John is not good at getting up in the mornings. This is mostly because, no matter if goes to bed at 8:00 or 10:00, he is just as likely as not to lie awake in his bed, completely still for one to three hours before finally giving in to sleep. If he takes an afternoon nap, it is all but impossible for the child to go to sleep. He typically goes to bed with minimal protest, but sleep is elusive.
He has always gotten by on minimal sleep. Chemotherapy is supposed to make you tired, right? Not this kid. He had 8 fairly intense cycles of inpatient chemotherapy as an infant. Six months' worth. It was not uncommon for him, at less than one year of age to nap less than an hour during the day. So...imagine a restless 12 month old baby, far from walking independently, but very adept at crawling, tethered to an IV pole for 3 days straight while toxic poison is pumped into him, then flushed with saline (constant peeing, constant diaper changing). And the only napping he does is dozing while nursing. Good grief! Reliving it makes me tired.
He finally started napping every day at around age 3. That's right, when a lot of kiddos are trying to give up an afternoon nap, John finally agreed it would be ok to take one. That ship has more or less sailed by now, though, as he's nearing his 6th birthday.
John never slept in a crib. He quietly and unobtrusively co-slept with us. Well, quietly after he was diagnosed and on the road to healing. Before that he screamed all night long. Anyway, he would lay in bed quietly, waking to eat, maybe going back to sleep, maybe not. When we moved him to his own bed, we moved along with him because he had a TPN + lipids (think intravenous Ensure shake) infusion going on all night long, so we couldn't risk him getting out of bed or getting tangled in the IV lines, etc. We would all go to bed at the same time. Matt & I would fall asleep quickly, and John would be just as likely as not to be just laying there, wide awake.
When we were able to move to our own bed, one of us would put John to bed and lay there with him until he fell asleep, at which point we would sneak out of his bedroom. Well...three hours later...invariably the one of us on bedtime duty would give in to sleep and end up sleeping with the boy while he was staring at the popcorn ceiling of our old farmhouse.
But...obviously...I have digressed.
Knowing that he struggles with getting up in the morning, I was looking forward to allowing him to sleep in on long, lazy summer mornings when preschool ended this spring. I wanted him to stay up as late as he wanted catching fireflies and roasting marshmallows. I did not want him to go to summer school. I felt very strongly that he should have the summer off from school before starting Kindergarten. I feared school burnout before his school career even got off the ground.
John, however, insisted on going to summer school. It's a full day; preschool was only a half day, so I knew his little butt would be dragging after a few days. He went to summer school Monday and Wednesday of this week. (I'm typing this Wednesday evening). Tuesday was a big day of doctor appointments, capped off with a visit to an arcade/giant indoor playground. He had a baseball game tonight, so by bedtime, the...boy...was...tired.
When I put him to bed tonight, I reminded him that he needed to go to sleep quickly because he would have to wake up super early for school in the morning.
He said, "Ugh! What day can I stay in bed and sleep late? I don't like to get up early."
I said, "Well, you can sleep late on Saturday, and then every morning except Sunday after summer school is over."
He said, "Man, I'll sure be glad when school is out so I can sleep late in bed."
I did not say, "JOHN CLARK! I TOLD YOU SO! I TRIED AND TRIED TO CONVINCE YOU SUMMER SCHOOL WAS NOT FOR YOU, BUT YOU WOULD HEAR NONE OF IT!"
But I sure wanted to.
And...in other news...more important news...John's five-year-post-diagnosis appointment was yesterday. The exam went well. He appears to be a 48 pound picture of health. We're still waiting on the lab results on his catecholomine urine test. (it's a test that checks specifically for neuroblastoma tumor markers in the urine) We and his doctors have no reason to suspect this test will show anything outside the normal range, but I am still biting my nails as I await the phone call from our oncology nurse practitioner telling us all is well.
