Blanket Update

So a couple of weeks ago, I posted the deal about creating Mom Cave Designs, and I figured that it was time to give a semi-official update on what's been going on with that.

It's been interesting, to say the least. People have shown a tremendous amount of interest, and I can see that there is definitely a market out there for weighted blankets (among other things). I honestly  had no idea how fast something like this could grow. Since I got started, I think I've completed 3 blankets to order, I have one blanket that is being made, and I have orders for 5 more (that's off the top of my head, but the numbers are pretty close). It might not seem like a ton, but it's been keeping me busy. I got a little bit of a break last week while I waited for supplies to arrive after I ordered them, but that gave me a chance to get some stuff done around the house.

The most surprising thing that has happened though.....I have had several people contact me to basically say "your prices are too low" or "you aren't charging enough for your work" or "you're never going to make any money like this". You get the idea.

It dawned on me that a lot of people who are following me on the Mom Cave Designs page don't necessarily know me as Non-Stop Mom. They don't all know who I am or any of my story, and that helps to explain the low pricing.

I'm NOT in this to get rich. I'm just not. I don't need the money. When my second ex-husband unexpectedly passed away, Daniel and I started receiving Social Security benefits. Those benefits caused a lot of drama for a while because of the people who felt that I didn't deserve them, but that's another story altogether. The reality of the situation is that we receive enough money on a monthly basis to pay all of our bills and have a little bit left over. We are not rich. We don't have much in savings (that happens when you buy an older house) but we survive and we manage to do a little extra here and there. So "getting rich" off of these blankets is not really a priority. Will a little bit of extra money here and there help us? Of course it will. Is it the driving force behind doing this? Not even close.

What we want to do is make them affordable. The blankets do absolutely no good to anyone if they are so outrageously priced that people can't afford to buy them. We want to help people get the blankets that they need without having to sacrifice something else that is equally as important to be able to afford them.

I don't see it as doing anything amazing or spectacular and I certainly don't expect any kind of recognition for it. I just want to be able to sew and create things and help people, and if I make a little bit of extra money, great. It'll be even better when we get to the point that we can start making blankets to donate to those who need them, but that will take a little bit of time yet.

At the same time though, I am a mother first. I have 5 extremely active and involved kids. They are in sports and extracurricular activities and Scouts and church and everything else under the sun. I'm a single mom, and even though The Dude helps me out when he can, he's not here all of the time and so the housework and the grocery shopping and the yardwork and the kid chauffeuring and everything else falls back on me 99% of the time. The Mom Stuff has to take priority, especially when the kids are at home - so when they're here I run around and do what needs to be done around the house, but as soon as they're in bed or at school I head down to the Mom Cave and get busy. Right now I have a fairly quick turnaround on the blankets but as time goes on and I get busier with that, it will probably slow down a bit - but I don't plan to raise my prices any time soon.

Alrighty then....

I'm also looking into the things that I need to do to actually eventually turn this into a legitimate business if it looks like that would be a good thing to do. Right now, it's still in the little more than a hobby but not quite a business stage. I don't want to jump the gun and do all sorts of crazy official stuff until I know exactly which direction we're going and where we might land with all of this stuff.

For now, I'm learning as I go. I know that I can make the blankets and I'm enjoying doing it. I welcome any input or suggestions or critiques that anyone wants to give. I've had people ask if it's ok to share the page or share the blog - please do, because otherwise we won't be able to do this. (For the record, I've thought about starting a secondary blog just for the business stuff, but honestly..... it's so intertwined with me and who I am that it would be hard to separate it...... so it'll all just be contained right here in this nifty little package.)

There are other things rattling around in my skull but for now I just wanted to explain the lower prices a little more in detail for those who don't know the whole story. And just in case you haven't been around here for a while - if you have any questions, just ask me. Seriously.

Vehicles and Beds...

This is just going to be a quickie to answer some specific questions that have been posed several times over the past few weeks. I figured it was easier to just do it here....

The girls' beds....this is basically what they turned out looking like.

