Mendolonium

Sleep.  Sweet, sweet sleep.

With a baby who has been up to nurse multiple times a night for the past 360 nights I could sleep for days.  Anna woke up for, I don’t know – the sixth time maybe, to nurse sometime just after the sun came up this morning.  Mercifully, she nursed peacefully and then we drifted off back to sleep together with me curled around her tiny milk comatose little body.  Sometime after that, the boys woke up and played quietly together – for once, deciding not to wake their parents.  Lovely, really, except this is a weekday where we all have to go to work or school and the children are supposed to be our alarm clock.  Jeff, and Anna, and I were sleeping ever so soundly when Jeff woke up, looked at the clock, and said in a panicked voice, “It’s 7:50!”  We raced through our morning routine in fifteen minutes.  As I drove Thomas to school, hitting every red light along the way, I reassured Thomas that it wasn’t his fault that we were running late.  “Whose fault is it?” he wanted to know.  Of course he would ask that – so I blamed the baby.  I mean really, it is her fault I am so exhausted I could sleep forever.  We arrived at school three minutes before the bell rang and after politely shoving Thomas out of the car I flew back down the hillside.  I had a carefully scheduled doctor’s appointment on the other end of Pasadena this morning…carefully sandwiched between the time I needed to drop Thomas off and the time I had to leave for work to make it in to prepare for a 10:30 am meeting.  At the Doctor’s office they asked for a copy of my insurance card and I a realized with a sinking feeling that I had left my wallet at home.  So much for careful timing.  The doctor was, miraculously, running on 15 minutes behind schedule  (pretty much on time in my experience of the medical profession) and I got in and out quickly.  I murmured words of thanks to Happy Fun Bag (specifically the emergency $20 tucked inside of it) so that my forgetful wallet-less self could pay for parking.  Then I had to go back home across Pasadena; I have to have my wallet at work – it is a rule that we must have to have two forms of ID on us.

I raced home only to find myself being pulled over at what looked like a police checkpoint.  It seemed an odd time of day for a drunk driving checkpoint and I waited behind another car as a man in an orange uniform and a police officer talked with the car in front of me.  I felt the minutes oozing by, growing more worried about my potential lateness and wondering if the officer was going to ask for my license – which was in my wallet!  Orange uniform guy approached the car and asked if I cared about the environment.  Well yes I do…where was this going?  He explained that they were running an emissions checkpoint and that it would “only” take 10 – 20 minutes for me to participate.  I looked at him and said, that I couldn’t do it today.  He should have taken one look at the three car seats in the back of my car and realized his was a lost cause with me.  I find it hard to believe that any parent of three children would sit there for 20 minutes; if I’ve got 20 minutes to spare I am going either take a nap or get shit done.  Also, for goodness sake I drive a Prius.  I am pretty sure I don’t have an emissions problem.  Orange uniform man persisted, telling me that if I cared about the environment I would spare a few minutes.  Then I got angry (I am really not the person to give a lecture on environmentalism to), said no, and got out of there.  I continued home, acquired my wallet (but forgot my lunch).  I drove as fast as I could to work through heavy traffic and arrived seven minutes before my meeting – which my visitor had, of course, already arrived at.  I felt a bit like an unprofessional fool walking in later than the visitor I was to meet with.  Sigh.

Later today I initiated a process which is going to result in some unpleasantness, how much I do not know, but potentially life-changing levels of unpleasantness.  I cannot and will not write about the details here in public, however, I write, in part, because it is cathartic to me so it will be difficult to write honestly without mentioning it at all.  For the sake of conversation I shall simply refer to it as “The Unpleasantness”.  I will tell you that The Unpleasantness has nothing to do with my marriage or my children – we are all happy together.  The Unpleasantness feels to me rather like waiting for an hurricane; you don’t know if you’re just going to get some heavy rain that will clear and then all will be well again or perhaps your house will flood, the wind will rip the roof off , and a tree will crush your car.

