HOPE
This was imprinted on the mellon colored band. Aside from these interest-group rubber bands, I haven't been able to wear necklaces or bracelets for the better part of 5 years. So I put it on and glanced at it, remembering the sweet family whose child, not much older than Bo, graciously gave it to him.
We were flying back from our first and only Oley conference, a conference for consumers and medical professionals of TPN. The airport was a nightmare with Bo and his diapers, and lines, and vomiting and sensory overload. He was screaming or uncomfortable, and I was sweating and trying to manage his discomfort. We were trying to get dressed and put back together after being frisked within an inch of nudity and fully unpacking. This activity seriously took the better part of 20 minutes.
As I kept an eye on Bo while trying to compose ourselves, another family came through the scanner to retrieve their things from the conveyer belt. Their child came close enough to Bo for him to see her bracelet. She immediately took it off and offered it to him. There was no hesitation. I don't think he was sure about giving it back, and she was uncertain about giving it away, but when she reached to retrieve it, Bo protested and her parents asked him to keep it. Only after they had disappeared down the concourse, when I remarked how kind they were, and what an unexpected reprieve from our TSA experience that was, as I was sending up thanks for the small kindness, did I see it was embossed with "HOPE."
Thursday, July 12, 2012
Tuesday, July 10, 2012
Can I Tell You a Secret?
I really don't want more children. Really. When we were fighting so hard for Bo's life, when every night was a series of beeping pumps and sounds of agony, when each morning seemed the beginning of a sea of pain, I went to bed each night thinking about the Duggars, Jon & Kate and Octomom. Full of envy.
Finally, we had Ahn. And she is truly her brother's opposite. Exuberant, extroverted, unafraid.
But I know enough science to know that a genetic test that was only used in a research setting for a disease whose gene was only just mapped can only tell us so much. While Ahn's results in utero told us she did not have the same tragic genes as her brother, I was not convinced she would be spared the same fate. So her entire first year of life was spent. Waiting. For the other shoe.
It did not drop, and I finally have begun to regain bits and pieces of my sanity. But a year ago this month was certainly a dark time.
And now, while we continue to generate mountains of recycling and amass yardage of cool-packs, I'm more worried about Ahn jumping off the couch when I'm not looking, or running to the playground before bedtime. I work hard, and I play hard in my work clothes. When they say day-to-evening wear, that is what I'm thinking about. And as long as you don't mind, I don't mind going down the slide with the toddler, in my work skirt, especially if Bo says he "will be there to catch [me]."
Hot days, cool nights and late sunsets. There really is a Kalamazoo. Happy Summer!
Finally, we had Ahn. And she is truly her brother's opposite. Exuberant, extroverted, unafraid.
But I know enough science to know that a genetic test that was only used in a research setting for a disease whose gene was only just mapped can only tell us so much. While Ahn's results in utero told us she did not have the same tragic genes as her brother, I was not convinced she would be spared the same fate. So her entire first year of life was spent. Waiting. For the other shoe.
It did not drop, and I finally have begun to regain bits and pieces of my sanity. But a year ago this month was certainly a dark time.
And now, while we continue to generate mountains of recycling and amass yardage of cool-packs, I'm more worried about Ahn jumping off the couch when I'm not looking, or running to the playground before bedtime. I work hard, and I play hard in my work clothes. When they say day-to-evening wear, that is what I'm thinking about. And as long as you don't mind, I don't mind going down the slide with the toddler, in my work skirt, especially if Bo says he "will be there to catch [me]."
Hot days, cool nights and late sunsets. There really is a Kalamazoo. Happy Summer!
Friday, June 22, 2012
Dirt Eater
I'm not saying my daughter is, for sure, a dirt eater. I am saying she has hand, foot and mouth disease. This is a highly contagious mix of mostly viral, but sometimes a splash of bacterial, pathogens; a lovely tonic of germs if you will.
Ahn had this stippled rash on the tops of her feet. And she didn't feel like eating (!). Then, after our walk, I noticed she was hot, and her palms were stippled!
She was running a high-ish fever, and a mom on the FB support group mentioned her daughter on TPN having HFMD. Groan. Highly contagious and a semi-permanent IV are not a great combination. Not to mention my lack of familiarity with "regular kid illness." We will do everything short of solitary confinement during Ahn's contagious week, to try an keep Bo from getting this. I must admit, I'm feeling a bit defeated already.
Of course this all happens early Friday evening, the most perfect night of the summer. I have to be THAT PARENT who calls the pediatrician on call. Yeah, they're getting the big bucks to talk a microbiologist down about the unlikelihood that anyone can help a mostly viral, common childhood ailment {crazylady!}.
