Joel Update & the Hand of Providence

We all continue to do very well for the moment. Steve has started his new job and is getting into his hands on science unit. Joel has STILL not been hospitalized for anything. That is over 4 full months now. I know that PBD kids can have really good stretches between illness, but it still amazes me considering all our hospital time last spring and this fall.

On Tuesday our family got to meet a very wonderful lady who will be doing out of home respite for us. It went better than expected. This lady has a wonderful home, and is the foster mom to another special needs child who is obviously flourishing under her care. I will not mention names for privacy reasons, but this girl was very excited about Joel coming for visits and I know she will pour some loving down on him. The lady in question was obviously competent and even more familiar with the odd things that can get thrown at you with a kid like Joel than I had expected. (She is a nurse, but even nurses sometimes don't know) I was relieved when she totally understood about treating Joel's fever's right away because if they get to high they take FOREVER to respond to meds, she appears to have some experience with this sort of thing. And she took me at my word when I said that he was usually find after one dose of med, and did not need to be ill to have a fever. And she is practically outfitted like a hospital already, so there might be less packing for me.

On the whole, I was very surprised to find myself feeling comfortable with leaving Joel there for the day, believing that he would be very happy and well loved. And I think I might even become comfortable enough to eventually leave him there overnight. We'll see.

I think Joel's eyes might be getting better. We are currently on some antibiotics to try and clear them up. It's a funny story. I brought him in to the hematologist for blood work and a check up. The hematologist was very concerned about Joel's eyes. So he phoned the eye doctor for me and spoke to him. To make a very long story (trust me) short, I came away with a prescription for some antibiotics. The part that is funny is that the hematologist knows nothing about eyes and didn't even look at Joel's lids. The part that concerned him was the part the eye doctor had said not to worry about! The part that was concerning me was that I had recently seen some redness and swelling under his lids and along the eyelid edges, which is what I think the eye doctor had said was sign of a sty and not "just" a chalazion. That's my take, anyway.

I had been planning to take another photo, of the inner lid/edge of the eye lid to send to my eye doctor. I just hadn't gotten to it yet. These things take a surprising amount of energy and planning. Joel has to be awake and ok with letting me hold his eye lid. I need to have the camera ready. I will need to take about 10 pictures to get all the lighting and etc. right to properly show what I'm talking about. I need to get the time to upload it to the computer, write my message and attach the pic and send it. Does this sound easy or simple to YOU?? (Say NO, make me feel better. ;) )

Unknown to me, though, the same day we were in for our hematology appointment, my eye doctor was getting ready to board a plane for a three week vacation. Which would have made contacting him about Joel's eyes even more difficult and would have meant that after a lengthy process of discovering why he was not responding, and etc, I would have had to deal with an entirely new doctor. Ugh!

And here is where I mention the hand of providence. Because where some people see coincidence, I see the work of God. My hematologist actually caught my eye doctor at the airport!! And fortunately he spoke to him, and then to the eye doctor taking over for him, on my behalf. And we DIDN'T need a separate trip in, confusion with the receptionist, the rigmarole of taking a picture or any lengthy explanations, we just got a prescription. WOW.

Through all of this, I continue to be amazed at how God has taken care of us. Just recently it is with us having a terrific case worker who found us a wonderful out of home respite person. And working out this whole eye doctor thing. But there have been so, so, so many other things. I am amazed and awed many times. Above all, I feel God's love in and through it all. Again, yes, it is terribly hard, seeing my son slowly decline. None of that goes away.

But even in that horrible circumstance, God is showing us His love and care. I see it on an almost daily basis. It blows me away. It reminds me of a verse "If we are faithless, He remains faithful; He cannot deny Himself." Even when I am faithless, God remains faithful, because He is faithfulness PERSONIFIED. He cannot deny who HE IS. And so God's grace, His UNMERITED favor, blows me away.

And it does something else. It helps take away some of my fear about the day when Joel will die. It helps me feel more trust about how we will get through it all. No matter how hard it is, or how our reactions might show faithlessness, I know that God will remain faithful. I can trust Him to get us through this. Not without pain, or suffering. But I can trust His love to keep us whole.

Ode to Valentines Day

Yeah, I know, Valentine's Day is long past. What can I say, I have been a bit lazy about this blog lately... Good thing I don't have an editor breathing down my neck!