Then at the end of this long day, there is the horrific traffic to contend with.  Los Angeles Metro decided to convert the carpool lanes along the freeway I must take to work (the 110) into paid, “express” lanes.  The lanes opened last week and charge a variable toll from $1 to nearly $15 depending on traffic.  Those with two or more persons in their vehicle can still use the lanes for free but everyone who wishes to use them must purchase a $40 transponder as well as set up deposit on their credit card and pay a monthly “maintenance fee”.  Most people don’t want to jump through all of these rather expensive hoops so the result for the past two weeks is that nearly everyone who formerly used the carpool lane are now in the general traffic lanes.  It’s been taking me.  two hours to go the 27 miles home.  It makes me get weepy just thinking about the sheer waste of time and energy.  I have ordered a transponder and will pay the toll to save the time but the idea of spending more on tolls than I do on gas brings on another round of sadness for me; it feels that we continue to lose ground financially no matter how frugal we are.

I called Jeff on my long drive home to warn him of my late arrival and to check in on Theodore who Jeff had taken to the doctor that afternoon to follow up on Theo’s ear infection.  The doctor was concerned about the length of Theo’s recent illness – he’s been sick at some level for weeks and was particularly troubled by the congestion in his chest leading to pneumonia.   If he is developing pneumonia it would be his fourth round of it in his three and half years.  She suggested that we go see a pediatric pulmonologist and get a lung function test.  Then after listening to Theodore’s heart she heard a possible murmur – he has a recheck in a couple of weeks as his labored breathing may have given the sound of a heart murmur when there is none.  As if that wasn’t enough Theodore hasn’t really gained any weight in months and months.  He grows taller, but noticeably thinner.  He’s so robust and rambunctious in so many ways and yet my adventurous boy, born three weeks early, has a hard time recovering every time he gets sick.  He throws up every single time he gets sick regardless of what germ it is; his colds hang onto him for months, and he looks near skeletal these days.  I worry about my sweet boy.

We’ve got a crazy busy, but happy week ahead, with two birthdays and Thanksgiving.  I am going to try my best to put my forgetfulness, The Unpleasantness, the traffic, and my worries about Theodore in a box and not deal with them unless I have to.  That and eat chocolate every day.  That helps too.

In my car there is a bag.  A bag that brings joy to children and parents alike.  We call it “Happy Fun Bag”.  In it, are a few things that can change a bad situation into a good one.

We all know that shit happens.  With children, an unfortunate number of times that shit is real.  I will forever remember the incident of a few months ago where Anna, my ill-timed pooping savant, had a huge blowout in her carseat as I was pulling up to the bank.  I got her out of her now filthy carseat and in the process got baby poo on my shirt and dripped it on the exterior of the car. After cleaning up Anna, I pulled a clean shirt out of Happy Fun Bag and ducked behind the car to change myself and we finished our banking.  (And then went home to wash the car).

Last summer we arrived at swimming lessons one hot day only to find them canceled.  No problem.  We headed over to a local public park that featured water play and broke open Happy Fun Bag to reveal a picnic blanket and snacks.

There have been many occasions that we have visited my in-laws (about an hour drive from us) only to stay later than we had intended.  We give the kids a bath, pull pajamas out of Happy Fun Bag, tuck the kids into their carseats and with some luck end up with children who fall asleep on the drive home.

Once we had the very unfortunate incident of being stranded with all three children by a dead car battery.  Happy Fun Bag to the rescue with its picnic blanket and card games!

Or perhaps you are lucky enough to attend a birthday party that suddenly turns into a pool party (you didn’t know the hosts had a pool).

