In the name of full disclosure, I am warning you all right now that this is going to be a whiny post. I am in one of "those" moods today, and I need to get it out. Writing has always been my therapy, and now that I have a blog, you all get to see inside my mind. Aren't you lucky?
Today, I am tired. Bone-weary, exhausted, worn out, drained. I have been feeling lately that I cannot catch a break. I know, in that oft-hiding logical part of my brain, that I am indeed very lucky. But today my emotional levee has broken, and out comes the flood of frustration.
You know that old saying about the straw that broke the camel's back? Just about 20 minutes ago, that happened to me. The ridiculous part is that said straw is something miniscule, something that (hopefully!) will be easily fixed. It was just the final insult my brain can take this week.
On top of the usual financial woes and the rollercoaster ride we call parenting, this week has been particularly crazy. Madi has been off-the-wall hyper and disobedient. To be fair, she has been cooped up much of the summer, as the weather has not been nice enough for her to be outside. I think she's ready for school. And frankly, so am I. For her to be in school, that is. If we finally get everything all squared away for her to go, anyway. Yes, my child was the only one forgotten when doing up the transportation for this year. And it was just noticed on Wednesday at the open house, leaving no time whatsoever to get it fixed in time for the first day on Tuesday. Why they need a few weeks' notice, I don't know, but I was not in the right frame of mind to be asking questions. There were what seemed like gazillions of children running rampant in the school that night. A school with no air conditioning, and all the parents and children and staff all together equals chaos. Hot, sticky, sweaty, chaos. So I left my contact information with a promise of a follow-up phone call the next day. I got that, from Madi's case manager. She's very very nice and I know none of this is her fault. Quite frankly I feel bad for her too. I am sure the woman doesn't get paid nearly what she's worth and she has to deal with transportation snafus too? Yeesh. So I call to check in today and they told me that somewhere along the line the ball was dropped (DUH!) and that they hope to have it all squared away next week.
Normally, such a situation would not bother me so much. But it's seeming more and more lately like I can't get anything done in a straightforward manner. My brain is crying from all the fixing it has had to do lately.
And then the family drama.. oy vey.. we won't go there but let's just say that my very large family has dwindled to very few. By their own choice-since they think I am the devil for standing up for what I believe in. Leaving me feeling somewhat alone and support-less as compared to where things used to be. But that's another mess of its own that doesn't deserve my brainpower at the moment.
So yes. I am whining. And I am having a pity party for myself. I am, at the moment, one of those "Why can't anything go easily for me" people. Now I never said that I liked to be that kind of a person but let's face it, people: sometimes we all need to pout and grumble.
I have a plan in place, though. Tomorrow, I am going with my best friend to the state fair. I plan to drown my sorrows in plenty of fried foods-on-a-stick. Calories be damned! Between my blog vent here, and the overload of junk food tomorrow, I am going to be just fine.
I can smell the cheese curds now. Smells like therapy.
Friday, August 31, 2012
Tuesday, August 28, 2012
The Dream Team
Between Madi's hospital stay post-transplant and Sydney's hospital stay post-transplant, I imagine that I have spent enough time in the Cardiac ICU at Mayo to call myself something of an expert.
What does that even mean, you say?
Well, for one, I know where the best places for phone reception are. What times the echo techs generally come around. When the teams do their morning rounds. Where the "treasure chest" is located. My feet have worn a path around the unit from days of pushing strollers or pulling wagons in endless loops, hoping to soothe an irritable child.
I hear about other hospital programs, and consider our family very lucky to have been guided to the Mayo system when we started our whole journey. A Cardiac ICU is not a fun place for a family to be, but if you have to be there, you may as well make the best of it. I so wish that all healthcare systems worked the way Mayo does. Every morning, when rounds take place, you are reminded over and over that these people really care for your child. As you stand there and listen to the daily pow-wow between cardiology, neurology, hematology, pharmacy, dietary, occupational therapy, physical therapy, and the intensivist, you know without a doubt that your child is getting the best care possible. Each and every day, all of the members of your care team meet and discuss your child. They make adjustments to their care plan as needed, and make sure that everyone's on board with all decisions made. It's like having a care conference daily, and it's unbelievably reassuring. As a parent, the fact that I was always included was a big deal too. It made me feel like my input was always important as well. They validated my feelings and concerns and made sure to help me in any way that they could. When you have a child that's been through what my children have been through, the security that brings is immeasurable. When you have team-based care, the mistakes are few and far between (and in my case, for both of my children, there were no mistakes made whatsoever) because nothing is done without everyone else's knowledge.