Even though the day is past, I really wanted to say something about Valentine's Day. Technically this is not related to Joel. It's related to Steve, instead. Again, good thing I don't have an editor, or a publisher to worry about!

Some people say that Valentine's Day is an overly hyped up, overly priced up, designed to make half the population miserable sort of holiday. Ok, I can't argue too much with some of those. It is crazy the way it's marketed, and it is crazy the way it is priced, and it is unfortunate that so much of the focus of a holiday that once was about loving everyone around you has become a holiday dedicated solely to, well, one kind of love only.

Despite this, I say BRING IT ON! I like Valentine's Day, and yes, I did love it even before I got married. And let me say that before I married Steve at age 34, I somehow managed to be single for EVERY SINGLE Valentine's day prior. Still, I enjoyed it. I made homemade valentines for friends and family, or cookies for students, or whatever. I refused to dwell on the one relationship I didn't have when I had so many other ones to celebrate.

Still, I have to admit that the first few years I was married, I was appalled at how much money it cost my husband to bring me roses, or buy me chocolates. I tried to encourage him to buy the roses and chocolates the day after, when they were on sale. What did I care which day they came on? In fact, I told my husband (truthfully) that I preferred flowers like carnations instead of roses. And hinted that romance could happen every day, instead of just on one special day, that gifts and cards on regular days would be appreciated just as much.

I don't do that any more. Once again, let me say: VALENTINE'S DAY - BRING IT ON!!

Because I realized something about my husband. His romantic abilities go hand in hand with his abilities to sing. By which I mean, his singing is usually off-key, and without finesse but it is done with GUSTO. He couldn't sing his way out of a paper bag, or if his life depended on it or any of those expressions. But he puts his heart into it! Every time I stand beside him in church, I smile. Because there is something touching and beautiful about someone so utterly untalented putting all their efforts into singing their heart out.

And so it is with his romantic sensibilities. There is a level of intuition involved in excelling at "romance" that is not quite there when it comes to my husband. I think there are other women out there who would say this of their husbands as well.

Then again, "romance" is another one of those words. It is either wrongly (and might I add sometimes bitterly) disparaged as some crazy, over-rated way to become disappointed by having expectations of how another person will make you feel that can not possibly be sustained beyond a certain time. Hmm. Again, not all wrong, perhaps, just maybe a bit off on the slant.

The other side is where it is made this great big huge GRAIL of life (of course, think Hollywood). It is the be all and end all of our existence, the hunt for the one person who can make you feel so amazing and wonderful. It's the ONE thing that MATTERS in life, to find your soul-mate and be full of romantic bliss.

I think either direction is bogus. I would define romance simply this way: the art of making another ordinary person on an ordinary day feel cherished, know that your eyes see them as special and extraordinary and wonderful. Note that in this definition, romance can extend to other relationships besides ones with a sexual nature. In fact, there are people with a knack for this that extends beyond people. By which I mean that they can take an ordinary day and see lovely and extraordinary things in it, and make other people feel that way about it too. Most of us do not have this knack so strongly. We just walk outside and say, "Oh, the sun is shining, how nice. Hope I'm not late for work. Maybe we'll BBQ later." People with a real knack for it walk outside and see poetry and beauty and something precious.

Anyway, that is my take on it. And the way we go wrong with romance is that instead of being the person who is MAKING others feel cherished and special and extraordinary, we just selfishly focus on our desire to be the one who is romanced. In other words, romance goes wrong when our biggest desire is to get it, instead of to give it.

So, I have digressed. Back to Valentine's Day and to Steve. I have learned to appreciate some things about my husband. He's not one of those "walk out the door and spout poetry" kinds of people. He doesn't have that "knack." But he has the heart. You know? Some people sing for a living, and other people sing in the shower. Why shouldn't they? Sing in the shower, I mean? Why should singing be only for people who can make money from it? Why shouldn't the tuneless be able to sing their hearts out? I think there is something beautiful in that. And you know what? EVERYONE sounds great in the shower.

That's why I love Valentine's Day. It's the "shower" of romance. It gives my husband a chance to shine. He doesn't have to guess, or intuit, of mull over and decipher what on that particular day, to do to make me feel special. And just like his singing, his approach is "no holds barred." It's go BIG or go home!

