Thursday, September 26, 2013

The Monster Who Moved In

You have all seen it depicted in some movie, comic strip, meme, or TV show.  Person is bowling, jumping hurdles, swinging, {insert other physical activity here} and suddenly falls asleep and lands in an awkward and painful position—which undoubtedly produces laughter on your part.  Most people can remember Rowan Atkinson’s character in Rat Race where he is franticly running through the hotel lobby and suddenly falls asleep standing up in the middle of all the chaos. 

 
 
Though these depictions are intended to make you laugh, narcolepsy is a really scary disorder that affects real people.      

 
Being married to a narcoleptic is like having two different relationships going on at the same time.  On one hand you have your relationship with your spouse, whom you love dearly, trust completely, and pretty much cannot live without (after all that IS why you married that person is it not?).  But on the other hand, you have a relationship with Narcolepsy—who is a selfish and aggravating monster that you try your best to tolerate but you actually hate with a passion beyond which you have ever known. 

For those of you who do not know, my husband was recently diagnosed with this monster called narcolepsy.  Narcolepsy gets first dibs on his time.  It interrupts him while he is at work, when he is trying to complete school work, and when he is at home with his family.  It affects him all the time.  His family, his friends, his work associates—we all come second to narcolepsy.  It affects him at dinner, when we are out on dates, when watching movies or catching up on TV shows at home. 
This monster has no concern for his health or the health of those around him—trying its hardest to interrupt him while driving, causing him to drop things (he hasn’t dropped the baby yet—but it has been close).  It refuses to give in and is resistant of the medications we have been throwing at it.  And if this on its own is not bad enough, narcolepsy almost always brings along its friends cataplexy and REM sleep behavioral disorder. 

For those of you who don’t know cataplexy is the abrupt loss of muscle tone, usually triggered by a strong emotion.  So picture something emotional (someone you know dying, seeing a family member struggling to heal from a traumatic surgery, even something as little as your partner being angry and yelling at you); instead of a normal response a person with cataplexy will basically faint without losing consciousness.  The person’s entire body will go limp for a few seconds to a few minutes but mentally the person is completely aware of what is happening.  That is cataplexy. 

REM sleep behavioral disorder is narcolepsy’s sleepy time partner.  You think that falling asleep all the time is bad enough---REM sleep behavioral disorder affects you while you sleep and can range from paralysis during REM sleep to unconsciously acting out a dream.  This includes sleep walking (people have even been known to drive during this condition), getting into strange positions in bed, violently flailing and hitting, having full conversations, or jumping suddenly out of bed.  Sure this can be funny—sometimes, but one can only wake up to someone standing over them so many times before their heart gives out.

   
I mean, really...you get the picture.

A person with narcolepsy is not just tired or falling asleep all the time.  People with narcolepsy often suffer from problems with concentration, irritability, short-term memory loss, and mental confusion.  Imagine trying to have a conversation with that.  And so, I will be the first to admit that I am not dealing with this monster well.  This monster brings out my own personal Mr. Hyde.  It is frustrating to always have to repeat things, to do most things by yourself because he has fallen asleep AGAIN, to constantly be the chauffeur for the entire family.  It is scary to leave our children at home alone with him or to let him drive which means that I rarely get alone time.  And on top of those concerns, every time he is late I wonder---did he fall asleep at the wheel and get in a horrible car crash.  Like I said, this monster, it affects the whole family.  Even though I know that my husband cannot control it; it is a chronic neurological disorder after all, it still angers me.  I just hope he knows that I am angry at the narcolepsy and not with him. 

Thursday, August 22, 2013

Superman Was Adopted...

"So you want a baby?" She responds with an uncomfortable, stifled laugh.

And thus, our journey begins...

We are lucky.  Our journey does not begin with sorrow or pain.  It does not begin with years trying to conceive or thousands (hundreds of thousands?) of dollars down the drain.  In fact our journey begins with a happy, healthy family of four --or seven if you count those fuzzy things that sprawl around the house. 

We are lucky.  Yes, I will say it again.  And again and again and again because I know that at some point in this process I will not feel that way.  At some point our luck will run out and there is a good chance that our hearts will be broken, we will be disappointed, or something will arise that will make us feel completely helpless.  That laugh already had me doubting.  I am not trying to be pessimistic, just realistic.  It can take years to get a match and the fact is that after a match is made, an average of 10% of adoptions still fall through for one reason or another.  The more specifications and desires you put on the list (age, sex, race, etc) the longer the process can take. 



