In the blink of an eye

Facebook has the uncanny ability to flash pictures across my screen, reminding me of good times gone and times I wish for again.  Most of the pictures I'm talking about are the ones of our vacation to Cabo earlier this year, but occasionally I see older pictures of when my kids were babies.  I see those tiny faces and all of a sudden I'm clicking through hundreds of pictures, tears welling up in my eyes, and wishing for them to be that small again, even if it was just for one day.  When did I become this person?

Pictures of Cale usually drudge up painful memories and remind me of how hard things were when he was smaller, but occasionally I'll come across a photo of him sitting up for the first time or taking his first steps and I immediately become all weepy and wish for time to slow down.  Pretty soon he'll be marching off to kindergarten and it'll be the beginning of the end.

The pictures of Riley as an infant are usually the sure-fire ones to bring tears to my eyes.  I have no idea how I kept calm when I realized I was pregnant with her before Cale even turned one, but I didn't know any different so I was naive and just thought, "hey, we're gonna have another baby!".  Complete craziness.  When she was born, and I could escape from all the worry of whether or not she was going to be a normal developing child, she introduced immediate joy to our lives.  She was always the prime subject of laughter and lightheartedness.  I know God gave her to us for many perfect reasons, most of which we have yet to discover, but I'm pretty sure his main purpose in those early months was to lighten us up so Alex and I didn't become permanent, dull pessimists.  How could any one person not be happy when they're around Riley?  She truly has grown from an infant to a young girl in just the blink of an eye.  Why couldn't have time moved this fast when I was younger and waiting for Christmas to arrive?

We are celebrating Cale's fourth birthday with all of his friends tomorrow.  We rented a big slide and are having his party up at our church.  I'm not exactly sure what I was thinking trying to organize a birthday party right after hosting Thanksgiving, but hopefully the small details I've forgotten will be overlooked once I see how happy Cale is when he lays his eyes on the slide.  He's going to be in heaven!  I can't believe my little three-pound baby boy is going to be four years old.  When I open my eyes again he's going to be asking his dad for the keys to the car.  Oy, oy, oy!

Tithing and Thanksgiving

Tithing is a touchy subject among many people, especially Christians.  We all have are own ideas on what's appropriate and we tend to justify all too often why we can't give financially.  Some people think that the giving of their time is just as valuable as the giving of their money.  I have my own ideas on tithing but that's not why I am writing a post on it.  I also put the word "thanksgiving" in the title of this and I hope to convey the blessings Alex and I have received because of how we choose to tithe.

This first story many of my close family and friends have already heard and so I'll keep it short and simple.  After Cale was born we quickly inquired many, many medical expenses.  Fortunately my husband is a financial extraordinaire, therefore we had a good chunk of savings to help us pay those first bills that started coming in.  Eventually, however, our savings was no longer enough.  The bills kept coming faster than the paychecks and we were given our first major financial challenge:  we needed to write our tithe check to our church but needed that money to pay off a hospital bill.  Alex came to me and asked what we should do; do we write the tithe check and ignore the bill, or pay our bill and just forget about that month's tithe.  Without really thinking I quickly told him we needed to tithe.  Had I thought about it a little more my answer might have been different, but Alex took my opinion to heart and we went to church that Sunday and dropped our check into the offering plate.  Less than a week later, we received a "love gift" from our church for $1,000.  God is good!

My next story happened just last week.  Alex had gotten a bonus at work several months ago.  We decided to set a portion of it aside to tithe.  Alex held on to the money for months and just last Monday decided to finally give it away.  Meanwhile, we had decided to get Cale an iPad for his birthday.  They have amazing applications for kids and also for people who cannot speak.  Even though Alex has wanted one ever since the concept was even introduced, he decided to set aside his own selfish desires and let his son have one first. :)  Like I said, we wrote our tithe check on Monday and on that following Wednesday, someone from our church who had heard about our desire to get Cale an iPad donated one to us!!!  This person had one for their own personal use but saw that Cale had a greater need for it than they did and decided to generously give it to us.  Wow.  Both Alex and I cried when we heard what they were doing and we still can't get over the fact how thoughtful and selfless people can be.  Again, God is good!