Happy Fun Bag is one of the little things that makes life just a little bit, well, happier.  I thought I would share the idea with you (and you certainly don’t need children to have one) in case you needed a little fun insurance in your life as well.  So what’s in our Happy Fun Bag:

• A complete change of clothes (shirt, shorts/pants, underwear, socks) for each child.  Said clothes are soft and comfy and can double as pajamas if needed
• A swimsuit for each child
• A light jacket/sweater for each child
• A plain white T-shirt and sweater for me (because being covered in baby excrement or being cold is neither happy, nor fun)
• 2 disposable diapers for Anna
• 1 box of baby wipes
• 1 bottle of sunscreen
• 2 garbage bags (to lay over a carseat if a kid is excessively wet/dirty or to protect the kid if the carseat has been befouled)
• A  couple of small and large ziploc bags to contain mess or serve as impromptu collection containers for kids “treasures” (rocks, leaves, feathers, etc.)
• A tablecloth/picnic blanket
• A deck of uno cards and a deck of go fish cards
• A couple of small, plain pads of paper and colored pencils.  (Note:  don’t use crayons – I know from unfortunate experience that they will turn into a molten mess in the heat of a car.)
• Non-perishable snacks (dried fruit, nuts, crackers, a couple of lollipops if things really get desperate)

Conveniently, Happy Fun Bag also serves as a great emergency preparedness bag.  If “Bad Things” happened away from home I think the items in the bag would go a long way towards comforting the kids.  What would go in a Happy Fun Bag for you?

If you look in my drafts folder on wordpress I’ve got seventeen unfinished blog posts.  In my head, I probably have another three dozen more posts rattling around.  But alas, I only have two hands, and they are almost always full of baby these days.   Life is very, very full.  Sometimes more than full – overflowing – with constant childcare, minor crises like ear infections, obligations to work at Thomas’ new school, getting the house re-roofed, my rheumatoid arthritis acting up.  I am living in a demilitarized zone of exhaustion and excitement.  But it is, for the most part, a happy chaos.  I most love the days we spend at home doing what is normal for us – keeping the kids outside until darkness falls and then herding them inside for a quick bath and bed, baking a spectacular dessert just because, blasting 80s music and having a family dance party.  And through it all the kids keep growing like the proverbial weeds and making us laugh.

Thomas continues to ask questions that challenge me on a daily basis.  This week as we walked home from school a police car drove past and I was peppered with a barrage of inquiries, “Do police officers ever break the law?”  “Who arrests a police officer?”  “Do police officers have to follow the law or can they do what they want because the other police are their friends?”

Theodore’s love affair with all things vehicular continues with unbridled passion.  The one mile walk to and from Thomas’ school is along a busy four lane boulevard and, for Theo, it is a walk of awesomeness.  He still manages to shout with glee every time he sees a Honda, which here in Southern California is about every fourth car.  He is very good at identifying cars and other pedestrians smile at the little boy yelling  “Mazda”, “Nissan!”, “Old Lexus!”  Earlier this week I caught Theo looking out of our front window calling wistfully “Porsche…Porsche, come here Porsche?   Porsche a cool car.  Me have a Porsche when I grow up.”  He carries around a bucket of toy cars all day long and I find tiny cars stashed under his pillow.  It’s fun to see him so obsessed with something.

Anna is flying through her infant milestones at breakneck speed.  She sits up on her own perfectly now – but not long before she lunges forward and pushes up trying to crawl.  This past weekend she learned to scoot backwards and today I watched as she delighted in scooting backwards through the living room, into the entry, and beyond until she backed into the front door and could go no further.  She is an expressive baby; chattering on for hours, screaming in fury when she backs herself under the couch, crying with loud shrieks when Jeff dares torture her by attempting to convince her to take a bottle (so far Anna is winning  that fight and absolutely refuses the bottle).  She’s also, for about the past 10 days, refused to sleep in the evenings.  Instead of going to sleep at 8:00 or 9:00 pm and staying asleep, mostly in our  arms – but asleep – she is now waking up from a “nap” at 10:00 pm and then gleefully trying to play with us until 1:00 am or so.  She is, of course, ridiculously cute and laughs easily during these late nights – as if she knows she has to be charming to get us to put up with this sleep bullshit.   After three children, I am quite aware that this is a developmental phase and that it (hopefully) won’t be long before she’s back sleeping at night (not through the night, but at least sleeping).  And you know what, insanely, I’ll bet that when she does I’ll miss our 10:30 pm runs to Target together, her midnight baths in the kitchen sink, and our late night dances.

