Giggle Pants McGee

Meet the new girl.

Meet Gladys, the Gulf Coast box turtle:

At the vet yesterday, while getting Cyril groomed, the subject of box turtles came up, as it usually does with my vet.  It just so happened that the Humane Society had given the clinic a turtle with a shell infection to be treated and then be adopted out, and we have plenty of room. And, as Gus is not a good eater, which has always worried me, adding another turtle to the habitat can trigger competitive eating, so Gladys will be a therapy turtle, as well.  So she's useful, as well as pretty.

Milestones

Crawling:  

And pulling herself up:

Some kind of weird poetic justice.

Viv is SO going to be a soprano, and a really high one, at that.

Far away and all alone.

I leave for Montana on Wednesday, and I'll be going alone.  Christian got the week off for Mom's funeral and all the requisite support duties, so he really can't be away again this soon.  Viv will be cared for in a rotation of battling honorary aunts who are all a little resentful that they have to share her.   

I haven't been away for a job since my only other Montana gig singing Messiah, but that was to the ever charming Billings, the land of it's-eight-o'clock-where-did-everyone-go?  This time, I'll be staying with a host family, which I haven't done since I spent that semester in London my junior year of college.  I'm hoping I won't have to chat or mingle or be chipper and chummy too much.  My conversation would just be so stunning:  

Them:  How are you?

Me:  Really terrible.  I'm devastated by the loss of my mother and I'm away from my husband and child and life means nothing away from them and the world will suckuntilthedayIdie.

Them:  Oh.  Um, well, your room is down the hall.

I hope they have laundry facilities I can use.

Nighttime

I still don't know how we're all going to do this, live without Mom.  Nights are the worst.  I keep expecting to see her walk by in her flowered cotton shorts, trying to tidy up before going to bed.  Seeing her grave filled and her name on a little plate at the head of it was shocking, terrible.  

Every night I think of her and the long future ahead for all of us before we can see her again, if there is such a thing as heaven.  I miss everything, the flip flop of her shoes, the hairclips on all the tables, the smell of her hand cream, her tubes of pink and coral lipstick in the bathroom drawer.  I miss her saying the rosary in the morning and checking on the baby at night.  I miss her pancake mix with the thousand different types of whole grain and her fondness for chocolate cake and pumpkin pie.  I miss the way she loved the grandkids, how she truly cared about their opinions, how she could soothe any hurt or worry by rocking them in her chair.  She always said she wished I had a rocking chair at my house, other than the tiny one from the upstairs guest room.  She wanted to rock Viv to sleep at night whenever she visited.  

Life will be returning to "normal" soon, which is when this will get even harder, I think.  Dad asked me today when he thinks we'll all hit the ground, and I said I thought it would happen when everyone had gone home, back to their lives.  I have to go home next week to get ready for Montana, my aunts and uncles all have their jobs and kids and grandkids of their own.  Our grief will become something we have to bear without putting the burden on others.  

Dad gave me an article today about how most people have very little patience with the grieving process of others, how the five stages should be on a timeline with a quick end.  All I can think of is how I don't think I'll ever get to acceptance, because that would mean that Mom is truly gone.

The hard part.

I don't know if I should have stayed so long with Mom after she had passed yesterday.  I didn't want to leave her alone, but she stopped looking like herself after a while, and I stopped being able to play the "she's going to wake up" game.  

The problem is, I keep expecting her to walk around the corner from the kitchen to the living room, looking exactly as she always has, in her flowered cotton shorts and yellow t-shirt, with the two silver clips in her hair to keep it from curling.  I keep looking for the yellow handbag, but Kyan wanted it to remember her by.  I keep waiting for her voice to call to us from the kitchen, asking us if we want food.  She just can't be gone.  

It was too fast, too unpredictable, the way she went.  How could she have had pneumonia badly enough to end her life?  How could they not have known?  We have a thousand what ifs and whys and none of them will bring her back.  I'm angry at her for not bothering the nurses more if she wasn't feeling well, but she hated to be a bother.  I'm angry at the doctors for not giving her prophylactic antibiotics, just in case something like this happened.  I'm angry that we were robbed of Mom, when we expected at least a few more years, or at least Thanksgiving and Christmas in Seattle while she was there for the marrow transplant.  I didn't expect that I'd be back in Mom's house, five days after I left, but without her here.

