If you've read any of my blog, you know that I love inspirational stuff. I got this email from my mother which I opened today and wanted to share it with all of you. I'm learning everyday how not to wait for the perfect time and to live in the moment. Not knowing if my youngest will live to see adulthood is my reality and we don't "wait" to live...
A friend of mine opened his wife's underwear drawer and picked up a silk paper wrapped package:
'This, - he said - isn't any ordinary package.'
He unwrapped the box and stared at both the silk paper and the box.
'She got this the first time we went to New York, 8 or 9 years ago. She has never put it on , was saving it for a special occasion.
Well, I guess this is it.
He got near the bed and placed the gift box next to the other clothing he was taking to the funeral house, his wife had just died.
He turned to me and said:
'Never save something for a special occasion.
Every day in your life is a special occasion'.
I still think those words changed my life.
Now I read more and clean less.
I sit on the porch without worrying about anything.
I spend more time with my family, and less at work.
I understood that life should be a source of experience to be lived up to, not survived through.
I no longer keep anything.
I use crystal glasses every day...
I'll wear new clothes to go to the supermarket, if I feel like it.
I don't save my special perfume for special occasions, I use it whenever I want to.
The words 'Someday...' and ' One Day...' are fading away from my dictionary.
If it's worth seeing, listening or doing, I want to see, listen or do it now...
I don't know what my friend's wife would have done if she knew she wouldn't be there the next morning, this nobody can tell.
I think she might have called her relatives and closest friends.
She might call old friends to make peace over past quarrels.
I'd like to think she would go out for Chinese, her favorite food.
It's these small things that I would regret not doing, if I knew my time had come.
Each day, each hour, each minute, is special.
Live for today, for tomorrow is promised to no-one.
Stefanie
Sunday, October 4, 2009
So much to say....yet not much to tell...
Ok, so, we went to the nephrologist and had a kidney scan done. It was not a pretty sight. Luckily, this time Little M was sedated. Last time was a nightmare. I don't mean any 'ole nightmare...I mean heartbreaking, soul crushing, yelling, screaming and crying kind of nightmare.
After he was sedated, which the medicine they used the nurse's call "milk." It is a white medicine that is supposed to make you drowsy and fall asleep, but can be easily woken up. Not only that, but it is supposed to help you forget about what happens, in other words, him being cath'ed again. Well, it took the child 5 doses of the stuff to knock him out. The nurse's and tech's were amazed at how much it took.
Finally, he was out and I watched the nurse like a hawk as she cath'ed him to make sure it was being done in a sterile fashion. Last time, we ended up in the hospital for 5 days with a life-threatening kidney infection from a non-sterile cath. Even with all the sedative in him, he still squirmed and winced when they put a cath in him.
After all was said and done and he was out and cath'ed, my eyes were glued to the screen, watching as the lasix went into his kidney as I sat right next to him, holding his foot. I watched as the lasix went into his kidney and then down through the tube that connects the kidney to the bladder (ureter). At one point, the nurses/techs said "Oh, it's going into his bladder now." I said, "Nope, not yet." Sure enough, sadly I was right... His ureter filled and finally the contrast went into his bladder. His ureter was so big and with this only kidney he had, let me just say, it wasn't very good.
After he was sedated, which the medicine they used the nurse's call "milk." It is a white medicine that is supposed to make you drowsy and fall asleep, but can be easily woken up. Not only that, but it is supposed to help you forget about what happens, in other words, him being cath'ed again. Well, it took the child 5 doses of the stuff to knock him out. The nurse's and tech's were amazed at how much it took.
Finally, he was out and I watched the nurse like a hawk as she cath'ed him to make sure it was being done in a sterile fashion. Last time, we ended up in the hospital for 5 days with a life-threatening kidney infection from a non-sterile cath. Even with all the sedative in him, he still squirmed and winced when they put a cath in him.
After all was said and done and he was out and cath'ed, my eyes were glued to the screen, watching as the lasix went into his kidney as I sat right next to him, holding his foot. I watched as the lasix went into his kidney and then down through the tube that connects the kidney to the bladder (ureter). At one point, the nurses/techs said "Oh, it's going into his bladder now." I said, "Nope, not yet." Sure enough, sadly I was right... His ureter filled and finally the contrast went into his bladder. His ureter was so big and with this only kidney he had, let me just say, it wasn't very good.
