Feeling a little guilty

First, a confession: I don't feel guilty about a lot of things I do or don't do as a mom.  Is that weird?  I honestly feel like I am doing the best that I can.  I'm not saying that I NEVER feel guilty nor am I by any stretch saying that I'm perfect, but I also think that "mom guilt" is a popular and almost socially expected (I said EXPECTED...it's what happens after it's socially ACCEPTED) emotion.  Thanks, Facebook and Pinterest.

All moms should feel guilty that their kids don't eat enough vegetables.
All moms should feel guilty that they use the N-word with their children...NO. 
All moms should feel guilty that they don't play with their children 20 hours per day. 
All moms should feel guilty for not homeschooling their children. 
All moms should be ASHAMED if they don't breastfeed...ashamed, I say...banned to the depths of hell for all eternity. 
All moms should feel guilty if their children aren't well-rounded (read: play two sports year-round, go to sports camps in the summer, take art lessons, volunteer, have daily play dates, make A's...possibly B's since the anointed child's teacher clearly doesn't understand that your child's work cannot be compared to that of others, run for Student Council, and also run 5K's for kids - it's good training for soccer camp).
All moms should feel guilty that their children don't eat hormone-free, free-range chicken or that they bribe them to eat one bite of broccoli in exchange for dessert.
All moms should feel guilty that they (heaven forbid) HAVE A JOB OUTSIDE THE HOME.  That last one gets the best of me sometimes, but then I remember that my paycheck is responsible for our savings and one of our cars.  I'm maintaining my certifications and work experience in the event that I would ever have to be the sole caregiver for our family.
MY BIG QUESTION: Where is your guilt for not taking your child to church on a regular basis AND (I said AND here) teaching him or her about Jesus Christ?  You'll homeschool your child because you don't think anyone else can do it properly, but you'll leave the spiritual stuff to the church, if you even go at all.  And you believe church/God/religion is hooey?  What will you do when the paragraph after next happens to someone in your family?  Suddenly God becomes all too real in the way that He is suddenly to blame for your problems, and you and/or your children won't know what to do, where to turn, how to cope...because you don't understand Him, not even a little bit.

So what's my guilt about recently?  Not taking enough pictures.  HA!  Sounds ridiculous after all those things I just listed.  But it's true - our lives as young mothers somewhat revolve around how well we have documented both milestones and everyday cuteness and hilarity.  What?!  You DIDN'T get a shot of Emma's reaction to her new seesaw?!  Shame on you.  Bad mother.  How will you possibly ever remember that moment?  You will ride the seesaw of shame vs. regret for the rest of your days.

My guilt is not a result of expectations set by others...it's a result of my own insecurity that I won't remember the joy of Emma's experiences as only a picture or a sound can trigger.  As Emma's surgery nears, I have dangerously allowed myself to drift to the what-if's a handful of times.  There's a girl in California right now who went in for a tonsillectomy, and let's just say the worst has happened.  What if something goes horribly wrong?  What if Emma has major complications and won't be able to survive after her surgery?  None of this is routine surgery...so aren't our odds of Emma losing her voice, losing some mobility, or even losing her altogether much, much greater?  And so I go to back to the guilt that I haven't captured her voice on video enough...or that I haven't captured her smile enough...or that funny lower lip poked out when she's concentrating.  Memories are fleeting, but pictures and video last forever.  Even when WE DON'T.

It just occurred to me yesterday or maybe the day before (see?  Don't even remember when I had this awful thought...) that I won't hear her sweet voice for at least 5 days.  And after that, it will be scratchy from a breathing tube...and when she does try to speak, it will be painful and she will cry.

So here I am, allowing the fear to creep in about this hospital stay, leading to remorse...that I had taken more pictures, more videos.  Can I bear to watch videos of her sweet self while she lies in that bed?  This is all self-pity - Emma will know no better for those 5 days of sedation.  And she's the one who really matters.

Here are the few pictures I snagged of Christmas with our doodlebug (who, by the way, calls herself, "The Doodlebug," when we ask her who she is in pictures).

 

I will post an update as soon as possible after Emma's surgery on Friday, January 3.  The surgeries begin at noon, and I have no idea how long they will take.  I don't even have a ballpark here.  2 hours?  Maybe.  7 hours?  Sure.  Until then, I probably won't post again...I'll be busy with my little one trying to cram in all the things I'm "supposed" to be doing as her mom and probably not getting as many pictures and videos as I would like.  But at the end of the day, Emma knows that her daddy and I love her more than she can understand, and we know that God loves all of us more than WE can understand, with or without forced broccoli feedings or organic cotton clothing washed in chemical-free detergent made from naturally-occurring bark, moss, and honey.

