Birthday Bliss

I turned twenty-seven years old last week.  27!  I honestly still feel like I could blend in with the high school crowd, however when I look in the mirror and see more and more worry lines surface, I'm annoyingly reminded that I am indeed approaching, , thirty!  How can that be?!?!


In years past I haven't been much a fan of my birthday.  Birthdays were fun up until I turned eighteen but after that they lost that certain amount of excitement of turning a year older.  So when my birthday came around this year I didn't really look at it much differently than any other day.  My husband, however, had something else in mind.  


He went above and beyond himself to make each part of my day special.  It started off with little surprises in the morning and the surprises didn't stop until we went to bed.  His goal for my birthday was to make me feel extraordinarily special and I must say that he more than succeeded.  What a guy!

I was given several gifts throughout the day, always thinking they were my one and only gift, but my "big" gift was saved for during dinner.  We went to Hu Hot per my request with Alex's dad and two brothers.  I think he was saving this gift to give to me when there would be witnesses to capture my reaction. :)  I don't remember exactly what the card said but after reading it I knew that his gift had something to do with photography.  As many of you know, it wasn't unusual for me to take over a thousand pictures in one month but the past four or five months I have lost my passion for taking photos. Correction, I haven't lost my passion but rather gotten so frustrated with not being able to take the quality of photos that I'd like that I decided to stop all together.  So my husband, being the intuitive and sensitive man that he is, found a solution to my photographing hiatus.  He scheduled for me a six-hour, private, one-on-one session with a photography instructor at the Rocky Mountain School of Photography!  I can honestly say that I think this was one of the best birthday presents I have ever gotten.

This last Saturday was my big day!  I have to admit that I was so nervous and giddy about this day that I literally felt like a little kid on the first day of school.  I met him at 8:00 and we got started right away.  He got a baseline for what I already knew and we just went from there.  We basically did book stuff for the first four hours and then he set me loose with a few assignments to complete for the next day.  I spent the rest of the afternoon taking photos and let me tell you, it was heaven!  The next day he critiqued my photos and answered the questions I had, and then he taught me a little bit about composition and photo editing.  It was exactly what I needed to give me that boost into wanting to get back into taking pictures.

Being a stay-at-home mom I often feel like I don't have any skills to offer society.  I don't go to a job and contribute to making a business successful, I don't get a paycheck for the hard work I put in, and there never seems to be any recognition for the work that I do do.  Sure, I can be really good at wiping down counters and making lunches, but that just doesn't satisfy.  No one ever comes into our house and says, "Wow!  That's a marvelous pile of laundry that you just folded!"  Photography, however, is something I can be good at (hopefully) and see lasting positive results.  My kids will most likely be annoyed with my constant need to take pictures of them, but someday...someday...they will be grateful for the memories they can see in a photograph.

So, this year's birthday was definitely memorable.  After telling Alex that he gave me one of the best birthday presents that I could remember he replied, "Well, crap!  What am I supposed to do next year?", to which I quickly replied with, "There's always diamonds.".

Love you, A! :)

Denver: Part Three

This will be my final post about our trip and then I promise to move on to something more interesting, or at least more positive and cheery.


I had such high hopes and dreams for this trip.  People tried very hard, with little success mind you, to keep my expectations in check.  Even Alex said a few times that he thought we would go all the way down there and have to come home with nothing fixed.  I became quickly irritated with these people, not understanding why they just couldn't stay positive and dream along with me that this may provide us with the answers we had been hoping for.  Negative people usually bring me down but I was determined to stay positive.  This was going to work, I thought.

As you know, we came back knowing not much more than we did when we left.  Cale endured a week of doctor appointment after doctor appointment, a trip to the ER and an overnight stay in a crib that looked more like a prison cell than a bed, and countless pokes and prods that I'm pretty sure have instilled a fear for doctors so great that not even a computer or cell phone will be able to distract him.  As he became more aware of our surroundings, he quickly learned the driving route to the hospital and immediately started crying and trembling.  Having to drag him through those hospital doors day after day made me feel like the worst mother in the world, wishing I could just whisk him away to some place where he could just be a happy four-year-old little boy.  I often thought of the day when we could go on an airplane that took us somewhere other than another hospital.  Disney World is going to blow his mind!  Having to explain to over a dozen different doctors what is wrong my with my son very quickly became incredibly emotionally taxing.  I want to go some place where people just look at Cale and tell me everything that is right with him.