The blog posts will just have to keep.  I am too busy partying with my baby.

The message you never want to get from your midwife is the one where she says “I received the results of your second trimester screen.  Please give me a call back as soon as possible.”

When I was 17 weeks pregnant with Anna I got that very message.  I was sitting in bumper-to-bumper traffic on the 105 freeway, checking my voice mail on my way home from work.  I looked out of my window at a sea of unknown faces in the cars around me, surrounded by people, yet utterly alone.

When I was finally able to speak with my midwife she explained that the blood work that I had submitted the week previous, a routine second trimester screening for chromosomal abnormalities and birth defects had returned a much higher than normal risk for Down Syndrome.  Specifically, my baby’s risk of Down Syndrome had been calculated to be 1 in 81, as compared to the risk based on my age of 1 in 769.  It’s easy to complain about the nausea, the unflattering maternity clothes, the fatigue of pregnancy.  But all those complaints pale in compassion to the fear that your child might not be healthy.

When I was pregnant with Theodore we received a slightly anomalous result on a first trimester screening test.  It was unclear whether the anomaly was statistically significant and after speaking with a genetic counselor, who believed that our baby had no increased risk of problems, we declined to pursue further testing.  But that potential anomaly opened up a can of worms that has wriggled about Jeff and I ever since.  The anxiety over that one slightly anomalous test colored the rest of my pregnancy with Theodore and was a major factor in the horrible prenatal and postpartum depression I experienced.

The first and second trimester screening programs are subsidized by the state of California.  My midwife explained that, as such, the state would pay for me to undergo further testing, a high level ultrasound and an amniocentesis, given my baby’s highly elevated risk of Down Syndrome.  I made the soonest available appointment with the recommended perinatologist, an agonizing wait of one week after my midwife’s initial call.  That week found me sobbing every night into my midnight snack as Jeff and had painful, gut-wrenching discussions about what was an acceptable amount of risk to the baby and under which circumstances we might terminate a pregnancy.  You see, ultrasound is 100% safe for the baby yet does not provide a definitive answer.  The best we could hope for with an ultrasound was that approximately 70% of babies with Down Syndrome show muscular-skeletal, gastrointestinal, and/or cardiovascular anomalies during the scan.  Amniocentesis, on the other hand, is nearly 100% definitive, but carries a risk of miscarriage somewhere under half of a percent, depending on the skill of the physician performing the procedure as well as other factors.   Jeff and I asked the same questions over and over:  What was the actual risk of amniocentesis for our baby?  What would it really be like to raise a child with Down Syndrome?  What effect would a sibling with Down Syndrome have on Thomas and Theodore?  Our midwife, our obstetrician, even the internet couldn’t give us the answers.  And, of course, as we had these literal life or death discussions I felt our baby moving innocently, within me.  Initially we found ourselves agreeing that we didn’t think we could parent a child with Down Syndrome.  Prior to actually being confronted with this situation I had thought that I would opt for the amniocentesis and that if the diagnosis was indeed Down Syndrome, that we would end the pregnancy.  But over the week Jeff and I found our thoughts evolving together.  I focused on two questions:  Was there any risk level for amniocentesis that would ever be acceptable to me?  I could only imagine the absolute horror of our baby losing their life as the result of a procedure that I chose to have.  And would our child and our family suffer if our son or daughter had Down Syndrome.  Without a doubt Down Syndrome would be a huge challenge; it would alter the course of all of our lives.  But, in the end, Jeff and I came to the conclusion that we wouldn’t suffer and that our child wouldn’t either.  The truth is that parenting is a crapshoot; I felt that when we chose to have children we chose to take on whatever those children might be and the joy and pain of being their parents.  I would never let a child of mine or our family knowingly suffer, but for us Down Syndrome didn’t meet that definition.  And if ever there was a time that I was thankful to have married someone that shares the same values as I did, it was in facing a negative prenatal diagnosis.  Jeff and I were completely in agreement.  We would take the ultrasound and leave the amniocentesis.  We would hope for the best and prepare for the worst.

