miss Emily! Miss Emily! Look how far you walked today!" This little girl has the most gentle spirit for a 9-year old child. She's so incredibly perceptive, caring, and loving--always wanting to know how Miss Emily is feeling, or feeling sad that Miss Emily is sick.
I want to write this post because I want to remember that I can have these moments. I want to remember what my Mommy Bev told me. She told me that each of these moments is like a little bit of Spring. She told me that we often have long periods of Winter with this illness, but we do get moments of Spring.
And someday, she believes, it will be Spring every day.
I have to believe this to keep going, to keep facing the treatment.
I just finished listening to the book Kira-Kira in which a young girl dies of lymphoma. (I highly recommend this well-written, Newberry award winning book.) Her sister, Katie, realizes that Lynn wanted to keep living, even through all of her suffering because she still wanted those little moments when she could eat something, watch the sky, or be read to.
That part of the book really spoke to me because that is why I keep fighting. The moments that are life here on earth are worth fighting for. The trick for me is to literally seize the moment, however fleeting it is, that I feel well enough to physically and emotionally experience joy. I have to consciously let whatever else is on my to-do list fall off of my radar screen and soak up the joy because I never know how long a 'good' moment will last or when the next one will come. (My next step in therapy is to get past feeling guilty, lazy or selfish for following my joyful heart first over other things!)
I'm still sad that joy always has a physical consequence for me. I'm sad that when the physical storm hits so does an emtional one--sadness, frustration and sometimes even anger.
While there shouldn't be a consequence for joy, I'm still going to keep making efforts to seek it out. That way, each week before my next bicillin shot, I'll have something to hold on to, something to remind me that things can and will get better, and that Spring will come again.
There's nothing like a new baby or a playful dog to remind us of what life is all about, and that Spring is possible.
Blessings and joy,
Emily
Photo: Row of Forsythia bushes blooming earlier this spring in our yard. Miss Alexandra exclaimed one day: "Oh, your forsythia bushes are really beautiful!" I don't think I knew they were even called forsythia when I was in 4th grade (or for that matter even appreciated their beauty)?!
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