When a loved one hurts and we can’t fix it, it’s frustrating. In our last bible study, we spent some time talking about that frustration. About a parent’s struggle with their inability to help their grown children through their problems. The grown up problems we face are far beyond the skinned knees made better by Scooby-Do band-aids and kisses. I left that study and began thinking about the first time I was sick and far away from home.
I spent my first year out of high school as a ‘real’ college student at Mizzou. I lived in the dorm and got very sick. My mom hated that I was so far away. Honestly for that week I really did too. After a couple days of misery, I got a call from the front desk to let me know I had a delivery waiting. A friend and I made our way down to find “Get Well Soon” balloons tied to a large white box with a package of handy-wipes taped to the top. Handy-wipes? Who? Why? The questions came to my mind as well as others in view of the package.
It was delivered by a local grocery store and they had placed a note outside the card. Their post-it stated, “We don’t have washcloths in the store, this is the closest we could find. Hope it will do.” The card inside identified the culprit and answered the questions. It was from my Mom and read “..I just wish I could be there to at least give you a cold washcloth for your forehead.” The big white box was filled with chocolate cupcakes.
Chocolate cupcakes certainly wouldn’t make me better, but it was blessed assurance I would not be alone in a college dorm. A cold washcloth couldn’t fix it either, but it might have been comforting. Mom was frustrated she couldn’t make me better and frustrated even more that her attempt to comfort missed the mark. Handy-wipes, however, were funny. We laughed and to this day they still make me smile and giggle a bit.
That’s often the case, isn’t it? Our attempts to change the circumstances of a loved one fail. Our efforts to comfort seem as though they are never enough and often don‘t quite hit the target we intend. Our actions do count, though, and sometimes God blesses our aim in a direction only he knows is needed. Handy-wipes weren’t suited for the forehead, but they have been good for my heart.
Mr. 1inamillion resumes chemo in three days and I am helpless. There is little I can do to calm his fears and there will be less I can do to comfort him once he’s sick. I will try, though. Sunday I will bake; an attempt to greet new and old friends, to kiss up to the nurses. Tomorrow I will paint, in hopes of brightening the space in which he will spend so much time resting and recovering. Thing 1 and 2 will no doubt want to help.
Lord, please bless our aim. And maybe send handy-wipes.
Delivery Confirmation
This post is a follow up to But Wait! There's More! Thing 1 has completed another test on his kidneys and we think we have received our answer. The ultrasound showed his kidneys enlarged but everything else has proven normal and there has been no more blood since that one evening. His doctor believes it was probably a stone that passed and wants to follow up with another ultrasound in a few months just to double check the size of his kidneys.
If you read But Wait! There's More! you know that I cried out to God with a deadline. I wanted a solution for Thing 1's kidneys before Mr. 1inamillion starts chemo on May 3rd.
Dear God,
Thank you, Lord, for hearing my cries. You are an awesome God. I am so grateful for the express delivery! Thank you for blessing us with Gabe and Lucy. I lift Dane to you and ask for you to please bless this family with continued healing.
Love,
AJ
If you read But Wait! There's More! you know that I cried out to God with a deadline. I wanted a solution for Thing 1's kidneys before Mr. 1inamillion starts chemo on May 3rd.
Dear God,
Thank you, Lord, for hearing my cries. You are an awesome God. I am so grateful for the express delivery! Thank you for blessing us with Gabe and Lucy. I lift Dane to you and ask for you to please bless this family with continued healing.
Love,
AJ
Meet Fibro
I mentioned in an earlier post on the blog that I have fibromyalgia. For many family and friends, this was the first they had probably heard that news. This sparked a concerned call from one of my great aunts and two thoughts for me. First, “awesome, someone far away read what I wrote!” followed by, “Oops.”
Yes, I do have fibromyalgia. I don’t mention it much because on most days, and certainly in the grand scheme of things, it’s not much more than a nuisance. It’s a chronic pain syndrome that is just that. A pain. On most days I like to think I have it whipped into submission. When the weather’s steady and I’m behaving myself and in control of my schedule, fibro cries uncle.
