My Mom called me at work yesterday to tell me she was having trouble breathing. She'd been a bit winded at my house the day before, at least in part because she left her oxygen in her car. So I asked the obvious, "Are you wearing your oxygen?" "Of course I am!" she indignantly replied, as if to imply otherwise was nonsense (umm... see above.). I told her to call her doctor. "Well, what's HE going to do??" What, indeed, I think. As in, what am I supposed to do??
She called. The nurse then called me and informed me that my Mom sounded so short of breath on the phone that she recommended she go to the ER. She called my Mom, told her to go, and oddly, she went without argument.
Heaven bless my sister-in-law, who transported her and kept her company during the six hour wait and assessment. Her observations regarding ER waiting rooms were hysterical - among them noting that after a while, everybody on Judge Judy looks the same. I was able to arrive shortly after they decided Mom needed to be admitted again for congestive heart failure, and sis-in-law made it to work on time. I entertained Mom with a half-dozen games of Skip-Bo. It's a sure sign that you spend too much time in hospitals if you have a card game or two in your purse just in case.
While they were wheeling my mom up to her room, I got a call from my Dad's number, but couldn't take it until I got Mom settled. When I picked up the voice mail I was appalled, though not surprised to hear my stepmother telling me that my Dad had just been admitted to their local hospital, four hours away, for recurrent pneumonia.
Neither admission was a true crisis. But the ongoing decline in health of both of my parents is, clearly, a sad thing for me. Mom is on a 5 minute memory reset - I must have told her 4 times at least why she couldn't eat in the ER (waiting to have a test) and each time had to tell her what the test was for. She tried to call the nurse each time, and it was clear that they had also had the same conversation with her at least a couple of times before I got there. Dad has sounded increasingly winded each time I've spoken to him lately. I'm grateful that his wife is still strong enough to take care of him, since I'm too far away to be any help at all.
My parents are young. Mom is 74, Dad 76. I know I'm lucky, at 54, to have them at all. But lately it feels like they are racing each other to the finish line. I'm not sure at all what the winner gets, but I'm thinking it's lose/lose for me.
DeeDee
Tuesday, May 15, 2012
Monday, May 14, 2012
Happy Mother's Day.....
It WAS a happy day. My mom was there, although it took several reminders to make sure she made it. Curlygirl, BoosMommy and Babygirl were all there. Hubby made a roast chicken and a roast ham, with brownies with ice cream for dessert. The girls did the dishes. Boo got to practice her toddling. Squeaker was delightfully charming. Citygirl sent flowers, as did Babygirl and her dad!
The only work I did prior to the Mother's Day celebration was to load the food into the oven, since Hubby works on Sunday mornings.
And then, by 3 PM, it was over. Curlygirl and Hubby left for today's appointment in Philadelphia. The other girls and the babies went home. Mom and I had some coffee together, and she left.
So I did some work. I brought all the remaining dialysis crap downstairs for pickup later this week. I'd managed to forget just how heavy 22 pound boxes are! I was sweating when I finished. I took Simon for a walk, to the river park and the river walk, making sure to keep him away from the water - his spaniel side REALLY pushes him to chase ducks! I ate too many leftover brownies. I sat in my outdoor haven and read a little before the twilight faded completely. It was a good day.
I'm learning, mostly, to let the regret that it wasn't a completely "normal" day wash past me. I felt it more at Easter, when the pressure of what is usually a happy, quiet holiday hit me harder. Learning to fit family time into a significantly truncated day has been challenging, and I found it impossible to simply relax and let the day flow as best it could. I did better yesterday. I'll do better next time.
Besides, the next holiday is Memorial Day. Camping IS relaxing! Okay, it's a germ extravaganza, and the first attempt since Babygirl's diagnosis, but at least we aren't hauling the dialysis machine along. Hand sanitizer....hand sanitizer....hand sanitizer....
Hmmm....
I'm clearly still having stress management issues LOL.
DeeDee
The only work I did prior to the Mother's Day celebration was to load the food into the oven, since Hubby works on Sunday mornings.
