The Newest Members of our Family

Here they are!!!!

Stash and Chia. Aren't they GORGEOUS???

Jacob is already in love...me too! They are so cute and cuddly...you can just pick them up and snuggle with them! Doug built the rabbit condo...so they have indoor/outdoor accomodations, and they even have a shingled roof! Doug doesn't ever do things half way, I'll tell ya that much!

I have dial-up, so this is taking forever...not that you know that! I'm a little concerned that we're not sure if they are boys or girls...could be one of each....I suppose we'll find out sooner or later!

The Battle of Balance

A good friend loaned me a book to read called “Waiting For A Miracle” by Jan Markell. At first I was like, Oh, here we go, another name-it-and-claim-it I’m healed book. However, when I started to read it, I found the simple yet profound account of a woman, much like myself, struggling with chronic illness, and just trying to pass along some encouragement to others. Her honestly hits so close to home. It is as if she is in my mind…the same struggles, the same questions. But yet in her heart, and in mine, at our most basic level we just want to love the Lord and encourage others.

One of the most difficult concepts in dealing with chronic illness (and just plain old life) is balance. Especially when you never know how you’re going to feel! Do you make commitments?? Do you keep them at any cost? Do you never commit because you don’t know if you’ll be able to fulfill your obligation?

The following are excerpts from her book, a chapter titled “The Dilema of Balance.” Tears welled in my eyes and streamed down my face as I read words that have gone through my own mind a thousand times….

“Being ill is a full-time job without vacation or other fringe benefits. And it’s a balancing act of the greatest magnitude! Balancing activity and anticipation with a daily routine of needed rest and quiet is not an easy assignment….

We wonder if we should keep our dilemma private, or speak too often about it and risk the flight of loved ones. Should we ask for help and risk being a burden, or should we maintain some independence which can bring on isolation or other problems? Should we push ourselves socially in the interest of our mental health, or should we play it safe and virtually vegetate, thus allowing rest therapy a better chance of bringing recovery from our affliction?….

Letting go is one of the most difficult assignments, for it is not just the act of letting go, but embracing the mind-set of acceptance at the same time….

Living among healthy people who have no restrictions offers us overwhelming temptation to depart from a strict recovery program that includes a needed balance. Well people will want us to make commitments, which can be a double-edged sword. With commitment there is anticipation; however, there is also the dread of not being able to follow through with that commitment. Then anticipation turns to stress, stress to anxiety, and anxiety to even poorer health.

Even good stress needs balance. Good stress is an event or opportunity that involves fun, activity, and people we love. It involves fellowship, caring, sharing and love. But it also may involve too many people, too much talking, and too much activity. Then we’re back to square one.”

WOW. Everything I feel summed up in a few pages in a book. If you know someone with chronic illness, I hope you read this carefully….sometimes that person wants nothing more than to go out with you, to hang out, to go to lunch, whatever, but the cost of going is more than our bodies can pay that day. But more than anything, we don’t want to be isolated, so we push ourselves to the brink…and sometimes over it.

For our caregivers…God bless you. No really. God REALLY, REALLY bless your socks off. It is NOT easy taking care of someone who is chronically ill, because if you are the primary caregiver, you are in the balance battle as well.

Only by surrendering 100% of all we are to God can we even hope to begin to figure this out.

Doubting Thomas

Things I learned from Thomas the Train.

1. Pound cake is very, very heavy. Not even dowels and wood planks help. Adding 5 tubes of decorative frosting makes pound cake even heavier.

2. Cake from a box is NOT heavy. (Can you see where I’m going?)

3. My husband is not the most gentle of drivers. Remember the episode of the Brady Bunch when Greg and Marcia were bragging about being a better driver than the other, and they set up the egg on the pylon test in their driveway? The object was to get as close to the pylon, even touching it, without breaking the egg. Let’s just say I’m pretty sure Doug’s egg would have broken.

4. Sometimes things on that are pretty and look almost perfect on the outside are gooey and raw and not done in the middle. In other words, don’t judge a book by its cover. Or in this cake, don’t judge a cake by its frosting!

5. Sometimes really messy, crumbly, unplanned things are much better than other things you spend hours on.

6. Thomas doesn’t like being in a car for an hour on a 95 degree day. Even with air conditioning.

7. Once Thomas leaves the tracks, there’s no saving him.

8. Take pictures of anything you’re proud of before anyone else sees or touches it.

9. Always have a plan B; in this case, Mom’s homemade coconut cream pie.

10. You can think you want something really, really bad, wait a long time for it, and then when you can actually have it, it just doesn’t matter.

Yes, as you may have surmised, Thomas had an accident. We decided it would be cute to make another (regular) cake and put Thomas in the middle of it, and make train tracks on either side of him, so it looked like he was going down the rails. Doug put some dowels in the cake, and a wooden plank-platform thingy under Thomas to support him. Did I tell you pound cake is really heavy??

Well, we made it to M-222 and US 131. Turned left onto the on ramp, and over went Thomas the Train. Because the cake underneath it was so soft and fresh and lovely, it just disintegrated. There was no righting Thomas. By the time we got to my sister’s house in Coopersville, there was almost nothing left of the cake underneath Thomas…it was like it had just disintegrated.