Good thing I get children's ibuprofen and acetaminophen for 20 cents. Cuz we are gonna be dosing around the clock. While I'm all about minimizing toxins for babies (hello, natural childbirth), there is a time and place for everything. And there is neither a time or a place where risking my daughter's brainfunction is ok. High fevers = bad news. So we will be alternating the liver toxic and the kidney toxic fever reducers (those are regenerative organs, the brain is not- so brain trumps filter organs), bleaching every solid surface multiple times, and germexing anyone coming within 100 feet of the house. Be warned.
Although she wouldn't eat a proper dinner, which the doctor kindly DID warn me of, she did eat THREE popsicles (ok, it was frozen pedialyte, that's ok; she can be mad and traumatized when she finds out in middle school). And with her fever reduced, she happily went to bed.
The end!
Ahn had this stippled rash on the tops of her feet. And she didn't feel like eating (!). Then, after our walk, I noticed she was hot, and her palms were stippled!
She was running a high-ish fever, and a mom on the FB support group mentioned her daughter on TPN having HFMD. Groan. Highly contagious and a semi-permanent IV are not a great combination. Not to mention my lack of familiarity with "regular kid illness." We will do everything short of solitary confinement during Ahn's contagious week, to try an keep Bo from getting this. I must admit, I'm feeling a bit defeated already.
Of course this all happens early Friday evening, the most perfect night of the summer. I have to be THAT PARENT who calls the pediatrician on call. Yeah, they're getting the big bucks to talk a microbiologist down about the unlikelihood that anyone can help a mostly viral, common childhood ailment {crazylady!}.
Good thing I get children's ibuprofen and acetaminophen for 20 cents. Cuz we are gonna be dosing around the clock. While I'm all about minimizing toxins for babies (hello, natural childbirth), there is a time and place for everything. And there is neither a time or a place where risking my daughter's brainfunction is ok. High fevers = bad news. So we will be alternating the liver toxic and the kidney toxic fever reducers (those are regenerative organs, the brain is not- so brain trumps filter organs), bleaching every solid surface multiple times, and germexing anyone coming within 100 feet of the house. Be warned.
Although she wouldn't eat a proper dinner, which the doctor kindly DID warn me of, she did eat THREE popsicles (ok, it was frozen pedialyte, that's ok; she can be mad and traumatized when she finds out in middle school). And with her fever reduced, she happily went to bed.
The end!
Sunday, June 10, 2012
Wedding Bliss
We missed the wedding. Well, the maniacs and I did. Jose went.
Then we all went to the reception long enough for the lovely couple to register our presence and for baby Ahn (who really isn't a baby anymore) to grab the berries off the bite-sized cheese cake hors d'oeuvres, eat all the grapes trimming the brie, spit out the brie that I fed her, dance in front of the cool jazz pianist's awesome retro-y keyboard, get hot, sweaty, flushed and cranky, and smell the pot roast under the heat-lamp; namely 30 minutes.
It took the better part of Friday business hours for the nurse to pack Bo's things. She thought all she'd have to do was construct his bag, then I gave her a list of about 200 items to pack that were all Bo-medical related, and she was impressed. Like it isn't enough of a PITA to go anywhere with a pair of maniacs. WE insist on going every where with them, in spite of the 200 item checklist for Bo.
I love weddings.
Bo slept in the kids room (normal enough), Ahn slept in the master bedroom in her pack and play (she cannot be trusted, and must be confined), we slept on the lumpy pull-out (which is apparently superior to sleeping on the couch in its couch form) because we are sleep nazi's. As a parent, wife, homemaker and home owner, I let a lot of things slide. I don't cook, I barely clean and the house generally has the appearance of being ravaged by herds of feral capybara. But those kids WILL sleep undisturbed. They need to get smart enough to find paying jobs and move OUT of my house.
Every one is sleeping in (which means 9:20AM- the toddler's equivalent to sleeping till 2PM as an undergraduate). I've made a pot of coffee, updated the blog, run a load of laundry and started filling up the dishwasher. I only complain about not brushing my teeth because now I am starving, but my toothbrush is in the master bathroom. And I'm not about to wake up the tazmanian devil.
I love weddings, and now, I've discovered, I love Traverse City (because it has a disproportionately large independent bookstore for a town of its size).
Then we all went to the reception long enough for the lovely couple to register our presence and for baby Ahn (who really isn't a baby anymore) to grab the berries off the bite-sized cheese cake hors d'oeuvres, eat all the grapes trimming the brie, spit out the brie that I fed her, dance in front of the cool jazz pianist's awesome retro-y keyboard, get hot, sweaty, flushed and cranky, and smell the pot roast under the heat-lamp; namely 30 minutes.
It took the better part of Friday business hours for the nurse to pack Bo's things. She thought all she'd have to do was construct his bag, then I gave her a list of about 200 items to pack that were all Bo-medical related, and she was impressed. Like it isn't enough of a PITA to go anywhere with a pair of maniacs. WE insist on going every where with them, in spite of the 200 item checklist for Bo.
