columbus, ohio

I have so much emotion stirring in me right now that I am going to try really hard to stay on point as I write this post but I can't make any promises.  Just thought I'd throw that in while I still can.

I feel as though this coming week has the potential to wrap up our struggles of the past five years into one little pretty box.  I'm reminded of the days when Cale was a baby, maybe four or five months old, and I would literally walk with him upright for two or three solid hours in hopes of keeping his last meal down. I remember feeling so defeated when after those hours of walking he would spit up immediately upon laying him down.  Food has always been Cale's enemy and getting him on the growth charts, and keeping him there, has always been one of our greatest challenges.  The problems Cale faces with food have just gotten worse and worse over time and I finally feel like this trip to Ohio is going to give us the answers we have needed all along.  I want to hope that.  I need to hope that.

But the truth in all of this is that I am absolutely and utterly terrified.  I'm scared for the procedures and tests that Cale will have to endure.  They are going to be painful and extremely uncomfortable and I'm scared to have to look him in the eye while he's miserable and tell him that mommy can't make it better.  I'm scared after all is said and done that we won't have the answers we were so desperately hoping for.  I'm scared of the doctors telling us that there's nothing they can do for him.  I'm scared that the life we've been merely getting through is going to end up being a life sentence.

We leave for Columbus, OH on Sunday at the painful hour of 5:50 am.  Thank goodness we live in small city with a small airport that allows us the luxury of arriving at the airport forty-five minutes prior to our departure time.  Cale will be admitted into the hospital on Monday and from then on it's test after test after test.  We are leaving Riley behind with Grandma and taking Cash since he's basically a lesion of me.  Leaving Riley is no easy task and I'm sick to my stomach about it.  Nothing about this trip is going to be fun. We will fly home on the following Saturday.

I'm scared of the can of worms this trip is going to open.  You see, I haven't allowed myself to cry about Cale in a very long time.  It's been months, before Cash was even born, and to give you perspective of the timeline, I used to cry weekly over him.  Even when Alex pours his emotions on me about our struggles with Cale I refuse to let myself cry.  It's a conscience decision I make and for the life of me I don't know why I do it.  I think maybe it's because tears are tangible evidence of my heartache and sometimes it's just easier to pretend that the hurt isn't there.  I feel guilty for being sad and for wishing that my life was different.  God gave me this life for a good purpose and so who am I to doubt His plan for me.  I want to be strong, for myself and for Cale, but even as I write this I feel the lump in the back of my throat that signals that maybe a good cry will make things a little better.  I just know I am going to be an emotional wreck this entire coming week.

As I was laying in bed awake last night I was trying to count up the number of hospitals and specialists we have taken Cale to since he's been alive.  I honestly can't remember some of them and a lot of them seem to mold into one.  Ohio is by far the furthest we will have traveled to seek help.  My mind keeps wandering to what we will do or where we will go if this trip isn't successful.  I want so badly for this to be the end of the road; for this to be our winning ticket!  I want Cale to live a life free of pain.  I want for him to be able to eat a fruit snack or enjoy a glass of water on a hot summer day.

Here's to hoping that our trip to Ohio will bring us one step closer to making those things a reality for Cale.

mama bear

It has been quite some time since I've mustered enough thoughts to create a post worthy of anything intriguing.  The thing is, if I had written anything I think it would have been paragraph after paragraph of poor me.  Life has seemingly kicked my feet out from under me, stomped on me a few dozen times and then spit on me for good measure.

I've been reflecting on the days when Cale was first born and how we were thrust into this whole new world of challenges and unknowns.  Alex and I were trying to navigate the best we could through circumstances we never in a million years thought we would be faced with.  We somehow managed to deal with one day at a time and in doing so that made it not so scary.  Looking back at our first year with Cale, though, it's one of those times when you think to yourself how in the hell did I ever make it through that?  I now know the answer - God - but it still amazes me at the strength that He was able to instill in me.

I think this past year, or perhaps the past two years, will be a period in our lives when we look back and think the very same things.  How was I ever able to wake up each morning and get through the day? 