So, you may ask, if we are capable of having another baby--why don't we and spare ourselves this potential heartbreak?  The answer is pretty simple...my heart breaks every day for each and every baby and child in this world without a family and without a home and WE can do something about it for at least one of them.  One of these children could do great things with a family--our family to support and love them.  After all, Superman was adopted too. 

This week marks the beginning.  The decision has been made, research is being compiled and this incredible journey begins.  The paperwork, the home visits, the classes, the deadlines, the prying into our lives, the questions, being counselled, instructed, commanded, and laughed at--it begins today because we are going to find our baby!

Wednesday, February 20, 2013

Valentine's Day Obligations

Call me a cynic, but I truly believe that most people resent Valentine's Day.  For single people, the day presents a month long reminder that they are alone and have not found anyone.  And this is not a fun feeling, I've been there...we all have and can attest to that fact.  But the holiday is almost worse for those people that are no longer single.  These people cannot ignore the holiday like the single world can.  No, these people are obligated to acknowledge it.  I suppose they could choose to ignore it, but I've done that too and the outcome was just short of disastrous.  A day that was developed to bring people closer together has become a great spectacle.  It is a day where children are forced to give cards and presents to classmates (many that they do not even like).  A day where some of these same young hearts are broken as they realize that their crush does not even realize they exist--we all have one of these stories.  A day where millions of dollars are foolishly spent on flowers, chocolate, cards, jewelry, stuffed toys, and romantic dinners.  A day that in my opinion "has lost that loving feeling" and been replaced with obligation. 

She must be single--you think to yourself.  Surely only a single person could feel so strongly against a holiday that is devoted to love.  Wrong.  I am happily married.  Then something must have happened to her to make her hate this holiday--you deduce.  Wrong again.  Thanks to my grandfather, I have never had a Valentine's Day where I have not received a Valentine.  He believes that every woman should feel loved on this day and every day, and makes a point to send a Valentine out to every women in his life.  I really do not hate the holiday in itself.  In fact, in my family the holiday has extra special meaning as it is the day that my parents got married 35 years ago.  My issue is that people go crazy on this single day because of obligation but then ignore the other 364 days.  This is not how I want to be loved, nor is it how I want to teach my children to love or express emotions. 

I am thankful that my husband has similar views on this (or at least has accepted my views).  Sure he still spends money on Valentine's Day (I think that obligation is much too ingrained in his head to not do it) and every year I give him a hard time about it and he smiles.  But this year, this year was different.  On Valentine's Day this year, my husband made his predicable purchase and came home.  But something happened this year that was completely unexpected and my heart ran over with love and emotion.  He walked into the room holding a single flower and kissed me.  I was about to begin giving him a hard time when he turned around and handed that flower to our 1 year old baby girl.           
    

As her face lit up and the flower was brought up to her little nose, my heart runneth over.  This year...well this year...I'm thankful for that obligation.  Sure I still want people to bring that enthusiasm to the other 364 days of the year.  But this year, maybe for the first time...my heart was truly filled with the spirit of Valentine's Day and that cynicism was put to the side (at least for a moment). 


Thursday, January 17, 2013

A birth story


Warning: This is a lengthy post that is moderately graphic in nature.

Preface:  I began writing this birth story as a way to try to accept my first birthing experience, which was far from what I imagined a pregnancy and birth experience should be.  Shortly after finding out I was pregnant for the second time, it was recommended to me that I write about my pregnancy, labor, and delivery in order to try to process what happened and heal so that I could try to be more in control of my next experience.  I never finished writing my experience down before my second child’s birth due to the fact that I met and shared my experience with a great birthing class and processed the experience some while there.  Now, a few days shy of his 6th birthday, I have decided to try to finish writing this experience.         

It is funny how things hit you when you least expect them.  Everything can be fine and then suddenly out of nowhere –WHAM! It hits you like a ton of bricks.  My husband and I had just found out we were expecting a baby.  Most people in this situation are elated, ecstatic, and want to tell the world.  But my first instinct, my first reaction…it wasn’t like that of most people.  Instead, when I realized that I was late and could be pregnant…I froze.  Did I want another baby?  Absolutely!  So why was I having this reaction?  It took awhile, but I finally realized that my reaction was stemming from the fact that I had never really processed my first experience.  So at the recommendation of my midwife, I sat down and tried to remember everything that had happened over 5 years ago  . . .