It’s taught me to prioritize more than anything else. My energy is limited. I need at least seven hours of sleep and I’ve got to manage to squeeze in exercise or the pain gets worse. Every day I take my two prescription meds and fist full of supplements plus drink lots of water. I’ve learned to say no but still probably not as frequently as I should. And I’ve learned to live with a long to-do list that always remains undone.
Oh, and my medication doesn’t play well with alcohol. So more than anything fibromyalgia just makes me a bore with a messy house.
I can tell you that when the weather’s bad, I’m short on sleep, stuck sitting for far too long in one spot or just doing way too much, I hurt. And when I hurt, I think about the greats that have gone before me.
My grandma had rheumatoid arthritis. Her knuckles were the size of quarters and her fingers were at a 45 degree angle. Despite that I don’t recall that she ever complained. She did, however, manage to do the most beautiful cross stitch which still amazes us.
My mom was only 40 years old when Parkinson’s disease barged into her life. That’s a particularly cruel one that takes you from one extreme to another. Just take a look at Michael J. Fox and Muhammad Ali and you see it. Shaking, uncontrollable movements to paralysis. I remember her feet cramping and her toes curling so much that she would have to crawl through the house some mornings. She couldn’t control her face for a smile so she hated having her picture taken. It hurts my heart that I have so few photos to keep me company now that she is gone.
There are times I start to feel sorry for myself, which is just silly. At those moments I hold my aching hands out in front of me. They are straight. They move only when I want them to and only in the direction I intend. Thank you, Lord.
Yes, I do have fibromyalgia. I don’t mention it much because on most days, and certainly in the grand scheme of things, it’s not much more than a nuisance. It’s a chronic pain syndrome that is just that. A pain. On most days I like to think I have it whipped into submission. When the weather’s steady and I’m behaving myself and in control of my schedule, fibro cries uncle.
It’s taught me to prioritize more than anything else. My energy is limited. I need at least seven hours of sleep and I’ve got to manage to squeeze in exercise or the pain gets worse. Every day I take my two prescription meds and fist full of supplements plus drink lots of water. I’ve learned to say no but still probably not as frequently as I should. And I’ve learned to live with a long to-do list that always remains undone.
Oh, and my medication doesn’t play well with alcohol. So more than anything fibromyalgia just makes me a bore with a messy house.
I can tell you that when the weather’s bad, I’m short on sleep, stuck sitting for far too long in one spot or just doing way too much, I hurt. And when I hurt, I think about the greats that have gone before me.
My grandma had rheumatoid arthritis. Her knuckles were the size of quarters and her fingers were at a 45 degree angle. Despite that I don’t recall that she ever complained. She did, however, manage to do the most beautiful cross stitch which still amazes us.
My mom was only 40 years old when Parkinson’s disease barged into her life. That’s a particularly cruel one that takes you from one extreme to another. Just take a look at Michael J. Fox and Muhammad Ali and you see it. Shaking, uncontrollable movements to paralysis. I remember her feet cramping and her toes curling so much that she would have to crawl through the house some mornings. She couldn’t control her face for a smile so she hated having her picture taken. It hurts my heart that I have so few photos to keep me company now that she is gone.
There are times I start to feel sorry for myself, which is just silly. At those moments I hold my aching hands out in front of me. They are straight. They move only when I want them to and only in the direction I intend. Thank you, Lord.
Be a Tree
I discovered a book of short stories by Philip Gulley, Front Porch Tales, when we lived in Fort Wayne, Indiana. After that I found two more and this Quaker pastor began holding my hand in many a waiting room. His stories about small town living, family and faith were worth repeating. It turns out Indiana small towns are a lot like Kansas small towns so his tales were comforts of home.
We packed up and left Indiana, moving to Gainesville Florida in 1999, then closer to home in Derby Kansas in 2001 and settled here to Douglass, KS in December of ‘03.
We were closer to home when Mr.1inamillion was diagnosed with sarcomas 2 and 3, however I was alone again in a waiting room. This time it was in Kansas City and I fell apart. (Well, as much as I do.) We had been through this drama once before and quite frankly, we wanted it left in Indiana. I was overwhelmed with memories and fear for how hard this would be on our young children. They sent in someone who specialized in children education to ‘prepare me’ for talking with them and I began praying adamantly. Please, Lord, let this be easy on my children.
