Thursday, November 11, 2010

Update

Cale had a follow-up doctor appointment yesterday and so I thought I'd update you on the current findings:

Nothing.


How very non-exciting.  Alex and I haven't noticed any real changes in Cale since he started the steroids, except for the fact that he seems to be more uncomfortable and spitting up more.  However, he gained seven ounces (!!!), so I suppose something good has come from this little experiment.  His doctor wants to continue him on the steroids through this week because supposedly by Friday we will definitely know if they are either going to work or not work. We are scheduled for another appointment next Tuesday.

All in all, we're pretty frustrated that nothing is really changing but I suppose this is just another step in the elimination process.  Other than being in obvious discomfort during and after eating, Cale has been in great spirits which we are incredibly thankful for.

In other news, we are taking Cale to his very first Griz game this coming Saturday!  Alex and I went back and forth on what we wanted to get him for his birthday and when we finally just decided to ask him what he wanted, he said "football".  My dad was a stud and hooked us up with three great tickets so we're leaving Riley behind and having a special outing with just the birthday boy!  I'm so excited I feel like peeing my pants!  He is going to have the time of his life!  He loves watching football on TV so I can just imagine how he'll react when he gets to watch it in person.

I can't believe how quickly Thanksgiving is approaching!  Alex's mom and step-dad are coming to visit from Seattle which means I am hosting my very first Thanksgiving dinner.  My mom has set the standards high in my mind and so I feel a bit like Monica from "Friends"...in one episode she decides to compete with herself by trying to top her previous Thanksgiving dinner.  I fully intend to spend the entire day in the kitchen, completely stressed and overwhelmed, while not accepting any help.  Just the way I want it. :)

At this very moment I feel at peace, which is a 180 degree turn from how I felt last week.  I hate seeing Cale in pain but I don't hate myself for not being able to fix it.  Riley is a typical two-year old girl who throws tantrums over dropping her fork or a spaghetti noodle falling off her plate, but even those I have been able to deal with rather well.  She clings on me 24/7 and rather than being annoyed I've discovered that I kind of like it.  Neither of my children have napped this week, and being that it's now Thursday and I still have my wits, I consider that a phenomenal feat on my part.  I can only attribute any of this to answered prayer and a god who loves unconditionally.

Of course this could all change by this afternoon but at least now I have a sense of humor on the whole situation.

Saturday, November 6, 2010

Pure

I've always wanted to be upfront and honest with my readers, and myself, when I created this blog.  I wanted people to understand what my life was like having a disabled a child.  I also created it to be an escape.  Writing is somewhat of a drug to me; it clears my mind and gives me a sense of euphoria, however short lasting.  No wonder English was my favorite subject in school. 

I also understand that my raw honesty can be hard to read, and maybe even sometimes boring.  I try really hard when I sit down at the computer to write about something funny that went on that day or something comical the kids have done,  In being honest with myself, though, it's much easier to share the big, the bad, and the ugly.

This last week was beyond ugly.  My poor husband let me go to bed around 7:00 in the evening and I slept soundlessly until 8:00 when my daughter hopped up on my bed demanding chocolate milk.  That was my cue that the day was about to begin and if I was lucky enough, I might have the energy to wash my hair.  I tried to put up a good front in front of my children and my friends but inside I was screaming, loudly, for an escape.  Life had gotten too hard for me to handle.

To hopefully quickly summarize the events leading up to my horrible, no good, very bad week, my mind was being held prisoner to the stresses of Cale.  I've had a hunch for quite some time that he's losing weight and I literally feel exhausted of all options in trying to get more calories in him.  For a child who cannot eat, adding more calories to his diet is impossible.  I was too scared to take him into the doctor for a weight check because I knew my fears would be confirmed and then they would most likely admit him into the hospital, just like they had before when he was about six months old.  The option of admitting him into the hospital was not an option I was willing to consider.  Finally on Thursday night I thought we had breakthrough!  He drank an entire cup of his specialized extra-calorie formula, which is something he has never done before.  Praise God!  Knowing he had those extra calories in him lifted a giant weight off of my shoulders.  Unfortunately, seconds after he swallowed his last gulp it ALL came back up.  And not because he was sick but because of the stupid crap he has to deal with inside of his gut!  I was so angry, so defeated, so helpless that all I could do was grab my bottle of Resolve Carpet Cleaner and weep.  I scrubbed away at the carpet far longer than I needed to and just cursed God for making my son this way. 