I had a moment of clarity as we were riding the elevator to go to another appointment.  Riding with us was a dad and his daughter, probably around the same age as Cale.  She was hooked up to an IV and looked very sick...exactly the way Cale had looked just a few days prior when he had been admitted into the hospital.  I suddenly realized that Alex and I are part of a very elite club, where its members know all too well what the others are going through.  We don't stare at little kids in a wheelchair or at children tethered to IV poles.  We don't make small talk in elevators asking how their day is going because we already know the answer.

 I don't want to be a member of this club.  I don't want hospital visits and doctor appointments to feel normal.  I don't want to have to drag my son into a doctor's office while he's crying and telling me that he's scared, all the while faking my way through the phrase, "it's all going to be okay".  I don't want to have to put on a brave front when in my mind I'm also running for the door at mach speed.  Some day Cale is going to be able to see right through me, and then what?

Now that we've been home for over a week and we've made the changes in his medicine, I continue to find myself hopeful that these changes are going to work.  I know in reality that if the medicine was going to help it would have started working by now, but each morning I wake up thinking maybe today is the day!  Cale has almost seemed worse the past couple of days, thrashing and writhing in pain after he eats, and last night he threw up in his bed after we put him down for the night, but I'm still hopeful.  I'm pretty sure that's the definition of insanity.

At the end of the day, Alex and I can rest in knowing that we as parents have done all that we can to help our little Cale.  I suppose this is all just part of the process of elimination, and someday we will reach the end and have our answers.

Denver: Part Two

I originally had planned to go into detail about all of our various doctor appointments and hospital visits, but then it dawned on me that most of you reading this probably don't care one, tiny ounce about the medical stuff.  So instead, I will start off with our airplane ride down to Denver.

I have a deep phobia for flying.  Just stepping foot into an airport gives me severe anxiety.  I will often look up in the sky at an airplane and think to myself, "those poor souls...they have no idea they are about to die".  I'm fairly certain that any airplane I see, or heaven forbid have to fly in, will without a doubt come crashing to the ground at any given second.  I. Hate. Flying!  Moving along, our flight down to Denver was really nothing too out of the ordinary, except for the million or so bumps we encountered along the way.  Turbulence is something I only overreact to when it occurs during takeoff, and fortunately the only bumps during this flight occurred mid-flight and during our landing, so I was able to hold it together rather well.  I still don't like it, but I can tolerate it...mostly.  Cale, on the other hand, thought turbulence was the greatest thing since sliced bread!  Each and every bump would without a doubt cause fits of giggles and squeals of pure delight!  He quickly endured himself to the flight attendants and those sitting around us.  Alex, however, whom has never gotten motion sick, started to turn green.  I've never actually witnessed someone's face turn green due to nausea, but Alex was definitely a different shade of color than I'm used to.  He had to reach for the little bag a few times but thankfully never needed to use it.  Good times.

From here on out Cale will definitely have the mindset of the more bumps, the better.  And when you ask him what Mommy does on the airplane, he covers his face with his hands.  I didn't think I actually went to that extreme but apparently my instincts take over when I'm paralyzed in fear.

And now for the brief summary of what happened while we were down in Denver.  My initial assumption of our stay there was that Cale would be admitted into a hospital and receive 24/7 observation and care.  It turned out to be just many scheduled doctor appointments which left us with a lot of free time, and that turned out to be absolutely marvelous.  Our first appointment of the week started off with a bang.  During our chat with the GI doctor, Cale started doing his thing and threw up right in front of him.  Perfect!  Someone is finally going to see the reason behind us traveling all this way!  Throwing up is very typical for him but this time he threw up blood.  Not typical.  The GI doctor talked with us a little more and decided to admit him into the ER just to make sure nothing really serious was going on.  That ER visit turned into a overnight stay at Denver Children's Hospital.  They monitored him through the night and we continued with our scheduled appointments the following day.  He was due for an upper endoscopy and a colonoscopy which meant he would be under anesthesia for those procedures.  It's never easy to watch your baby be put to sleep.  After about an hour the doctor came out and showed us the pictures he had taken, which all appeared to be perfectly normal, and then told us we would have to wait through the weekend to receive the results from the biopsies.  Also, they could see no cause for the blood in his vomit.  At this point our hearts are heavy because we hate to hear the word normal.  Cale has got to be the most abnormal normal person I have ever met.  The rest of the week was filled with appointments with an allergist, therapist, and geneticist.  The allergist agreed with us that whatever was going on with Cale was not due to an allergy and so he cancelled the two skin prick tests that were scheduled.  The therapist mainly talked with Alex and me, making sure that we had the resources back home to successfully deal with the emotions that go along with having a child with special needs.  The geneticist appointment resulted in doing more genetic testing and confirming that the two MRI's Cale has had were in fact normal.  No surprise, the radiologists agreed his MRI's were normal.  The genetic tests that were run will take about two months to receive the results.  So...we wait.