Later days ahead, still adamantly praying for ease, someone emailed me a bible verse for comfort. I wanted to read the text surrounding it and I’m ashamed to admit it, had to go on a hunt to do so. I was very pregnant with Lucy when we last moved, so there was a lot that was never unpacked and sadly was not missed. The search led me to the basement storage room that was in need of a light bulb.
Balancing on top of boxes on top of a chair, I changed the light bulb and looked down. Right in front of me was an open box of books, my bible staring me in the face alongside my copy of Front Porch Tales. So essentially I saw the light and God spoke to me. And He told me to shut up.
The verse I received was Jeremiah 29:11, but truly the real words He had for me at that moment came from Pastor Gulley.
The first story in Front Porch Tales is about an old neighbor and his method of plant husbandry. Young Phil’s neighbor had 10 acres he intended to become a forest. Old Doctor Gibbs planted trees but refused to water them. His theory? Watering made weak trees with shallow roots. Trees that had to search for water on their own gained deep roots and grew granite strong. The neighbor even beat his young trees with a newspaper, to weed out the sissies. His story continues to talk of wimpy trees he planted and babied as an adult, versus the strong forest of Dr. Gibbs. He spoke of praying for his children; of changing his prayer that their lives will be easy because life inevitably has storms that hit us at the core. He sums it up by stating we need to pray for roots that reach deep into the Eternal so that when those storms hit, we won’t be swept away.
God’s message was clear and I got it. And it got me thinking. My roots had grown deep in the church we were again attending with my children. And they grew deeper still amidst the challenges Parkinson’s Disease had dealt my mother. Yup, Thing 1 and Thing 2 would be just fine.
You won’t hear me apologize to them when they complain life is unfair. You might, however, over hear the charge, “Be a tree! Let’s bend in the wind & go with the flow,” when we are forced to change course. We are strong because we’re flexible, I tell them. I don’t dare attempt to explain that they’re growing deep roots so they can weather future storms. When the opportunity is there, though, I do throw in a story of my own about growing up with Grandma.
We packed up and left Indiana, moving to Gainesville Florida in 1999, then closer to home in Derby Kansas in 2001 and settled here to Douglass, KS in December of ‘03.
We were closer to home when Mr.1inamillion was diagnosed with sarcomas 2 and 3, however I was alone again in a waiting room. This time it was in Kansas City and I fell apart. (Well, as much as I do.) We had been through this drama once before and quite frankly, we wanted it left in Indiana. I was overwhelmed with memories and fear for how hard this would be on our young children. They sent in someone who specialized in children education to ‘prepare me’ for talking with them and I began praying adamantly. Please, Lord, let this be easy on my children.
Later days ahead, still adamantly praying for ease, someone emailed me a bible verse for comfort. I wanted to read the text surrounding it and I’m ashamed to admit it, had to go on a hunt to do so. I was very pregnant with Lucy when we last moved, so there was a lot that was never unpacked and sadly was not missed. The search led me to the basement storage room that was in need of a light bulb.
Balancing on top of boxes on top of a chair, I changed the light bulb and looked down. Right in front of me was an open box of books, my bible staring me in the face alongside my copy of Front Porch Tales. So essentially I saw the light and God spoke to me. And He told me to shut up.
The verse I received was Jeremiah 29:11, but truly the real words He had for me at that moment came from Pastor Gulley.
The first story in Front Porch Tales is about an old neighbor and his method of plant husbandry. Young Phil’s neighbor had 10 acres he intended to become a forest. Old Doctor Gibbs planted trees but refused to water them. His theory? Watering made weak trees with shallow roots. Trees that had to search for water on their own gained deep roots and grew granite strong. The neighbor even beat his young trees with a newspaper, to weed out the sissies. His story continues to talk of wimpy trees he planted and babied as an adult, versus the strong forest of Dr. Gibbs. He spoke of praying for his children; of changing his prayer that their lives will be easy because life inevitably has storms that hit us at the core. He sums it up by stating we need to pray for roots that reach deep into the Eternal so that when those storms hit, we won’t be swept away.