I went to bed not speaking to my husband because we all know we deal with these kinds of things very differently.  I prefer to grieve in quiet while he wants to talk it out.  Rather than lean on each other we end up creating more hostility within our home, which is never a good solution for anyone.  We are slowly learning that we are not each other's enemy.  This is a very hard lesson to learn.

Friday morning came.  Riley jumped up on my bed, as per usual, demanding chocolate milk and as I sauntered down the stairs, I heard Cale stirring in his bed.  I decided to bring him upstairs with us so that we could all snuggle in our bed and watch cartoons.  I cherish those fifteen minutes so much because no one has to worry about if someone's finished their breakfast, gone potty in their panties, eaten a tube of toothpaste, gotten into the drawer of knives, etc..  It's just me and my kiddos enjoying being cuddled up in bed together, no matter how annoying the cartoon may be.

Our fifteen minutes were up, though, and it was time to get ready for the day.  I fought with Cale for over an hour trying to get him to finish his breakfast, finally giving up because I knew that the more he ate the more likely he was to throw it all up.  Knowing he needs those calories and knowing that he's not getting them twists my stomach into a million knots until I finally feel like I'm going to throw up.  I hate feeling like I'm failing him as a mom.  Lucky for us, and I saw this with the heaviest of sarcasm, the dietitian was coming to our house in the afternoon to check on how Cale was doing.  She weighed him, did her little calculations and told us that he was underweight and his BMI level was a dangerous low.  DUH.  This is something you can tell just by looking at the kid.  She gave her little spiel just like she gives every other normal child, making me feel like an idiot parent that doesn't know how to adequately feed her child.

The dietician finally left and I abruptly got on the phone with our pediatrician.  I was at my wits end and I didn't know what to do anymore.  She very nicely told us to come in right away and even though she had an afternoon of patients lined up, she spent over an hour listening to my concerns and then offering solutions.  Hallelujah!  Her plan is to start Cale on two different kinds of steroids over the weekend.  I'm not exactly sure what the steroids will do but she gave Cale a diagnosis that is was too long of a word to repeat or even understand, so please just believe that the steroids are to treat that.  If we don't see the improvements the doctor would like to see, she will most like want to put in a  mickey button.  A mickey button is a non-medical term for feeding tube.  It will be hooked up through his belly button and when it's time to eat we'll just plug in a little tube and let the food flow.

I have an array of mixed emotions about this.  I obviously don't want my son to have to eat through a feeding tube.  It will be just one more thing that makes him different.  But as my mother-in-law so eloquently put it this morning, "He is different".  I also am not fond of having him go though another surgery.  This poor kid has had more anesthesia than anyone should have in a lifetime, but perhaps this option is a blessing in disguise and we will see God's plan fold out before our eyes.  Plus, the surgery would happen in LA and I could use a little sunshine in my life right now.

As for baby number three, things with Cale has made me realize that we have no time or energy for another baby.  At least not yet.  Do you ever feel like your dreams just keep getting squashed around every corner you look?

Wednesday, November 3, 2010

The other side of Me

Yesterday was probably the hardest day I've encountered in a very long time.  Without going into every detail explaining why it was so awful, the best way I can explain it is that I just wanted to lay in bed, hold my breath, and fly away.

I'm not talking about suicide.  I would never, ever consider that option.  It was more of a feeling of wanting to escape everything bad that is going on in my life, or more or less my perception of what is bad in my life.

It started out yesterday at the mall.  My friend has asked me to meet to there to grab some coffee with another gal and let our kids play.  As per usual, Cale doesn't really like to play.  He prefers to dig through other people's purses, grab cell phones, untie strangers' shoe laces, etc..  My take on his behavior is that it takes one hundred times more effort to play than it takes other kids, therefore he chooses to just give up and do things he can do, such as dig through purses, untie shoes, and grab at cell phones.  It literally breaks my heart to see that kind of defeat in him.

After we gave up playing on the train we all decided to venture over and get a pretzel.  All of the other kids were eating one and so I gave Cale a little piece off of Riley's dipped in Ranch.  As per usual, he fumbled with it in his fingers and Ranch poured from his mouth and down all over his face.  One of his peers looked over at Cale and said, "Eeew, Cale's making a mess." Perhaps I was a bit more sensitive that day but that little comment made me cry.  I hate seeing Cale getting made fun of, mostly because I know that this is just the beginning.

All the while I was with my friends the subject of baby showers and baby gifts fluttered through our conversation.  I feel like I should be able to at least hear about babies and see pregnant bellies without turning into a sop, but for some reason my sadness keeps getting worse, not better.  I really want to be genuinely happy for my friends, and I truly believe I am...in fact I'm sure of it...but the pain just doesn't seem to go away.