So you might be wondering what on earth did we travel all the way to Denver, CO for to learn nothing.  I have very mixed emotions about how our time down there was spent, and I will go into more detail about that in my next and final post, but there are a few things we did learn that were helpful.

1. The pH level in his stomach is very low, meaning he is very acidic.  This shouldn't be the case because he's been on medicine since he was six months old to lower his acidity.  So, the doctor increased the dose of his acid reflux medicine and added a new one to hopefully help with the pain of having acid reflux.
2. The biopsies that they took during his scopes showed that he does not have the diagnosis of eosinophilic esophagitis, which the GI doctor we saw in Seattle had initially given him.  
3. Whatever is causing Cale so much pain and causing him to vomit is not due to an allergy!  A last minute skin prick test, however, showed that Cale is allergic to egg which means that when he does start to eat things again we probably shouldn't start out with scrambled eggs.

So there you have it.  The only changes we made coming home was an increased dose in his medicine and a new medicine to help with acid reflux.

More to come!...

Denver: Part One

The days ticked by S L O W L Y as we anxiously awaited our visit to Denver Children's Hospital / National Jewish Health Center.  It was torture to watch Cale in so much pain and not be able to do anything but wait. 

We were at our wits end in November, in tears almost daily, and the soonest they could schedule Cale wasn't until March.  I think the last four months have been some of the hardest ones we've come up against, even trumping the days after Cale was diagnosed with significant developmental delays, which I account to some of the darkest days of my entire life.  Watching the joy and innocence sucked from our little boy's life was unbearable.  March could not, and did not, come soon enough.  The phrase I caught myself repeating over and over was, "someone IS going to help us or all hell is going to break loose!".   I was determined not to leave that hospital until someone fixed him.  Mama Bear was about to get angry.

As March 9th approached I found myself excited and almost giddy.  My spirits were high and I was beginning to see little glimpses of hope. This is going to work!  


We left on a Wednesday and the previous Sunday the elders at our church offered to pray over Cale and our trip.  We met in our pastor's office before the start of the service and as I entered the room I realized I didn't recognize half of the eight or nine men that were sitting in a circle waiting for us.  We gave a brief summary of Cale's history and the challenges we have come up against, while also explaining the purpose of our trip to Denver and our hopes that went along with it.  Most of the elders had a bible verse or words of encouragement prepared in advance to share with us, and as Alex and I both wept unashamedly, we saw that many of the grown men sitting around us were weeping also.  These were men I had never met and who had never before met Cale, but their genuine care and empathy for our family was so evident that I will forever remember this encounter.  When it came time to pray over Cale our pastor anointed him with oil, and one by one each elder began to pray for Cale's healing.  I've prayed this prayer many, many, many times before and have not gotten an answer, but these individuals were so confident in their approach before the Lord that I left that office almost anticipating Cale running away from me and joyfully yelling, "Come catch me, Mom!", followed by "Can you take me to McDonald's to get a Happy Meal?".  That obviously didn't happen but I know that the Lord heard their prayers and that He was pleased in our coming before Him.  It always amazes me to be reminded of just how many people love and care for our family.  It truly warms my heart. 

On Tuesday, the day before we left, Alex came home and told me that he got a call from someone at our church.  They had decided to give us a check for $1,500 to help pay for the expense of our trip.  Alex told them that our plane tickets only cost $1,100 and that they were going well beyond anything we could have ever expected or hoped for, but they insisted on giving us the full amount to also help pay for food and hotel costs.  Again, we are so loved and so blessed to have such a generous and caring church family!

Wednesday morning finally came and I was so excited to finally be able to say that we were leaving!  I was even so excited that I didn't cry once during our flight, which for those of you who know me well recognize this as monumental!  We were finally on our way to getting the answers we needed and the help we longed for.

Part Two still to come...

The Mile High

Alex, Cale and I are finally home after our week-long stay in Denver!  We spent an entire week going from doctor appointment to doctor appointment, hoping to finally receive some help for whatever seems to be causing Cale so much discomfort, pain, and weight loss.  There is so much to write about and so I think the best way for me to update all of you is to do it in three parts.  So, keep checking back!

Before I go on about Cale, however, I just want to thank everyone who prayed for us and sent encouraging messages.  It was an emotional week and having the support from so many of our friends and family kept us strong, and sane. :)

More to come!

New Life

I've been sitting here for the last thirty minutes enjoying the unexplainable sensation of feeling our baby move inside me.  Even though it is the third time around experiencing this, it never gets any less amazing.  Life truly is one of God's greatest miracles.