I love weddings.
Bo slept in the kids room (normal enough), Ahn slept in the master bedroom in her pack and play (she cannot be trusted, and must be confined), we slept on the lumpy pull-out (which is apparently superior to sleeping on the couch in its couch form) because we are sleep nazi's. As a parent, wife, homemaker and home owner, I let a lot of things slide. I don't cook, I barely clean and the house generally has the appearance of being ravaged by herds of feral capybara. But those kids WILL sleep undisturbed. They need to get smart enough to find paying jobs and move OUT of my house.
Every one is sleeping in (which means 9:20AM- the toddler's equivalent to sleeping till 2PM as an undergraduate). I've made a pot of coffee, updated the blog, run a load of laundry and started filling up the dishwasher. I only complain about not brushing my teeth because now I am starving, but my toothbrush is in the master bathroom. And I'm not about to wake up the tazmanian devil.
I love weddings, and now, I've discovered, I love Traverse City (because it has a disproportionately large independent bookstore for a town of its size).
Friday, June 8, 2012
A Perfect Birthday
I'm not bragging on myself when I say we had the perfect birthday party. As you know, the most valuable takeaways from my adult life all involve doing less: "it's not your problem, Kinn" (?!... :)), "if it is not your (company's) core competency... outsource," and something snarky about "superfans" and inappropriate emotional investment. So we had a local artisan craft cakes, my BIL made the pinata, my SIL and MIL did so much prep work it take its own blog to document.
But I digress.
What I wanted to say was, Happy Birthday, Bo! You have become an awesome little kid. Your ridiculously long eyelashes and super velvety soft skin still make me think you are a baby, but your insatiable appetite for knowledge and your supernerdy proclivities challenge me.
What _is_ a Mandalorian Jetpack, anyway?
We had a handmade robot pinata, chocolate leaves on the cakes, games and children, family and chosen family, babies and beer. The sun dappled the lawn, and it was warm but not hot.
Baby Ahn got to celebrate her birthday a little early, and she loved running around with all the other littles.
I look at you, Bo, and I cannot imagine the black hole that would have engulfed my head had you not lived. The intense joy and privilege of parenting you is a result of that moment, when I was with you, alone in our hospital room, as you were dying. And I looked at you and thought, I don't know you yet. They say a mother will give up her life for her child. I don't know you yet. But I need to. So I am going to fight with everything I have to give you the time to become. To be. I don't think it was love, at that point that drove me. I just wanted the chance to get to know you, and for you to remember, even if it was just the slightest impression, me. You can't go, yet, I thought. We haven't even started. You won't remember me. You will only remember pain and fear. I want you to remember being loved and cherished. We need more time.
The longest-lived intestinal transplant patient died, recently. She was 22 years post transplant. I look at your face and think, 22 years is not enough. That is not good enough. That is not long enough. It's not long enough, dammit!
For now, you are running and jumping, reading and rioting, exuberant, defiant. I hope you know that we celebrate every day you are here. We are so blessed that we got to keep you here by our sides, just a little bit longer.
But I digress.
What I wanted to say was, Happy Birthday, Bo! You have become an awesome little kid. Your ridiculously long eyelashes and super velvety soft skin still make me think you are a baby, but your insatiable appetite for knowledge and your supernerdy proclivities challenge me.
What _is_ a Mandalorian Jetpack, anyway?
We had a handmade robot pinata, chocolate leaves on the cakes, games and children, family and chosen family, babies and beer. The sun dappled the lawn, and it was warm but not hot.
Baby Ahn got to celebrate her birthday a little early, and she loved running around with all the other littles.
I look at you, Bo, and I cannot imagine the black hole that would have engulfed my head had you not lived. The intense joy and privilege of parenting you is a result of that moment, when I was with you, alone in our hospital room, as you were dying. And I looked at you and thought, I don't know you yet. They say a mother will give up her life for her child. I don't know you yet. But I need to. So I am going to fight with everything I have to give you the time to become. To be. I don't think it was love, at that point that drove me. I just wanted the chance to get to know you, and for you to remember, even if it was just the slightest impression, me. You can't go, yet, I thought. We haven't even started. You won't remember me. You will only remember pain and fear. I want you to remember being loved and cherished. We need more time.
The longest-lived intestinal transplant patient died, recently. She was 22 years post transplant. I look at your face and think, 22 years is not enough. That is not good enough. That is not long enough. It's not long enough, dammit!
For now, you are running and jumping, reading and rioting, exuberant, defiant. I hope you know that we celebrate every day you are here. We are so blessed that we got to keep you here by our sides, just a little bit longer.