I'm already taking anti-depressants from which I started when I first had my miscarriage.  I'm a little worried about myself, and so is my husband, because all I want to do is sleep.  I can take a three-hour nap in the middle of the day and fall fast asleep again at bedtime.  I'm always tired, always on the verge of crying, and never really having an appetite.  I've had to choke down food just to make sure I get at least some nutrition in me.  I've had little desire to work out; something that used to energize me and put me in the best of moods.

I have no idea what's going on but I want so badly to just return back to me.  The happy, excited, goofy, Erica.  I miss her.

Monday, November 1, 2010

Honesty with a side of baby, please.

It's been five months since we lost Baby Burkhalter.  Even though my twelve-week bean looked more like an amphibian than a human, I still give our baby a name because I loved it dearly.  I would lay in bed at night, terrified about how my life would change adding a third child, but comforted by the fact that unlike my other two pregnancies, I was already deeply in love with the child growing inside of me.  I would also lay in bed rubbing my ever-expanding belly (it's amazing how fast it grows with the third pregnancy) and made a vow to myself not to get so absorbed in how my body was changing.  With both Cale and Riley I griped about gaining weight and was always so nervous to step on that evil weekly scale, but this time I promised to give my baby the best home possible, even if it meant gaining fifty pounds.

But then my baby left me.

This weekend Alex and I went shopping for some warmer clothes for the kids.  It's frosty in the mornings and I feel like a terrible parent dropping Cale off at preschool without proper layers.  Riley grows like a weed and I swear she needs new clothes every few weeks.  After we put the kids to bed I decided to get all of their new clothes ready to be washed.  I tore off the tags and started separating colors and for whatever reason I started to weep.  Sob, really.  Alex came into the room and was obviously startled by my quick change in mood.  Between sobs I told him that all of these clothes were too big..."I wanted to be folding new baby clothes.".

I was beginning to think that time was making things easier.  I assumed time was going to help me get over the baby I never really had.  It's proving to be quite the opposite however.  Little things that should be harmless can trigger something inside of me that instantly set me off.

I heard a friend of mine tell me that a January 1st delivery would be the absolute worst.  January 1st was our baby's due date and even though she meant nothing hurtful behind her comment, it took everything in me not to crawl in a hole and hide.

On the other side of this coin is the agony of trying to decide if we should try to have another baby.  My prayer since the day we found out we lost our baby was that if we were meant to try again that God would make that desire known in our hearts.  Sometimes I am so confused that I don't know where my desire is.  What if we make the wrong choice and we lose that baby, too?  Or what if we make the choice to have another baby and it turns out that whatever is going on with Cale is genetic and we then have two children with disabilities.  My fragile little heart would not survive that.  I wish God were here to sit with me and tell me what He wants for our family, in LOUD, AUDIBLE, words.

The stress of family planning is going to make me older much faster than I'd like.

Thursday, October 21, 2010

"Candy" is the magic word!

Candy!  Or as Riley would say, "tandy" since she pronounces her c's like t's.  Cale doesn't live at our house but Tale does. :)  Riley loves candy and it's worked as a bribery to get her to do almost anything.  If we want her to finish the rest of her dinner, sit still while I do her hair, lay down to get her clothes on, etc., we just bribe her with candy.  It works nearly every time and even though I know it won't work forever, I'm of the mindset that whatever works in the moment, DO IT.  Please hold your judgments for later.  

Backing up, we've been lightly trying to introduce the concept of going potty in the big girl potty for about six months.  We've had a little potty in the bathroom for nearly a year, just to get Cale and Riley used to the idea before we actually started talking about it.  Both Alex and I agreed that we wouldn't push the issue and that when they decided they were ready,  that's when we would be ready to teach and guide them.  As I started to see other kids that were Riley's age become interested in potty training, I would casually ask her if she wanted to try and go in the big girl potty.  Each and every time her answer would be a definite "NO!". Alrighty then.  After about six months of her refusing to even try, I began to think we would never rid our house of diapers.  

A few days ago Riley was laying down on the floor before bed, getting her diaper changed and her pajamas on, and I nonchalantly asked her if she wanted to start going potty like a big girl.  As per usual, she glared at me and said, "No!".  "But Riley, if you go potty in the big girl potty I'll give you a piece of caaannnnndyyyyy.".  