The first one is Emily's. She wanted hers to be lower than Sarah did, so this is what she and I designed. It's all just 3/4" plywood and there's a piece on the back (against the wall) to keep anything that is shoved into the cubbies from going out the other side - and to make the whole thing sturdier.

We are going to do the zebra duct tape on all of the edges - it's easier than sanding them all down and it looks cool. I think she's eventually going to paint the inside of the cubbies too, but that's up to her to decide.

Sarah wanted taller, so she designed hers to be taller - although it would drive me insane. I did put a second piece of plywood across the top of hers to further reinforce it to support the weight of her and her mattress. So far she has opted not to paint hers - we'll see if she changes her mind or not.

Both of the beds just take a standard twin-sized mattress. They are heavy and they are not going anywhere. Literally. They won't fit through the doors of the rooms.

Now on to the bigger question.....

The vehicle.

I still don't know what to call it. It's not really a van, or a car, or an SUV. I think technically it's a crossover, whatever that means.

Anyway......

My minivan died a few months ago, shortly after I paid it off. So I had to get something different.  But, I was in the middle of financing the house, so I couldn't run out and finance something else and risk screwing up my credit, right?

Enter the GrandpaCar - the Grand Marquis - I bought it from a friend's grandfather because I needed something that the kids and I could all fit into, but not have to be financed. It worked for us, but it was very crowded and uncomfortable.

I kept putting money aside into what I was calling the "house/van" fund - money to be used for both. I also got a very sizable tax refund which went straight into that fund. Once the house was settled and we closed and we had gotten done with the initial "big" expenses, I did some figuring and decided that I could start looking for another minivan. So I called a couple of the local dealerships and basically said "I need something used, inexpensive, mechanically sound, and can seat 7 - find it for me" and turned them loose.

One of them called me back the next day and said "I know you said minivan, but what about a Traverse? It seats 8....." The Dude and I went and looked at it with no intentions of buying it at all - I really just wanted to see how something that was NOT a minivan could seat 8 people. Long story short, I liked it. We went back home and I researched it and liked what I could find on the safety stuff and whatnot, and the price that they had on it was a couple of thousand below the blue book value. So we started talking money and I said that I was thinking about just scrapping my dead van - instead the dealership sent a couple of guys out to the house to look at it and they ended up offering me an insane (to me) amount of money in trade.

Between what they were asking for the Traverse, what I could afford to put down, and what they gave me for the dead van, I was able to get the payments under where I wanted them to be AND get a really good warranty on it. At that point, I would be stupid to not get it.....so I got it. I kept the GrandpaCar  for a bunch of reasons, not the least of which is that I have a kid who will be driving in a few months - and whether she likes it or not, she can drive that. And since The Dude's truck is iffy at times, he can drive it when he needs to go out of town or whatever.

Any other questions? :)

Thoughts & stuff

September 1. We've lived in this little ghetto-esque house for exactly 3 years now.

It's been 3 years since I felt like I lost everything, but it's also been 3 years since I started my life over again.

Life is better in so many ways. I'm financially secure - not rich, but secure. My kids are doing great in school and are healthy for the most part. I have a wonderful man in my life who loves me and loves my kids as if they were his own.

But no matter how good life is at the moment, I know that it can change in a heartbeat.

Things have changed so much for us in the past 3 years, and to sit here and think about it can absolutely blow my mind. I don't ever want to forget about the struggles that we went through, because those struggles made me and my family who we are today. We are better people for what we experienced.

I continue to carry my Vision card (EBT, food stamps, whatever you want to call it) in my wallet. It's right there, under my checkcard where I see it every time I open my wallet. It hasn't been valid for a couple of years now, but I won't get rid of it. It reminds me of where we were not so long ago, and seeing it there reminds me of where we want to go. It keeps me grounded.

With the amount of progress that we've made in the last 3 years - I can't wait to see where we are 3 years from now. I know where I want to be - and now I just have to make it happen.

My new table...and a realization.

So if you happen to follow my shenanigans on my facebook page, you might have seen the really cool table that I found today. I know that it's not a priceless relic or anything like that, but I'm just absolutely in love with it. I had to wander around the house for a while this evening, trying to figure out exactly where to put it, because there just isn't much space in here for anything else.