Thank you for reading this tonight. Thank you for your support of our family through the last five years. Thank you for loving John. Thank you for praying fervently and unceasingly for his healing.
Thank you.
This blog is about my real life as a wife and mother. As a daughter and sister. A friend. An accountant. A gardener. A cook. A maid. A reader. A writer. A Child of God. I hope to offend no one, but it will happen inevitably, as I intend to write what is raw and real. My real life, marginally proofread, and minimally censored.
Showing posts with label cancer. Show all posts
Showing posts with label cancer. Show all posts
Wednesday, June 5, 2013
Wednesday, August 22, 2012
First Day!
We just put our first baby bear on the big yellow school bus for the first time. It's a day that seemed so far off four years ago. A day I prayed we would see.
Some parents will tell you this day is bittersweet. Well, it wasn't at our house. It helps that John was beyond thrilled to be going to "the big school" and really did not appear one bit nervous until maybe the first step on the bus. And only then, maybe just a little; he didn't hesitate a bit.
It wasn't bittersweet for Matt and me. It wasn't bittersweet because, let's be perfectly honest and tell it like it is: we're just glad he's not dead!

The more time and distance John puts between him and Stage IV neuroblastoma, the happier we are. But I really don't think it's John's medical history alone that accounts for this feeling. I've never been a mom who has lamented the passage of time and the associated growing up of my babies.
Some parents will tell you this day is bittersweet. Well, it wasn't at our house. It helps that John was beyond thrilled to be going to "the big school" and really did not appear one bit nervous until maybe the first step on the bus. And only then, maybe just a little; he didn't hesitate a bit.
he's complaining about being cold. |
It wasn't bittersweet for Matt and me. It wasn't bittersweet because, let's be perfectly honest and tell it like it is: we're just glad he's not dead!
I counted maybe three tears that I cried as the bus drove off with my firstborn, while Matt smiled and we congratulated ourselves. They were happy, happy tears.
Still cold, and now staring uncomfortably into the sun. It's too bad mom isn't a better photographer! |
"They're only little for a little while," those older and wiser than me will say. And my reply? "Thank God!"
My career goal, as a mom, after all, is not to produce a gurgling infant, a potty-going toddler, or a chattering preschooler. My goal is to produce strong, faithful, confident, considerate, productive citizens of our community. Wishing they would stay babies does not advance this goal.
No, I'm not wishing their lives away, but I enjoyed parenthood more when John was a toddler than when he was an infant, and more as a preschooler than as a toddler. And, each day with PW is a little more tolerable than the one before. (sorry Patrick, I know you'll read this someday, but you are, my dear boy, a challenge of a whole different sort)
Related: for the first time in 5 years, diapers are not on our shopping list! At least not for a few more weeks. Thank you, P. Dub! (and thank you, daycare for helping me out with this project!)
Barely related: parents who are potty-training, I recommend Pampers Easy-Ups over Huggies pull-ups. They're much, much less expensive, and the sides don't velcro shut, which I prefer because after all, the idea is they're NOT diapers, so you don't want your kid to unfasten them like diapers. Better yet are reusable waterproof training pants. I've purchased several pair via Etsy.
And now...he has Mom & Dad all to himself... at least for a few more weeks. |
John will get off the bus at Kids R Us and eat lunch there before Matt picks him up at noon. I'm so jealous that his teachers there will get to hear all about his first day before I do.
PRAISE GOD!
Saturday, January 28, 2012
Losers
A rambling stream of consciousness on lost items and the losers who
lose them:
If we're friends on Facebook, you're aware that one of our cordless
phones has gone missing. We have two interchangeable handsets: one upstairs and
one downstairs in my office. The batteries are so worn out on each of them that
I frequently swap them; one phone usually won't last me the whole day in my
office. Leave it off the charger? Well, that's bad news.
The beauty of the cordless phone is, of course, also its weakness.
You've never lost an old-fashioned, wall-tethered phone, have you? It's not
possible.