I waited a week for the doctors to call me to find out what the next step would be. I got a call back from the urologist pretty quickly (same day!) and he said that Little M's ureter wasn't so good. The doctor wants to be on the conservative side because another surgery having to do with the ureter could make things worse instead of better. Little M's ureter is like a balloon full of water with a little tiny leak. The balloon tries to empty through this little leak but stays full because the hole doesn't get any bigger. The urologist is afraid that if he makes the little hole any bigger than it could lead to urine refluxing (going back up) in to the kidney.
The urologist suggested a test that will show Little M's true kidney function, but the nephrologist has to order it. So far, even though I absolutely love Little M's nephrologist, still no call back from him. I will be following up with him this week though.
The plan was to have the catheter out before Little M woke up, but that didn't happen. He woke up just a little bit too early and the nurse took it out while he was awake. Not a pretty sight. Like I said before, the medicine was supposed to make Little M forget what had happened....well, not my little one!
Later, after he was coming out and we had gotten home, I asked him what he remembered and he told me just about everything that had happened. I was in shock. Luckily, I keep meds on hand for painful urination and he took the meds pretty well. Probably because he is getting older and can understand a little more.
So....that's what has happened so far. The plan? Once I get a hold of the nephrologist, we will get the test ordered. After we get the results of the test, we will then test Little M about 3 months later and see if the numbers change. If the numbers change, then we will decide what to do after that. Options are limited and it looks as if he is headed for dialysis within the next 10 years (if we're lucky, otherwise, sooner).
For now, it's the hurry up and wait game.... this game SUCKS!
Stefanie
Stefanie
Friday, September 25, 2009
Watch the time
I've been having some issues from my teenager about him checking in on time. His excuse??? He doesn't have a watch. Oh, yes, he has a cell phone, however for some strange reason, the clock on his cell is somehow forgotten about.
Then I was introduced to a site called Blue Dial. It has so many watches that are "in style" at extreme discounts! Click here to view a bunch of their casio G-shock watches.
Personally, I think my son could use this one:
It has a leather strap and also has an ALARM!!! Yes, just what he needs so that he can check in on time. Hmmmmm.... Christmas is coming....maybe if he's good, he'll get one.
Are all teenagers so picky and sassy? If I ever spoke to my parents the way he speaks to me sometimes, I would have gotten grounded our back-handed! I must admit, it is partly my fault...I take partial blame, but he is 17 now and he needs to learn responsibility. That includes checking in on time! Without lip! It's always: "Mom, why do I have to check in every hour and a half??? My friends don't have to check in at all..." I tell him that I am an involved parent and until he turns 18 and moves out on his own, he is to follow the house rules; which includes checking in on time.
I think he wants out of the house because it hurts him to deal with his youngest brother's syndrome, even though Little M looks "normal," the Big T knows that Little M is sick. I also think it has a lot to do with the fact that he is a teenager. It is what I call the "Me, Me, I Syndrome." He always tells me: "I am the son (sun), so you should revolve around me." How arrogant is that?? As if I didn't have enough to deal with already.
I digress, the short of it, Big T needs a watch to tell time so he knows when he needs to check in! I'll be shopping around for Christmas...if, and that's a BIG if, he behaves.
Stefanie
Then I was introduced to a site called Blue Dial. It has so many watches that are "in style" at extreme discounts! Click here to view a bunch of their casio G-shock watches.
Personally, I think my son could use this one:
It has a leather strap and also has an ALARM!!! Yes, just what he needs so that he can check in on time. Hmmmmm.... Christmas is coming....maybe if he's good, he'll get one.
Are all teenagers so picky and sassy? If I ever spoke to my parents the way he speaks to me sometimes, I would have gotten grounded our back-handed! I must admit, it is partly my fault...I take partial blame, but he is 17 now and he needs to learn responsibility. That includes checking in on time! Without lip! It's always: "Mom, why do I have to check in every hour and a half??? My friends don't have to check in at all..." I tell him that I am an involved parent and until he turns 18 and moves out on his own, he is to follow the house rules; which includes checking in on time.