As soon as I said the word candy she jumped up, completely naked, and started running towards the bathroom.  She sat down on her little potty and with just a little bit of coaxing she finally went to the bathroom for the very first time!  Alex, Cale, and I were all there to cheer and clap for her, which she absolutely loved, and after she was finished she promptly demanded candy.  Well, the only problem was that I was so used to her refusing to even try using the potty that I said I'd give her candy without thinking about the fact that we didn't have any candy...not even one tiny piece of chocolate anywhere in our house.

Whoops.

Thankfully, the promise of going to the candy store the next day was good enough and she continued to show interest in the potty even though her mom had lied about the rewards straight to her face.  Being very brave (and probably very stupid) I put big girl panties on her the following morning to go to the candy store.  She picked out several different kinds of jelly beans and although we still put her in diapers for bedtime, I've been putting her in big girl underwear and we really haven't had too many accidents and she's been very good about telling us when she has to go.  We've truly lucked out with this kid and potty training isn't nearly the nightmare I had created it to be in my head.  

That isn't the best part, though.

Since we've been spending a good portion of our days in the bathroom, Cale is usually present for most of our trips to the potty.  He's been watching Riley, helping her flush, getting the toilet paper for her, and clapping for her when she's done.  He seems to be very interested in the whole process and has even asked to sit on the little potty with Riley. :)  With Cale's undefined motor delays we aren't entirely sure he can feel the sensation of having to go to the bathroom.  We think he can but since he can't tell us we have no sure way of knowing.  He has major constipation issues and so it's blatantly obvious when he has to go number two, so I'm assuming he can feel that sensation.  Yesterday while he was squatting on the floor, in his diaper mind you, he shot up and headed toward the bathroom as fast as he could go.  We followed him in and he was pointing to the potty.  I undressed him and plopped him on the potty, not really expecting anything but mainly just humoring him.  To my complete surprise he actually went!  Riley was there and clapped for him and said, "Good job, Tale!".  Cale was so proud of himself and thoroughly enjoyed the process of wiping and flushing. :)  Even better, though, Cale walked out of the bathroom and signed the word candy.  Well, as most of you know Cale isn't able to eat candy.  He's never even tried it.  Again, I decided to humor him and gave him one tiny jellybean.  Once he put it in his mouth I could see he was a bit scared but he refused to panic and tried to chew it instead.  About two or three minutes later he opened his mouth and signed all done!

Holy crap!  Cale just told us he had to go the bathroom, he went, AND ate a piece of candy!  Three firsts in the matter of five minutes!


I learned a few important lessons yesterday.  One was that I should never, ever underestimate Cale's abilities.  He is more aware of the things going on around him than I even am.  He desires so much to be like everybody else and I'm learning more and more everyday that he is just like everybody else.  I've said this before but even though he appears to be different on the outside, he truly is a typical toddler.  There's nothing better in this world than watching him figure things out and surprising us with his newfound knowledge.  This kid is going places.

Since yesterday Cale has eaten an entire piece of Hershey's miniature candy and two more jellybeans.  As any normal child, he's discovered that candy is really good and I can already see that we've probably created a monster.  At this point I am just so proud that he's able to participate in normal kid indulgences that I'll give him all the candy he wants.  As my mom put it, there's always the option of dentures to fall back on. :)

So I have one child in the midst of potty training and another who is in the very beginning stages, which pretty much means I will be spending the majority of my days in the bathroom.  The good news is that our bathrooms will be sparkling clean since there really isn't much else to do while they each spend about half an hour on the potty at a time.

They are their father's children.  



Thursday, October 7, 2010

Five years in the making...

According to Alex's and my plans when we first got married, we should just now be starting to talk about having kids.

Funny.

This Friday Alex and I will celebrate our five-year wedding anniversary.  I can still remember that day as if it were just yesterday.  Cliche.  But true.  What a beautiful fall day it was to marry the man of my dreams!

Although I didn't see it then, I would definitely agree that the first year of marriage is the hardest.  For me, it was extremely difficult to let go of the expectations I thought marriage would fulfill.  It was saddening to learn that marriage wasn't all "little house on the prairie" kind of stuff.  Marriage was, and is, hard.  But oh so worth it!  It's only gotten better since that first year, and thanks to the kind of man I married, I can't wait for the next fifty! :)


I knew I was marrying a great man when I said "I do" but I had no idea just how great of a man he would turn out to be.  He loves me with all his soul and devotes his life to the Lord and to our kids.  He's an amazing father, the kind that gets on the floor to play with them rather than watching them from his seat on the couch.  He's committed to his family and you can see that in nearly every aspect of his daily life.  Every action is for his family.  He's forgiving, selfless, loyal, loving, hard-working, and those are just a FEW of his very best qualities.  He truly is a one-of-a-kind gem and I'm so glad I was the one to find him.