At some point in cordless phone history, manufacturers became aware of
the tendency of the handset to go AWOL, and added the "find the
phone" button to the base unit. It's pretty simple: just push the button,
and the missing handset starts to beep like crazy, thereby saving, minutes,
hours, or in our case, theoretically even DAYS of searching. A wonderful
innovation...as long as the battery is not dead in said phone.
The problem is, I couldn't remember that I needed to press the
"find the phone" button when I was in proximity to the base. You see,
the one handset that isn't missing, has been in my office because a tax
accountant does have some need of a phone this time of year. Since one phone
was right there on my desk, it didn't really register (at such a convenient
moment) that I should push the button. I would remember when I was upstairs,
with a need to use the phone, but, I guess that's when my cell phone would come
in handy (assuming it wasn't lost at that moment).
I finally got around to pushing the handset locater button yesterday.
Guess what. My phone that won't keep a battery charge for 5 hours...won't keep
one for 5 days either. There was no beeping. The phone is still missing.
![]() |
No, PW, I don't think it's in the barn. |
I hear my mom's calm, logical voice inside my head, just as clearly as
if she were standing next to me, "Think back to the last place you saw it..."
Oh, wait, that's not her voice; that's mine.
A dozen times a day, John and I have the following conversation:
John: "Mom, can I have some apple juice?"
Me: "Yes, where is your cup."
John: "I don't know."
Me: (patiently) "Think
back to the last place you saw it..."
John: "I don't know!"
Me: (less patiently) "Go
find it. We're not starting a new sippy cup every time you want a drink. Only
one cup per day; that's the rule."
John: whine, whine, whine, whine
Me: "Go look for it if you want a drink."
John: more whining
Me: I start looking for it, while
he goes off to do something totally unrelated, largely unproductive, and
entirely unlikely to result in location of above-referenced sippy cup. I
finally give up, with the realization that the 20 minutes I've spent looking
for the damn cup will not result in 20 minutes of time-savings from not having
to wash an extra sippy cup that will serve as proxy to the cup that
theoretically still exists somewhere in the house and will at some point, with
enough searching, be located, albeit full of chunky, foul-smelling milk, or
fermented juice .
When something is lost, I think of Uncle GAR. (not my uncle, the boys'
uncle) Uncle GAR is good at losing things. Keys, hat, sunglasses, wallet, cell
phone...nearly every time he and his long-suffering wife are home for a visit,
it seems the weekend ends with the same scene: Auntie MAR making repeated trips
to load the car, while GAR frantically searches for this, that, or the other
(sometimes it's this, that, AND the other).
By virtue of being prone to losing things, Uncle GAR is very good at
finding things. I think his secret is persistence. He doesn't give up; he looks
until he finds it.
The night before John's big surgery...his exploratory laparotomy with
excision of retroperitoneal mass...I was panic-stricken. John's Marian medal
had gone missing. It had been given to him, along with one for me and one for
Matt, when he was first diagnosed. It said "O Mary, conceived without sin,
pray for us who have recourse to thee." I pinned it to his onesie every
day using the safety pin that held the ends of his broviac (central line) in
place. And at night, or in the hospital, while his central line was accessed
(negating the need for the safety pin), I pinned the medal to his silky green
blanket.
Because we had to be at the hospital very, very early for surgery, we
were staying in Columbia at Uncle GAR and Auntie MAR's house. That evening,
when we discovered it was missing, we all looked and looked for it, to no
avail. All four of us, but especially Uncle GAR. We finally gave up and went to
bed without having located it.
So we left for the hospital the next morning without it.
In the PICU, following above-referenced exploratory laparotomy. |
I don't remember exactly when, but sometime that day (I think that
morning before he went to work), Uncle GAR found it. It had mistakenly been
thrown away with the medical supplies we had used to flush his broviac the
night before. Yes, Uncle GAR had dug through the trash to find it. You know...it's
always in the last place you look...