Cale's pain and struggles are ongoing.  I recently read an article in a magazine from an author whose daughter has special needs.  The daughter has a list of issues but the mom expressed how the hardest thing for her to deal with was her daughter's feeding and throwing up.  OH!  How I can relate!  I've reached the point where I am no longer hung up on the sadness of Cale not being normal.  In fact, some days I may even say I am at peace with that.  It's Cale's pain, throwing up, and obvious misery that goes along with feeding that makes me want to cry and scream at the top of my lungs.  I want to make him better, I want him to be able to enjoy life the way any five year old should be able to, and I want to see him play happily with his brother and sister.  Unfortunately, all of those wishes are on hold until we can figure out why he's having so much pain and issues with eating, and then the journey of treating or curing the why will begin. It is such a long and daunting road but one that, as a mom, I am ready to take on with all the gusto and feistiness a protective mama can bring.  I've played the role of nice for far too long and I'm ready to bring out my claws.  Enough is enough.

Currently my days are filled with pounds and pounds of stress.  I wake up, stumble my feet towards the coffee maker (or some days I wake up to it sitting on my night stand, thanks to a wonderful and serving husband), make Cale's breakfast, all the while praying that if he throws it up it will be before I get him dressed for school, carry him out to his bus and then say good-bye to him for a relatively stress-free two hours and forty-five minutes.  It is during these hours that I am able to breathe.  After he gets home is when I decide if I want to brave it and take my chances of going out of the house.  You see, for whatever reason, Cale is 95% guaranteed to throw up as soon as you set him in his car seat.  The position of sitting must be unbearable for him because he writhes in pain while he's in that seat and it's usually only relieved until he throws up.  I should really make the back of our car his closet because that's when I need all the extra clothes.  The longer I wait after he eats to get in the car the better our chances of making it anywhere without an incident.  Consequently, we sometimes don't eat lunch until well after 2:00.  Cale never complains about this and so I've gotten over feeling guilty about "starving" my own child.  After lunch we usually try and do something calm.  Cale usually chooses to lay on the ground and play with his iPad or sometimes I'll let him watch a rerun of Curious George or Cat in the Hat.  Most of the time I end up cleaning up at least one episode of him throwing up between lunch and dinner.  It is during dinner that I become the most anxious and stressed.  As the day goes on the worse Cale gets.  He's in obvious pain at the end of day no matter how long it's been since he's eaten.  His body refuses to let him do anything fun and it breaks my heart that he's confined to laying on the floor while his sister is able to happily play within his reach.  Immediately upon him finishing his dinner we get him down from the table and lay out his favorite blanket on our hardwood floor (purposefully avoiding the carpet) and let him play with his iPad until we are all finished eating.  Alex and I nervously keep our eye on him, waiting for the signs that he is about to throw up.  Sometimes we are lucky and are able to get him to the sink in time.  Bed time finally comes and usually if he doesn't throw up within half an hour of getting him in bed we are good for the rest of the night.  Time to turn out the lights and get some rest for tomorrow.

I hate the fact that I have to plan my outings away from the house around Cale's eating schedule.  I hate it even more that even if I plan it perfectly that it's no guarantee that we're going to make it through without him throwing up.  I hate that the embarrassment of Cale throwing up is a factor in accepting an invitation to someone else's house for dinner.  I hate that throwing up is seemingly normal for Cale.  I hate that he's in so much pain and I hate that we can't do anything to fix it.  I hate that I don't have more patience for him and I hate that while he's suffering I'm mulling over the chore of cleaning up vomit for the fourth time that day.  I hate that the aid on Cale's bus sits in front of him with a trash can at Cale's feet just waiting to catch whatever comes up, and you can be certain something will come up during the ten minute ride from school to our house.  I hate Cale's disability and I hate that God is choosing not to heal him.

I'm sure deep down I can find joy in God's plan.  I'm sure deep down I can say that I am thankful for the circumstances He's brought into my life because deep down I know He's making me more like Him.