So what do we have to show for the five years we've been married?  Lots of arguments and make-ups, many tears but more laughs, two "holy crap there's two pink lines" moments, a small apartment with no air-conditioning, two wonderful houses, and 1,825 mornings of waking up to the best man in the world.  It's gone by incredibly fast and even though we're not where in the place we had planned for when we first got married, it's the only place I want to be.

We are able to celebrate, thanks to my mom and sister who are driving from Billings to watch Cale and Riley, by taking off for a couple of nights to Quinn's Hot Springs.  Neither of us have been there and don't really know anybody that has, which means Alex is totally jumping out of his comfort zone and being spontaneous.  I have no idea what we're going to do but I'm so excited, for two reasons.  One, two nights away from the kids is like a mini-vacation and two, the kids have been driving me insane the past couple of days which means this break could not have come at a better time.  We can sleep in without being woke by a little girl demanding chocolate milk and Curious George.  We can go to bed without making sure a little boy has his two little ropes, his monkey, and his favorite blanket.  And we can lie down to go to sleep without listening to Riley cry about not having both of her nee-nees (favorite blankets), her big pig, her little pig, her elephant, her hammer, her microphone, her big blanket, her princess night-light, and her two other night-lights placed strategically across the room.  Yes, she really does need all of that to go to sleep.  Alex and I have indeed created a monster.  Good luck to my mom and sister. :)

And yet, even though I'm so looking forward to getting away with my husband, I will no doubt be itching to return to our chaotic and stressful life.  Five years and we've already created something wonderful and magical - OUR LIFE.

I love you, Alex.  Thank for you for the five years you've given me with you.  You're one amazing man and I'm so lucky to be married to you!  

Monday, October 4, 2010

Trying my very best to be sensitive here

Based on my experience with Cale, grief comes in waves.  Some waves are small, easy to deal with, just barely getting your toes wet.  Other waves can be huge, enveloping your whole body and churning you underneath the water until you feel like you can't hold your breath for one more second.  And other waves are simply waves; they roll in, get you wet, and then roll back out again.

I never thought losing a baby to miscarriage would be anything like that.  I just assumed it would be one of those huge waves that takes you under water until you feel like you can't hold your breath for one more second, and then it would release you into the fresh, oxygenated air.  This weekend, though, I realized that even this type of grief can show up at any time, in any form, completely unannounced.

On Saturday my friend had a baby shower for her new baby boy that is to arrive at the end of October.  I've known about the shower for quite some time and have had multiple discussions with my husband, and even my therapist about whether or not I should go.  They both agreed that it would be healthy for me to go, and maybe even easy.  The whole night before the shower and then the morning of, I had a huge pit of anxiety rolling around in my stomach.  I was irritable and snappy towards my husband and kids and I couldn't really pinpoint an exact good reason.  I just wanted to go to the shower and get it over with.

The shower itself was fine.  My best friend who hosted it did a wonderful job and everything was beautifully set up.  The mother-to-be looked glowing and everyone was excited to finally celebrate this baby boy she has been carrying for nine months.  Naturally, I am a very compassionate, empathetic, and cheerful person but I know none of those qualities exuded themselves that day.  For reasons I can't even explain, I started tearing up while the mom began opening up her gifts.  Seeing the tiny clothes and fun teething toys just hit me and no matter how hard I tried to stop them, the tears started welling in my eyes.

"I hate this, Erica.  Stop it!  You're here to support your friend, not be the downer of the party."  I truly was embarrassed by my emotions and after I realized that I wasn't going to be able to fake my way through the rest of the shower, I quietly made my exit.

As soon as I got home I decided to go for a run because exercise generally makes me happy.  And it did, for a brief moment.

Sunday must have been the compilation of everything that had gone on the day before.  I was exhausted; not just tired, but completely and utterly lacking of any reserve of energy.  I cried multiple times throughout the day and never could quite fully explain to my husband what was going on.  How can you explain something to someone when you yourself don't even understand it?  I hate the person I was yesterday and to be honest, I just want the sadness to go away so I can go on being the Erica I am proud of.  I don't want to have to go to bed at 7:00 just to escape the sadness.

I just want my life back, as if that baby never started to grow inside of me in the first place...as if I never had the chance to start loving it before it was taken from us.