My Story:
I found out that I was pregnant in the early part of April in 2006, most people remember the exact day they found out, but all I really remember about that day is worrying what my parents were going to think when I told them.  This was definitely not how I had envisioned my first pregnancy.  I thought I would be happily married, settled, and ready…I was none of these.  I was in my early 20s, unmarried, and though I did not admit it at the time, I knew that my parents really did not like the guy I was seeing.  I was pregnant and scared--a position I had never really considered.  Since I did not have a primary care doctor, much less an OBGYN, I decided to utilize the same obstetrician that my good friend’s wife was using.  At this time I did not know that I had birthing options, I did not know anything about pregnancy and childbirth.  Everything that I knew I had seen in the movies, learned in public school sexual education, or obtained from a few brief and awkward conversations with my parents.  I knew I needed an OB and this one was covered under my insurance.       

Due to the fact that I was not entirely sure when I got pregnant, I went in for an appointment at what we could best assume was around 8 weeks of pregnancy.  At this point, I had told my parents and they had reacted about how I expected (though they tried really hard to not show their feelings and just be happy, I know that they were as conflicted as I was). 

My first appointment with the OB was nothing like I could have ever imagined.  I sat in the waiting room anxiously for about an hour while I waited to be called back so that this doctor lady could verify what my peeing on a stick had already told me (6 different times).  I finally was brought back and was told to –SURPRISE!  Pee on a stick.  Seriously?  Did they really think their sticks were any better than the six I had paid $10 apiece for?  But I complied.  After about 30 seconds, those little lines popped up and I was told to go to the end of the hall and sit in the office and wait for the OB. 

So I wandered down the hall, trying to take in the place, being drawn to the various boards of pictures of babies, thank you cards, holiday cards from families that had delivered with the practice in years past and as I wandered I began to feel a little more at ease.  I sat down in the OBs office and waited.  And waited.  And waited.  I could feel the tension working its way back up until finally she entered the office.  She sat across from me with this huge mahogany desk between us and began to bombard me with question after question.  It was like the Spanish Inquisition.  I was asked questions about things that I STILL cannot figure out how they relate to pregnancy.  Questions about myself, my childhood, my parents, the father of the baby, my health, my diet, my job, my living environment…heck I’m pretty sure by the time I left that office she knew more about me than anyone else in the world.        

I was told, after this line of questioning that I did not need to come back in for a few weeks because I was only 8 weeks pregnant. How they determined this still beats the heck out of me, but I did not question it.  She said that they would do my first ultrasound then but that I should “mark my calendar with my projected due date: January 11th”.

I returned to the office for my first real exam and ultrasound to be made completely uncomfortable yet again.  The ultrasound technician was told to do a transvaginal ultrasound because “we are unsure of conception date” and the baby may not be developed enough to see on an external ultrasound machine.  Now if you have never had a transvaginal ultrasound…I definitely recommend avoiding it at all costs.  What I was about to abruptly find out is that a transvaginal ultrasound is basically something that looks like a giant wand instead of being rubbed on the outside of my belly (like I expected) is inserted vaginally.  You can probably imagine the humiliation that I felt the moment that this was described to me only mere moments before it happened.  It was during this visit that I first heard the little thumps of his beating heart and knew I was in love (cliché- I know, but true).  I was told during this visit that my due date appeared to be accurate and they set my prenatal care schedule. 
 
Now, I’m not going to go month by month of the pregnancy, because frankly…it was all just a lot of vomiting and appointments where I received conflicting information.  One visit I wasn’t gaining enough weight (no duh!  I could not keep anything down and they just kept attributing it to morning sickness).  Then the next visit, I was too heavy and if I didn’t control what I ate then I was going to be forced to have a c-section because I was going to develop gestational diabetes.  Then the next visit, suddenly I was too thin and not measuring correctly for my gestational weeks.  This last one resulted in another ultrasound where they changed my due date to Jan 21st.   I eventually was diagnosed with hyperemesis gravidarum after passing out twice from dehydration and being taken to the hospital for fluid therapy and monitoring.  This diagnosis led to my OB prescribing me an anti-nausea medication that is typically given to cancer patients.  I was never told the potential complications that this medication could cause me or my unborn baby and frankly I am glad that I did not learn them until long after my child born healthy as the side effects and complications that it could cause was frightening. 

So that is basically how the pregnancy went.  I was scared, my OB gave me very little support and my baby’s father was just plain ignorant to the whole pregnancy and the only person I trusted—my mother was a thousand miles away.  She did get quite a few hysterical phone calls though!