But I can certainly say that this is a period in my life that I am going to look back and wonder how on earth I was able to get out of bed each day.

milestones

Here are a few (good) things going on with Mr. Cale:

• Three weeks ago he learned (gained the confidence) to go down the stairs all by himself with just the use of a handrail!  This is both good and bad in the sense that he loves his new talent and wants to practice it all day long which provides many opportunities for him to do so unsupervised.  I'm waiting for his first tumble.  
• With a lifejacket and four noodles tucked under his arms he is able to stay afloat in the swimming pool without someone holding on to him.  He is also figuring out that if he kicks his legs he can move to other parts of the pool.
• With nearly 4 1/2 years of speech therapy under his belt he is gaining more and more control over his speech. He can say all of his vowels without a second thought and is trying new sounds every day.  A lot of  his words I can understand if I know the context and if I made a list of the words he can say it may add up to about ten or so.  
• He can finish an entire small cup of ice cream from Dairy Queen!
• He can get on and off a tricycle without any help, although peddling is still a work in progress.
• He is able to show irritability towards his sister, in a way she can understand, when she's wanting him to do something that he doesn't want to do.  I love that he's growing a backbone...this will come in very handy in life.  I'm still looking for mine. 
• He can identify most letters and can even produce a few of the correct sounds.  I'm pretty sure he'd be able to say them all if his mouth would just work right! :)
• He is in the beginning stages of potty-training.  We have had a handful of successes...wahoo!!!
• He wants nothing more than to be Buzz Lightyear from "Toy Story".
• He can play at a park like a semi-normal kid because he can go up stairs all on his own and finally feels confident enough to just go for it, even if it is a little scary!

There are probably many more significant things he's doing these days but those are just a few I can jot down in words.  He is improving and progressing daily and it's during the hard times that I wish could remind myself of that more often.  

Here's what Riley is up to:

• She took swim lessons with Alex at the start of the summer and can now swim around the pool all by herself with a lifejacket on.  She hops in and out without using the stairs and even dares to jump off the diving board.  I am cautious of everything, she is cautious of nothing!
• Riley sits in on Cale's speech therapy and so she's also able to identify most letters and say a few of their correct sounds.  
• She is able to count objects, as long as there isn't any more than ten. :)
• She is starting to "pretend play" and it's absolutely hilarious to listen in on the scenarios she thinks up.
• She is on her way to being potty-trained during nap time and bed time.  She's completely potty-trained during the day.
• She loves the movie "Cars" and would be content to watch it every day for the rest of her life. 
• She can swing in a big girl swing which terrifies the heck out of me.
• She can color mostly in the lines. :)
• She hates that she can't go to school like her big brother.

All in all, Riley is growing up way too fast.  Her mannerisms and choice of words all point to a young girl instead of my little toddler.  

And finally, Cash:

• At two months old he weighs 13 lbs which puts him in the 75th percentile.  His height also hits the 75th percentile at 23 3/4 inches.  
• He poops ALL DAY LONG.  I'm very serious when I say I don't think I've ever changed just a wet diaper and I think we go through about twelve diapers a day.  
• He is starting to go longer stretches between feedings, so now I can go about three hours without feeling like all I am to him is a cow.
• He is sleeping okay at night.  His longest stretch of sleep has been five hours but that has only happened once.  It's usually two or three hours before he starts yelling at me to change his diaper and feed him.
• He is smiling more and more and within the last few weeks has really started using his voice.  I love those little coos.
• He is able to control his head very well and I can contribute this to the fact that he is the first child of ours to not loathe tummy time.  He is content to be on his belly for five or ten minutes before he realizes that his face is beginning to smash into the carpet. :)
• He has an uncanny ability to know when he's not being held, therefore I spend the majority of my day with a baby in my arms.  Note: I secretly enjoy this because, God-willing, he is our last baby and I want to soak up and enjoy every minute I have with this little guy.
• He tracks me from across the room and is soothed by the sound of my voice.