Thank you, Uncle GAR and St. Anthony.
John with Uncle GAR and Auntie MAR |
Playing at the grain bin job site |
I still haven't found the phone, but when I was looking for it this
evening under the couch, I did find something else that had been missing...PW's
gum boots. So, maybe we'll call it a wash.
Monday, January 23, 2012
Sleep
Supposedly, it's right up there on the list of human needs along with food and water. But I'm here to tell you today that sleep is overrated. I don't think I've blogged this topic before. Warning: some deep, dark secrets and personal character flaws are about to be revealed.
Why?
I think because in my mind, I've worked this out to be our own personal cross to bear, refusing to believe anyone else has experienced/is experiencing what we are.
So, I don't like to hear:
"Oh, I know that's just awful. You must be exhausted. Billy never slept well until he was in the 5th grade"
Seriously, you think this is helpful...5th grade is 10 years away!
or (worse),
"Oh, I've been through that. It'll get better. They grow up so fast!"
Whatever. Clearly you have no idea. If you did, you wouldn't say something this stupid to me.
or (worse-er),
"Well, that must be awful. I can't even imagine what that's like. I was so lucky that my kids always slept through the night."
Why are you telling me this!!!!! Is this supposed to make me feel better?
or, the one that causes the most rage:
”Wow, we've always been so lucky with Sally's sleeping; I know I couldn't get up and go to work if I didn't have a good night's sleep the night before."
WHAT!!!! HELLLLLOOOOOOO?????? I WORK TOO! I cook clean-up after at least 3 meals a day AND run an increasingly busy accounting practice. ***have to admit here though, this has gotten better because I finally put the boys in daycare mornings 4 days a week.***
Keep in mind the person forming all these mental responses (me) is not playing with a full deck. Sleep deprivation makes a person cranky and irrational. All of the above statements were likely intended to be sympathetic, rather than rage-inducing. And, I realize that I too have found myself guilty more than once of saying a variations of these stupid things to desperate moms.
Ok, so back to my thesis: "sleep is overrated."
John taught us that a body can function on less than the recommended 7-8 hours of nightly sleep. A lot less. The first night John was at home, he screamed the.entire.night. All of it. I'm not exaggerating. His sleeping was terrible. The irresistible question from friends and strangers alike seemed to be, "Does he sleep well?" And when I would answer honestly, I would get one of the aforementioned responses. Well, that got old, so I kept it to myself and put on a happy, perky face.
So, nine months later, we found out that he had a big, giant tumor. And another little tumor. And diseased bone marrow. Hmm. Maybe that's why he couldn't sleep. (wouldn't eat and couldn't poop)
By this time, we were already accustomed to sleeping with him. It was the only way any of us could get any sleep. The time he spent sleeping in his bassinet was literally a few hours. Not a few hours at a time. A few hours. TOTAL.
The time he spent in his crib was similarly limited. The only way any to get any sleep was to become co-sleepers. So we did.
By the time we got to June and his diagnosis, we were well accustomed to sleeping with him, so sharing a hospital bed wasn't that much of an adjustment, though it took some convincing (and a power struggle between me and one of the nurses) to get approval to have a regular hospital bed and not a baby crib for our room. (that's probably a whole blog in itself)
We continued to sleep with John all though chemotherapy and beyond. It wasn't a big deal He was a quiet sleeper, even if a light one. He would lay there in his bed, perfectly still, literally for hours, just staring up at the ceiling, as Don Williams's Greatest Hits played over and over and over, until Matt or I would give up and fall asleep ourselves. We'd wake up and sneak out, then repeat a few hours later. Nothing but sheer willpower kept him awake.
You're probably wondering, "Why didn't you just Ferberize him?" (that means let him cry until he learns to go to sleep on his own.) Well, we did try that a few times between 6 and 9 months. Turns out, HE HAD CANCER! That's some guilt I don't want any other parent to know. And why didn't we Ferberize him later? Like after he was perfectly healthy? Well...it's not really an option when your child's bedroom doesn't have a functional door. And it wouldn't have worked anyway.