I think he wants out of the house because it hurts him to deal with his youngest brother's syndrome, even though Little M looks "normal," the Big T knows that Little M is sick. I also think it has a lot to do with the fact that he is a teenager. It is what I call the "Me, Me, I Syndrome." He always tells me: "I am the son (sun), so you should revolve around me." How arrogant is that?? As if I didn't have enough to deal with already.
I digress, the short of it, Big T needs a watch to tell time so he knows when he needs to check in! I'll be shopping around for Christmas...if, and that's a BIG if, he behaves.
Stefanie
Monday, September 14, 2009
Just for this...
I just do not have the words for how I am feeling about the new developments with my Little Meryck. Then I received this email from my beautiful niece and it has touched me in a way I can't begin to explain. I hope it touches you the same way it touched me. Thanks Bean! I ♥ you!
*Just for this morning, I am going to step over the laundry, and pick you up and take you to the park to play.
*Just for this morning, I will leave the dishes in the sink, and let you teach me how to put that puzzle of yours together.
*Just for this afternoon, I will unplug the telephone and keep the computer off, and sit with you in the backyard and blow bubbles.
*Just for this afternoon, I will not yell once, not even a tiny grumble when you scream and whine for the ice cream truck and I will buy you one if he comes by.
*Just for this afternoon, I won't worry about what you are going to be when you grow up, or second guess every decision I have made where you are concerned.
*Just for this afternoon, I will let you help me bake cookies, and I won't stand over you trying to fix them.
*Just for this afternoon, I will take us to McDonald's and buy us both a Happy Meal so you can have both toys.
*Just for this evening, I will hold you in my arms and tell you a story about how you were born and how much I love you.
*Just for this evening, I will let you splash in the tub and not get angry.
*Just for this evening, I will let you stay up late while we sit on the porch and count all the stars.
*Just for this evening, I will snuggle beside you for hours, and miss my favorite TV shows.
*Just for this evening when I run my finger through your hair as you pray, I will simply be grateful that God has given me the greatest gift ever given.
*I will think about the mothers And fathers who are searching for their missing children, the mothers and fathers who are visiting their children's graves instead of their bedrooms, and mothers and fathers who are in hospital rooms watching their children suffer senselessly, and screaming inside that they can't handle it anymore.
*And when I kiss you good night I will hold you a little tighter, a little longer. It is then, that I will thank God for you, and ask Him for nothing, except one more day!
Stefanie
*Just for this morning, I am going to step over the laundry, and pick you up and take you to the park to play.
*Just for this morning, I will leave the dishes in the sink, and let you teach me how to put that puzzle of yours together.
*Just for this afternoon, I will unplug the telephone and keep the computer off, and sit with you in the backyard and blow bubbles.
*Just for this afternoon, I will not yell once, not even a tiny grumble when you scream and whine for the ice cream truck and I will buy you one if he comes by.
*Just for this afternoon, I won't worry about what you are going to be when you grow up, or second guess every decision I have made where you are concerned.
*Just for this afternoon, I will let you help me bake cookies, and I won't stand over you trying to fix them.
*Just for this afternoon, I will take us to McDonald's and buy us both a Happy Meal so you can have both toys.
*Just for this evening, I will hold you in my arms and tell you a story about how you were born and how much I love you.
*Just for this evening, I will let you splash in the tub and not get angry.
*Just for this evening, I will let you stay up late while we sit on the porch and count all the stars.
*Just for this evening, I will snuggle beside you for hours, and miss my favorite TV shows.
*Just for this evening when I run my finger through your hair as you pray, I will simply be grateful that God has given me the greatest gift ever given.
*I will think about the mothers And fathers who are searching for their missing children, the mothers and fathers who are visiting their children's graves instead of their bedrooms, and mothers and fathers who are in hospital rooms watching their children suffer senselessly, and screaming inside that they can't handle it anymore.
*And when I kiss you good night I will hold you a little tighter, a little longer. It is then, that I will thank God for you, and ask Him for nothing, except one more day!
Stefanie
Monday, August 31, 2009
When will I wake up from this....