My own little Christmas present

Many of you can appreciate this: I am sitting in a quiet house at 9:53 am.  Russell and I went to sleep around 3 am, after wrapping presents.  And not even all of them, just the essential ones.  Our first wake-up call from Emma came at around 7:40.  Now she and Russell are back asleep.  I have cleaned up Emma's room, emptied the dishwasher, prepped a little bit of food/drinks for today's Christmas Eve lunch, washed more dishes, and piddled until most things in my house are how I like them.

And now, here I am.  In a quiet house, drinking my coffee, looking at my calendar, looking at pictures of my darling girl from this holiday season so far, and feeling the new baby trying to somersault, high-kick, and punch her way out.

Let's start with the first thing: my calendar.  Emma's surgery time is noon on Friday, January 3.  We have pre-op on New Year's Eve day, where we'll get the same old information that we get for an MRI...except this time we will probably have to bathe Emma in the Hibiclens soap that they give us.  My mom has surgery this Friday, the 27th, on her knee.  Those are the ugly holiday happenings.  The pretty ones...my sister comes into town today.  Our Christmas Eve service at church...the chiropractor on Friday (I'm pregnant...this is a big deal).

And pictures...well, not a lot of new ones, but enough to generate warm memories for me.  Emma had her Christmas program at school.  The 3-year-olds didn't do a whole lot, and Emma did less than most.  Similar to her "performance" at church, she sat in her wheelchair at the front and looked at what appeared to be hundreds of moms and dads watching what appeared to be thousands of 3- to 5-year-olds crammed on the stage.  I couldn't get close enough to get a good picture of Emma, and her class was at the very bottom, but here's what I got:

Emma's class is waaaay at the bottom left - one of her teachers is standing up in a red sweater with long blonde hair.

More pictures from our holiday season so far:

With sweet Miss Sylvia from our church putting her ornament on the preschool tree:

Finding the elf shoes from last year's stocking:

Roper Mountain Lights:

The aftermath of a cookie decorating station at school:

 

 

Christmas crafts:

 

 

 

 

And now my family is awake.  A sullen 3-year-old.  A broken glass ornament.  And a crying 3-year-old, because Daddy broke an ornament. 

 

 

 

There it is in the floor, right above the red swirl present.  Sorry - too lazy to get off the couch for a better picture.

 

 

Good grief.







A. T. L.

Long before Emma's surgery was planned, Russell and I decided we would take her to see Disney Junior Live, which features one of her favorite characters, Sofia the First.  There's also a Jake and the Neverland Pirates spot, but Emma is barely interested in that show.  The show is technically called Disney Junior Live, but she calls it Disney Junior Live On Stage because she heard it advertised that way one time.  So we were constantly corrected by her whenever we just called it Disney Junior Live.  The show's coming to Greenville sometime really close to my due date, and I'm not sure I could tolerate all those little people combined with the little person in my stomach.

The best alternative?  A big trip to Atlanta to see it there.  Plus, a visit to the Georgia Aquarium and a stay in an Embassy Suites.  It was fantastic.  I didn't get a lot of pictures of Emma because she was moving a lot, and we're typically pushing the wheelchair behind her.  However, just trust me that she loved every minute of it.  Before we get to pictures, the hotel was a difficult thing to explain to Emma - she liked it a lot, but I don't think she fully grasped the concept.  Pause for a sad, pitiful moment: when we got off the elevator and walked down the hall through the atrium, she said, "Are we going to a doctor's appointment?"  Broke.  My heart.

Since Embassy Suites rooms are just that (suites), she thought it was cool that there was a den, a "kitchen" (really, a small bar sink, a mini fridge, and a microwave), AND a bedroom.  Here she is waking up the next morning talking about the room and Disney Junior Live.  Turn your volume up because it's hard to hear her - she speaks very quietly, like a dainty little sweetheart :)

So here we are at the aquarium.  They have tunnels going under a lot of the exhibits, and Emma thought this was so cool.  She cruised under them in her wheelchair with both me and Russell once and all the other times just with Russell.  Hello, someone had to take the pictures, right?  And I may have played the pregnancy card, which I actually don't feel bad about.  Baby girl is getting big!

I couldn't get very many pictures of Disney Junior Live, mainly because it's a show in a dark auditorium, but here are just a few:

Like a sucker, I got Emma a cute little Sofia cup which came with a sno-cone in it...she had no interest in the sno-cone, so you can see Russell taking care of it in the background.  Obviously, Russell isn't the focus of this excited picture of Emma, but I felt the need to explain.