Finally, a few months shy of his third birthday, John's sleeping problems disappeared, and he's slept wonderfully since. We said, "Listen here, kid. This stops now. Go to sleep, and you will earn a special treat in the morning." Praise God, it worked. (the special treat was a new book)
Wait.
Don't think for a minute we've enjoyed great sleep since May 2010. Nope, nope, nopey, no, no. Don't forget about PW.
This child (as they usually are, I hear) is a whole 'nother story.
As an infant, he had to sleep upright because he seems to have been born permanently congested. So he'd sleep propped up or I'd hold him all night long. He at least slept some in the bassinet, but went on strike against the crib at about 13 months. That damn crib has been the most useless piece of baby paraphernalia in our house. Leave him in the crib to cry, and puke would ensue. Plus he had the, "I can't breathe. My nose is so stuffy" excuse. "Just hold me and rock meeeeeee!!!!!!!"
He goes to sleep fairly easily around 8:00/9:00. One of us lays down with him for about 10 minutes until he falls asleep, but invariably, he's trotting into our bedroom about midnight. It seems he prefers memory foam. And at least one parent. And it also seems that he doesn't actually really need much sleep.
"Put him back in his own bed!" you (and his pediatrician) shout. Ok...fine...I'll do that. At midnight. And 1:00. And 2:00. And 3:00. I think you get the idea. You think we haven't tried this? And for more than one night? We can get by on minimal sleep, but we can't get by on ZERO sleep.
John taught us to be ok with co-sleeping. Or so we thought. It really wasn't a big deal. Not a problem. We adapted, and we honestly weren't sure why people made such a big deal about kids sleeping with their parents, especially since he learned to sleep just fine on his own once he was old enough to be reasonable.
Now we know. Patrick will not hold still. And, he has to have his fingers entwined in my hair all night long. A hundred times a night, I scream at him, "LET GO OF MY HAIR!!!!!!!!" I imagine Matt gets really tired of hearing that.
We've tried benadryl. It makes him spastic.
This morning about 5 am, we realized we had lost track of him.
"Where's P. Dub?" Matt asked.
"Uh, I don't know," I replied.
We were imagining that he had gotten up to watch TV. (he can start the wii all by himself...we're so proud of him) Or getting himself a refreshing glass of iced tea. Or fixing a delicious breakfast of bread smeared with honey and peanut butter.
Thankfully, this time he wasn't. Somehow, he had managed to woller to the foot of the bed and was laying perpendicular, just beyond my feet. That's a first. Maybe he was needing some space. Fine with me.
Again, "why don't you Ferberize him?" Uh, well, now we have a functional door for his bedroom...but...he has this other problem. When we last attempted to implement Dr. Ferber's plan, he screamed for about 2 hours nightly without falling asleep. Somewhere in this time frame, he would throw up from screaming. After a couple nights of this, he started turning grey and green, as the wave of anticipatory nausea hit him during the bedtime routine. And the puke happened before he even uttered a single cry.
We tried this for at least a week with the same disgusting , foul, putrid result every night. And this was not him making himself throw up. This was genuine. He would get quiet as a worried look came over his face. Then his skin would turn cold and clammy, and the parent-in-charge would rush him to a hard-surface (easier to clean up) floor. We usually weren't quick enough.
I've managed to get the smell out of his carpet, but not the stains. I covered it with an area rug. Clever on my part, huh?
Well, anyway, that's where we are now. I get only a few hours' sleep nightly, and then I'm up early, early, long before dawn because my office is gently calling to me.
I console myself with thoughts of how I'll torture him during his teen years by waking him up at dawn's earliest crack. But I know in all honesty, I'll still be catching up on the sleep of which he has deprived me.