And the nurses! Oh, what can I say to convey to you how great they are? Besides taking the very best care of my kids that they could, they all truly made me feel like they cared about our family as a whole. It warms my heart still to think of the special people who took my girls under their wings. There were times when I'd pop by the unit on my way to lunch or something, and see a nurse sitting with Sydney reading her a book, or singing to her. At night, when Sydney was restless and unable to sleep, they'd gather her into their lap and rock, positioning all of her monitors so they could see them while Sydney watched Toy Story for the bazillionth time. Every morning when I came to the room, she'd be freshly bathed, with a pretty bow in her hair, lips glistening with Chap-Stick. (That hospital air gets dry, ya know!)
When we finally left the hospital, I cried. With both girls. Tears of relief, yes. And tears of joy that we'd made it this far. Of course I was terrified, too, to be taking care of these newly-transplanted kids on my own. But you know what's funny? A great part of those tears were because I was going to miss the people that I saw every day in that ICU. So weird, I know. When your child is hospitalized all you can think about is getting them well enough to leave. And then when the time comes, you almost don't want to leave. Almost. It's like saying goodbye to your family members.
To this day, if we have time, we stop up to "the unit" when we have the girls in town for their checkups. The girls are always the stars, and everyone peeks out of their rooms if they can to say hi. It's so nice to know that even if we aren't inpatient anymore, Madi & Sydney have touched their lives somehow. I'm glad the girls can do that. I think they were both put on this Earth to make a great impact. With a dream team like the one they have at Mayo, they are well on their way to a long and successful life.
What does that even mean, you say?
Well, for one, I know where the best places for phone reception are. What times the echo techs generally come around. When the teams do their morning rounds. Where the "treasure chest" is located. My feet have worn a path around the unit from days of pushing strollers or pulling wagons in endless loops, hoping to soothe an irritable child.
I hear about other hospital programs, and consider our family very lucky to have been guided to the Mayo system when we started our whole journey. A Cardiac ICU is not a fun place for a family to be, but if you have to be there, you may as well make the best of it. I so wish that all healthcare systems worked the way Mayo does. Every morning, when rounds take place, you are reminded over and over that these people really care for your child. As you stand there and listen to the daily pow-wow between cardiology, neurology, hematology, pharmacy, dietary, occupational therapy, physical therapy, and the intensivist, you know without a doubt that your child is getting the best care possible. Each and every day, all of the members of your care team meet and discuss your child. They make adjustments to their care plan as needed, and make sure that everyone's on board with all decisions made. It's like having a care conference daily, and it's unbelievably reassuring. As a parent, the fact that I was always included was a big deal too. It made me feel like my input was always important as well. They validated my feelings and concerns and made sure to help me in any way that they could. When you have a child that's been through what my children have been through, the security that brings is immeasurable. When you have team-based care, the mistakes are few and far between (and in my case, for both of my children, there were no mistakes made whatsoever) because nothing is done without everyone else's knowledge.
And the nurses! Oh, what can I say to convey to you how great they are? Besides taking the very best care of my kids that they could, they all truly made me feel like they cared about our family as a whole. It warms my heart still to think of the special people who took my girls under their wings. There were times when I'd pop by the unit on my way to lunch or something, and see a nurse sitting with Sydney reading her a book, or singing to her. At night, when Sydney was restless and unable to sleep, they'd gather her into their lap and rock, positioning all of her monitors so they could see them while Sydney watched Toy Story for the bazillionth time. Every morning when I came to the room, she'd be freshly bathed, with a pretty bow in her hair, lips glistening with Chap-Stick. (That hospital air gets dry, ya know!)
When we finally left the hospital, I cried. With both girls. Tears of relief, yes. And tears of joy that we'd made it this far. Of course I was terrified, too, to be taking care of these newly-transplanted kids on my own. But you know what's funny? A great part of those tears were because I was going to miss the people that I saw every day in that ICU. So weird, I know. When your child is hospitalized all you can think about is getting them well enough to leave. And then when the time comes, you almost don't want to leave. Almost. It's like saying goodbye to your family members.