And lastly, our sweet girl did this throughout the performance, not out of fear, but out of love and excitement.  The happier she is, the more affectionate she is, and she just wants to hug, hold, and snuggle.

No squeamish pictures, just squeamish talk

If you're one of those people who can't hear about medical procedures without getting sick, you may want to stop right here...because Emma's got 5 medical issues to address.

Let me start from the beginning.

Issue #1: As some of you loyal followers know, on March 16, 2010, Emma was born with her spinal cord exposed (medical term: myelomeningocele), the worst and most common of the 3 types of spina bifida.  The day she was born, her neurosurgeon, Dr. Troup, closed up her spinal cord, tucked it away, and closed her skin.  His plan for her (as with all his SB kids) was to lie on her stomach and let gravity do its work, pulling her spinal cord away from all the other "stuff" around it so that scar tissue wouldn't adhere the spinal cord to anything.  You see, your and my spinal cords just float around our bodies freely at the bottom, and that was the ultimate goal for Emma.  However, her incision opened and was infected for a few really gross weeks.  Any of you nurses who would be interested in seeing what this was like, message me - I have day-to-day pictures to measure progress.  Anyway, this likely led to spinal cord tethering, which is quite common in kids with spina bifida.  The spinal cord isn't floating around - it's stuck to all the other "stuff" by scar tissue.  This problem manifests itself in various symptoms, none of which we have really seen in Emma.  However, we have known it was there and knew that she would eventually have to have a detethering surgery to fix it - in other words, scrape scar tissue away from her spinal cord at the original site of her surgery.  And then lie on her stomach for 5 days, intubated and sedated - because how else do you get a 3-year-old to lie still for 5 days?

Issue #2: After Emma had been with us for about 8 weeks, we learned that she was having side effects most likely from a Chiari II malformation (also present in varying extremes in kids with spina bifida).  An MRI has shown us on multiple occasions that Emma's brain stem doesn't stop at the base of her skull - it keeps going down into her neck and is compressed all the way down to her third or fourth vertebra.  Common sense will tell you it's not good to have your brain squashed.  However, Dr. Troup was only about 50/50 on whether decompressing her brain stem would actually relieve the side effects.  Emma's MRI looks awful, but the appearance of it doesn't really jive with her present symptoms, lack of some symptoms, and severity of symptoms.  But we knew at some point down the road, she would probably need to be decompressed.  This is a process of either shaving off bone from her skull to allow her brain stem more room or a combination of that bone shaving PLUS cutting through the outer membrane of her brain.  Of all the surgeries that kids with spina bifida have to endure, this is one of the most difficult to recover from, especially when you cut through the membrane.

Issue #3: Along with Emma's awful-looking Chiari malformation, she also has an enormous cyst in her spinal cord called a syrinx.  It's dreadfully large, and Dr. Troup has always been amazed at how asymptomatic she has been.  But again, this is something that we have always known would have to be taken care of at some point.

The picture below illustrates a Chiari Malformation at the top - see how the brain is pulled down into the neck?  And the black mass at the bottom in the middle of the spinal cord is a syrinx.  That's where Emma's syrinx starts, but it goes ALL THE WAY DOWN HER BACK.

Issue #4: In the most recent past, Emma was diagnosed with a severe case of scoliosis.  This is mainly an orthopedic issue, but with Emma, nothing happens in isolation.  I posted recently that Dr. Troup feels that the spinal cyst could be contributing to the scoliosis.  There's also a chance that the tethered spine, could be contributing.  But there's also a chance that neither the tethered spine nor the cyst have anything to do with the scoliosis.  A lot of kids with spina bifida have scoliosis just because.  Well, not exactly "just because," but it's too much to get into right now.  Since the spinal cord tether and the cyst have to be dealt with sometime, Dr. Troup wants to do the surgeries now, while Emma is initially being treated with a back brace for the scoliosis.  The treatment of the scoliosis with a back brace and these neurosurgeries is in no way an immediate fix, and there is no instant gratification.  However, Troup's thought process is to go ahead and treat these problems that could be leading to scoliosis since they have to be addressed at some point anyway.  PLUS, who knows - maybe the draining of the syrinx and the detethering could actually improve her mobility - think about it: anything affecting your spinal cord affects your mobility.  Here's a picture of what scoliosis looks like and how to measure it in degrees (Emma's is 55 degrees, which is pretty severe, and I would estimate that this measurement is only about 35 to 40 degrees):