He is definitely an easy baby, or perhaps it just seems that way because he's the third baby and we've relaxed quite a bit.  For the most part he's pretty chill and I could not be more thankful that God outnumbered Alex and me with a third child. :)

normal mom things

Being Cale's mom sometimes feels like the loneliest place in the world.

No, it is the loneliest place in the world.  Or at least in my world.

I want to be a normal mom.

With summer winding down and school back in session, moms are excitedly dropping their kid off for their first day of school and having to hide back the tears when their child doesn't want them to kiss them good-bye or drop them off too close to the front of the school.  Moms are fighting to sign up their kids for soccer, gymnastics, dance, and t-ball.  Their schedules are crazy and their calendars are all marked up with different activities with lists of whose responsible for taking who where.

Today was Cale's first day of school and we have spent several weeks preparing him for this day.  The mere mention of the word has brought on a bucket of tears and hours wasted with anxiety.  It's very difficult for Cale to forget anything and we're learning that it's becoming more and more of a struggle to redirect his thoughts and attention, therefore an entire day can be spent assuring him that his first day of school is going to be okay.  Last night we had our first big success of talking about school without encountering a major meltdown.  I pretended to be his teacher and went over what I thought she might ask him when she saw him for the first time.  He seemed to like that and we saw our first glimpse of excitement in him.  He actually went to bed without crying about today's looming events.  Success!

We woke up this morning and only had a few bouts of whining.  He ate breakfast, got dressed, brushed his teeth and we were all ready in perfect time to take a few 'first day of school' pictures.  I was relieved to see that he was in a good enough mood to smile for the camera.  In fact he even seemed excited which filled my heart with unexpected joy.  After pictures we hopped in the car and the drive to school was relatively calm.  We went over what he was going to tell his teacher if she asked him what he did this summer and that seemed to lighten the mood.  Once we pulled up in front of school I could tell he was becoming more and more anxious, and sure enough it was a tiny bit of a struggle to get him to walk into his classroom.  He clung to Riley and shed a few tears when it was time to say good-bye but as soon as we turned the corner the cries muffled out so I'm assuming he calmed down rather quickly.  We survived the first day of school drop-off.

Needless to say, I wasn't crying over how independent and grown up my little boy was becoming.  I walked away wishing that for special days like these I could be a normal mom.

With summer winding down, our schedule is changing and a new routine is about to begin.  My calendar is full and life is about to get crazy.  However, instead of fighting to get Cale signed up for t-ball or soccer, I am fighting to schedule his many therapies so that we can get through the week with a tiny bit of free time.  My calendar is full of doctor appointments, case worker meetings, and conferences on how to maximize Cale's potential.  I wish so badly that I was a normal mom that could sign my son up for normal things.

With Cale getting older and his peers growing right along with him, I feel that we are on the journey to getting left behind.  It seems as though my girl friends get together because their kids enjoy playing together...they ask to play together...and no one ever asks to play with Cale.  I feel as though I am getting left behind which is both incredibly hard for me to admit and incredibly difficult for me to accept.  I always thought Cale's differences would affect him in this way, never me.  I just want to be a normal mom.

The crappy thing about all of this is knowing that Cale probably wishes he were normal a million times more than I wish I were a normal mom.  My heart just aches for him, for us.

third time's a charm

Okay, I apologize that it's taken me five weeks to update the ol' blog.  Let it be known, however, that I have thought about posting many, many times.  I've even sat down and started to write at least a dozen different instances.  The hangup inevitably occurs when I decide to lay Cash down. <gasp!>  Yes, this baby hates to leave my arms and I must admit, I'm kind of smitten with him and so I generally try not to complain too much about his incessant need to be held.  He's content in his swing, for the time being, and so I'll try and knock out a quick update our new life as a family of five.

I think the best way to sum it up can be found in my response when a friend asked me how it was going with three kids.  My answer: I love it.