To this day, if we have time, we stop up to "the unit" when we have the girls in town for their checkups. The girls are always the stars, and everyone peeks out of their rooms if they can to say hi. It's so nice to know that even if we aren't inpatient anymore, Madi & Sydney have touched their lives somehow. I'm glad the girls can do that. I think they were both put on this Earth to make a great impact. With a dream team like the one they have at Mayo, they are well on their way to a long and successful life.
Tuesday, August 21, 2012
Sometimes...
Sometimes, if only for a minute, I forget that I am a heart mom.
Then reality wakes me up, and it all comes flooding back.
Sometimes, I get downright angry. Why does my experience with motherhood have to include things like syringes and dosing information, sutures and heart function? I see people's Facebook posts in which their children do things like ride their bike, write their name, or tie their shoes for the first time-at the age it's considered developmentally "normal" to do so. I hear someone's three-year-old speaking full, clear sentences and watch their six-year-old pick up a chapter book and go to town. I get mad (and let's be honest here-I get really sad, too) that things that "should" be simple for any child are not simple for either of mine. I fume at their struggles, curse the medications that make my kids throw up or not want to eat, and seriously consider hurling my home blood pressure monitor and stethoscope across the room.
People tell me they don't know how I do it. Well, join the club. I don't know how I do it either. Perhaps the easiest way to respond to that is that #1-I really don't have a choice and #2-I guess I don't know anything different. Maybe that makes it a bit easier. I don't know, because both of my kids have walked eerily similar paths that don't even come close to what I once imagined parenthood entailed. Maybe that question should be posed to people like my friend C, whose heart "baby" is not her first child. Or her second. I think that woman deserves a medal. Raising five children, on her own, the youngest of whom is a heart kiddo. How does she do it? I imagine, though, that her answer would be very similar to what I have said more than once to that statement: What else can you do but pick yourself up and go on?
So when I start having a pity party at the sink as I am washing the latest batch of syringes, I try my best to remember this: my children are the lucky ones. So they aren't potty trained. So what. So they have to take meds every day. Yeah, that sucks. But you know what? They're here. I know for a fact that there are many heart parents that don't get to hug their children, or read them a bedtime story. Heart problems kill more children every year than all cancers combined. We have stared the beast in the face and managed to come out the other side-at the moment. Something that cannot be said for every family that's walked this road.
Come to think of it, I love washing syringes.
Then reality wakes me up, and it all comes flooding back.
Sometimes, I get downright angry. Why does my experience with motherhood have to include things like syringes and dosing information, sutures and heart function? I see people's Facebook posts in which their children do things like ride their bike, write their name, or tie their shoes for the first time-at the age it's considered developmentally "normal" to do so. I hear someone's three-year-old speaking full, clear sentences and watch their six-year-old pick up a chapter book and go to town. I get mad (and let's be honest here-I get really sad, too) that things that "should" be simple for any child are not simple for either of mine. I fume at their struggles, curse the medications that make my kids throw up or not want to eat, and seriously consider hurling my home blood pressure monitor and stethoscope across the room.
People tell me they don't know how I do it. Well, join the club. I don't know how I do it either. Perhaps the easiest way to respond to that is that #1-I really don't have a choice and #2-I guess I don't know anything different. Maybe that makes it a bit easier. I don't know, because both of my kids have walked eerily similar paths that don't even come close to what I once imagined parenthood entailed. Maybe that question should be posed to people like my friend C, whose heart "baby" is not her first child. Or her second. I think that woman deserves a medal. Raising five children, on her own, the youngest of whom is a heart kiddo. How does she do it? I imagine, though, that her answer would be very similar to what I have said more than once to that statement: What else can you do but pick yourself up and go on?
So when I start having a pity party at the sink as I am washing the latest batch of syringes, I try my best to remember this: my children are the lucky ones. So they aren't potty trained. So what. So they have to take meds every day. Yeah, that sucks. But you know what? They're here. I know for a fact that there are many heart parents that don't get to hug their children, or read them a bedtime story. Heart problems kill more children every year than all cancers combined. We have stared the beast in the face and managed to come out the other side-at the moment. Something that cannot be said for every family that's walked this road.
Come to think of it, I love washing syringes.
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