So what about the Chiari Malformation?  Troup would never say that it has nothing to do with the cyst, the tethering, or the scoliosis, but for the most part, Emma's compressed brain stem really has nothing to do with the other problems.  As compressed as her brain stem is, her spinal fluid flows through and around her brain stem like nothing's wrong, so the spinal fluid isn't pooling the cyst...which is usually what happens.  The cyst is literally just standing on its own, unrelated to anything else.  The beauty of Emma being on her stomach for 5 days, sedated and recovering from a detethering and cyst draining, is that she could also be spending that time recovering from the most difficult surgery - the decompression.  So we'll just move forward with that one, too.  Some potential benefits (potential - not certain at all), are less choking on thin liquids (this has been happening since birth) and the reduction in severity of central sleep apnea (her brain doesn't tell her to breathe properly when she sleeps).

And let's introduce another issue: #5.  This isn't really a medical problem, but one that really bothers Troup on all his spina bifida kids.  He knows that they go through enough in life, and it's salt in an open wound (no pun intended) that they have these ugly surgical scars.  When Emma's original incision opened up and got infected, it healed in a pretty nasty way.  The scar is awful, and her skin just looks terrible around it.  So Troup feels bad for her, and he's going to do a little plastic surgery to fix it up.  Kind of a bonus surgery.

So did you keep up?  Surgeries to correct the compressed brain stem, drain the spinal cord syrinx, detether the spinal cord, and clean up her scar, in the hopes that 2 of the 4 procedures will lessen the severity of her scoliosis.  There will be three incisions: at Emma's neck, where Troup will scrape away skull bone; in the middle of her back, where he will drill through a vertebrae, insert a catheter into her spinal cord to drain fluid, and close it back up; and on her lower back, at the site of her original incision, where Troup will scrape away scar tissue from her spinal cord, close up the incision again, and tidy up her skin.

It all happens on Friday, January 3.  Emma will be in pediatric ICU for at least 5 days.  And no offense to anyone - we welcome visitors to see us, but not to see Emma.  Three incisions, three access points to her spinal cord/brain, in the middle of cold and flu season.  We will unofficially quarantine her.  Being sedated for 5 days makes her more susceptible to pneumonia, and if she has to be woken up to fight the pneumonia, she will be sore, in pain, and cranky.  I think you see where I'm going with this.  We've been told that if everything goes as planned, she should be back to herself two weeks after the surgeries.

Now breathe.  That's all we've been doing here lately.  Just breathing sighs of relief that we know when these impending surgeries will actually be happening.  And breathing sighs of resolve to get through this current moment, task, hour, or day...and just move on to the next.  Not looking too far ahead, but also preparing for what lies ahead.

Words we have and continue to live by: Matthew 6:26-27, 34:  Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they?  Can any one of you by worrying add a single hour to your life?...Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

Happy Holidays

I'm a firm believer in saying Merry Christmas.  Happy Holidays is a lame copout for anyone who doesn't want to celebrate the real reason we have CHRISTmas.  Anyone who doesn't believe in Christ and is offended by the greeting, "Merry Christmas," shouldn't be allowed to have a Christmas tree, Christmas lights, or give their kids presents.  Sorry to be so harsh, but I think it's pretty harsh to our Lord to pick and choose to celebrate the parts of HIS holiday that don't actually involve HIM.  I mean, I don't go around celebrating Kwanzaa or Hanukkah.  I think it would be great fun to light candles on a menorah for eight nights and give gifts every day.  But it would also be incredibly disrespectful to members of the Jewish faith and horribly offensive to the Christ in whom I believe.  But Christmas?  Sure, go ahead and disrespect Christ by celebrating HIS holiday when you don't actually believe in HIM.

I really shouldn't get my blood pressure so high right before bedtime.  My point in that rant started out to be a disclaimer for the title - I have a few pictures from Thanksgiving and Christmas celebrations, so I combined them into Happy Holidays.  Maybe I should have just titled the blog post, "Happy Thanksgiving and Merry Christmas" and saved all of us the time of writing/reading that paragraph.

In these pictures of Emma's preschool church choir production, she just looks like she's saying, "Holidays."  Not happy, but not sad, which I will settle for since she has a little bit of anxiety about being the center of attention - whether it's 3 people or 300 people, doesn't matter.  She needs to be one on one for her personality to really come through.  And I hope that you each get that opportunity one day because she's pretty funny.  As you can see in these pictures, her main concern was the little boy next to her who kept putting his hands on her wheelchair.  She loves to watch other kids, and again - that's fine...as long as you're not crying at the front of the church.

She was much happier at Thanksgiving when her cousins were around to entertain her and take pictures with her.