 
Skipping forward to January.  My original due date, January 11th, came and went.  I was still very pregnant and still working 70 hour weeks.  The next Monday’s appointment I had after my original due date, my OB stated that she was concerned that my baby was too big and that she would like to do an ultrasound on my next visit if I had not gone into labor by then (I was going in every other day at that point).  On the 17th, I still had not gone into labor and went in for an ultrasound.  At this point according to their “new” due date, I still had 4 days before I hit 40 weeks, but I was told that my baby was in fact “too large” and that they wanted me to go into the hospital the next day to be induced.  When I questioned this request I was threatened.  Threatened that if I did not induce that the baby would get stuck in the birth canal, told my tailbone would be damaged, that my perineum would tear and that it would be the most painful thing I had ever experienced, threatened with an emergency c-section.  I was even told that my baby and or I would die. 

So after working a half day the next day to ensure everything was in order before I went on maternity leave, I packed my bags and the baby’s father and I made our way into the hospital at about 4 in the afternoon.  I was immediately put into a delivery room and hooked to several monitors: heart rate, blood pressure, fetal monitors and immediately was given a urine catheter.  A nurse came in to put a catheter to provide me with fluids, an antibiotic, and pitocin to “kick start” my labor.  The nurse tried ten times to get the catheter in before giving up and asking for help.  The next nurse tried another 4 before the catheter was inserted in the most awkward position on my hand.  It was then taped in with what seemed like an entire roll of medical tape.  I was told that I should try to sleep until the contractions got to be too painful and then I would be given an epidural.  (I was never asked if this was something I wanted…I was told that because I was given pitocin it was “protocol” to be given an epidural once the contractions became painful instead of just awkward). 

My baby’s father took over the remote on the TV and proceeded to pass out in the chair next to my bed.  I was forced to watch hours of the Simpsons because due to my monitors and IVs I could not even reach the nurse call button to get the TV turned off and despite my desperate pleas, my baby’s father would not wake up (I swear he would sleep through the end of the world). 

Every hour or so a nurse would come in, check my vitals, check my progression, shake her head and tell me to go back to sleep.  At about 7 pm, though I had only dilated to 4 cm, I was given an epidural so that I could sleep better because I was going to be in labor for a long time.  The anesthesiologist came in and told me to sit up and lean forward.  Then in the middle of a contraction, my epidural was inserted.  The sight of the needle caused my baby’s father got woozy and fall back into his chair borderline unconscious.  Great.  Just what I needed.  If he couldn’t take the sight of a needle, how was he going to handle this birth?!?  After gaining some of his composure he went outside for a smoke.  He came back in smelling disgusting, I bitched at him, and he left.  He said he was going to get food, but I did not see him again until about 4 am. 

I felt very little pain for hours but did feel tremendous pressure as the baby made his way down the birth canal. 

At about 8:30 am I began to feel more than pressure, but I still was not in pain.  At this point I was told that I was still not progressing and that a c-section was imminent.  My doctor had just been called into an emergency c-section for a mamma with multiples so when she was done, I would be brought in.  Shortly after 9:30, a nurse came in to check me…I was finally at 9 cm, but my contractions were not as close together as they wanted them.  They gave me another dose of pitocin and left.  Shortly after being checked the next time, I realized that this baby was coming…RIGHT THEN!  I frantically tried to find the call button.  I still could not maneuver to get to it due to all the monitoring and IVs and began to yell frantically.  A nurse came in and told me that my doctor was getting cleaned up after her last delivery (the c-section surgery) and would be with me in a few minutes.  I told her that I needed to push NOW!  She grabbed two other nurses from the hall and some poor medical student that had never seen childbirth before and began to get the room prepped.  I was told to go ahead a push on their count.  1-----2-----3-----4-----5….I quit pushing.  I was yelled at and told that I had to push for the full count (whatever that was).  “Again!  1-----2-----3-----4-----5-----6-----7”.  My knees were by my chest.  One was being held by the medical student that was fairly quickly turning green and the other by my baby’s daddy (that didn’t look much better).  Between them, the monitoring equipment, the bed…I felt like Gumby.  I knew that this was not a natural position for my body to be in.  I was in pain.  Every contraction, every push…I felt course throughout my entire body.  I felt my muscles spasm from the awkward position my body was in, felt the tear as his head came out.  The OB entered at sometime during this point and was just getting her gown on as the nurses told me that his head was out and that I needed to pant like a dog to keep from pushing anymore.  Keep from pushing?  Are you f***ing crazy?!?!  I want this baby out!  Now!  A few more timed pushes and he was out.  They held him up in the air near my face but then immediately whisked him away after one picture was taken to be bathed, weighed, given who knows what kinds of medications.  Aidan Antonio was born on January 19th at 10:38 am weighing in at 8 lbs 4 oz and 22 inches long.  He really was NOT the big baby that they had predicted. 