I finally found the spot - right next to the rocking chair that still had the boys' stuff on it from last school year. But of course, because I'm me - in order to put the table beside the chair, I had to get rid of all of the crap on the chair. And that meant that I had to sort it all out and put it where it belonged. But that of course meant that I had to pull the chair out and sweep the floor underneath it, which led to moving all of the living room furniture to do the rest of the floor, which led to cleaning under the couch cushions - and so on, and so on.....

But, the table has found a home.

(*Mental note: buy more duct tape to fix the footstool again.)(Don't judge - it was Gramma's footstool.)

But honestly, what I think is really cool - and some people might disagree - is that for once, I saw something that I liked and I got it. Not because I needed it or because it was on sale or because I had been saving up like Scrooge for it - but just because I saw it and I liked it. There was a time not so long ago that doing something like this would have not only been impossible, but would have caused us to not have food on the table for a few days (or more).

It's been 3 years since I lost what seemed like everything. I lost my house, my van, my marriage..... I almost lost my kids because of my financial situation at the time. Things have turned around for me in so many ways. Having a little bit of extra money to spend every now and then is still a novelty - but it's also something that I know I have to watch if we're ever going to be able to get a house of our own.

Knowing that my financial stability started as a result of receiving the Social Security after my ex passed away still causes some guilt. I know, I know - I shouldn't feel guilty. But I do. And knowing that Daniel and I are getting a pretty significant increase in that Social Security as of tomorrow causes even more guilt. But like I've said before, it is what it is, period. And now that I have a "real job" - the finances are finally looking better.

We still aren't rich. We still aren't taking any road trips in the near future (especially with the van still acting really wonky) or going on any exotic vacations. But, I'm saving for a house (and a newer van), and every now and then, I can buy something that I want.

It's a pretty cool feeling.

I said yes.

No, it wasn't that question.

A few months ago, I started working a part-time job. It started out as just a few hours per week, and was going to just be something to do for fun (and a little bit of spending money) while the kids were in school. As time went on, and I started getting the hang of things, my boss asked me if I could work a few more hours. I went from about 9 hours per week to about 20-24 on average. She also asked me to help train a few people here and there, but nothing major. I didn't really think too much about it.

Then I was surprised a couple of days ago when I was handed my little "award" but still...didn't think much of it. I had made it pretty clear when I started that I wasn't interested in anything more than a few hours per week.

On Wednesday, I actually got sent home a few hours early, which was fine with me. I was tired and cranky, and I had to go to Jared's friend's viewing that afternoon and I needed time to mentally prepare myself for that. When I got home from work, The Dude was hanging out with Alex and Daniel so I decided to try to lay down for a little bit. Unfortunately, a real nap didn't happen because I got a couple of phone calls - and the second one was my boss asking me if I could come back into the store because HER boss needed to talk to me. So I changed my clothes and went back to the store.

I sat down in a booth with the boss and the boss's boss, who proceeded to tell me that he had been "watching" me - I was so tempted to call him a creeper, but I figured that I'd better keep my mouth shut at that point and listen to what he had to say. Long story short, I was offered a full-time position as an assistant manager.

We talked about all of the details, and honestly, it sounded really good but I knew that there was no way that I could make a decision right then and there. I had to check into a lot of things before I could make a decision on something that huge. They understood, but said that they needed an answer by Saturday (tomorrow).

I had to check with The Dude, because working 45 hours per week is a huge jump for me - and it means that he will be taking on more responsibility with the kids. His response? "I've got your back, babe."

I had to check with Ex1, because I had to make sure that he was comfortable with The Dude taking a much bigger, much more active role in the kids' lives - he'll have to transport them to school a few days per week, among other things. His response? "Sounds like a good opportunity. I'm flexible. We'll work it out."

I had to check with Social Security because there is a limit on how much I can earn before those benefits start being reduced. Lots of technicalities about that one, but all in all it's not a big deal and I can handle that.