God’s message was clear and I got it. And it got me thinking. My roots had grown deep in the church we were again attending with my children. And they grew deeper still amidst the challenges Parkinson’s Disease had dealt my mother. Yup, Thing 1 and Thing 2 would be just fine.
You won’t hear me apologize to them when they complain life is unfair. You might, however, over hear the charge, “Be a tree! Let’s bend in the wind & go with the flow,” when we are forced to change course. We are strong because we’re flexible, I tell them. I don’t dare attempt to explain that they’re growing deep roots so they can weather future storms. When the opportunity is there, though, I do throw in a story of my own about growing up with Grandma.
But Wait! There's More!
Yesterday I am working in my basement office when Dane lets out a stressful yell, “We need your presence upstairs, please!” I run up the stairs to where they are, in the bathroom, and learn that Thing 1 has peed blood.
At that moment I honestly hear in my head the late great pitch-man Billy Mays, “But Wait! There’s more!”
You have carpal tunnel syndrome. But wait! There’s more!
With that, you also get fibromyalgia. But wait! There’s more!
Hubby gets tumors number 2 and 3. But wait! There’s more!
You also get a fabulously flooded basement. We’re not done yet. With this exclusive offer you also receive……
Tumor number 4 for Hubby. But wait! There’s more!
Thing 2 swallows a battery. And that’s not all!
Leaking pipes. Another flood in the basement! But wait! There’s more!
Hubby gets tumors 5, 6, and 7. But wait! There’s more!
Thing 1 has something new and mysterious with his kidneys!
Seriously?!
…..We are seen quickly in the emergency room and they find nothing alarmingly wrong so we are sent home. We saw a new pediatrician today who reiterates most of the tests looks great but he is concerned with the ultrasound completed, as Gabe’s kidneys are enlarged and his bladder isn’t completely emptying. Another not so fun test is to be had on Friday by Thing 1. After that, we will hopefully get our marching orders on what comes next.
Please Lord,
Can you please send angel Billy Mays packing? I’m calling You now, I’m not holding out for any additional bonus offers there may be. Oh, and what are my options for express shipping? Mr.1inamillion starts chemo May 3rd so delivery on a solution for Thing 1’s kidneys is wanted before then.
Thank you,
AJ
At that moment I honestly hear in my head the late great pitch-man Billy Mays, “But Wait! There’s more!”
You have carpal tunnel syndrome. But wait! There’s more!
With that, you also get fibromyalgia. But wait! There’s more!
Hubby gets tumors number 2 and 3. But wait! There’s more!
You also get a fabulously flooded basement. We’re not done yet. With this exclusive offer you also receive……
Tumor number 4 for Hubby. But wait! There’s more!
Thing 2 swallows a battery. And that’s not all!
Leaking pipes. Another flood in the basement! But wait! There’s more!
Hubby gets tumors 5, 6, and 7. But wait! There’s more!
Thing 1 has something new and mysterious with his kidneys!
Seriously?!
…..We are seen quickly in the emergency room and they find nothing alarmingly wrong so we are sent home. We saw a new pediatrician today who reiterates most of the tests looks great but he is concerned with the ultrasound completed, as Gabe’s kidneys are enlarged and his bladder isn’t completely emptying. Another not so fun test is to be had on Friday by Thing 1. After that, we will hopefully get our marching orders on what comes next.
Please Lord,
Can you please send angel Billy Mays packing? I’m calling You now, I’m not holding out for any additional bonus offers there may be. Oh, and what are my options for express shipping? Mr.1inamillion starts chemo May 3rd so delivery on a solution for Thing 1’s kidneys is wanted before then.
Thank you,
AJ
Not-so Troubled Heart
I am completely dependent on my phone’s VZNavigator. I’ve dubbed her Natasha and don’t go anywhere with out her. I adore her. If you and I are meeting somewhere that’s new to me but not to you, don’t bother with directions. I’ll politely nod and say ‘yeah, got it’ and thank you, but truly, I’m not listening. Give me the address, I will plug it in and Natasha will tell me to turn when it’s time to turn. Sometimes the route on which she’s leading me doesn‘t make sense, but I get there anyway. I’ve missed a turn on many occasions and she guides me to the next legal u-turn or through a new route. No need for me to remember anything or worry about what lies ahead. Natasha tells me what I need to know at the moment I need to know it.