"So, why should anyone trust you to do their taxes?" you may be wondering. Well, it's like I said to start with:
Sleep is overrated.
Wednesday, January 19, 2011
Mennonite in a Little Black Dress
I love to write. I love word play. I love exploiting connotations. I love alliteration and synonyms. I love the rules of grammar, and I love to break them every now and then. Diagramming sentences was a blast for me in junior high. And I love to read things written by people who love to write because people who love to write are great writers. Since my second grade teacher introduced me Laura Ingalls Wilder, I have been addicted. For years, my preferred genre was fiction. Old fiction. New fiction. Historical fiction…anything BUT science fiction.
But when I became a mom, that changed. With John’s conception came a fascination with all things pregnancy, childbirth, and child-rearing. Thick books, glossy magazines, online articles written by experts, and discussion forums written by decidedly non-experts.
John’s birth only reinforced this obsession with facts for a couple reasons. First of all, the short and quickly digestible was all I had time for.
Secondly, I was at a complete loss as to how to make him happy, or at least how to get him to sleep. I was convinced the answer lay out there in cyberspace, or in one of my 14 magazine subscriptions, or in a voluminous parenting manual. Apparently, it didn’t, since I never ran across any article or chapter entitled “Kid Won’t Sleep? Could be Cancer”. Instead, I was reassured over and over that my newborn had colic, that vague, ubiquitous malady of babyhood. Later, when he was too old for colic, I read he was suffering the effects of teething.
And I learned we had been blessed with a “high-need child”, who would indeed be a joy to raise. “Thank God”, I thought. "There is nothing wrong with him...just me because I'm not havin' a bit of fun." I found time and again relief and reassurance in my research and truly believed there was nothing wrong. Essays by mothers of “high-need children” extolled the joys of motherhood. These virtuous Proverbs 31 mothers basked in the grace they found in sacrificing sleep and hygiene to nurse their newborns (or even toddlers) ad nauseum. Hindsight tells me this is all total bullshit.
Now. You may be wondering what the title of this post has to do with me being too nearsighted/self-centered/naïve/just plain stupid to notice I had an infant with advanced cancer. Well, I guess I have to admit I’m a little unclear about what one has to do with the other, but I write how my mind thinks, so if my track jumping is hard to follow, I apologize. It all makes sense to me.
I read the book Mennonite in a Little Black Dress during my mom’s last few days. She slept a lot, so there was a lot of downtime, and I made lemonade out of a lemony situation and took the opportunity to read an actual book. I found it by accident, browsing e-books on iTunes. It was not what I expected. It’s a short memoir by a woman, raised in a Mennonite community, who left to pursue a secular life and later returned to live with her parents while recovering from a divorce and a car accident. The author, Rhoda Janzen, happens to be an English professor, who is an incredibly gifted writer.
Her grasp of the English language and its nuances is superb, but it is as much her willingness to be completely honest and brutally frank in describing the experience of her heartbreak and recovery from heartbreak that made the book so enjoyable for me. The woman writes the way I aspire to write. Raw. Intense. Personal. Emotional. Academic yet humble. Bold and unapologetic. She does no whining. She places no blame. She is at the same time both proud and critical of herself.
So that’s what one has to do with the other. Congratulations if you can connect the dots. I'll now remind you that this blog is marginally proofread; if I took the time to polish everything to facilitate coherence, I would have nothing to post.
Writers who sugarcoat the realities of life do no service to their readers. People say life isn’t fair, but the fact of the matter is, it is unfair to everyone, just in different ways. So perhaps life is fair in its UNfairness? Just a thought…probably a whole ‘nother topic.
Thursday, January 13, 2011
I need another project?
I am an accidental blogger. I became addicted initially and superficially thanks to the feedback from the guestbook sign-ins on John's jounal. The guestbook entries from family, friends, and strangers lifting my family up in unceasing prayer was powerful medicine for my aching heart. But as time went on, I found joy in journaling. It was cathartic. John was not the only one who needed healing from cancer. Though I did not suffer physically from cancer, the disease affected all aspects of my life.