Thomas still looked okay from one side, so we concentrated on that side. Jacob was practically foaming at the mouth. He had been staring at this cake for 3 days now, and had been so very patient. He even managed to eat about 6 almonds before demanding cake.

I cut into Thomas…thinking I was kind of glad he fell over, because if he had still been all pretty I might have had a hard time! The first piece went to my baby boy…who took one bite and promptly said, “No thank you.” Well, at least he’s polite. I tried it…it was really dry. Then, about another inch and a half in, it was nice and moist. THEN, it was like a bundt cake. Remember those? The ring cakes that usually had some kind of ooey, gooey, pudding like filling in them? Um, yah. That was the inside of Thomas. It was literally oozing out. All that work. Gone in an instant.

So, other than the ten lessons above, I learned this one too:

Next year, we’re getting cake from Costco!

Jacob's Birthday Cake

Some of you may have seen this on facebook, but I am just so proud. Last year I made an elephant cake with a tin I had purchased...it was a NIGHTMARE. It looked like Jacob did it, not an adult. It was horrifying....So when I purchased teh 3-D trains pans, I thought, "Have you gone utterly mad, woman??" I didn't answer, so I think that means no...not sure.

Anywho...I was going to get the regular, flat train pan, but I though, no way, how cool would a 3-D one be?? So I get the pans, read the instructions first (SO glad I did)...it said to use pound cake batter. Pound cake? I didn't have pound cake....but for my little birthday boy, Betty Crocker here found a poundcake recipe, and had to make a double batch. EIGHT eggs. Good thing we have chickens!!!

So...I load the batter into a greased AND floured pan (I haven't done that since the invention of PAM, by the way), and put the top pan on and into the oven he goes. Tick tock tick tock. After I took it out and checked it, I saw that it ACTUALLY worked! It looked like a train. By the time I had made the batter, baked it and let it completely cool, we were already talking 6 hours.

Then I decide I want to ice it using little stars in all the colors of Thomas the train...Jacob's addiction of choice right now. Well, that didn't last long with my hands the way they are, so the starts kinda started running together...and then, OR COURSE...we ran out of black. So Doug had to run to the store in the 3rd hour of my decorating marathon and get one more tube of black.

Today we decided we needed a base to go under it, so while Jacob is napping I made a regular 9x13 cake, which we will flip upside down on a cookie sheet, frost and paint railroad tracks on, before loading a doweled Thomas onto it. Doug is going to put dowels or something in the cake so it stands up. It's very heavy.

So here's the Thomas part...it only took 5 hours of actual MAKING it and 4 to cool in between. The things we do for our children. But the look on his face was SO worth it.

Here's another one if I can get it to upload without taking another 20 minutes!!! Oh, how I LOVE dial-up!

Haven't We Been By Here Before??

Yup. You guessed it. Hip pain. Nice.

Called the neuro...he was gone for the day. I've been on 25 mg of Prednisone instead of 30mg for 4 days, and the pain started last night. Worse today. I have to go on alternating 30/25 every other day, and if it gets better we know it's the prednisone. If it keeps getting worse, I don't know what happens. Trying very hard to keep my attitude out of the toilet. It seems like I'm "allocated" a certain number of good days before something gets ripped away. I asked Dr. Teener when I saw him last Friday if I can expect this for the rest of my life, that at any time I could just take a nose dive. He said, "Unfortunately, yes."

I ran across this as I was cleaning out some files....I love it, and certainly need to be reminded of it right now!!!

He sat by a fire of sevenfold heat

As he watched by the precious ore

And closer he bent with a turning gaze

As he heated more and more.

He knew he had ore that could stand the test

And he wanted the finest gold

To mold as a crown for the king to wear

Set with gems with price untold.

So, he laid our gold in the burning fire

Though we fey (faint) would have said, "Nay,"

And he watched as the dross that we said

We had not seen was melted and passed it away.

And the gold grew brighter and yet more bright

But our eyes were filled with tears.

We saw but the fire, not the master's hand

And questioned with anxious fears.

Yet our gold shown out with a richer glow

As it mirrored a form above

That bent o'er the fire, though unseen by us

With a look of ineffable love.

Can we think that it pleases his loving heart

To cause us moments of pain?

No. But he saw through the present cross

The bliss of eternal gain.

So he waited there with a watchful eye

With a love that is strong and sure

And his goal did not suffer a bit more heat

Than was needed to make it pure.

-Unknown

Office Supply Junkie and Dentists

Ya, I know. What can they possibly have in common...nothing really, I just have two things to talk about and I didn't want to do two separate posts! It's all about efficiency people!