I had to check with the state because the kids have medical cards and I had to make sure that there wouldn't be a lapse in their medical coverage between the time when my income was too high to qualify for the medical cards and the time when my insurance through work would start. A few more technicalities there, but there won't be a lapse in coverage.

There were a lot of texts flying back and forth between me and my boss, as I asked more questions and got more clarification on a few things. She was very patient with me and answered everything that I needed, which made me feel a lot better about the whole thing.

And of course, I had to sit and think really really hard about all of this. I've been a stay-at-home-mom for so long, and I had planned to do that for a while yet, but this is a really good opportunity, and the timing is phenomenal. As I get ready to buy a house, having such a huge jump in my income will make qualifying for a mortgage even easier, and it will also allow us to take care of a few more bills and a few more necessities at the same time.

And I will have health insurance for the first time in ....... 4 years? Not that I ever go to the doctor, but at least if I have to, I'll finally have that option again...(but not for 90 days).

So with all of this going through my mind over the past few days, plus helping The Dude and his mother move into an apartment, plus just dealing with my day-to-day life, I got a little overwhelmed today and I just decided to take the kids and run away for a few hours.

So at 8:42pm tonight, I texted her and said "Ok. Let's do this." That started another flurry of texts back and forth working out a few final details. At this point, it looks like I'll start full-time the week after next.

Things are about to get a whole lot more chaotic around this place.

Speedbumps

I'm not exactly sure what we did to deserve this.....

I blew out the head gasket in my van.
Then the water pump went out in The Dude's truck (while I was driving it).
My dishwasher crapped out on Mother's Day.
My lawnmower died the other day.

Then this evening, The Dude was out running a couple of errands, including picking up supper for us, and he called me to say that the truck had broken down. Again.

Anyway, it ended up being really minor. I took the boys, went and got him, we ran to the auto parts store and back to his house to get his tools, replaced the solenoid in the parking lot of the pizza place, and boom - back on our way again, all in less than an hour.

Still.... it's frustrating. It seems like just when we fix something - another thing breaks. Luckily this time, it was cheap and easy to fix. But I'm getting tired of fixing stuff. Besides the fact that it's generally really inconvenient, it's also getting really expensive.

We keep spending money on fixing stuff - and it's money that we're trying to put towards other stuff.

We're trying to figure out a way to make TMOART:13 happen (if you're new around here, that stands for The Mother Of All Road Trips: 2013 Edition) but at this rate - it looks like it might not. We want to rent a bigger van to do it so that the kids are more comfortable (and let's face it - if it's a rental and it breaks down, someone else has to pay to fix it) but from looking into that, a rental will easily tack another $1000-1500 to the total cost of the trip. We just might not be about to do it this year.

Even though we keep breaking stuff, we
have fun fixing it.

We're still trying to get moved so that we can have all of the kids in the same school district, and moving takes money too. Funny how that works.

But still, even though this is all so incredibly frustrating, we're still plugging along. We're still making plans (and adjusting them) and we're moving forward and we're looking into doing some other things that involve some really big steps (no, not THAT kind of a step) and all in all, no matter what, life is good. We might keep hitting speedbumps, but that's all they are - they might temporarily slow us down a bit, but they're not sending us off into some other direction.

I figure at this point that if we can deal with this much broken crap, we should be able to handle just about anything. We'll just keep going over the speedbumps, one by one.

We might lose what little bit of our minds that we have left.....but it'll just make the ride more interesting.

Wish Flowers

My kids call these "wish flowers".

They pick them, make a wish, close their eyes, and blow with all their might, hoping that the power of their breath is enough to force every single piece of "cotton" off of the stem, granting their wish immediately.

To see their innocence and hope every time that they do this is both inspiring and heartbreaking. Knowing that they have placed all of their hope and faith on a common weed makes me realize just how trusting they can be, but knowing that the weed doesn't have the power to make everything right is just as disappointing for me as it is for them.

As their mother, I want to make all of their wishes come true. As a human, I know that's impossible. How can I do for them what I can't even do for myself?