And then, by 3 PM, it was over. Curlygirl and Hubby left for today's appointment in Philadelphia. The other girls and the babies went home. Mom and I had some coffee together, and she left.
So I did some work. I brought all the remaining dialysis crap downstairs for pickup later this week. I'd managed to forget just how heavy 22 pound boxes are! I was sweating when I finished. I took Simon for a walk, to the river park and the river walk, making sure to keep him away from the water - his spaniel side REALLY pushes him to chase ducks! I ate too many leftover brownies. I sat in my outdoor haven and read a little before the twilight faded completely. It was a good day.
I'm learning, mostly, to let the regret that it wasn't a completely "normal" day wash past me. I felt it more at Easter, when the pressure of what is usually a happy, quiet holiday hit me harder. Learning to fit family time into a significantly truncated day has been challenging, and I found it impossible to simply relax and let the day flow as best it could. I did better yesterday. I'll do better next time.
Besides, the next holiday is Memorial Day. Camping IS relaxing! Okay, it's a germ extravaganza, and the first attempt since Babygirl's diagnosis, but at least we aren't hauling the dialysis machine along. Hand sanitizer....hand sanitizer....hand sanitizer....
Hmmm....
I'm clearly still having stress management issues LOL.
DeeDee
Thursday, May 10, 2012
Week Fifty-five - "The Reveal" Is Coming.......
I found this in my inbox today, from Make-A-Wish:
We are getting excited and hope you are all doing well!!"
Well, DANG, I AM excited! We still don't know which of her wishes will be granted - so I'm a little nervous!
And remember - it's a SECRET! Don't tell Babygirl!
DeeDee
"Hi there! Can you keep a secret? We are ready to grant Ana's wish!! But we don't want you to tell her that yet. I need a few things from you first:
1.) We would like to reveal her wish on 6/1/12 - it's a Friday - would this work for you?
2.) Who would you like to invite to the reveal party?
3.) Does Babygirl have any food restrictions at this time?
4.) Anything else you can think of that we would need to consider when planning?
We are getting excited and hope you are all doing well!!"
Well, DANG, I AM excited! We still don't know which of her wishes will be granted - so I'm a little nervous!
And remember - it's a SECRET! Don't tell Babygirl!
DeeDee
Tuesday, May 8, 2012
Writing Letters......
I'm behind in my letter writing. No big surprise, really - we've been a bit busy and dreadfully self-involved. I'm behind on thank you notes (and I was doing a pretty good job of keeping up with those). I need to write a letter to Dinah, our Compassion child.
But the letter I really need to write is to Jorge's family. I don't know where or how to begin. After all, this letter is not about me, it's about them and the incredible gift they gave us. Do I tell them about Babygirl? If so, how much? What would I want to hear if I were them?
It's a conflicting internal conversation. Part of me would want to hear no more than "Thank you" and "Our child is doing well." Would I really want to hear about someone else being able to do all the things that my child, having died, will never be able to do? Or would it make me feel better to know that someone else's child can sleep better, eat better, swim, ride horses, ski, travel, plan for college....
They sent us a picture. I'd like to reciprocate that gesture. I'm not sure I should. If I do, just her? A family shot?
And I need to involve Babygirl in the process. I'm sure a note from her would mean far more than anything I could possibly say, but how do I approach this with her?
I'm not usually particularly indecisive. And when I am, I usually end up figuring out what exactly has had me holding off on doing something. I'm having a hard time picking my own brain on this, but at least part of it has to do with a deep and basic personality flaw: I have trouble asking for and receiving help from others. I don't like to feel obligated, indebted. I like to stand on my own two feet, thank you very much, and I'm not fond of "crutches" of any kind. I don't like contemplating how badly I've been crippled this year - emotionally, physically, financially and even spiritually. Crutches, hell! I've needed mental wheelchairs, financial ambulances and spiritual hospitalization!
I can't repay any of it. I think it's time to order a death certificate for my pride and get over myself.
DeeDee
But the letter I really need to write is to Jorge's family. I don't know where or how to begin. After all, this letter is not about me, it's about them and the incredible gift they gave us. Do I tell them about Babygirl? If so, how much? What would I want to hear if I were them?