This is HER house.  There isn't a room in this place that she didn't decorate.  She bought every piece of furniture at estate sales or garage sales or local shops where she could find a good sale. That makes this place sound shabby, which it isn't.  It's pretty and comfortable and elegant, except for the livingroom carpet, which she wouldn't get rid of.  I hate that carpet.  

Why isn't she here?  Why isn't she home to see her grandkids, or at least at the hospital where the kids could see her on Skype.  Why isn't she still alive?  It makes no sense, which, I realize, is something that everyone says when something like this happens, but now it means something to me.  She was FINE.  I spoke with Mom twice on Thursday, once on our usual morning call and once on Skype, when I was feeding Viv.  She liked to be part of our daily lives and watching Viv eat is pretty funny, besides.  She even posted to her Caring Bridge website that night, not ten hours before she went to the ICU.  

Mom didn't want to die.  She wasn't ready, she wanted to watch her grandkids grow up.  She was supposed to live to 100, surrounded by great-grandbabies.  When she fell unconscious, she must have been pissed, in that corner of her mind where she was still aware of what was happening.  I'll bet she was thinking, "No, not yet!  I need to do so much more, be with my family, it's not time." And oh man, would she have been furious that we all halted our lives to be here.  She hated it when we interrupted our routine for her.  

What's my Dad going to do without her?  How do you make your life again when the person you spent the last 43 years with is gone?  How do you sleep in your bed when the last time you slept there, your wife was with you?  

She can't be gone.  It's not possible.  Too many people loved her, depended on her.  She was too young, too healthy, even with the cancer, too concerned with antioxidants and working out, too active to die.  How is it possible that she's never going to visit us again, that she'll never sit on our couch and say how much she loved to visit us, and how our house is so cozy.  How will Viv not wake up to Grandma holding a bottle, waiting for her?  How is it possible that Viv won't know her Grandma Judy?  

It was too fast.  Too unfair.  I didn't get to say goodbye, I didn't get to hold her hand while she died.  I love my mother, she was my hero.  She was my savior, in a very real sense.  No one else could have cared for me the way she did when I was small and sick.  I have such memories of her holding me, walking through the house in the middle of the night because I was too sick to stay asleep, and she would let me hold the crystal bell my aunt Barb brought back from Germany.  It was special and made me feel like I was being given a treat.  She would carry me outside to see if there were any crocuses, after the long winter.  I know she was over protective, but I honestly didn't care.  I was so safe with Mom.  

I'm now thinking awful things, like tonight at church.  I saw all of the extremely elderly ladies and I though, "What makes them so special that they're here and Mom isn't?  She was the best of all of them."  I feel truly wretched for these thoughts, but that doesn't make them go away.  Mom should have gotten a pass, a dispensation, an indulgence. She was too kind, too loving, too giving.  Why was that taken away from us and the world?  She should have been exempt.  

I don't want to hear that she's in a better place. She's not.  This is the better place, where her grandkids are, where we are.  This house is the better place.  Her rocking chair is the best place, where she held almost all of our kids, rocking them to get to sleep.  She got to hold Andre in her hospital room, so she got to rock him there.  She needed to be able to hold him until he slept here, where she belonged.

I don't want to be planning her funeral, but I have to.  We all do.  I don't want to think about caskets and flowers and fucking food.  I want to think about her next reaction to a new outfit of Viv's, to how much weight Andre has gained, to Jayden's t-ball game outcome, to a Kyanism or to one of Declan's new words.  I want to be able to give her the video I take of Viv almost crawling, just to hear Mom's reaction.  Her reactions were always the best.  My cousin Amy always said that you called Mom or one of her sisters if you wanted a good, satisfying reaction to news, good or bad.  I want to be sitting on the downstairs couch with, watching "A New Leaf" again, hearing her exclaim about the poor condition of my feet.  But I don't want to be here without her.  

Without her.  That's going to be the rest of our lives.  Without Mom.  It's going to suck.

I want my mommy.

Slowly and quickly.

