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?