It's a conflicting internal conversation. Part of me would want to hear no more than "Thank you" and "Our child is doing well." Would I really want to hear about someone else being able to do all the things that my child, having died, will never be able to do? Or would it make me feel better to know that someone else's child can sleep better, eat better, swim, ride horses, ski, travel, plan for college....
They sent us a picture. I'd like to reciprocate that gesture. I'm not sure I should. If I do, just her? A family shot?
And I need to involve Babygirl in the process. I'm sure a note from her would mean far more than anything I could possibly say, but how do I approach this with her?
I'm not usually particularly indecisive. And when I am, I usually end up figuring out what exactly has had me holding off on doing something. I'm having a hard time picking my own brain on this, but at least part of it has to do with a deep and basic personality flaw: I have trouble asking for and receiving help from others. I don't like to feel obligated, indebted. I like to stand on my own two feet, thank you very much, and I'm not fond of "crutches" of any kind. I don't like contemplating how badly I've been crippled this year - emotionally, physically, financially and even spiritually. Crutches, hell! I've needed mental wheelchairs, financial ambulances and spiritual hospitalization!
I can't repay any of it. I think it's time to order a death certificate for my pride and get over myself.
DeeDee
Saturday, May 5, 2012
Week Fifty-four - Extravagant Generosity......
Our church is reading a devotional guide called Practicing Extravagant Generosity by Robert Schnase. I'm supposed to be doing one reading a day, but I took it with me to Philly and had time to read the entire thing. In a reading called "First Things First" the author discusses how everyone seems to think that if they just had 20% more income, they'd be happy. Nearly everybody, rich and poor alike, seem to be reaching for "just a little" more. Mr. Schnase declares, "This is a prescription for never-ending unhappiness."
I became ill at the end of 2010. Prior to that I had a salaried position with productivity bonuses, and I worked at least one extra day in a non-contract (ie overtime) position in each pay period. In 2011, I was paid for 80 hours per pay period, my base salary, representing an overall loss of about 10% of my income. Near the end of 2011 I re-negotiated my contract to reflect my ongoing level of disability, and now I receive 80% of my base pay, nearly 30% less than my 2010 income.
My hubby and I have always been givers. We have a monthly pledge to our church, we serve spend a week each year working with the Appalachia Service Project (http://asphome.org/), we sponsor a child through Compassion International (http://www.compassion.net/), we help serve food to the needy, and we toss a few bucks in special collections when asked. Despite our declining income, we have not decreased our giving substantially (except perhaps that we have less in our pockets at any given moment that we used to LOL). I could be proud of this, except....
We could have done better. We could have given more. We were both raised in households that were lower middle class, and our parents made commitments to give 10%. Somehow, 10% of a bigger income seemed like a LOT of money, or maybe it was the "it's mine so why should I share it" mentality that creeps into our American culture - the underlying discontent that makes us compare ourselves to "The Lifestyles of the Rich and Famous" and feel that we come up lacking somehow.
But Schnase suggests that "(b)y provoking us to give, God is not trying to take something away from us; God is seeking to give something to us." Redefining our priorities allows us to become free of material concerns.
We've seen this, this year. We've had to redefine for ourselves what matters. Nothing that we've had to give up in the budget matters. Nothing. And we've been the recipients of so many heart-felt gifts from others (not the least of which was Babygirl's new kidney!) that I could truly cry for joy for it all.
And the most interesting thing about this, to me, is that because of the drop in income, we are now approaching giving 10% of our take-home pay. And we are making a commitment to increase to that point, with an aim, over the next few years, to hit 10% of the total.
Over lunch today, Hubby suddenly asked me, "What would have happened to Babygirl if she weren't with us?" The answer is simple: "She'd be dead." The same is likely true for Curlygirl. It's the truth for hundreds of thousands and more kids all over the world. Starvation, disease, lack of clean water - these things kill as many as half of the children under 5 in developing countries.
Our next step toward closing the gap in giving will be to sponsor another child. Our current Compassion kid, Dinah, has been part of our family for nearly 5 years. It's time to adopt another.