I'm not sure I was able to convey my anxiety and trepidation over his arrival very well in writing.  Before Cash was born I was scared beyond belief of what adding another child would do to our family, and more selfishly of what it would do to me.  Raising two kids is a challenge for me, especially when one of those kids requires special care that I feel like I am the only one capable of giving.  I'm terrible at asking for help and so when life gets hard I feel like I'm getting sucked under water and dragged out to sea by the undertow.  How on earth was I going to manage a newborn?

When I was in labor and my doctor told me I was at nine centimeters and almost ready to push, amidst the pain and exhaustion of labor, I remember thinking that my life was about to change; a new life was minutes away from turning my whole world upside down.  I was scared.  I was asking myself why I ever thought another child seemed like a good idea.  I was looking at Alex and thinking, "You did this to me!".  But then he was born.  And then he cried.  And after he was laid on my chest and I caught my very first glimpse at him, I was in love.  He was perfect.

Adjusting to three kids has been nothing short of amazing.  Sure, life is a bit more crazy and it takes me half the day to get ready to go anywhere, but being a mom of three could quite possibly be one of the greatest things to ever happen to me.

I get asked all the time how it's going with three kids and the person asking me usually has this grimace on their face as they wait for my reply, as if I'm going to breakdown in a heap of tears and they're going to have to comfort me after I tell them how awful and exhausting it is, but then I love the look of shock on their faces after I tell them how much I love it and how wonderful it is.

I have to admit, though, I'm just as shocked as they are.  After we brought Cale home from the hospital I was completely overwhelmed and paranoid about every. aspect. of parenting..  After we brought Riley home I was a total mess and couldn't stop crying for days.  This time around, though, I'm genuinely happy and so very grateful.

I guess third time's a charm.

back to basics

I spent the horribly long winter months wishing them away.  I longed for Summer and for the freedom of being able to play outdoors.  I was sick and tired of wasting thirty minutes of my day making sure coats were zipped, hats were on, gloves were secured, and boots were tied.  Winter in Missoula was six long months of constant overcast and record snowfall.  Thankfully Summer finally arrived, the snow melted away and the sun started to shine.  Along with Summer,  however, came the rude reminder of why disabilities suck.

I've refused to acknowledge my feelings of bitterness and sadness towards Cale's disability for the last year or so.  It does me no good to dwell on it because the truth of the matter is that it is what it is and there is not one thing I can do to change it.  I would become a miserable person if I spent each and every one of my days being sad or angry over the life I have been dealt as Cale's mom.

This morning, however, I was pushed to my breaking point.

A group of ladies, who also happen to be some of my closest and dearest girlfriends, have been meeting on Thursday mornings for the past few years as part of a bible study through our church.  Cale's speech therapy has always been during the times they meet and so I have never been able to attend.  This year, even though the official bible study broke for the summer, a certain group decided to meet privately at a house to keep the fellowship and spiritual growth moving.  Knowing that I've never been able to come, they worked hard to change the time to accommodate me.  Today was my first day.

To give you a peek into my thoughts going into something like this I think some background is appropriate.  I become very anxious doing things like this for myself when I know I'll have to bring my kids along.  On one side of the coin I see the need and importance of being around other Christian women who are in a similar stage of life as myself.  I think fellowship is critical and having friends around to encourage and guide me is priceless.  On the flip side, however, I am faced with the guilt of leaving my kids, Cale in particular, with a babysitter.  I play mind games with myself that always give me an excuse of why I shouldn't go, such as "The person watching all the kids doesn't know Cale and since he can't keep up with all the other kids he is eventually going to latch onto the babysitter, she won't know what to do with him so I'll end up keeping him with me and then I won't be able to focus on the bible study so I probably shouldn't even go."  I give myself every reason in the book to stay at home.  Home is comfortable.  Home is familiar.  Home is where Cale feels most secure and safe.  Home is where Cale is understood.  Outside, in the real world, is unknown.  Very few people understand Cale and trying to get his wants and needs across to others must be a never-ending frustrating and overwhelming road for him, not to mention for me as well.

