Be Joyful in hope, Patient in affliction, faithful in prayer. Romans 12:12

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Thursday, June 28, 2007

I AM bible study.....Lesson 9

Let me just preface by saying, "Thank you Lisa" for doing this study. I know I'm late coming in but am so thankful to have stumbled across your blog. Was it luck or by chance? Nah...God led me here no doubt. He knows I've been needing this for quite some time now.

I plan to be very honest in this study and my hope is I can gain strength and support. Knowing all this I will say the troubles and trials in our home is great. I struggle with this daily as it never lets up. I liken it to the ocean waves crashing on the shore. They just keep coming.

God promises us in Isaiah 43:2 that "When you go through deep waters and great trouble, I WILL be with you."

I have to stand on this promise and KNOW its true. I have to believe it will all my being. There is no room for doubt. I always picture Peter when he's walking on the water towards Jesus. As Peter looked down and saw the scary waves he began to doubt and what did he do? He started to sink. I can NOT afford to look down at the waves lest I sink and surely drown. I MUST keep my eyes focused on Jesus. It's the only way I've been able to continue putting one foot in front of the other.

1. On a scale of 1 to 10, rate yourself on how often your conversation is seasoned with the works of the Lord on your behalf? If you speak very little of Him, is there a reason you know of? If you speak often, how do people respond?

For me this is a loaded question. On the first part I can say when I journal about my son I openly speak of Jesus and all he has done and continues to do. Through all the struggles I have always given him the praise even when the outcome is not great. I KNOW in my heart there IS good in all of this.

So I guess I'd give myself a 7 however, thats a journal and not "face to face" with people. If its talking directly to people then I fail miserably. Not because I am ashamed to speak of these things but rather I honestly have little contact with anyone other than the nurses and aides that enter our home daily. They are all christians and know just as I do that God is and continues to work miracles in this home over and over again. I do have online friends that are not Christians and I'm very open about my beliefs. I want people to look at me and KNOW that I'm a christian. I want to conduct myself in such a way that it is very obvious. This has always been so important to me. Don't get me wrong, I have to REALLY bite my tongue at times so I don't show myself. I think we all do. :0)

2. Have you experienced a Set Up for a Show Up when you were uncertain whether the situation was the chastisement of the Lord or a temptation of Satan?

Oh YES. This gets so confusing to me which is exactly what Satan wants. There have been times that I just didn't know BUT, even when I wasn't sure I knew I wasn't alone.

3. Have you ever or are you now experiencing any Job trials where you can still not identify any wrong-doing on your part?

This is probably my biggest struggle. I do tend to blame myself and feel guilty thinking IF I could just do this or that maybe things would be different.

I try not to question God but I do struggle with many issues.

WHY does my son have to suffer so? Whats the purpose of it all? Does it have to be every single day? Does he not get a break?

Why did our church abandon us? After attending our church for 10 years I was no longer able to lift my son and his HUGE wheelchair up all the steps to get into the church. We asked for a ramp. I thought it was a law to have access. I guess it is but because of zoning they were not required and did not feel he was worthy of the money it would cost. Our church was very wealthy but very stingy with its funds. We were forced to seek out another church which had access. We went there about 2 years then my son became too ill to attend so for the last 9 years we have been virtually home bound. Vistors are limited because of his immune system. I never dreamed I would be considered a "shut in" at my age. It's a lonely place to be not to mention it feels weird.

Regardless we've been abandoned by the church comunity. I will say that during times of need I have 2 friends whose churches will rally to help but, as far as spiritual support, bible studies, visitations etc, etc.....It's non-existant.

I struggle with the "me pity party" and the "guilt pity party". Often I feel selfish even wanting a vacation or just "time away". Did I know what I was getting myself into when I adopted him? Sort of. What I did not anticipate was how severe things would become and how life threatning each and every thing is.

Is it hard? You better believe it is! It's hard when I watch him struggle for each and every breath. It's hard when he's on deaths door and once again the doctors are saying "this is it". It's hard facing your childs death every single day knowing this could be the day. It's hard fighting with insurance companies for necessary equipment and supplies that they don't deem necessary then to realize you most likely can't provide whats needed. It's a nightmarish rollercoaster that I wouldn't wish anyone to ride. Its gut wrenching at best.

You know what though? This is not about me. In fact, its not even about my son. It's all about trusting God. Trusting that he knows what is best for us both. Trusting him in every single aspect. Trusting that there IS good in all of this.

Remember, there is no room for doubt here. I have to BELIEVE Isaiah 43:2 with all my heart.

4. Apply this principle: How can my response make my God famous? Will obedience result in my sanctification and God's Glory? One thing comes to mind when I read this question.

During one of my sons "near death" hospital stays he was on the vent. We had been there nearly 6 months. He was not expected to live. In fact the first 3 days he teetered so close to death that I could barely catch my breath. My friend was with me and we sat at the foot his little bed in the PICU holding each other and praying. The doctor didn't leave his room for those first 3 days. I recall at some point watching him frantically "work his magic" on the vent. He had a way with all those buttons changing this and that...adjusting here and there. Tweaking to compensate just so so when my son would teeter closer to the edge all in perfect harmony with my son.

I remember him looking up at us with a look I'll never forget. I was horrified. I could "see" without any words what he was saying through his eyes. I immediately jumped up and placed my body over top of my sons and began weeping and crying out to God. "Please father not yet" "Please its too soon" I placed my face against my sons near his ear and began whispering to him. "Please don't leave me Jophie" Not yet baby...Please momma still needs you.