Saturday before last, I went to the ER and I was told I had a "complex migraine," severe dehydration (still not used to Vegas heat, but carry water with me all the time now), and a severe flair up of my fibro. I was feeling a little funny on Friday afternoon, but I still pushed myself to go to work. As I was tripping over myself at work, even my co-workers noticed that I wasn't well. But still, I pushed forward. Saturday came and I couldn't even get up off the couch, my depth perception in my vision was off. I felt like I had one hand over an eye when I was trying to look at something, yet I had both my eyes open. Not only that, but my equilibrium was off. I had my son release my shift online (because we had online scheduling at Outback) saying that I was going to the emergency room. The hospital drugged me up and sent me home. The next day, I went to check too see what time I had to work, because yes, the glutton for punishment I am, I was going to go to work when I noticed that my schedule had been removed.
I sent an email to the bosses and told them what happened and that I had guessed that I was fired. The owner said that I could come back if I wanted. The other manager (who creates the schedules) wished me luck in whatever I decided to do. I wrote another email to the owner and told him some things that were going on with my schedule and didn't get an email back, so there went my job...Now I'm looking for a new job and have a wonderful prospect at Chili's, I just hope I get it.
As far as my little man, he neph said that it doesn't look that good and this Wednesday we are getting a kidney function test done to see exactly where the damage is. The thing I like about this neph is that this time they are going to sedate Little M! Yeah for that, but then I have to watch him for a couple of days afterwards since they need to cath him for that test. The time before last, when they cath'd him, I had to rush him to the hospital because he stopped peeing completely. That's when they put a cath to stay then he had surgery in his bladder and the docs put a tube coming out of his bladder it was collected in a urinary bag (suprapubic tube). That was a nightmare of a year!
It's so hard to keep thinking positively sometimes, but I force myself to. I do it, not for myself, but for my children.
We also had a fiasco the first day of Kindergarten with Little M because his pre-k teacher didn't let the K teacher know what is required for Meryck and I had to give her a crash course in it. However, what good did come out of it, was that I called the principal directly and told him what was going on. Next thing you know we had a 504 meeting planned within 2 days. What's even better is that we addressed both of my children and got both of them on a 504! See a silver lining in everything!
Things can get rough, but I will persevere! I will push forward, not matter how much pain I am in. I need to. My children (and now new puppies) are the driving force behind my persistence and determination....
Did I mention my desktop crashed??? Yeah, well, what can you do about that except get a new one. When that will be, who knows.
Stefanie
I sent an email to the bosses and told them what happened and that I had guessed that I was fired. The owner said that I could come back if I wanted. The other manager (who creates the schedules) wished me luck in whatever I decided to do. I wrote another email to the owner and told him some things that were going on with my schedule and didn't get an email back, so there went my job...Now I'm looking for a new job and have a wonderful prospect at Chili's, I just hope I get it.
As far as my little man, he neph said that it doesn't look that good and this Wednesday we are getting a kidney function test done to see exactly where the damage is. The thing I like about this neph is that this time they are going to sedate Little M! Yeah for that, but then I have to watch him for a couple of days afterwards since they need to cath him for that test. The time before last, when they cath'd him, I had to rush him to the hospital because he stopped peeing completely. That's when they put a cath to stay then he had surgery in his bladder and the docs put a tube coming out of his bladder it was collected in a urinary bag (suprapubic tube). That was a nightmare of a year!
It's so hard to keep thinking positively sometimes, but I force myself to. I do it, not for myself, but for my children.
We also had a fiasco the first day of Kindergarten with Little M because his pre-k teacher didn't let the K teacher know what is required for Meryck and I had to give her a crash course in it. However, what good did come out of it, was that I called the principal directly and told him what was going on. Next thing you know we had a 504 meeting planned within 2 days. What's even better is that we addressed both of my children and got both of them on a 504! See a silver lining in everything!
Things can get rough, but I will persevere! I will push forward, not matter how much pain I am in. I need to. My children (and now new puppies) are the driving force behind my persistence and determination....
Did I mention my desktop crashed??? Yeah, well, what can you do about that except get a new one. When that will be, who knows.
Stefanie
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