On the appointed day we drove to our appointment with the perinatolgist.  When we arrived I realized that it was 2:00 in the afternoon and I hadn’t eaten anything all day.  The hunger combined with my nominal pregnancy nausea along with the mounting anxiety made me feel quite physically ill.  I kept thinking that I would take the pain of labor any day over the feeling in that waiting room.  After a session with a genetic counselor we were finally granted the ultrasound.  Our baby appeared on a huge LCD display across the room.  He or she wriggled and kicked; looking for all the world like a perfectly healthy baby. Being my third child and somewhere around my 30^th ultrasound I knew what I would see on the screen but I found my breath catch at how only 18 weeks into pregnancy the baby on the screen looked like the tiny person that he or she already was.  Although it was clear that at level of detail we would easily be able to determine the baby’s gender we opted not to find out at that moment.  I wanted the reveal of whether or not we were having a son or a daughter to be a purely happy moment.  When the ultrasound came to the part of the anatomy that would give things away I closed my eyes and the ultrasound technician wrote down our baby’s gender on a card and placed it in a sealed envelope.  After a long 45 minute scan by a technician, the perinatolgist came in and performed a second scan.  Both scans showed a perfectly healthy baby.  The perinatolgist told us that given the ultrasound our baby’s risk of Down Syndrome was now improved from the 1 in 81 although he couldn’t say by how much.

We drove home quietly, knowing that we would somehow have to sit with the unknown for the next 22 weeks, but sure that our decision, not to know, had been the only one we could live with.   And then we decided to go out to dinner and open the envelope.  Over a plate of focaccia I opened the card and read “Girl!” and in that moment my anxiety melted away and I was simply giddy with excitement.

Almost no one knew of our concerns. As sure as I was that our decision was the right one for us, I could not stand to hear any questions.  I could not stomach the thought of the inevitable comments along the line of “My sister’s roomate’s cousin has Down Syndrome and he/she is the happiest person in the world or made his/her family’s life hell.”  I could not bear the thought that this dearly loved little girl could actually have Down Syndrome.

There have been a number of pieces of recent legislation in several states that would limit the rights of women to know about potentially negative prenatal diagnoses or to act upon that information.  Such laws will not save babies and families they will potentially destroy them.  Knowing about problems before the baby is born can save the life of the baby.  Knowing about problems can save a family as well.  Not everyone feels the same way about what constitutes suffering and everyone’s family is different in their ability to handle a child with significant challenges.  We did not know definitively if our daughter had Down Syndrome or not; but we choose that ignorance with the knowledge that we would accept and still be able to lead a happy life even in the face of such adversity.  These laws have been framed as being part of a “war on women”.  They are not simply anti-woman, but anti-father, anti-child, and anti-family.

When imagining our daughter’s birth I had thought that the first thing I would do after she was born would be to look her over in great detail searching for signs that anything might be amiss.  Instead I found myself flooded with relief that she had simply been born.  I was overcome with love for our daughter and just like her brothers before her I simply nursed her and held her close, never waiting to let her go. Nearly five months after her birth it is clear that Anna does not have Down Syndrome.  I am incredibly grateful that Anna is perfectly healthy.  And I am incredibly grateful that I had the right to choose to know what I needed to about her health before she was born and the right to act (or not act) on that information.