Sunday, March 20, 2011

Don't Scream at the Sheep

Week before last when Joshua's pancreatitis symptoms were presenting themselves, I was unsure of why his behavior was so uncontrollable. He was having bouts of screaming coupled with moaning and groaning. Most of the fits were antagonized by the nurse or I trying to do the most harmless acts. Many times not even touching him.

Not sure about where this behavior was stemming from, I sat down and had the "Never cry wolf..." speech with him. I wanted to make sure he wasn't just acting out. Thinking he understood this, I was confident the only screams I'd be hearing were pain derived. So we acted on them, took him in to the ER and thankfully caught his pancreatitis before it go too adanced.

Which brings me to today.

Before I go into the bathroom here in our hospital room to shower, I ask Joshua, "Do you need to go potty?"


"Are you sure?"

"No, I don't need to."

"OK, I'm getting in the shower, don't scream at me telling me you need in."


So, 5 minutes later, guess what I hear? Yep,

"Momma!" Like it's the end of the world.

Same siuation happened the day before only for me to hurry out to find that, "I don't have to go anymore, it went away."

This afternoon, I'm in the bathroom again and can once again hear his screams, which this time are loud enough to bring in his nurse. I'm out, sweeping him in the bathroom as quickly as possible. So, the nurse and I are talking about the series of events listed above and I hear this soft voice coming from behind the bathroom door.

"Mom. Are you talking about, Don't scream at the sheep?"

-----Yep, I can tell he got the gist of my story.

Good to know our children are listening, huh?

Saturday, March 19, 2011

I am So Blessed

It stinks how sometimes it takes a series of tragic events for us to realize just how great we have it. Often times we get upset about the hand we've been dealt. Then tragedy strikes around us and we say to ourselves, "Whew, at least that didn't happen to me."

I've had so many trials to conquer in my life, but in the grand scheme of things they've been minimal. Tiny specks of sand in the endless coastline of sorrow. The crashing waves just barely touching. When there are those whose troubles are like the jagged boulders getting relentlessly beat by the tireless waves.

Ok, enough with the metaphorical mumbo jumbo.

My somber state comes from the bereavement of families around me. In the last few weeks, I personally know two families that have lost children to chronic illnesses and one that has lost their father. Some of this is hitting way too close to home. A little two year old boy very similar to Joshua lost his battle with short bowel syndrome. The longevity of this disorder paid a toll on his little body and it just couldn't hold out anymore. My heart aches for his mom.
I can't imagine.

Maybe it's being naive, maybe it's the ostrich syndrome, but I just don't ever go "there" in my mind. I can't think about how I would feel if the Lord called home our sweet boy.

Any of them for that matter.

But, when you're dealing with a child with a chronic condition, that particular child's state of health is understandibly foremost on your list of parental concerns.

Just think about it.

After days, weeks, months staying in the hospital, how do you pack up your things, including your child's dirty laundry, favorite toys and blanket still holding his scent.

How do you leave your child's lifeless body? The hospital bed? The hospital room?

How do you leave the Children's Hospital without your child?

How do you leave?

How do you go home as a family of 4 when you left as a family of 5?

His bed still unmade and toys left from play.


See, this is why I don't go "there."

Oh, Lord. I know you have your reasons, please help us to understand. Please be with those families having to do just what I've described. Please God, spare us from having to live through such pain.

I wish I had the right words for my friend. I'm sure everything most of us can think to say sounds so cliche. So empty.

"He's in a better place."
"He's not hurting anymore."
"You did everything you could've done for him."

Those are exactly the only kinds of things I could think to say to her.

In a time such as this, all we have is our faith. I did tell her that I believed whole-heartedly that when he was to pass on, no doubt, he would be in Heaven, no longer suffering. She must trust in God.

My faith in the Lord encourages, stabilizes and strengthens. But, that having been said, I know that the only way I could make it through something like what these two moms are dealing with would be to conquer one battle at a time. And fall apart in tears between them.

So much of our complaints in life are about inconveniences, truly. Even with my son's illnesses.

It's inconvenient to have to stop my day and contact the doctor.

It's inconvenient to have to pack our bags and head to the ER.

It's inconvenient to have to wait 5-6 hours in the ER before the doctor finally decides what we're doing.

It's inconvenient that the room we're being admitted into, isn't ready.

It's inconvenient that we can't stay on our favorite floor.

It's inconvenient that we will be in house for over a week.

It's inconvenient that we have to drag a pole around the hospital so my son can ride his tricycle.

It's inconvenient that we were in isolation for two days.

It's inconvenient...

Shame on me. I'm so blessed.
I know two families right now that would LOVE to have these INCONVENIENCES.

I am so blessed.

John 14:14-16
If ye shall ask any thing in my name, I will do it. If ye love me, keep my commandments. And I will pray the Father, and he shall give you another Comforter that he may abide with you for ever.

I have a Comforter.

I am so blessed.

Saturday, March 12, 2011

Pancreatitis, party of one.

This winter has played havoc on the health of my boys, all of them. We've battled RSV, stomach viruses, strep and even allergies. So, last week when Joshua started running a fever and was lethargic with no appetite, I wasn't too surprised. His brothers both suffered from bouts of tummy trouble recently, so I really believed Joshua was coming down with one of the many bugs running amuck. Thursday morning, however brought a whole different twist to things.

Joshua has the tendency to be a little stubborn, it's the character trait that has helped him do so well in his illness. Stubborn didn't quite describe what his nurse and I were dealing with. He was being so difficult. Then the screaming began. Not long after the decision to pack up and head to the hospital came with heaviness. It's always a tough one to make. Every time now I pack a bag knowing very well we could not be returning home for days. So with bags packed, we headed in.

As VIP frequently fliers, we head straight back to the ER exam area. I guess there are some perks to being chronic. Still, the waiting game is exhausting. A blood draw here, abdominal x-ray there. Wait. Wait. Wait. Joshua's feeling much better by 7:00pm when the doctor comes in with that look on his face. "Well, it's Pancreatitis."

Oh, man. Didn't see that coming. My heart sank. I felt so bad for discounting his screams as anything but pain. Holding tears back as best as I could, I begin the formation of our game plan. Now what? He was doing so well. Eating whatever he wanted. No tube feeds. TPN only 3 nights a week.

Now, I have to make this little guy understand why he can't even have water by mouth.

I'm crushed. Devastated. Helpless.

"Mom, I'm hungry."

Ugh! What is a mom's natural response? It's our job to meet those kind of needs of our children and I can't do anything about. Frustration doesn't even begin to describe it. I get so tired of coming so far and gettting so close, just to be thrown back to step one all over again. Why?

I know God has a plan. I don't begin to doubt His order of things. There are big things planned for our little trooper. I ask that He also use me, if only to be a comforter to someone else living this roller coaster lifestyle.

The Lord absolutely has his hands on Joshua though. That's what I have to stop and remind myself. So, pitty party over, be strong and lead on. He's following my lead and I know if he sees me down, it's not going to help him at all. Joshua will get through this, no doubt. He's already handling it much better than last time.

Joshua's lypase levels have dropped from well over 4000 to 660 already. Another 160 or so and we will try some Pedialyte. It's a slow process and obviously some dietary changes are going to be taking place. Trial and Error. Seems to be a reoccurring theme around here.

But, were pressing onward. With the Great Physician on our team, there's no doubt we'll be victorious. We continue to pray and ask that everyone remember us in their own prayers. We need God's healing hands just as much now as ever.