“For My thoughts are not your thoughts, Nor are your ways My ways,” declares the Lord. (Isaiah 55:8)
“For I know the plans I have for you,“ declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” (Jeremiah 29:11)
These verses are absolutely true and proven in my life. I thank you, Lord, for that. He works in my life like Natasha works in my car. If I have His volume up and am listening, He’ll tell me where to turn at the moment I need to turn. He even gets me back on path after I‘ve failed to pay attention. His route RARELY makes sense, is rarely fast or the most fuel efficient, but I can look back on my life and see the very deliberate moves that have enabled me to continue forward through the more troubling parts of life.
Jobs I didn’t get left me open to the one that I finally did. The one that grants flexibility to balance all of our drama and gave me the most understanding boss ever. My mother passed in 2006, just months before Dane’s diagnosis in 2007. My heart still aches and I miss her everyday, but I will admit with tears in my eyes, her entry to Glory allows my father to be at our aid at any moment we need him. And there are a lot of those moments.
A unexpected check arrived in the mail from a friend who is too far away to give a hug or a meal but wanted to help. It put gas in the car to travel to see the right surgeon in St. Louis. A church love offering covered chemo expenses and travel costs to participate in a clinical trial a state away, giving us new hope.
God has plans for us. He holds us in the palm of his hand and provides for us. If I think about it, what lies ahead is scary, difficult and it will hurt for a while. So I won’t. (Okay, maybe occasionally but never for long.) I don’t wish to see the future or to know God’s plans. Some might mistake my not-so troubled heart for a lack of concern or a case of denial. It’s FAITH. I just have to move forward and He’ll tell me where to turn, when it’s time turn.
“For My thoughts are not your thoughts, Nor are your ways My ways,” declares the Lord. (Isaiah 55:8)
“For I know the plans I have for you,“ declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” (Jeremiah 29:11)
These verses are absolutely true and proven in my life. I thank you, Lord, for that. He works in my life like Natasha works in my car. If I have His volume up and am listening, He’ll tell me where to turn at the moment I need to turn. He even gets me back on path after I‘ve failed to pay attention. His route RARELY makes sense, is rarely fast or the most fuel efficient, but I can look back on my life and see the very deliberate moves that have enabled me to continue forward through the more troubling parts of life.
Jobs I didn’t get left me open to the one that I finally did. The one that grants flexibility to balance all of our drama and gave me the most understanding boss ever. My mother passed in 2006, just months before Dane’s diagnosis in 2007. My heart still aches and I miss her everyday, but I will admit with tears in my eyes, her entry to Glory allows my father to be at our aid at any moment we need him. And there are a lot of those moments.
A unexpected check arrived in the mail from a friend who is too far away to give a hug or a meal but wanted to help. It put gas in the car to travel to see the right surgeon in St. Louis. A church love offering covered chemo expenses and travel costs to participate in a clinical trial a state away, giving us new hope.
God has plans for us. He holds us in the palm of his hand and provides for us. If I think about it, what lies ahead is scary, difficult and it will hurt for a while. So I won’t. (Okay, maybe occasionally but never for long.) I don’t wish to see the future or to know God’s plans. Some might mistake my not-so troubled heart for a lack of concern or a case of denial. It’s FAITH. I just have to move forward and He’ll tell me where to turn, when it’s time turn.
I hate pink.
I hate pink. This isn’t news to those who know me, I’ve always hated pink. I grew up in a room decorated by my sister when she was six years old. Pink and red shag carpet with Pepto-Bismol coated walls. It was Pinkalicious’s dream come true and enough to turn me against all things girly until 2004.
When our daughter was born I planned to dress her in yellow, purple, green or blue, with maybe a pair of lacy socks and a headband to make it clear she was a she. Anything but pink. The fact was Lucy really did look prettier in pink. As soon as she could make her opinion heard, it was clear that she loved pink as much as her aunt Shelly, so I’ve come to accept pink in my life and in some cases, even like it.