As a parent, I think one of the hardest things ever is to see my kids want something and not be able to provide that for them - be it a material item or not. It's no secret that I don't have money to burn, so when the kids ask for something.... a new bike, or new 'cooler' shoes, or to go out to eat, or whatever... and I have to say "I'm sorry, but we can't afford that right now" it absolutely breaks my heart. But at the same time, I try to use that as a teaching moment - "we can't always do what we want all of the time, but if we work toward a goal and save our money, we can do it another time" or something similar to that. I think that it teaches them something, and I think that they learn to appreciate things more because of this, and I know that will help them in the long run - but it doesn't negate the fact that right now - it sucks.

I hate using money - or the lack of it - to teach my kids life lessons, but when you get right down to it, so much of our lives nowadays revolves around money. Our kids are being taught by society in general that they have to have the newest best biggest brightest thing or they're not cool - and to me, that's just wrong. And I'm trying to teach my kids that they don't have to have all that to be cool.

Every now and then, there's a moment when I think that maybe I've gotten through to them - like today, when we were driving to church in The Dude's chariot and Emily looked at me and said "Mom, when I get old enough to drive, I want a truck just like this - I don't want a new one, I want an old one" and I could have hugged and kissed her right then and there if I wasn't driving. She thinks that the old beat up truck is cool - and that makes me so happy.

Right now, 98% of the enormous stress in my life revolves around money - or the lack of it. We need money to fix my van, we need money to move, we need money to get The Dude's surgery on his shoulder, we need money to plan our yearly TMOART to see my parents.....money money money. But as The Dude reminded me today: "We will get through this - we've gotten through worse, and we'll get through this too, because we're too badass not to."

Don't tell him, but I'm beginning to think that he's my own version of a wish flower - except that instead of me being able to push him around and get my way, his strength in tough situations is what is keeping me from totally losing my mind.

Grocery shopping - NSM style

Some of you expressed an interest in how I was able to go to the grocery store today and buy a month's worth of groceries for me and 2-5 kids on $216. I promised that I would explain, so here it is.

My first step was to make up a menu. 

Keep in mind that I don't have all 5 kids with me all of the time. The older 3 spend half of their time at their father's house, so on those nights I generally don't plan meals - we either eat leftovers, or I make something small for the 3 of us who are here. I plan the meals for when we are all here. The kids also eat breakfast at school on some days, and also eat lunch there - so that cuts down on my meal planning a lot (until summer break).

Once I have the menu made up, I go through meal by meal and list out all of the ingredients on my grocery list. After I get the first draft of the list made, I go through the cupboards and cross off anything that I already have, and double-check to see if I need anything else. At that point I have my final grocery list.

I don't really do coupons. Our grocery store sends some out based on our purchases, and so I use those because they're actually for stuff that I use. But I don't have the time or the patience to do much more than that with coupons. Not to mention that I don't have the storage space for 873 cans of tuna or 47 cases of toilet paper. I buy what I need - period.

So....what did I buy?

The stuff that's edited out is just what was duplicated when I took the pictures - so what you see is every single item that we got.

Yes, there's a bottle of Mt. Dew and a king-sized Snickers up there at the top. We were hungry. And thirsty. But other than that, there is no junk food on there. I don't buy cookies and chips and crackers - I make all of our snacks from scratch. It's not that I think I'm SuperMom or anything like that - it's just cheaper. And while I'm (obviously) not a health food nut, if I make the stuff I at least know what's in it.

I splurged a little bit and got a 10 pound package of ground beef this time although we didn't really need that much - but it was on sale and this way we'll have it. I'll divide it up into 7-8 packages tonight and stick it in the freezer to use for meals throughout the month.

There's also not a ton of fresh produce on there - and there are a couple of reasons for that. To be completely honest, we don't eat as much as we should (although we are getting better about it). Also, where I now work I can get some produce and lots of dairy stuff at a slight discount AND it's super fresh - plus I don't have to have the cash for it because they just take our purchases out of our paychecks. So I will be getting more of that stuff throughout the month, but not in large quantities so that it will be fresh and not go to waste.