This Valentine's Day, I got my husband some chocolates. And he got me: my favorite coffee, 3 kinds of chocolate (he doesn't really understand about diets ;) ), a dozen roses, some hand soap from Bath and Body works, and a Sims game I really wanted. Plus we went out for dinner. And I understood it perfectly. He was saying I'm cherished, he thinks I'm extraordinary and special and wonderful. How could I not get that? He was practically SHOUTING it!

So, I love Valentine's Day. It is one of the days my husband SHINES. And it makes me think, too. Am I practicing the knack for making my husband feel cherished by me, and that I think he is special and wonderful? Have I perhaps been thinking more about what he is doing to romance me, instead of planning ways to romance HIM? Sadly, this is often true of me. Perhaps I need a bit more practice in the art of romance myself...

Out of Home Anxiety

A while back I mentioned that our case worker had offered us some "out of home" respite. I talked about it in a blog called "Resentment."

And while I have been feeling anything but resentful lately, I had seriously considered the offer and decided to take her up on it. I decided to do that, so that Steve and Caeden and I could have a chance to go away if it came up, and especially in the summer so we might go camping.

So we've been working on it. Figuring out the hours and how it might work. I wanted less hours and more flexibility, so that we could just do some day trips if we wanted and take Joel home at night. The very nice lady who we will meet soon, was very flexible and happy to do just 8 or 10 hour shifts, and was fine with the information that we wouldn't likely be giving her many hours.

Now that it comes down to it, though, I am wondering if she'll get ANY hours. I'm a pretty laid back parent, even with my high needs and fragile-health little boy. It's not that I think this lady will make a mistake, or hurt Joel, or neglect him. I'm really sure that he'll be changed and fed and made very comfortable.

But this is a lot harder than I thought. I don't know what Joel will think about being left somewhere, especially overnight. I know she'll be nice and be kind, but will she be able to hold him and cuddle him like I do? Will she have/make time to do this three times a day?

And then there is the thought of him getting sick or dying while he is over there and we are away somewhere. That part is pretty freaky.

Somehow, I feel like I'm letting Joel down. No, really, this time is isn't guilt. I don't feel guilty. I don't know how to explain this feeling, exactly, but it's not guilt. We love Joel. We love to be with him. We feel like there will never be enough time in the world for all the cuddles and kisses and loving and being together that we want. So how can I let any of it go and leave Joel with someone he doesn't know?

Maybe it's almost like I regret doing it already. Yeah, I think I was feeling some regret for something that hasn't even happened yet. And today, after I got off the phone with our case worker, I was almost in tears. I really could have sat down and cried at the thought.

It really doesn't seem worth it at all. I'll lose time with Joel. It will be MORE work to pack up everything and take Joel then just to stay home (a LOT more work). It will be so hard not to worry the whole time. And the truth is, I'll miss Joel.

One reason I'm still going through with it is for Caeden. Because I know how precious and special it would be for him to go camping with us. But I'm not looking forward to doing it. I'm really not. I hope my feelings change between now and then.

Talented

There is often something I wish I were better at. You know... like I wish I were a better housekeeper. And I wish I were better at money matters. I wish I was better at mathematical thinking. I wish I were better at organization and paperwork. I wish I were better at planning events, like fundraisers or parties.

Sometimes I wish I were more of a "doer" sort of person... Hmm. I'm not sure that says it right. What I wish is that I were better with TASKS. Which would maybe mean being more task-orientated. But "task-orientated" leaves a strange and slightly unpleasant taste in my mouth. I've never been that sort of person. I'd like, by some sort of magic, to be able to do all sorts of tasks well, while still being myself. And that means being people orientated.

So sometimes I feel bad about what I accomplish. Because it seems I accomplish so little. Task orientated people have something to SHOW for it. At the end of the day, it's easy to see why they are on the earth and what sort of difference they make.

And sometimes I feel a bit poorly about that. I feel I must be... lazier? Disorganized? Distractable? Unmotivated? Less practical? A bit useless?

There is something I am realizing I truly do have a talent for. Something I have been good at for a long time, but only since Joel has it truly blossomed and fine-tuned. I'm good at crying. Yes. You heard correctly. I am good at crying.

I was raised with the notion that crying was an indication of perhaps some emotional instability. I was raised to feel that crying is often a cover for manipulation. That it was better, a sign of real strength, not to need to cry. No, I'm not British. But something of a stiff upper lip just the same. It's OKAY to cry, per se. As long as you don't sit and do it for too long. Too much crying is wallowing in it. Is a cheap bid for pity. And yeah, is somehow shameful.