As this information was shouted at me, all I wanted to do was hold my baby, see my baby, but I was told I had to lie back and be stitched up and that “I wouldn’t feel a thing because of the epidural”.  I felt every time the needle went in, every tug, every knot that was made. 

When I was finally stitched up and my monitors were removed, I was given an apple juice and forced to get out of bed and into a wheelchair to be brought up to the mother/baby unit.  I still had not had more than 5 minutes with my newborn baby.  I asked if I could hold him and was told that it was against hospital policy for me to hold him while in a wheelchair and that he would be brought up in his plastic bassinet to my room after he had some tests done in the nursery.  While in the elevator going up to the mother/baby until I gazed at him lying there in that plastic box.  It was then that I decided that I was going to breastfeed and I informed them of this and that I did not want him to have formula.  The elevator dinged and I was taken to my room and my son was taken in the opposite direction.


I spent an hour in a shared room with a teenager that had just given birth to her second child.  She was on the phone yelling and screaming the entire time.  From what I could gather she had been discharged but no one was there to take her home.  All I wanted was to sleep and be with my baby and I could do neither.   

About an hour and a half later, the roommate finally had left and he was finally brought to me.  I was told that because a lactation counselor could not see me until tomorrow that I probably would not be able to breastfeed. (Thanks for that vote of confidence!)  However, I put him on my bare chest and he immediately latched.  He was later taken back to the nursery for his heel prick and I was told that he got fussy while he was there.  Due to the long wait before they could get to his test, they gave him a bottle of formula which he ate in its entirety (I was only down the hall, but for some reason they wouldn’t bring him to me to breastfeed).  After they finally finished their tests, he was brought back to me and I refused to let them take him again.  It was wonderful to finally have this little guy in my arms.                  


Reflection:  After going through this story, I realized why I froze.  The pregnancy, the labor, the delivery…nothing about it went how I expected.  I was lied to, manipulated, insulted, aggravated, and ignored.  These feelings made me afraid of pregnancy, afraid of childbirth, afraid that this next pregnancy would not have a happy ending.

Through everything that happened that day…the thing that matters most is that little boy who was born.  He turns six years old in just two days and I could not imagine my life without him.  His laugh is contagious.  His eyes sparkle when he smiles.  His creativity is endless…from playing make believe, telling stories, making art, and making up words and phrases like “fork it up” (use a fork) and “cheese sandwich all cooked up” (grilled cheese).  Nothing about his existence has ever been expected…and frankly…I have come to love that about him.           
   

Sunday, January 6, 2013

What is Love?

Consider this my introduction, albeit not my first post:

I am not a blogger, of this I am fairly certain.  Do I feel the need to express my daily ins and outs?  -Not really.  Do I think anyone will actually read what I write or even care what the words say? -I suppose not.  Do I feel that I can even begin to justly put into words these thoughts that overwhelm this brain of mine? -Doubtful.  Yet here I am, blogging away, claiming the tiniest little slice of the cyber world for my thoughts, whatever they may be . . .

Today, as I was tucking my son into bed (for the second time), he asked me how he would know when he was in love.  What a question to come from an almost six year old!  I quickly rambled off some answer about how he would just know, kissed him goodnight, and left his room.  But the question lingered.  How do you recognize when you are in love?  I have pondered and pondered, read others thoughts on how to answer the question, questioned myself and my own feelings and for now...this is the answer I wish I had given him:

She is the one that you know your future lives with.  She is the true essence of what you have always searched for before.  When you look into your heart you see her face.  You find home within her eyes and faith within her smile.  Her little mannerisms will warm your heart and drive you crazy.  She will cause you pain at times, but rest assured that the pain will soon subside.  Her words can cut you like a knife, but her touch is a cure all for whatever ails.  Her tears will rip your heart to shreds, and you will want to cry whenever you see the disappointment on her face.  She will take your emotions for a ride each and every day.  She will make you search parts of yourself you never knew existed and she will make you answer questions you could never deal with.  But at the end of the day, hers will be the only face you want to see.  And even though she has the ability to make you feel so bad, you will love her even more for making you face what you can't and stretching you to your outmost limits.  That is why you will love her.  She is the one who will fill your heart with joy just by seeing her.  She is the one that makes you a better person when the day is done.   

These are my thoughts for today . . .

Perhaps I will write more another day, perhaps not.
Perhaps you will read more another day, perhaps not.

But until then (or not) . . .

I will return to my neverending state of Mommytary Madness.