But as of right now, there is enough stuff in this house to make everything on that menu - plus some. So although I will have to get a few more things throughout the month, for the most part I am done grocery shopping for the next 4 weeks. I also plan to keep track of the little purchases that I make here and there and get a better idea of the total amount that I spend over these next 4 weeks, but I'm guessing that I can keep the total under $300.




PLEASE NOTE: Some of you know where I live, and/or where I shop. It's obvious that this is a Kroger store, but let's just leave it at that, ok? And I am NOT going to say where I work, so don't ask - and if you know, please don't say it. I hate to even have to bring this up, but I've had to do some filtering over the past couple of weeks so I thought I'd just mention it here. I know I put a lot of my life out here for everyone to see - but that doesn't mean that I want to give the wackos and nutjobs directions to my front door.

I'll rise

I went camping this weekend with Alex and Daniel. It was a Scout thing, and although it was horribly cold and windy and at times downright miserable, the boys had a great time and we survived the weekend with very few serious issues for the amount of kids that we had with us.

While we were there and I was basically unplugged from the world, it gave me a break from thinking a whole heck of a lot.  But now that we're back and the clothes are unpacked and the laundry is (almost) done, it's back to reality.

Things are piling up again, and my plate is full - and like I mentioned on my facebook page, it's not full of chocolate.

~The Dude is facing what will most likely be major surgery on his shoulder, and right now he is miserable - and I can't do anything to help. He's not working, but there are still bills to be paid on his end.
~We are still looking to move as soon as we can, but of course, that takes money - lots of money - whether we decide to rent or buy.
~It appears that my van needs to have some work done on it. Like, now. I probably shouldn't be driving it, but I don't have much of a choice.

Needless to say, all of that adds to my normally stressful and chaotic life. I actually spoke to my boss last week and she gave me a few additional hours this week so that will help financially. I've all but cut out any frivolous spending on my end in order to save as much money as possible so that we can get through all of this stuff, and I'm looking into some other opportunities to make money that I've known about but ignored up until now.

Bottom line is this: no matter what happens, we're going to get through all of the BS. Even though right now I feel not only like my plate is full, but that I've been smacked upside the head with it - things are going to fall into place and we're going to survive. The Dude will get his shoulder fixed and be back to 100% soon, we'll get moved into a new fabulous wonderful place, and my van will be roadworthy again.

It might not happen today or tomorrow or next week - but I know that we are going to get through it.

Do you really want me to look like an idiot? Here's your chance.

This post was written by my niece Ashley.

OK, OK, technically she's not MY niece. She's Ex1's niece. So she's really my ex-niece. Or something like that. But you know, that's just semantics in the grand scheme of things. 

Listen to what she has to say. It's important.

~*~*~*~*~*~*~*~*~
Cystic Fibrosis is a life-threatening genetic disease. There is no cure. You cannot catch it. You are either born with it, or not. However, just being around someone with it or their cough, will NOT, I repeat, WILL NOT make you sick. CF causes mucus to build up and clog some of the organs in the body, most commonly the lungs and pancreas. Mucus building up and clogging the lungs cause difficulty breathing, and frequent infections since the thickened mucus is bacteria’s favorite place to take up house. This eventually leads to lung damage. Many patients with CF are diagnosed as Pancreatic Insufficient, and require replacement enzymes to digest their food, maintain a healthy weight, and receive appropriate nutrition. Statistics from the Cystic Fibrosis Foundation indicate that approximately 30,000 adults and children are currently diagnosed with the disease, and that approximately 10 million more people are carriers! That breaks down to 1 in 31 Americans.

Let me introduce to you how that plays into our lives. In 2005, I met my husband. In 2007 we found out that we were expecting. Things began rocky. I had what I believe to be the worst case of morning sickness known to man. If I was awake, I was nauseated. Exercising, eating, drinking, asleep…you guessed it. When we finally got to the point to where we could find out what the sex of the baby was, the excitement was tantamount to Christmas morning to a four year old. We hear, “you see that? Looks like a turtle? That’s the penis.” It’s a boy. Much to my surprise, my husband’s face dropped. However, by the time we got home that day he was excited. “I’m going to get to teach someone to wrench on things like I do. He’ll tear his bike apart and put it back together.” There was the excitement I’d dreamed of.