Each day seems to drag on as we wait for Mom's cytogenetic test results.  They determine how the doctors rate prognosis, which seems awfully callous.  If we didn't know about chromosomal abnormalities pointing towards poor outcome, would we view the cancer any differently?  Is it just for the insurance companies so they know what to allow for treatment and what to deny?  Is it to give us a realistic notion of Mom's chances or is it only to help target treatment?  As Tina keeps saying, Mom isn't a statistic, and she's doing very well so far, so maybe the cytology will have little impact on her actual outcome, but what does knowing you have a genetic tendency that makes your cancer less responsive to treatment do to your morale, which is a key factor in treatment success and recovery?  

1 in 10 to 20 adults with ALL have a chromosomal abnormality called Ph1 that can indicated a poor response to chemo.  If Mom has Ph1, then she may not qualify for a marrow transplant, which is usually the best bet for remission.  I feel tense and angry that the test is taking as long as it is to be completed, as it seems to be all we can think about.  However, Rigoletto is next month, and that's seeming to approach all too rapidly, as I'm not memorized yet.  Thank God I'm only in three scenes, although even they seem impossibly dense right now.  Frigging Verdi.  It couldn't have been Handel, could it?  

So, we wait and play with the babies and chew our nails and cook meals and do laundry and edge lawns (Marianne, you tireless badass) and go to sleep each night wondering what news we'll wake to in the morning.  Every night we just pray for the best and cry a little as we wonder if it will be the worst.  

A bit of good news.

The cancer is not in Mom's spine.  She started chemo today and it was a bit rough, but she's been feeling fine since it ended.  I'll be Twittering updates as well as posting them to Mom's Caring Bridge website, https://www.caringbridge.org/visit/judyblewett.  

Last night, Kyan, my godson and second oldest nephew, was lying in Mom and Dad's bed watching Snow White.  Mark asked him if he liked doing so and he said, "Yes, when I'm here I feel like she's with me."  Sniff.

Every worst case scenario.

Mom does not have the type of leukemia we were hoping for.  She has ALL, the most common type of childhood leukemia, but a rarer type for adults, and one that is harder to treat.  Mom had to have a lumbar puncture to determine if there are cancer cells in the central nervous system.  When the puncture was performed, chemo drugs were injected into the spinal cord, just in case.  She will begin chemo on Friday, which will initially take a month, and then she'll have maintenance chemo and then stem cell transplants in Seattle.  And she will not rent an apartment to save me bother, despite her protestations.  

This is going to be a long, sucky road.

Why can't the good be left alone?

Why must there always be bad to temper the good?   I hate having my pessimism validated.  You all know the good, here's the shit stack:  Mom has leukemia.  

I cannot even write it without wanting to throw up.  She was admitted to the hospital Monday as she had gone to the doctor to have her lightheadedness, shortness of breath and fatigue analyzed, and her hemoglobin was so low that they admitted her for a transfusion.  She had her marrow biopsied today, so we'll know the type tomorrow, and the DNA typing will be done next week.  She'll come home for two days starting tomorrow afternoon, and then will be in the hospital for a month for chemo.

This is a woman who has eaten a healthier diet than an army of vegan hippies, who takes vitamins of varying degrees of strangeness, who works out, who does everything right, and this still happened.  She is the epicenter of the universe to the grandkids, and they won't be able to see her for four weeks.  There is no shit like cancer shit.    

Follow Up

When an infant has a UTI, there's a concern that an abnormality of the kidneys, urethra or ureter could be causing reflux of urine, leading to repeat infections.  When Viv was diagnosed with the UTI last week, the pediatrician at Children's and our own pediatrician both recommended an ultrasound and voiding cystourethrogram to evaluate the health of Viv's kidneys, bladder and involved anatomy.  So, yesterday, we took her back to Children's to have both done.  I am again grateful that we are lucky enough to live in Seattle.  Children's staff members all seem to have excellent senses of humor.

The ultrasound was easy, Viv was perfect and laid still with nary a fuss for the 10 minutes it took to capture pictures of her TEENY TINY ORGANS.  We saw her wee little uterus, which was a little odd.  I felt like I was invading her privacy.  Christian thought her kidneys looked like a baboon's face.  The ultrasound technician had never heard that one before.  No, literally.  She guessed that Christian was an artist, as she said that artists and engineers always see bizarre images in the ultrasound.