So first of all, I have already admitted on facebook that I have some kind of bizarre office supply addiction. A few years ago, friends got me a gift certificate to Office Max. I was the happiest girl on the planet. It's just not normal. I am a teacher by nature, by degree, by expired license, so maybe that plays a part in it...but yikes. Who has an entire FILING CABINET DRAWER full of writing utensils separated and labeled? Stick pens and refills in one pencil case, colored gel pens and colored in pens in another, high-liters, dry erase markers, permanent markers in another, and TWO with click and twist pens. One of them also has colored pencils and regular pencils, but I can't remember right now...it's all labeled, so don't worry. Oh, and I found NINE boxes of 24 count crayons. Who needs NINE??? I also have at least 1/2 a drawer full of packages of loose leaf notebook paper. I have folders and spiral notebooks....Jacob will not need school supplies until college. My sister actually suggested I donate some stuff to local schools...I almost fainted. Would she donate a child?? Do people not understand addiction?!?!?! I did find though, that I am not the only one...maybe we need OSJA? Office Supply Junkie's Anonymous?

Anywho....so yesterday morning I had to go to the dentist. Two crowns. TWO. Ouch. Two hour appointment. I got the temporary crowns right now, and will get one permanent crown now, and the other one after the calendar year begins again so I have insurance again. This drained what was left of our dental insurance, plus we had to pay over $500. To suffer. There is something SO not right about that.

I have TMJ, so keeping my mouth open that long is horrifying (hush you, peanut gallery). Today, my face feels like it's been punched. My jaws are killing me...my gums are all swollen....Three shots of novacaine...and not NEARLY enough nitrous. I kept telling them to turn it up...otherwise I white knuckle it the whole time and end up feeling like I've been in a car wreck. I had head phones on...crankin' up the Third Day...eyes shut...it still doesn't matter. Not enough nitrous and I'm still there being tortured. I think I'd rather be waterboarded.

It's amazing how you adapt to things though....like how do you give nitrous with a trach? You can't put it over my nose, because I can't breathe through my nose....same goes for my mouth. So, you have to put it over my trach...but how do you seal it so the dentist isn't the one getting happy?? We first tried a pediatric nose cone, but I knew as soon as it was on it wasn't sealing... I was like, hey, turn it upside down. I could just feel the way it had to be...and sure enough... worked like a charm. And they said it couldn't be done...where there is a will...there IS a way!

SO...in the horribly likely event (yah) that you have a trach and still need nitrous, ask for an upside-down pediatric nose cone! The things you can learn on the internet, I swear.

Have a good day interpeeps!

Miracle Upon Miracle

I have FINALLY been able to attack my office, and I cannot TELL you how happy that makes me! It is HARD work going through filing cabinets, moving files, shredding, rearranging, we're talking files, reams of paper, books...But I'm doing it....ON MY OWN!!! You name it, I've got it in my office. Several know of my office supply addiction...well, I am BARELY seeing the scope of it going through all my stuff. Let's just say Jacob will probably not have to buy a pen or loose leaf paper until 2026. If we're still on this fetid planet. I mean, how many stick pens can one person use in a lifetime???

Anywho. That's one miracle. That I have been able to finally get to this room! While going through the files, I came across the first sleep study I ever had, in September of 2000, while trying to get diagnosed. To say it was a jaw-dropper is the understatement of the century. I was looking at the report, and I stopped breathing 32 times in 6 hours. That's almost evey 10 minutes. I had 178 episodes of shallow, or insufficient breathing, called hypopneas. That's almost every 2 minutes. The longest amount of time I went without breathing was 29 seconds. I can't even hold my breath for 29 seconds right now! My oxygen saturation went down to TWENTY SEVEN. Yes, that's 27. "Normal" is 98-100. When you're under anesthesia and your oxygen gets into the upper 80's the docs start freaking out. Mine was 27. They checked my ABG (arterial blood gas, which hurts like a bugger; they have to draw blood from an artery, not a vein) and the carbon dioxide in my blood was 68.7. The reference range is 35-45. My oxygen was 54.7; the reference range is 75-100. When Jacob was in the NICU, he was on the vent when his CO2 was 59. Because there was so little oxygen in my blood, my heart had to pump harder and faster to try to keep my brain alive...so my average, resting heartrate was around 130. "Normal" is 60-80. When your heart beats that fast it's called tachycardia, and it can kill you.

I give you all these numbers so you fully understand the dire situation I was in! I shouldn't have been functioning (which I wasn't doing very well at this point) let alone not have brain damage, or even be alive! I had been making these horrible noises in my sleep for almost 3 years, so you KNOW that this didn't happen overnight. I can trace my first MG symptom back to July of 1995. Fourteen years ago. Yet I went undiagnosed and untreated for over 5 years....

You know the rest of the story with the MRI under sedation, the emergency intubation, the staph pneumonia....I'm telling you, friends, that what satan meant for harm God turned into good! He IS the God who parted the Red Sea! He IS the God that stopped the waters of the Jordan river so the Israelites could cross over. He IS the God who raised His one and only Son from the dead....and He IS the God that saved my life. The enemy tried hard to wipe me out, but God would not allow it.

We all have purpose. We are all here for a reason. There are no mistakes. I am so thankful that I am here, typing, reading, that I can see and hear...that I don't have permanent braind damage, not to mention the fact I can walk on my own, drive, speak (even though I have a trach), and have an amazing husband and absolute miracle child. It's just overwhelming.

If God has done something recently in your life, PLEASE share...If it's been a while, PLEASE reflect...everyone has Red Sea moments...you just have to recognize them for what they are.