My relationship with my husband would never be the same. How I view myself as a mother was forever changed. My career was jolted and completely halted, before veering off in an exciting and scary new direction. The experience was so rich and painful. So beautiful and ugly all at the same time. Shattered were my pride and self-reliance. Broken emotionally and naked spiritually, I had, in the midst of my grief and regret, an opportuinty to experience the healing power of the Holy Spirit in a way most people never do. And with this came the opportunity to use a gift God gave me to share His mighty healing power. So, I e-shared the ups and downs of the experience on the web. I shared the medical stuff and the non-medical stuff. The things that made us patients, and the things that tested our patience.
Six months. Thirteen hospial visits. Eight cycles of chemotherapy. Three surgeries, at least. A few blood transfusions. Dozens of shots. Scores of blood draws. Months of nightly intravenous feedings. Two many tests to count. And then when that was over, six more months of pills (for a child too young to swallow pills), more tests, needle pokes, and a monthly pee-in-the-bag test. Then oral surgery to repair the tooth decay left behind in the wake of John's jaw tumor and chemotherapy.
John was healed. His port-a-cath was removed January 2010, eighteen months after he was diagnosed. He was a little more than two years old and about six weeks shy of welcoming a new baby brother.
My mom (John's grandmother) rejoiced with the rest of this as John reached this incredible milestone which had seemed so far away eighteen months earlier. She rejoiced even in the midst of the news that her own cancer had returned. After 15 years, the unthinkable had happened. My joy in my son's healing was dampened by my heartache of my mother's relapse. The normal I had so desperately wanted was not to be had. Cancer, it seemed, would never be out of my life.
I started a CaringBridge website for my mom to share updates with those interested, but posts were rare. Knowing from the outset that the odds of a good outcome were slim for her this time around (though she would not admit it), I found it nearly impossible to pour my heart out in the manner that had been so easy for me during John's treatment. I stopped writing on John's website too. You may have assumed that I was just not interested. You would be wrong. I just couldn't face writing how I really felt. Since I couldn't write what I truly felt, lest I actually feel what I truly felt, I wrote nothing. To write a sugar-coated, pollyanna version of the ugly truth was of no value to me.
I haven't posted anything since October 12, 2010 (or somewhere around that date). That was the day my mom died.
But, oh, how I have missed writing. There are so many things I have wanted to write over the past year but have avoided doing. I've missed a lot of opportunities to record some really rich insights, missed opportunities for feeling and healing. I would like to keep a private journal for "me only" to read. But I know I lack the motivation to write without an audience, be it a real audience or an imagined one. On the other hand, I want so desperately to keep a record of the little everyday joys of motherhood to one day share with my children. If I wait until I possess enough intrinsic motivation to wirte for "me only", it will never get done. So, for now, this is the closest I can come to pouring my heart out to myself in a journal.
My intent is for this blog to be an account of our real life. The normal parts and the not-so-normal parts. The mundane and the extraordinary. Laughter and tears, vomiting and poop. First words, first steps, first days of school. Potty training and weaning. Cooking and cleaning. Sowing and reaping. Sewing and ripping. Old dogs and baby kittens. Bottle calves and visiting goats. Maybe it's something you want to read; maybe it isn't. But it doesn't matter. It's (first) for me to write, and (second) for you to read. I intend for it to be raw and largely uncensored. That being said, the provocative and profane will be politely omitted, as will complaints about my dearly beloved, Mr. Clark. I'll allow you to assume our marriage is perfect.
Tax season is here. My kitchen re-decorating project is unfinished, as is my bathroom re-decorating project. And my parlor re-decorating project. I'm seriously lacking physical exercise, and my life is generally disorganized. The last thing I need is another project. But, I'm starting another project anyway.
We'll see how it goes.