I share these examples because with Thanksgiving only a day away, I have been thinking about what I am most thankful for.  My immediate answers are of course my family, my friends, my health, and the fact that we have a warm place to live and food in our refrigerator.  But when I reflect on what God is doing in my life and how I can be thankful for those things, I first thought of how God has blessed us when we choose to obey.  I sometimes get in a rut when all I can think about is the crappy stuff we have to deal with, but at the end of the day God has been there for us every second of every day, watching over us and providing for us around every corner.  He never takes his eyes off of us for even a split second.  He always has a plan and He always fulfills His promises.

Now that I have my own children and I am able to experience the love a parent has for them, I am always amazed that God loves me even more than I love my own kids.  It's impossible to comprehend and I even become a little defensive when I think too hard about it.  How on earth could anyone love me more than I love Cale and Riley?  I thought I loved them better than anyone!  I am so thankful that God loves me and cares enough to want to be involved in the smallest details of my life.  I hope that for everyone reading this that you are able to experience God's love this Thanksgiving!

Dads

Alex and I are doing a marriage bible study up at our church following a book called Staying Close by Barbara and Dennis Rainey.  This is the first time in five years that Alex and I are both free during the Sunday School hour.  In previous years we've either helped with the youth or had too little of kids.  Now that both Cale and Riley are old enough to be in their own Sunday School class and Alex and I are taking a break from helping with the youth, we decided it would be fun to finally do a class together.  I'd have to say that this particular class was perfect for us to get involved with because it's challenged us to talk through difficult things, especially during times when we really didn't want to talk to one another.  Does anybody else fight with their spouse more than usual on Sunday mornings?  I don't know what it is about this day that puts me on edge, but the task of getting out of the house on time pushes a button in my brain that must read, "Every little teeny tiny thing about your spouse will annoy you today."  Not all Sundays are like this, of course, but a good portion of them turn out to be the most stressful day of the week.  Being involved in this marriage study has really made me feel foolish for being such an old hag.

This week the book talked about the role that mothers and fathers play in their children's lives.  The chapter about mothers made me feel incredibly inadequate and a complete failure as a mom, but maybe I'll talk about that another day.  The chapter about fathers, however, really made me thankful and appreciative for Alex, but maybe even more so, for my own dad.  I've known for quite a long time that I have an amazing dad, but somehow our group's discussion brought out a whole new respect I have for him.  I'm so thankful that I've never had to doubt for one split second that I was loved by my dad.  He was always involved in my life but the things I remember the best are him coaching my softball teams year after year and then his captivating interest in my golf game.  He volunteered to take ten-year olds golfing on Tuesday mornings, which could not have been easy because I'm sure as a ten-year old I just duffed the ball around and didn't pay any attention to the rules.  Painful to watch, I bet.  When I turned old enough to get involved in tournaments, he was ALWAYS there.  In high school my favorite memory  was being told by my mom that he elbowed people out of the way to see my score on the scoreboard.  He was shameless for me and words are not sufficient enough to tell you how loved that made me feel.  When we would go hiking in the summers I remember him getting so mad at me and my sister for getting too close to white water rivers.  Looking back, I now realize he got as mad as he did because he wanted to protect us.  He always wanted the best for us, no matter what that looked like.  He encouraged me in everything I did and praised me for all good things.  He got us first and last day of school presents every year, even through college.  He continues that tradition with Cale and I love it!  Aside from loving me, though, I'm most thankful for how he loves my mom.  They are coming up on their 28th wedding anniversary and now that I'm older I've realized that almost every security I had as a kid was due to the fact that my parents loved each other and stayed together.  He's a hard worker and has made incredible gains at work, most of which I probably don't even know about, but no matter how important work was to him, he always made time for his family and that was evident throughout my entire childhood.

Dads are so important in a little girl's life and I can't wait for Riley to get a little older when she starts to realize how great of a dad she has.  Alex is already talking about taking her out on dates and showing her that she's the most important girl in the whole world.  I just know that Riley will feel the same way about Alex as I do about my dad.  I'm so thankful that I married a man who can be that for Riley.  On the way home from running errands the other night, Riley saw the moon up in the sky and told Alex that she wanted it.  I could see the twinge of pain in his eyes when he had to tell her he couldn't.  If it were possible, I'm sure he would spend the rest of his life trying to get her the moon.

I love you, Dad.

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.

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?

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.

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.