I'm not going to blame my wonderful parents for this, really. They were products of their own upbringing. There were good reasons why they had the thoughts and attitudes they had.

But I cry. Yes. Tears have always come easily to me. And I have often (almost always) been ashamed of them, even though I can't seem to stop them.

Well, I realize something. I'm not task-orientated. I'm tear orientated. I think there should be an official title for someone like me. Too bad "town crier" already means something else!! (ha ha ha, little (and very bad) joke) Because if you feel sad, I AM YOUR WOMAN!

You can come to my house and bring all your sadness with you. You don't have to leave it outside the door tied to the rail. You don't have to wipe it on the mat when you come in. You don't have to air out your clothes and chew a breath mint. Sad people are welcome here.

I'm good at feeling sadness. I'm good at sensing pain. I'm comfortable with it. And my tears come too. It surprises me, how quickly and easily it happens these days. Ever since Joel. Even before Joel came a long, yes, I was a crier. Yes, I could feel with you when you were sad. But now, it's ten-fold. It is unexpected, when it happens. But it seems there are few sorrows that do not move me.

I don't have anything to show for it at the end of the day. I haven't really accomplished anything. My house isn't neater. The papers are not filed. No money was raised from the proceeds of the tears.

But you know, I think I am growing to be more and more ok with that. I can't see, at the end of the day, that I got anything done. There is nothing visible to show for it. And still, I feel more and more that it is a talent, or if you like, a gift. For I hope that at the end of the day someone who is sorrowing feels less alone. From their heart to mine. My heart was listening. With all it's might and every tear in it's body. Maybe it's an important function. Here in this world, are there ever enough people who can cry with someone?

Short Jacuzzi Update

Gotta warn you, not looking too good for a jacuzzi tub right now. Found out, not only are there some pipes to run, but also the concrete would have to be broken up and a drain moved a foot or two, as well as a duct that needs to be moved, as in cut up the wall and move it.... sniff...

No really, kind of a bummer. The AquaTech lady will let Children's Wish know about it all, with the estimates.

But I'm not going to get my hopes up. I could just see the dollars signs going up while she looked at what needed to be done. I don't think C.W. is going to be able to cover it. I think we are now talking SERIOUS dough. I mean, come on, break up concrete, move a drain and re pour that section???

It was worth a shot though. Joel would absolutely love it, and I would too...

Under Cover Boss

I just might become the queen of reality TV fans. Yikes. What is happening to me?? I just can't resist finding out all I can about all the different sorts of people on the planet! People fascinate me.

So one of the latest TV "reality" (talk about artistic licence with that term!) shows I have been watching is called "Under Cover Boss." I love this show! Makes me laugh, makes me cry! Hallmark has me under their thumb, I must be their target market!

Anyway, the premise of the show is that a CEO, the "boss" of the company, goes, you guessed it, "undercover" as a new employee in various departments of his/her company. The "boss" finds out what it is really like to work for his/her company and also finds out what his/her employees are REALLY like. There are often shocks and surprises for the boss, and also so many tearjerker moments. No, seriously, I mean it. There are. For some reason the "boss" at least once in every episode seems to meet an employee with a sad story. Is it contrived or real? I don't know. But there you go. That's what I call REAL TV!

Because I LOVE it! Ok, come on, admit it! Who hasn't ever secretly wish EXACTLY THIS thing would happen to you?? You are putting up with some serious garbage in your job, and you just WISH your employer would get a taste of what it is really like. Or you are going above and beyond the call of duty, but you know no one will really notice you for it. You do it because it's right, even though you get nothing out of it. And don't you secretly fantasize that somehow just at that moment your boss would come along and SEE how you are working your butt off with no reward?? Fess up now. You know you have!

And so I love watching these terrific employees who have "no idea" that their boss is the new employee they are training and they are working their butts off. One lady was packaging things SO FAST, she was amazing. The boss, aka the new employee she was training, just couldn't seem to pick up the job, even at the lowest standard. He got FIRED, oops, I mean, LET GO. And the poor lady felt soooo bad, like it was her fault. Little did she know who he really was!

There was a boss who had to SCOOP POOP out of her own resort's pool! Just part of the job. Man, was the guy training her red in the face when he found out who she really was.