The VC was less pleasant.  Viv had to be catheterized, have dye injected via the cath into her bladder and then be x-rayed voiding.  She was incredibly calm, though, and didn't flinch or fuss when the nurse inserted the cath, which was remarkable.  The nurses were impressed that we had thought to bring Viv's favorite toys, as, apparently, most parents don't think of it.  Oh, and everyone said she was just beautiful and called in other staff and faculty to see her.  She's the prettiest baby ever.

Anyway, both tests showed that everything was functioning normally, and that she doesn't need to be on prophylactic antibiotics, thankfully.  We're relieved, for us and for her.

That first trip is the scariest.

Until this week, I felt very lucky that Viv has been so healthy, especially as she wasn't breastfed, and without clostrum, she may as well be thrown into a pig wallow in Mexico for all the immune system she has. She had a mild case of croup that cleared up on its own, requiring only occasional treatments with albuterol delivered via nebulizer and her demeanor never really changed during that short illness.

She woke up Sunday, however, with a fever and seemed listless and out of sorts.  We called the doctor that night, but she was out of town, so we spoke with the consulting nurse at Children's.  She told us to just keep an eye on her, especially as she had no other symptoms, but she vomited twice that night and couldn't sleep, and was running a higher fever the next day, which was, of course, a holiday.  Another call to the consulting nurse, another keep an eye out.  We made an appointment for Tuesday, and my lovely pediatrician examined her and took a urine sample, which looked suspicious.  Her fever was 102.5 by then, and she vomited up the Tylenol we tried to give her to take down the fever, all over me, the doctor, the floor and her own clothes.  However, by then, the fever had climbed to an alarming 104. 3.  She was so hot it was difficult to hold her, so we tried to cool her using cold washcloths.  The doctor's office was out of fever reducing suppositories so the pediatrician actually ran to the pharmacy for us.  It was quite above and beyond.

However, by the time she returned, Viv was not improved, so she called Children's and they asked that we bring the poodle over.  A slightly tense drive during which I was convinced that Viv was not, in fact, sleeping, but was in a coma, and we were in the ER, but I couldn't have felt more low rent, as I hadn't anticipated the barf episode, and had no change of clothes.  So, I carried in my sick baby, swaddled only in a diaper and an industrial towel from the doctor's office.  However, the suppository had, blessedly, started to work and she began to improve.  They did give her a teeny, tiny hospital gown, which was actually quite fetching, but then Shelly arrived with actual clothes.

After a four hour wait, during which they took a urine sample via catheter (which I hope to never, ever have to do to her again), the urinary tract infection was confirmed and we were sent home after a primary antibiotic dosing.  I just got a call that it is an E. coli infection, the most common of the childhood urinary tract diseases.  The next morning, she was hugely improved, her normal, happy self.  Now we just have to take her back to Children's for a screening ultrasound to examine her ureter for defects.

I am curious as to why she didn't sleep last night and why she had worked herself into a frenzy before bedtime.  Barfy McSpewy couldn't keep down her antibiotic until the second go, so she was grumpy until we finally got her to sleep around 10:30.   Once she was asleep, though, I kept prodding her to make sure she didn't have a concussion, because, you see, she fell off the bed yesterday.  I set her in the MIDDLE of a pile of laundry, surrounded by bedding and clothes, and I didn't even know she could roll over the way she did. Why do children always celebrate milestones with grievous personal injury?  And why do things always happen so quickly when one has merely turned one's back to grab a blanket?  Anyway, she was, and is, fine, but I was terribly afraid that she was going to bleed on the brain, so I kept checking her eyes and pupils.  Right now I'm just letting her sleep.  Poor kid deserves it.

So it's come to this.

When we brought Viv home, we were so panicked and desperate that we purchased our equipment willy nilly with nary a thought to ease of use or any similar considerations.  We bought our stroller and car seat as a set, and I knew they were very safe, but I had no idea they were so damn chintzy and awkward.  I've come to despise the very sight of our horrid, bulky, cheaply made stroller whose parts fall off with a visceral passion.  It's incredibly heavy, I can't lift it with one hand, it's difficult to open and close and it's so large that it occupies the entire space of the trunk and I cannot navigate store aisles without knocking over displays in a comical, sitcomish fashion.