We got to my friend's house and I immediately felt uneasy and anxious.  I saw all of the other kids running around and playing, being typical kids.  And then I saw the giant water slide.  Cale is very familiar with this giant water slide.  In fact it's one of his very favorite things to do during the summer.  It's a big inflatable toy that has two adjoining slides that splash into one big pool of water.  Cale loves it.  The only problem is that he requires constant assistance in order for him to enjoy it.  He needs help climbing up the "rock wall" and then someone to encourage him to scoot to the edge of the slide so that he can gain enough momentum to go down by himself.  Oh, and then he needs someone to make sure he can sit up once he reaches the bottom so that he doesn't drown.  Constant assistance.  I see at least fifteen kids running around my friend's backyard and two babysitters.  One babysitter is holding a baby which leaves one free babysitter.  She is busy herding the other fourteen kids.  The odds are not looking good for my Cale.  There is no way he can play on this favorite toy if I leave him and go sit with the other moms to discuss our book study.  I try and take a deep breath and convince myself to just treat him like a normal kid and put him in his swimsuit.  Thankfully another mom sees me struggling and offers to help sunscreen and change Riley.  Little did she know that she also distracted me enough to keep me from bursting into tears.  Cale is finally dressed and lubed so I walk him over to play in the water.

I take my seat amongst the other moms which is only about fifty yards away from where the kids are playing.  I try to engage in the conversation but my mind and eyes are fixated on Cale.  Is he okay?  Is anybody playing with him?  Should I be over there helping him?  I feel so guilty.  The moms are going around introducing themselves and sharing a high and low point of their week.  It's my turn and without hesitation I admit that my low point for this week is this very moment: watching my son unable to do something that he loves.  I admit that I feel guilty for leaving him because in reality I am literally the only person there that knows how to help him and communicate with him.  I see him sitting at the bottom of the slides, looking up at the kids who are running circles around him and splashing water in his face as they take their turn down the slide.  I want to cry and I want to leave.  There is no way I am going to be able to participate in the conversation or get anything out of sitting with these other moms while I watch my son struggle like this.

I eventually get up and walk over to help Cale.  I spend the rest of the time playing with him and helping him to have fun.  I'm realizing that perhaps doing things like this is just not possible for me right now.  I'm not like all of the other moms and not both of my kids are like all of the other kids.  Cale needs me in ways that other kids don't need their moms.

Disabilities suck, especially during the summer.  Activities like going to the park, taking a late-night trip to get ice cream, eating a popsicle on a hot day, or running through a sprinkler are not things that Cale can easily participate in.  Cale's never even been able to enjoy a popsicle.

Disabilities just suck.

be careful what you ask for

Let me begin by saying that I am entirely grateful for reaching the 38 week mark in this pregnancy.  I begged and pleaded with God for nearly nine months asking for this very moment to become a reality for me and He was faithful in answering my many, countless prayers.  With that said, however, I am so ready for this to be over.  During these last several months I have created a mountain of anxiety over worrying about what my life as a mother of three will be like and I'm finally ready to begin this climb.  Sink or swim has been my personal motto the past few days and I just want to know which one it's going to be.  I hope I have my flippers and life vest with me.

Aside from swollen ankles and a worn path in our carpet leading from the bed to the bathroom, I truly have very little to complain about.  I seem to have more energy than usual, which is good considering my kids are on over-drive now that the summer weather finally decided to show up.  I have been cleaning like crazy and keeping up with the laundry, all the while making time to either take the kids to a park or a pool to burn off their extra energy.  I have been trying to go on long walks or hike the M to get this whole process started but so far the only results I've gotten are a sore butt and puffy feet.  As of my check-up with the doctor last week I am a few centimeters dilated and about 80% effaced, however I was that way with Riley for nearly three weeks before he finally decided to induce me.  Not favorable news in my eyes.  He keeps telling me I won't make it until my due date but I have a feeling God took my prayer of "Please keep me pregnant for 42 weeks and I promise I won't complain" to heart and He's up there looking down on me and saying "be careful what you ask for, Kid.".  


I promise not to complain, I promise not to complain, I promise not to complain...