There were lots of friendly, hard-working people. Waitresses who could remember tons of orders and do tons of things all at once. People loading trucks with boxes, super fast. Friendly front desk clerks who kept a smile even though they had an injury that caused them pain when they stood for long periods of time.

And then, a "rotten egg" might appear. Someone NOT doing the job they are supposed to do. Caught in the act. Though the boss doesn't let on until later...

Because later on is when the fun REALLY starts! The boss calls the employees into the office for a chat. SURPRISE! And the waitress gets a promotion. And the front desk clerk gets time off with pay for a surgery to repair the injury. There are raises and promotions and improvements in working conditions. Everyone is crying as all the extra hard work they did when they thought no one was watching is rewarded. And of course, I'm crying too. It's beautiful.

The thing is, this reality TV show really does reflect an important reality. All of us really ARE being watch all the time by an "undercover boss." Yup, you guessed it. God. God is the ultimate undercover boss. I don't want anyone to get the wrong idea. I in NO WAY believe that where you go after you die is based on your performance here in life. Yeah, I know, that's really not a very popular way to look at it. But truth isn't a popularity contest for me. I believe what I believe because of the evidence of truth I have seen, not because it sounds good.

I believe that where we go after we die is based solely on whether or not we said yes to Jesus' sacrifice of His life for us or not. It's called forgiveness, and it can't be earned. That's the beauty of it, and also the sticking point, for it hurts the pride to be told we can't earn forgiveness, just repent and accept it.

And though I have accepted a free gift and become adopted into God's family, I am also still in a sense an employee. There are places in the Bible that talk about this. There are "Undercover Boss" stories in the Bible, too.

And when I'm having a bummed out kinda day, it pays to remember this. I don't have a human boss (unless you count Steve!!!) who watches what I do. I don't get a performance review on how I work through grief, or if I give my family my all, or if I remain thankful in adversity. Not here on earth.

But I don't want to be caught slouching, or grumbling or coasting along. My undercover Boss is watching. I want to be one of those people who keep on doing the job they are given with a good attitude and a joyful, thankful spirit. I want to do my best. I want to go the second mile.

Because there will be a day when I am "called into the office" of God. How exciting for me, if I have been a 100% kind of employee. And on that day, the tears of joy can be mine! I want to be the worker who hears "Well done, good and faithful servant!" So when I watch "Undercover Boss" on TV, I remind myself: "Do not be weary while doing good, for in the right season you will reap a harvest if you do not give up." (Gal. 6:9) Yup. For "blessed is that servant whom his master, when he comes, will find so doing." (her job) (Matt 24:45-47)

Update

This is just a quick update.

Joel's eyes have not yet cleared up. I'm not even sure if they have started to clear up. But at least they haven't really gotten worse. They change alot. One part shrinks, another part swells. Parts turn purple or peel. If anything, they do look better, not worse, but it's hard to really think it's gotten a lot better. Sigh. I have gotten used to it now, myself. But it's still not fun taking him somewhere and being asked what is wrong with his eyes.

Steve's wonderful term job that he really loved came to an end just this last Friday. He was bummed out about that, because it was probably the best job he's ever had, and he really felt good about what he could accomplish with his students, because they were all so enthused and cooperative. Now, he is back to subbing. Subbing is... well... the good thing is you don't have to mark or do up lesson plans or unit plans, etc. The bad thing is that sometimes the teacher doesn't do up lesson plans either, and that the students really don't respect you the same way, and there is a LOT LESS job satisfaction. I know. I subbed for a year too. But, he won't have the same long hours, so we will see him more. Money will be tight, unless and until he picks up another contract. Subbing is about half the wages of full time teaching.

Caeden is doing ok. He had a yucky case of croup this week end. The croup has now morphed into a regular run of the mill cough and runny nose and hoarse voice.

We all remain happy and grateful that we STILL have not had to do the hospital thing, not for such a long time.

In one hour the AquaTech lady comes over to see what she can do about jacuzzi tubs. I'm feeling a bit disheartened about it, as it dawned on me that there is a heating vent just about EXACTLY where we would want to put the tub.... :( I'm just not sure what she is going to say about how far we'd have to run the pipes and all of that. But we will see. We will see. I'll let you know about it as soon as I know.

And that is about it over here.