Still, I had no idea that, in a post from several years ago in which I cruelly made fun of parents and their strollers, I would jinx myself into becoming the worst of them.  We bought a Bugaboo today.  More specifically, a Bugaboo Bee, one of the most expensive and pretentious strollers available on the market.  Well, in the top five of pretentious strollers, after Stokke, Inglesina and Orbit Baby, and above Quinny and Phil and Teds, although not by much.  However, we did get the stroller secondhand from Craigslist for a really excellent price, and it had been used a very limited amount of times.  It's the smallest and lightest weight Bugaboo, and folds with one hand and fits behind the front seat of the car.  It is a thing of beauty and genius and I adore it.  Too much.  It's embarrassing.  I still will never get a luxury SUV, though, despite that seeming to be the next link in the fancy pants chain of events.  My Toyota is good enough for this family.

Oh come ON.

Last Friday, I finally had my Nissen fundoplication.  I spent the night in the hospital and came home Saturday.  I was catheterized during the procedure as I was under general anesthetic, and developed a bladder infection by Sunday morning.  It's disturbing to urinate blood, even when you're half expecting it.

After calling the clinic which houses my surgeon and his residents and fellows and being ordered by the nurse to bring my sorry sad self down within a half hour, I was driven down my Mom, gave them a sample and waited two hours in uncomfortable chairs in the waiting room only to have the initial orders given to me on the phone contradicted by the front desk staff, who told me that, despite the initial assurance that I would be squeezed in by 10:30 am, my appointment with the resident was not, in fact, until noon. This was at 11:30, and I just couldn't wait anymore.  

After waiting three hours at home, I called the office, received a call back at 4:30 and was told my sample was full of unfortunate substances and a prescription had been called in for me.  But what did they call in?  Not your average, run of the mill Sulfa drug, no.  They called in anthrax-busting Cipro.  What the hell was in my pee?  

As I can't swallow pills yet, I took the first pill in ground form and hoped for few if any of the myriad of terrifying side effects listed in the pharmacy handout.  When I awoke this morning, my throat felt full and sore, and upon investigation, I saw the normally pink roof of my mouth covered with white patches from candida.  The ground pills wiped all of the good bacteria out of mouth and now I'm reduced to gargling tea tree oil twice a day, because the three types of ground pills I'm taking in addition to the antibiotic aren't foul enough.  However, the narcotic pain pills are giving me fun dreams, even though they're keeping me from knitting as I can't focus my eyes.  I'll take it where I can get it.

Time, you deceiver.

Five months old, Viv is five months old today, and is celebrating by coughing her lungs up from a bronchial virus.  Can she be this big?  She weighs 15.8 pounds, according to the doctor's scale, still spot on at the 75th percentile, but lanky.  She has a long, skinny midsection and all of her pants, while too big in the waist, are already too short.  Her twiggy arms are utterly unlike her pleasantly hamhocky thighs.  She also has really big feet.  Can it be that she'll be tall?

This kid, this little peanut has completely reordered the way I think about life, and even though it's going by way too fast, the changes she undergoes every day are so exciting that I eagerly await each new coordinated hand eye movement.  She smiles every time she sees me, even if I've only been out of the room for a second.  Every morning, she wakes up happy, thrilled to bits to be seeing us again.   I wondered, before bringing her home, how to spend time with her.  What would we do?  Now, the days seem to fly.  I chew on her ears and cheeks constantly, and the bald patch on the back of her head is more bald because I rest my cheek against it.  She likes to play by herself already, which I hope is a good sign for her future intellect.  She's teething and so droolier than a hungry basset hound, and she's eating real food, so the mess is substantial.  She goes through five bibs a day at least.  She's sitting up almost entirely on her own and she can roll partially over in both directions.  She's an utter genius and I love her so much I have to close my eyes and remember to breathe.

Manometry twice, fix once.

I had debated whether or not to repeat the worst one of the battery of tests I underwent in September of 2007 to determine if I was a candidate to have my hiatal hernia repaired, as that horrible test showed the first time that my esophagus had so little motility that I could only have the hernia partially repaired.  This did not make me happy.