Hubby and I have learned the hard way that you can't save them all. But we can save one more. And if even half of the people who read this save one too? That would be Extravagant Generosity indeed. Visit http://www.compassion.net/ and see if someone there is calling for your help.
DeeDee
I became ill at the end of 2010. Prior to that I had a salaried position with productivity bonuses, and I worked at least one extra day in a non-contract (ie overtime) position in each pay period. In 2011, I was paid for 80 hours per pay period, my base salary, representing an overall loss of about 10% of my income. Near the end of 2011 I re-negotiated my contract to reflect my ongoing level of disability, and now I receive 80% of my base pay, nearly 30% less than my 2010 income.
My hubby and I have always been givers. We have a monthly pledge to our church, we serve spend a week each year working with the Appalachia Service Project (http://asphome.org/), we sponsor a child through Compassion International (http://www.compassion.net/), we help serve food to the needy, and we toss a few bucks in special collections when asked. Despite our declining income, we have not decreased our giving substantially (except perhaps that we have less in our pockets at any given moment that we used to LOL). I could be proud of this, except....
We could have done better. We could have given more. We were both raised in households that were lower middle class, and our parents made commitments to give 10%. Somehow, 10% of a bigger income seemed like a LOT of money, or maybe it was the "it's mine so why should I share it" mentality that creeps into our American culture - the underlying discontent that makes us compare ourselves to "The Lifestyles of the Rich and Famous" and feel that we come up lacking somehow.
But Schnase suggests that "(b)y provoking us to give, God is not trying to take something away from us; God is seeking to give something to us." Redefining our priorities allows us to become free of material concerns.
We've seen this, this year. We've had to redefine for ourselves what matters. Nothing that we've had to give up in the budget matters. Nothing. And we've been the recipients of so many heart-felt gifts from others (not the least of which was Babygirl's new kidney!) that I could truly cry for joy for it all.
And the most interesting thing about this, to me, is that because of the drop in income, we are now approaching giving 10% of our take-home pay. And we are making a commitment to increase to that point, with an aim, over the next few years, to hit 10% of the total.
Over lunch today, Hubby suddenly asked me, "What would have happened to Babygirl if she weren't with us?" The answer is simple: "She'd be dead." The same is likely true for Curlygirl. It's the truth for hundreds of thousands and more kids all over the world. Starvation, disease, lack of clean water - these things kill as many as half of the children under 5 in developing countries.
Our next step toward closing the gap in giving will be to sponsor another child. Our current Compassion kid, Dinah, has been part of our family for nearly 5 years. It's time to adopt another.
Hubby and I have learned the hard way that you can't save them all. But we can save one more. And if even half of the people who read this save one too? That would be Extravagant Generosity indeed. Visit http://www.compassion.net/ and see if someone there is calling for your help.
DeeDee
Friday, May 4, 2012
Home Again, Home Again....
(This post was originally written the day after we returned from the hospital. It got delayed because the other posts seemed more important. I couldn't figure out an easy way to make it current, and I like it, so here it is.)
We made it home Sunday afternoon, and spent Sunday evening recovering as best we could from three nights of broken hospital sleep. I returned to work today, and Hubby had to leave periodically, leaving Babygirl in phone contact with us and a neighbor. Curlygirl is sick and couldn't come over, and Boo is sick so Boo'sMom couldn't come. In a perfect world one of us would have totally had the day off, but hey, we are living proof that this is not a perfect world.
Babygirl is closer to "back to normal" each day. She ate dinner tonight, the first full meal I've seen her eat since Tuesday night. Teacher is coming tomorrow to continue her State testing. Life marches on.
I didn't see too many patients today - most were cancelled in case we didn't make it back from Philly. But needless to say, at least two had illnesses that made me have to consider using the medication that wiped out Babygirl's immune system.
And I used it.
Nothing has changed at all about what I know of the risks of the drug - I myself am allergic to it. What has changed is my personal experience, my personal awareness of the dangers. It doesn't merely impact THIS drug - I had to think a bit longer and a bit harder about ALL of the medications my patients were on today, double checking mentally to see what, if anything I can do about risks. And the answer did not surprise me: "Very little."