Fast forward four weeks, to our next appointment. “The sonogram showed some fluid retention in the kidneys, which isn’t necessarily normal, but it’s not abnormal either. We’d like to do a second sonogram.” Okay, cool. We’ll get to see his chubby little cheeks and cute button nose again. Next sonogram the normal “drink until you think if you even inhale you’ll pee your pants” happens. They take a bunch of measurements, tell you what they’re looking at, we get a couple pictures, done.  The first appointment I attended alone, the OB was out of town.  Let me tell you, there are few things I thought would ever worry me. I never imagined that I would be 25-26 weeks pregnant and terrified. I see the PA and she says, “There were still bright spots on the bowel.” I’m sorry, what?!  This is the first I’ve heard of this. “Well, there are a few things it could be. It could be nothing, or there is a 1% possibility it’s Cystic Fibrosis.” They were going to play vampire that day anyway, so I told them to test it. Now, what they were looking for is whether I was a carrier or not. I was told 7 days for labs to come back and no news is good news. The 7th day I’m thinking, whew, we really cut that one close. At 5:15pm my phone rings. “You ARE a carrier for Cystic Fibrosis.” Crap. Now we’d have to get my husband tested, but insurance refused to pay for it, and we were too broke to pay out of pocket. We had no choice, but to hope and pray.

On October 12, 2007, Corban made a sweeping appearance in the middle of the night. Nothing like what labor was with my daughter. This was easy. He was 7lbs in all of his beautiful glory. He had passed meconium in utero, so we thought we were out of the woods. He nursed like a pro, except he seemed to always be hungry. He nursed 45 minutes, every 45 minutes. At 10 days, he developed a cough. It took some pushing, but I finally got them to test him. He was given a sweat test that afternoon. Now, typically they say they can’t get a newborn to sweat enough for good results. I reckon he didn’t need much sweat, because he was given a “suggestive positive” two days later. The phone call came while I was gone. I was eating lunch with my mother, and she had a phone call in the office. When she came back out she said “you need to go home right now. That was Matthew.” I knew. I hit the ground. All I could say was No repeatedly.  Suggestive positive meant he could still not have it. The only problem, his number was 112 mmol/L. Suggestive positive would mean he was below 60. At 60, it’s a diagnosis.

Digital Clubbing. Rounded fingers and wide fingertips.

We were referred to a specialist two weeks later. They did genetic work, and they found two genes. Official diagnosis.  Delta F 508, a very common mutation and Delta I 507, more rare. He was diagnosed as Pancreatic Insufficient in the office. He went on Creon (enzyme replacement) at that point, and will be on it for the rest of his life. Today, he is going on 6 years old. He has had pneumonia twice, tonsillectomy, adenoidectomy, polypectomy, diagnosed with Distal Intestinal Obstructive Syndrome (DIOS), at one point required a PICC line, and he has digital clubbing.

Vesting

How does this affect our family? Treatments are a big deal in our lives. Corban takes 3 breathing treatments once a day, and two twice a day. During those treatments he uses a vest, which is a machine that basically shakes him and breaks up the mucus in his lungs. 28 pills on average per day, and a nasty nasal rinse twice a day. Every 3 months, we take a road trip 200 miles north to see the Pulmonologist, Dietitian, Social Worker, Gastroenterologist, and Respiratory Therapist. Despite all of this, he is your typical boy.

This is the machine that tests his FEV1 -Forced Expulsion Value based on 1%.
In other words...how much of the air in his lungs can he get out. 
It tells what level his lungs are functioning at.
He has been as low as 70% - today he was at 98%!

Trip home. He puts out that much effort
on the machine.

Corban's daily medication

Corban will live the rest of his life battling CF. I pray strongly each day that he will beat it. His odds are good. But it’s a downhill disease. Right now, the average life expectancy for a CFer is 37.

Here’s where you come in. Each year Great Strides puts on walks all over America. Our Local walk is May 4. This is our chance to raise money to fund the research for the cure, as the Foundation runs solely on donation. Nearly 90 cents of every dollar raised goes directly to research.