Sunday, May 20, 2012
Summer Begins
It has gotten progressively warmer all week and was officially hot today. The nights have been cool, and perfect sleeping weather. But we're finally into summer, and I get nervous about that. We can't seem to keep Bo out of the hospital more than a year at a time, and he invariably ends up inpatient in the summers. Which is great, because there are fewer respiratory infections, but is less great, because all the residents are brand-spankin new.
Anyway, I'm hoping we can forgo the annual admission this year. But Bo got completely wilted yesterday from being out in the heat, and today, our outing was a walk around the block. When he gets too hot, he will get dehydrated enough to become nauseous and vomit. He gets frighteningly pale and lethargic. And nobody likes that. Thankfully, the fluid bolus we started giving a few months ago has kept his excruciating thirst and dehydration at bay, but it may get hotter yet, this summer.
His biannual visit to the nephrology team in Detroit was great. Two years after stopping the kidney stone medication, he remains stone-free (yay!!). And they are suggesting changes to his TPN that may alleviate some of the thirst issues (too much sodium; it had been jacked up from his last bout of dehydration and never inched down, as his blood levels remained stable, but urine levels started to rise as he recovered, but wasn't getting those scrutinized as frequently). Once the appropriate sodium levels are determined, Bo's remaining thirst (if any) can be addressed by further volume added to his midday bolus.
Since everyone woke up early this morning, we actually made it to the earlier Mass. The play room was open, but there were no scheduled activities, which meant Bo had free reign of the giant toy box. I tried to dump both kids with JVC, but Ahnnie totally melted down, so I took her into Mass with me and she was surprisingly good! Aside from saying "all done" and bolting to the doors right before Communion, she was totally sweet (and silent!).
Summers are so incredibly luscious, here, they really are like vacations. I am feeling completely rested (can I have an amen for date night? We haven't had them in a while due to nursing personnel changes, and boy did I miss them), and even with the trauma of re-carpeting the basement from sewer back-up (entirely our fault forgetting annual roto-rooter), and planning the 5 and 2 year birthdays coming up shortly, I am just so grateful for our friends in deed (Paul!!).
May you experience the Joy and Love infused in this very Life.
Anyway, I'm hoping we can forgo the annual admission this year. But Bo got completely wilted yesterday from being out in the heat, and today, our outing was a walk around the block. When he gets too hot, he will get dehydrated enough to become nauseous and vomit. He gets frighteningly pale and lethargic. And nobody likes that. Thankfully, the fluid bolus we started giving a few months ago has kept his excruciating thirst and dehydration at bay, but it may get hotter yet, this summer.
His biannual visit to the nephrology team in Detroit was great. Two years after stopping the kidney stone medication, he remains stone-free (yay!!). And they are suggesting changes to his TPN that may alleviate some of the thirst issues (too much sodium; it had been jacked up from his last bout of dehydration and never inched down, as his blood levels remained stable, but urine levels started to rise as he recovered, but wasn't getting those scrutinized as frequently). Once the appropriate sodium levels are determined, Bo's remaining thirst (if any) can be addressed by further volume added to his midday bolus.
Since everyone woke up early this morning, we actually made it to the earlier Mass. The play room was open, but there were no scheduled activities, which meant Bo had free reign of the giant toy box. I tried to dump both kids with JVC, but Ahnnie totally melted down, so I took her into Mass with me and she was surprisingly good! Aside from saying "all done" and bolting to the doors right before Communion, she was totally sweet (and silent!).
Summers are so incredibly luscious, here, they really are like vacations. I am feeling completely rested (can I have an amen for date night? We haven't had them in a while due to nursing personnel changes, and boy did I miss them), and even with the trauma of re-carpeting the basement from sewer back-up (entirely our fault forgetting annual roto-rooter), and planning the 5 and 2 year birthdays coming up shortly, I am just so grateful for our friends in deed (Paul!!).
May you experience the Joy and Love infused in this very Life.
Tuesday, May 15, 2012
Regular People Angst
The today litany, gateway to tomorrow, paralyzed me. I wasn't the deer in the headlights. I was the headlights.
And when all the little people fell sweetly asleep, grimy and contented, I remembered.
Until my fist clenched at my purse, screaming something angry about scarcity, as I softly ascertained after-hours plumbers' fees. I wanted to call my mom. My heart, gripped, constrained. tight tight tight. My brain scans for an answer. I feel a dull ache. I try to think about the end of the Easter season.
I will prepare documents for hand-delivery tomorrow before jury duty. Contentment glows from upstairs. The sun kept shining.
And when all the little people fell sweetly asleep, grimy and contented, I remembered.
Until my fist clenched at my purse, screaming something angry about scarcity, as I softly ascertained after-hours plumbers' fees. I wanted to call my mom. My heart, gripped, constrained. tight tight tight. My brain scans for an answer. I feel a dull ache. I try to think about the end of the Easter season.
I will prepare documents for hand-delivery tomorrow before jury duty. Contentment glows from upstairs. The sun kept shining.
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