As I sit here looking out our window, I see the city of Missoula covered in snow.  I can barely see the surrounding mountains due to the blowing snow and it makes me wonder if Spring will ever come.  The forecast for this week is snow, snow, and more snow.  I've never seen a winter like this since I moved to Missoula.

Alex and I took Cale, yet again, to the doctor this morning.  Yesterday he started spitting up black mucous, which is especially odd considering he only he eats one thing and it's white.  I called his doctor this morning just to make sure it wasn't anything we needed to be worried about, because you all know I would just love to have one more thing to add to the list, and she recommended we come in because she was concerned he might be spitting up blood.  They drew his blood and will call later today if something unusual or alarming shows up.  A part of me is hoping his blood tests will show something so that we can avoid being told "it's just one of those Cale-isms that can't be explained".  I'm emotionally exhausted from never getting any answers to anything.  My poor little guy is suffering and no one can do a darn thing about it.  Why God won't bring his healing hand upon my son is something I don't think I'll ever understand.

One thing I've always held on to since the very day Cale was born is that God was in control.  He loved Cale exponentially more than I did and He would always bring purpose and hope to our lives.  Every detail of Cale's life was planned.  Every doctor visit was known about in advance.  Each medical mystery to us was never a mystery to Him.  But now, for the first time that I can remember, I feel abandoned.  Why allow a child so much suffering?   I'm doubting that God is using this time and this situation for a greater purpose.

Right now I'm watching Cale thrash around in pain.  He just ate and his stomach is visibly upset.  I wish I could just not make him eat but he continues to lose weight and it's beginning to get dangerous for him.  The thrashing used to be something Cale would persevere through but now I'm seeing him give up the fight.  He spends 80% of his day laying down because that's the only position where he can maintain the most control of his body.  I looked through pictures of the kids playing outside this summer and I saw a happy boy, walking barefoot in the grass, showing no signs of whatever is ailing him now.  I never knew to be so grateful for those days.  I never knew I would long for them again so badly.  That happy and active boy in those pictures is someone I barely recognize.

I wish I could be excited for this new baby.  Feeling him move is amazing but I'm so scared for the day when he arrives.  The demands of caring for a newborn and Cale is something I can't even fathom.

Joy.  Peace.  Hope.  Please come back to me soon.

verbs

Scared.  Worried.  Frustrated.  Heart-broken.  Guilty.  Depressed.  Overwhelmed.  Sad.  Angry.  Impatient.  Bitter.  Dissatisfied.  

Thankful.  Hopeful.  

These are words, both good and bad, describing my state of mind as of late.  As you can see, the bad clearly outweigh the good.  Life has been incredibly difficult over the last couple of weeks and I find myself climbing an impossible mountain.  Cale's disability has taken a huge toll on me and my family and it seems as though all joy has been stripped from us, from me.

I find this road of raising a child with special needs to be painfully lonely.  No one can possibly understand the heartache and the difficulty of it all, nor would I expect them to.  I rarely, if it all, let people see my true emotions.  I only write about them here.  I spent the majority of today in tears, wanting nothing more than for something to go right for a change.  Cale's health and mood continue to get worse and I'm exhausted from caring for him.  I love him with all of my heart but breaks are few and far between, which is unfortunately taking a toll on my ability to be the best mom to him.  My patience is thin and I'm constantly angry with myself for not being able to be better for him.  I've been treading water for far too long and I'm drowning.

As Cale gets older I'm realizing more and more how different our life has to be from our friends' lives.  Alex and I are figuring out that he or I can't just have a night out because it leaves the other one with a huge burden of caring for Cale on their own.  Date nights are near impossible to plan, which is especially difficult for me to accept because going out on dates is something I need just about as badly as I need water.  They are vital to my soul and I rarely get them.  I'm also beginning to experience the sad reality that Cale's peers don't ask to play with him.  I watch my friends' kids get invited over for play dates, but I can't remember the last time someone called and wanted Cale to come over.  I thought I wouldn't have to deal with this until he was in grade school but I suppose that was just naive of me.  Cale is different, therefore he will be treated differently...no matter how hard I fight for him.

As I read other people's blogs and get a peek into their lives, I'm reminded of how much I hate that most of what I write about are my struggles.  My nature is to be a happy, optimistic, and full-of-life kind of gal, but sometimes I just need to get out that life sometimes sucks.  The reality for us is that life is hard and we've been given a situation that makes it even harder.  I would certainly appreciate your prayers as we try and navigate this road as best as we can.