I remember this like it was yesterday. Almost immediately the numbers began to improve. The once dime sized spot which was the ONLY spot left open for him to breath began to open up a little bit larger. Not much but enough to get that air moving once again. There is NO DOUBT in my mind that God intervened that day and the days to follow. In fact he intervened during that whole stay. I continued to give God the glory openly professing that he alone was responsible for my sons life.

Doctors and nurses to this day still scratch their heads in amazement. He truly should not have lived but he did. They know this and I believe many were changed because of it.

My son has had many more near death hospital stays only NOW I think they BELIEVE too. :0)

5. Does the origin of our affliction matter in view of the fame God can gain from it?
No. Not at all. Here again I do struggle with why my son has to suffer so. I find myself at times literally placing my body over his in hopes that I can absorb or take on some of his pain. Sounds crazy I know. I do however know one thing for certain. I WILL NOT waiver. I WILL stand strong on Gods promises and KNOW beyond a shadow of a doubt that there is good in all of this.

Walking in his SONshine

Monday, June 25, 2007

It's all in the numbers........

I'm a prisoner to them you know. They have complete control over me. I am obsessed with them.

Oxygen sats, heart rates, resps, temps, timers and alarms oh my!

There's 20 minute timers heralding the need for another "push" of nourishment sustained only by one small button in one small tummy. Fill R' up please.

Speaking of buttons....
When was the last time we changed that bad boy? One month? Two months?

4 hours......2 hours.....Keep those meds and breathing treatments coming round the clock....Thats 24 hours.

And once again those pesky numbers come into play.

Oxgyen sats that hover near "safe" zones but just as quickly can plummet straight to the depths of "danger danger" threatening ventilator support lest we quickly hoover that evil goober lurking every so silently ready to "plug" the lungs of my unsuspecting son.

Mountains of knowledge are to be found in one little heartbeat. One little heart beat that speaks for a child who can not. Heart beats during wake times that hang in the 60-70 range. Heart beats during sleep times that dip dangerously into the high 30's to 40's. This is all good because it means "all is well"........

Alarms that scream for my attention when "ANY" of the numbers begin to do a dangerous dance.

Its the heart beats rising into the 100's coinciding with Oxygen sats in the 80's and temps that are either too high or more than often too low. Hypothermic to be more specific. High means big bad bug and fighting. Low means big bad bug and not fighting. Septic to be more specific. All of which begin sounding the "mommy alarm".

What could it be? Pain? Nausea? Fever? Illness? All of the above?
Regardless it's not a good combination for this mommy who's a prisoner to the numbers especially when your on round 2 of antibiotics to treat one of the many super bugs that have taken up residence forming strong colonies within the confines of my young sons body. They can never be erradicated only "knocked down" enough so they remain "inactive".

This time the colonies are strong and ready for battle teasing us with walls of steel. Walls that thus far we've only been able to just penetrate but NOT knock down.

Lets do the math. Antibiotics x 2 rounds at 20 days each = 40 days of antibiotics with only a 2 1/2 week break in between.

At the moment I'm being taunted by the sounding alarms and the glaring red glow of low oxygen sats remedied only by CPT(Chest percussion therapy), breathing treatments and a good hoovering that only I can give. Suction so deep it reaches the tips of the toes clearing anything in its path all the while turning the lungs inside out giving them a good shake ridding them of any dust, goobers, plugs and any other offending foreign body causing those diminshed breath sounds and atelectasis to remedy themselves. Now to take those lungs and place them back nicely as I exit leaving a nice clean airway to breath. At least for a few more minutes.

It's after 4 a.m.......The bed is calling my name. I'll count the hours I have to sleep before the next "number" demands my attention all the while sleeping with ears alert to the "heartbeat of hope" and one eye open "watching" the red glowing numbers that continually keep me aware of my sleeping sons status.

Yep......I'm a prisoner to the numbers

Walking in his SONshine

Friday, June 1, 2007

Grillin' and Chillin'

I Heart my grill. I'm a grillin maniac and will grill most anything at anytime and yes, I even grill in the winter. My grill isn't anything fancy but I like to think I've mastered the technique. According to my friends and all their little rugrats, I am the "Grill Queen!" All I need now is an apron telling me so.

Now imagine my excitement as I'm watching the food network and see that next week will be a week "Chalked full of GRILLIN!" Ahhhh! I'm giddy with excitement just thinking about it! Did I mention I also "Heart" the food network?? What better way to spend my week than glued to the tube watchin my favorites. Paula Dean, Emerill, Rachel Ray and Bobby Flay! Bobby Flay is the "grill master" in my book. He taught me everything I know. :0)

At the moment my biggest problem is keeping my grubby paws outta the fridge. All I need to do is make it just a few more minutes and I can hit the sack. I guess the food network was a bad choice to entertain me as I finish up the last of Jophies tube feed and meds.

Ten minutes later and I've nearly made it and the best part....I've only consumed 5 fat free zestas and a little snort of water to boot. Not too shabby since Emerill is just about to push me over the edge with his grillin' skills! Drooooooool!

Finally! Its 5 bells and I'm finished! Time to get some rest for this weary body.

And Trina was nestled all snug in her bed, while visions of "Grilled Meat" danced in her head!


Walking in his SONshine

Feed my Fishies