My relationship with my husband would never be the same. How I view myself as a mother was forever changed. My career was jolted and completely halted, before veering off in an exciting and scary new direction. The experience was so rich and painful. So beautiful and ugly all at the same time. Shattered were my pride and self-reliance. Broken emotionally and naked spiritually, I had, in the midst of my grief and regret, an opportuinty to experience the healing power of the Holy Spirit in a way most people never do. And with this came the opportunity to use a gift God gave me to share His mighty healing power. So, I e-shared the ups and downs of the experience on the web. I shared the medical stuff and the non-medical stuff. The things that made us patients, and the things that tested our patience.
Six months. Thirteen hospial visits. Eight cycles of chemotherapy. Three surgeries, at least. A few blood transfusions. Dozens of shots. Scores of blood draws. Months of nightly intravenous feedings. Two many tests to count. And then when that was over, six more months of pills (for a child too young to swallow pills), more tests, needle pokes, and a monthly pee-in-the-bag test. Then oral surgery to repair the tooth decay left behind in the wake of John's jaw tumor and chemotherapy.
John was healed. His port-a-cath was removed January 2010, eighteen months after he was diagnosed. He was a little more than two years old and about six weeks shy of welcoming a new baby brother.
My mom (John's grandmother) rejoiced with the rest of this as John reached this incredible milestone which had seemed so far away eighteen months earlier. She rejoiced even in the midst of the news that her own cancer had returned. After 15 years, the unthinkable had happened. My joy in my son's healing was dampened by my heartache of my mother's relapse. The normal I had so desperately wanted was not to be had. Cancer, it seemed, would never be out of my life.
I started a CaringBridge website for my mom to share updates with those interested, but posts were rare. Knowing from the outset that the odds of a good outcome were slim for her this time around (though she would not admit it), I found it nearly impossible to pour my heart out in the manner that had been so easy for me during John's treatment. I stopped writing on John's website too. You may have assumed that I was just not interested. You would be wrong. I just couldn't face writing how I really felt. Since I couldn't write what I truly felt, lest I actually feel what I truly felt, I wrote nothing. To write a sugar-coated, pollyanna version of the ugly truth was of no value to me.
I haven't posted anything since October 12, 2010 (or somewhere around that date). That was the day my mom died.
But, oh, how I have missed writing. There are so many things I have wanted to write over the past year but have avoided doing. I've missed a lot of opportunities to record some really rich insights, missed opportunities for feeling and healing. I would like to keep a private journal for "me only" to read. But I know I lack the motivation to write without an audience, be it a real audience or an imagined one. On the other hand, I want so desperately to keep a record of the little everyday joys of motherhood to one day share with my children. If I wait until I possess enough intrinsic motivation to wirte for "me only", it will never get done. So, for now, this is the closest I can come to pouring my heart out to myself in a journal.
My intent is for this blog to be an account of our real life. The normal parts and the not-so-normal parts. The mundane and the extraordinary. Laughter and tears, vomiting and poop. First words, first steps, first days of school. Potty training and weaning. Cooking and cleaning. Sowing and reaping. Sewing and ripping. Old dogs and baby kittens. Bottle calves and visiting goats. Maybe it's something you want to read; maybe it isn't. But it doesn't matter. It's (first) for me to write, and (second) for you to read. I intend for it to be raw and largely uncensored. That being said, the provocative and profane will be politely omitted, as will complaints about my dearly beloved, Mr. Clark. I'll allow you to assume our marriage is perfect.
Tax season is here. My kitchen re-decorating project is unfinished, as is my bathroom re-decorating project. And my parlor re-decorating project. I'm seriously lacking physical exercise, and my life is generally disorganized. The last thing I need is another project. But, I'm starting another project anyway.
We'll see how it goes.
Labels:
blogger,
cancer,
caringbridge,
God,
heartache,
Holy Spirit,
journal,
mother,
normal,
project,
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