Just visit this page to donate in my name...... or.......

~*~*~*~*~*~*~*~*~
Here's where it gets fun. Ashley and I are both very competitive people. And we are evil. And we can really really torture each other.

So we have a little challenge going between us. You can either go her page to donate to her, or you can go to my page to donate to me. All of the money goes to the same place in the end.

Out of the two of us, whoever gets the most money donated gets to 'dress' the other person the morning of the walk. If I raise more money than she does, I get to make her wear whatever I want her to wear - clothes, hairstyle, shoes, makeup, accessories - you name it.

But, if she raises more money than I do, she gets to do it to me.

And we are evil. EVIL. Trust me, whoever wins this little challenge is going to TORTURE the other person. Just imagine - one of us is going to be dressed like an idiot while walking about 3 miles with over 1000 other people who are dressed normally.

Yes. There will be pictures. Lots of pictures. I can promise you that.

So will you please help us? Help Corban and the thousands of others who have this disease - with your help we can one day make CF stand for Cure Found!

You can also help by sharing this post as much as possible. Make THIS go viral. Make it knock that silly Tooth Fairy letter out of the bloggy world because this is way more important than that thing ever was. Corban thanks you. 

Super rant - on money and heroes

So apparently the Super Bowl is over. From what I can figure out just from looking at my facebook newsfeed, the Ravens won and there was some kind of a power outage during the game. The commercials, while awesome, apparently left a bit to be desired for some.

I know that there were commercials for Oreos, Dodge vehicles, Taco Bell, Tide, Budweiser, Go Daddy and for the farmers of America.

What I have yet to see, however, is a score.

Or a mention of a player. Or of a great play in the game. Nothing about the crowd, nothing about statistics or positions or bad calls or even good calls.

Nothing about the game.

Isn't that what this is supposed to be about? Isn't the Super Bowl supposed to be about football?

But, I suppose when companies are paying $4,000,000 for a 30 second ad, it's ok to forget about the game. It's alright to forget that the reason that the commercials cost as much as they do is because they are to air during "The Big Game".

Maybe I'm a little more callous about it this year because I didn't really have an opinion on either team. I don't like or dislike either one, so I wasn't really interested in watching the game at all anyway. So being disinterested in the game to start with made me notice that no one was really talking about the game. It was all about the commercials.....which wouldn't happen without the game.

I don't know what the average salary is for an NFL player, but I can only assume that it's considerable. I'm betting that they get nice little bonuses for playing in the Super Bowl as well, not to mention side gigs as official spokesmen for products or whatever.

It's all about the money. The game got lost among the dollar signs. But these men are our heroes. They are looked up to by people young and old. They are admired and loved because they play the game in front of millions of people and get millions of dollars to do it.

I'm not saying that they shouldn't be admired for what they do.

My opinion? 

I think that the millions upon millions of dollars in advertising could be spent better elsewhere, but that's just me. Sponsors could focus on the game, put out a simple ad for their product, and donate the excess millions to the homeless or the hungry or animal shelters or education or mental health programs or veteran's services or something more important to real life than hocking their products during the game.

But besides that....

In the sports world, I have very few heroes. There are very few people who I admire simply because they participate in a sport that I enjoy.

But I will tell you this - my heroes? My personal sports heroes? The young men of the 2012 Penn State football team.

Those young men signed up to play for a legendary program, and then the rug was yanked out from underneath them. Everything fell apart. They were given the opportunity to walk away from the team and play elsewhere with no penalties whatsoever. They could walk away, play somewhere else, and go all the way.

They were told that if they stayed, there would be no post-season. No bowl games. No championships. No glory. Nothing. A regular season, and that was it.

And all but a handful stayed. Some left, yes. But almost all of them stayed. Why?

Because they love the game. They wanted to play the game at Penn State. They stayed and stood up for what they believed in, knowing that they wouldn't play as much as they had hoped, and knowing that they had no possibility of ever getting a championship.

Those young men - are my sports heroes.

Just in case you're new here - I'm a proud PSU alum.
Class of 1994
(Picture taken this past summer on TMOART:12)