Before I scheduled the partial, I wanted to meet with the surgeon to see if there was any way I could have the full, and he recommend the repeat manometry to check if the motility had improved. He thought the improvement unlikely, but as it had been a year and a half and a really, really wanted the full repair, I redid the test.  It was as wretched as I remembered, full of gagging and nose pain, but it turned out to be worth every discomfort as it showed that my motility had improved to the point where I can have the full repair.  This means no more stomach drugs, no more reflux, no more pain, and that makes me very, very happy.

Sad, lonely Fritz.

Fritz is destined to be alone, I think.  Poor little Pierre was lost to us today.  He never was quite himself after the beak injury, and he wasn't terribly hale to begin with.  Christian found him on the floor of his cage today, emaciated and very weak.  I tried to feed him with a needleless syringe, and he ate for a while, but gave up after filling his crop.  His little heart and kidneys were most likely too weak.  

We'll miss his little fuzzy butt terribly.

They're actually implanting a microchip with that syringe.

I'm not a conspiracy theorist.  I don't believe that there's an Area 51 UFO coverup, I think that JFK was shot by one wacky guy, I think that Elvis is long dead and I don't think that Beatles' albums played backwards relay a secret message.  I believe in science, and that, to be accepted as fact, any scientific findings must have consistently repeatable study results.  And, if the author of a non-repeatable study admits that his results were falsified, the conclusions of that study should be deemed void.  

It shocked me when I learned that Wakefield's single, small sample sized study caused an estimated 12% drop in the vaccination rate among children.  Hundreds of thousands of parents believed the anecdotal evidence of one physician (and their countless friends who repeated the findings of the study as fact) above the adamant assurances of most of the rest of the medical community, and thousands of children were put at risk because of (repeatedly disproven) fears about mercury-based preservatives in vaccines.  It was believed that the medical profession was lying to parents about the true risks of these vaccinations, and that the government was in league.  

There is so much irony in this controversy.  Seemingly, those who quickly jumped on the anti-vaccine bandwagon didn't bother to do even the most rudimentary search to reveal that no mercury-based preservatives have been used in regular childhood vaccines in eight years (and most for much longer), or that multiple similar studies were unable to confirm or even approximate Wakefield's findings.  Parents who believed they were protecting their children from the risks of developing autism hung on word of mouth tales of seemingly normal children who, after their first or second round of vaccinations, suddenly developed symptoms pertaining to the autism spectrum.  They didn't bother to read that these symptoms emerge in vaccinated and unvaccinated children alike at the age where social skills are emerging and difficulties with those social skills become evident, which is at the same age where some vaccines are recommended.  The link between the two is coincidental, not causal.  

I see the desperate need to blame as being the driving force behind these controversies.  An imperfect child must have been damaged, as the genes of the parents couldn't possibly be the culprit.  The diagnosis of autism must be crushing to parents, but especially those who have placed all of their hopes on the future of their child.  Again and again I've seen in parents my age the same desire to have children who are the fulfillment of their lifelong quest to matter, children who are the answer to the unsatisfying career, or the tarnished dream to change the world.   Children who must be raised in the most progressive, the most correct, the most expensive way, because then, and only then, will the parent feel as though they have succeeded.  And what would a disability do to those parents?  Would it mean they have failed?  That they chose poorly for their child?  

Viv has been vaccinated.  She was vaccinated because I couldn't find even one shred of evidence, in all my reading of the scientific journals, that vaccines cause anything more than a mild fever in almost all children.  There are, of course, rare instances of life-threatening reactions to vaccines, usually because of an allergy to an ingredient, but these instances are so few and far between that I could only find a few single case studies detailing them.  

Children with suppressed immunity cannot be vaccinated, because live virus strains can fatally infect their defenseless systems.  Therefore, to keep infections such as measles from coming into contact with children who cannot fight them their own, our child, like other healthy children, has been given the vaccine to create herd immunity.  

We will continue to vaccinate our daughter.  I believe it is our responsibility to protect our children as well as the children who cannot protect themselves.  

Mark, I'm expecting to hear from you about this one.