The pink things that irritate me almost as much as the Pepto-Bismol walls of my childhood are the ribbons. Pink ribbons are everywhere. Races are ran, Save 2nd Base t-shirts are sold and I can’t even buy toilet paper without the opportunity to support the pink ribbon cause. Breast cancer awareness and research funding is everywhere. I do admit that it’s great. Medical research, whatever its original intent, benefits us all and I have two marvelous Aunts who have conquered breast cancer and so many others are affected. Yes, I agree, we should all join the rally for the cause. Right now, though, the cancer that continually kicks my butt has nothing to do my ta-ta’s.
My husband has soft tissue sarcoma. Less than 1% of cancer diagnoses are sarcoma and of that 1%, 15% are childhood cancers. So my husband really is one in a million. And his rare cancer is becoming not so much of a rare occurrence in our lives. In our nearly 13 year marriage, he’s been through 8 surgeries, two regimens of radiation, two regimens of chemo and, most recently, one clinical trial. Last week we learned that the study drug was not a success for him. The small tumors he has have grown a bit so he is off the trial and will soon begin chemo regimen number three.
So the pink ribbons that are everywhere really annoy me.
There is so little attention on rare cancers because, well, they are rare. I get it. When just one in a million are affected, it takes that one to yell ‘HEY! I’m here too, ya know. Where’s my stinking ribbon?! Someone, please, find my cure!’
Honestly, Dane’s not crying out for a ribbon. I’m thankful for that. Mrs. 1 in a million really doesn’t have time to launch a campaign or the energy to search through the ridiculous amount of ribbon campaigns to find a suitable color still available. (Seriously, google it. There‘s a lot.) I am, however, feeling a push to share my thoughts and our story. Perhaps begin to raise my hand, let out a little ‘yoo-hoo, we’re here too.‘ Maybe even answer the ‘I don’t know how you do it’ I frequently hear. So I am starting here with this blog and my rather bratty, and certainly unpopular, declaration of I hate pink.
When our daughter was born I planned to dress her in yellow, purple, green or blue, with maybe a pair of lacy socks and a headband to make it clear she was a she. Anything but pink. The fact was Lucy really did look prettier in pink. As soon as she could make her opinion heard, it was clear that she loved pink as much as her aunt Shelly, so I’ve come to accept pink in my life and in some cases, even like it.
The pink things that irritate me almost as much as the Pepto-Bismol walls of my childhood are the ribbons. Pink ribbons are everywhere. Races are ran, Save 2nd Base t-shirts are sold and I can’t even buy toilet paper without the opportunity to support the pink ribbon cause. Breast cancer awareness and research funding is everywhere. I do admit that it’s great. Medical research, whatever its original intent, benefits us all and I have two marvelous Aunts who have conquered breast cancer and so many others are affected. Yes, I agree, we should all join the rally for the cause. Right now, though, the cancer that continually kicks my butt has nothing to do my ta-ta’s.
My husband has soft tissue sarcoma. Less than 1% of cancer diagnoses are sarcoma and of that 1%, 15% are childhood cancers. So my husband really is one in a million. And his rare cancer is becoming not so much of a rare occurrence in our lives. In our nearly 13 year marriage, he’s been through 8 surgeries, two regimens of radiation, two regimens of chemo and, most recently, one clinical trial. Last week we learned that the study drug was not a success for him. The small tumors he has have grown a bit so he is off the trial and will soon begin chemo regimen number three.
So the pink ribbons that are everywhere really annoy me.
There is so little attention on rare cancers because, well, they are rare. I get it. When just one in a million are affected, it takes that one to yell ‘HEY! I’m here too, ya know. Where’s my stinking ribbon?! Someone, please, find my cure!’
Honestly, Dane’s not crying out for a ribbon. I’m thankful for that. Mrs. 1 in a million really doesn’t have time to launch a campaign or the energy to search through the ridiculous amount of ribbon campaigns to find a suitable color still available. (Seriously, google it. There‘s a lot.) I am, however, feeling a push to share my thoughts and our story. Perhaps begin to raise my hand, let out a little ‘yoo-hoo, we’re here too.‘ Maybe even answer the ‘I don’t know how you do it’ I frequently hear. So I am starting here with this blog and my rather bratty, and certainly unpopular, declaration of I hate pink.
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