All I can do is be vigilant. I always warn my patients about common side effects of medications, but there is no way on earth even the fast-speaking commercial voiceovers can cover all the potential risks, and no way any patient would listen beyond the first three or four (or if they did, then no way the would ever take ANY medication. What sane person would?). The only other thing I can do is to ask my patients to be vigilant. Taking a moment to educate people on the common risks of their meds is easy. Figuring out where to draw the line on the rarer stuff is difficult. Frankly, if people knew ALL of the risks of medications, no one would take them.
I feel a bit like I'm in the Hunger Games: "And may the odds be EVER in your favor!"
DeeDee
We made it home Sunday afternoon, and spent Sunday evening recovering as best we could from three nights of broken hospital sleep. I returned to work today, and Hubby had to leave periodically, leaving Babygirl in phone contact with us and a neighbor. Curlygirl is sick and couldn't come over, and Boo is sick so Boo'sMom couldn't come. In a perfect world one of us would have totally had the day off, but hey, we are living proof that this is not a perfect world.
Babygirl is closer to "back to normal" each day. She ate dinner tonight, the first full meal I've seen her eat since Tuesday night. Teacher is coming tomorrow to continue her State testing. Life marches on.
I didn't see too many patients today - most were cancelled in case we didn't make it back from Philly. But needless to say, at least two had illnesses that made me have to consider using the medication that wiped out Babygirl's immune system.
And I used it.
Nothing has changed at all about what I know of the risks of the drug - I myself am allergic to it. What has changed is my personal experience, my personal awareness of the dangers. It doesn't merely impact THIS drug - I had to think a bit longer and a bit harder about ALL of the medications my patients were on today, double checking mentally to see what, if anything I can do about risks. And the answer did not surprise me: "Very little."
All I can do is be vigilant. I always warn my patients about common side effects of medications, but there is no way on earth even the fast-speaking commercial voiceovers can cover all the potential risks, and no way any patient would listen beyond the first three or four (or if they did, then no way the would ever take ANY medication. What sane person would?). The only other thing I can do is to ask my patients to be vigilant. Taking a moment to educate people on the common risks of their meds is easy. Figuring out where to draw the line on the rarer stuff is difficult. Frankly, if people knew ALL of the risks of medications, no one would take them.
I feel a bit like I'm in the Hunger Games: "And may the odds be EVER in your favor!"
DeeDee
Thursday, May 3, 2012
This Trip Brought to You By.......
Remember the money post? The one right before the emergency run to Philly? The one that said we had $33 and enough for one trip?
That trip was supposed to be a one day thing, one meal, one snack, one tank of gas. It ended up being TWO trips: One for three days with the accompanying meals for two people and two tanks of gas to cover trips to and from my sister-in-law's, and a second trip for follow up (with one meal/snack/tank). It came to more money than we had available.
But... I'm not kidding about God being good, all the time. Right after I posted our money status, I got home to find a check that I had written to one of the hospitals had been returned, uncashed, because our insurance had picked up the bill.
Medicare is WORKING. So we had exactly what we needed. I'm home from the recheck visit (her numbers are stable, she's going to school tomorrow thankyouverymuch), and we have $39 leftover. We don't need to make another trip until after payday.
I have $6 worth of fish pieces and crumbs. LOLOL.
DeeDee
That trip was supposed to be a one day thing, one meal, one snack, one tank of gas. It ended up being TWO trips: One for three days with the accompanying meals for two people and two tanks of gas to cover trips to and from my sister-in-law's, and a second trip for follow up (with one meal/snack/tank). It came to more money than we had available.
But... I'm not kidding about God being good, all the time. Right after I posted our money status, I got home to find a check that I had written to one of the hospitals had been returned, uncashed, because our insurance had picked up the bill.
Medicare is WORKING. So we had exactly what we needed. I'm home from the recheck visit (her numbers are stable, she's going to school tomorrow thankyouverymuch), and we have $39 leftover. We don't need to make another trip until after payday.
I have $6 worth of fish pieces and crumbs. LOLOL.
DeeDee
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