We were shopping the clearance sales at Macy's. Darryl searched the racks for pants while I adjusted and re-adjusted Calvin in his stroller. His startling is bothering him so much lately. Mom and Dad Dedert were visiting and taking care of the rest of the kids while we spun out on this little date.
Beep, beep. Beep, beep. His little feeding pump was set off by a bubble of air. The people around us searching the racks looked a little closer. His white tube was suspended between his Dr. Seuss bag and his tummy. His eyes searched out the bright department store lights. Darryl focused on checkered pants and pleats or no pleats. I was caught up in the feeding pump and holding his arms tightly to relax his body, all the while tossing out my opinions. "No, too old-manish. Yup, like that color."
"Would you like an easy chair?" The employee of the suit department ushered me into the men's waiting area. "What's the tube for?" his concerned look was kind and fatherly. "It's a feeding tube," then as if sensing his next question I explained, "he has a neurological disorder." "He doesn't eat anything by mouth?" he asked surprised. "What are his problems?" I never quite know how to proceed, how do you dump a burden of sorrow onto a stranger's lap? How are they supposed to respond? "He can't move, he is nearly blind, he can't eat, but he can hear, loves music, and is adored by our family." He didn't have anything to say (and who can blame him) and offered, "I have a nine-month old grand-daughter." I bet he'll hug her a little tighter the next time he sees her.
Darryl had his pants picked out and we were off to pay. The cashier, Cara, looked curiously and carefully at Calvin. "How old is he?" I replied but knew she wanted more and really, wouldn't you rather have people care than ignore? I do. "Will he ever get better?" she asked expecting me to affirm. Sometimes looking for better makes us miss the good that's already here. I'd never been asked that before. My mind knows he won't but I carry on from day to day living in the present reality.
Maybe it's from the summer we've had thus far, a great summer. Calvin has been doing so well that I almost have forgotten how bad it gets. The weekend was a reminder that the summer is a reprieve from normal, not the new normal. We've enjoyed going to bed after Calvin, staying up to watch Lark Rise, waking up to a boy giggling in bed instead of screaming. It's been a new window into him, a sight of a boy contented and feeling well.
I might have forgotten about the storms he faces. I might have forgotten that hospice wasn't here just to help our family cope, but to help Calvin as he dies. I might have forgotten but a little storm sent reminded me quite quickly. It was early Sunday morning that Calvin woke blue and gasping. Another trip to ER to open his airways. Another trip home to care for him. And it's been another two days of caring for him as he coughs and chokes on secretions and struggles to find air.
Now I remember. I remember that Calvin is not going to get better. I remember that the reason he was photographed this morning along the beautiful banks of the Thornapple River is so we will have a memory. I remember how hard it is to see him choking and I remember how we flip-flopped in our decisions about his care.
My mind was spinning with all these things as we sat on the bank of the river this morning. Calvin sat in his chair listening to his brother, Noah, tap out merry tunes on his harmonica. All the while the photographer clicked away.
Beep, beep. Beep, beep. His little feeding pump was set off by a bubble of air. The people around us searching the racks looked a little closer. His white tube was suspended between his Dr. Seuss bag and his tummy. His eyes searched out the bright department store lights. Darryl focused on checkered pants and pleats or no pleats. I was caught up in the feeding pump and holding his arms tightly to relax his body, all the while tossing out my opinions. "No, too old-manish. Yup, like that color."
"Would you like an easy chair?" The employee of the suit department ushered me into the men's waiting area. "What's the tube for?" his concerned look was kind and fatherly. "It's a feeding tube," then as if sensing his next question I explained, "he has a neurological disorder." "He doesn't eat anything by mouth?" he asked surprised. "What are his problems?" I never quite know how to proceed, how do you dump a burden of sorrow onto a stranger's lap? How are they supposed to respond? "He can't move, he is nearly blind, he can't eat, but he can hear, loves music, and is adored by our family." He didn't have anything to say (and who can blame him) and offered, "I have a nine-month old grand-daughter." I bet he'll hug her a little tighter the next time he sees her.
Darryl had his pants picked out and we were off to pay. The cashier, Cara, looked curiously and carefully at Calvin. "How old is he?" I replied but knew she wanted more and really, wouldn't you rather have people care than ignore? I do. "Will he ever get better?" she asked expecting me to affirm. Sometimes looking for better makes us miss the good that's already here. I'd never been asked that before. My mind knows he won't but I carry on from day to day living in the present reality.
Maybe it's from the summer we've had thus far, a great summer. Calvin has been doing so well that I almost have forgotten how bad it gets. The weekend was a reminder that the summer is a reprieve from normal, not the new normal. We've enjoyed going to bed after Calvin, staying up to watch Lark Rise, waking up to a boy giggling in bed instead of screaming. It's been a new window into him, a sight of a boy contented and feeling well.
I might have forgotten about the storms he faces. I might have forgotten that hospice wasn't here just to help our family cope, but to help Calvin as he dies. I might have forgotten but a little storm sent reminded me quite quickly. It was early Sunday morning that Calvin woke blue and gasping. Another trip to ER to open his airways. Another trip home to care for him. And it's been another two days of caring for him as he coughs and chokes on secretions and struggles to find air.
Now I remember. I remember that Calvin is not going to get better. I remember that the reason he was photographed this morning along the beautiful banks of the Thornapple River is so we will have a memory. I remember how hard it is to see him choking and I remember how we flip-flopped in our decisions about his care.
My mind was spinning with all these things as we sat on the bank of the river this morning. Calvin sat in his chair listening to his brother, Noah, tap out merry tunes on his harmonica. All the while the photographer clicked away.
4 comments:
Just prayed for you. Thank you for sharring.
This was a great post for me to read - I never know whether to vocally acknowledge the special needs a little one might have when I'm out & about in order to avoid his/her parent feeling like I'm pretending those challenges don't exist...or to just let the conversation flow either way as they dictate.
And your thought that looking for life to get better in the future has us missing the present mercies - right on, my friend. Such an important thing to remember.
Looking forward to seeing the photos!
Looking forward to seeing those photos Kara. I praise God with you for the good times you have had this summer. I thank Him that He has given you these glimpses (and more) of the real Calvin. I pray that you will be able to remember these moments and days when you struggle through the more difficult times. Thanks again for sharing. I know you encourage me, and I've no doubt others as well. Take care of yourself and know you are loved.
How true, Karen! Kara's blogposts always encourage me to think about life from another perspective...you have a real gift of putting your thoughts into words, Kara! So sorry to read about your Sunday morning trip to ER and all the angst you again felt. Thankful Darryl's parents were with you to care for Sophie, Noah and Evie. Praying God will give you strength for each day and that all of you can continue to have good sleep at night. Soooo good to see all of you Sat. evening! Will be in touch...Love you much! Roelie
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