Happy Thoughts

My last post was such a drag that I figured I had to follow it up with something uplifting. Of course, this post will be bittersweet, all things considered, but let's focus on the sweet instead of the bitter, shall we?

Shortly after dad's diagnosis in March, my family came to The Big D for a visit. My mom flew in first and spent some time with us and the boys. Isaac showed off by doing what he does best, things like being really cute and doing funny things and being really happy. He also discovered Alex's Smart Cycle and thought he was the baddest thing on two wheels. I told him that would be true if he had a badder helmet than his boring white one with the lame shamrock sticker, like maybe one with flames or a skull and crossbones. Then he headbutted me.

Mom loves to give the boys baths, and the boys love to take 'em, so that worked out nicely.

My dad and my Grandpa Poppo road tripped in a few days later. While we were catching up in the living room, Alex had gone into the garage to ride his bike, and when I went to check on him, this is what I found:

I managed to take a picture that doesn't really capture the gravity of what was happening, so I'll have to describe it for you. Those pipes to the left are attached to the top of the hot water heater, and the white stucco wall in front of Alex is the partition around the half bath in the garage (don't ask). The boxes to the right are stacked up to no less than twelve feet off of the ground. So to put it into perspective, that would place Alex's head somewhere around the ten foot mark. Evel Kneivel Jr. had scaled a pile of empty boxes that we had stored in the bathroom to see how high up he could climb. Answer: 10 feet. Of course he didn't think far enough to wonder how he would get back down. After taking pictures of him and laughing while he calmly stated, "I need some help, I'm really scared", I called the rest of the family in to witness his feat before helping him down.

The first day they got here was beautiful, so we spent some time outside. Alex was very excited to play "Wrestle House" with Grandpa.

Isaac would have loved to play Wrestle House, but he hates the grass, so he sat this one out.

He got his own bonding-with-Grandpa time when we went back inside.

He got some bonding time with Poppo, too.

After they had gotten one day of relaxation under their belts, I put my folks to work. By now, they really should know better than to expect that a trip to our house is going to be a vacation. Because matching the energy level of two very busy boys isn't challenging enough, I roped them into helping me assemble a big wooden swingset that we had bought the week before, which ended up being a fun, if exhausting, family project.

The reviews for this particular swingset claimed that it would take 2 people 8 hours to assemble it. As Poppo said, it really takes 4 people 16 hours to put the thing together. We ended up taking two days to finish it, but we finished, and it didn't fall down when Alex climbed on it. Success!

Even little Isey got to enjoy the fruits of our labor.

We spent the rest of that afternoon enjoying the nice day.

Unfortunately that was the last nice day of their visit. I had promised 80 degree temperatures and sunshine, and the rest of week brought 60 degree temperatures and rain. Oh, and did I mention both of my parents came down with the stomach flu and had to be quarantined in the hotel for two days? Yeah, that wasn't on the agenda either. But it did mean that Poppo got lots of time to hang with the boys and gave him a chance to brush up on his Pacman skills.

It was really hard to see them go at the end of the week, but we decided that this was the first of many opportunities to create good memories. I'd say we succeeded.

It's gettin' heavy up in here

So...I've been putting off this post because it means I will have to talk about my dad's ALS diagnosis, a topic that totally makes me want to wretch. But I'm only delaying the inevitable, so whatever, let's just do this.

My dad has been diagnosed with ALS, commonly known as Lou Gehrig's disease, which is a rapidly progressing degenerative brain disease that affects the motor neurons, and to put it crudely, it suuuu-uuucks (meant to be read in a high-pitched sing-song voice). I was going to try to paraphrase the symptoms and describe the prognosis in the most sensitive way possible, but I finally gave up and decided to post the following excerpt from the ALS Association.

Amyotrophic lateral sclerosis (ALS), often referred to as "Lou Gehrig's Disease," is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.

As motor neurons degenerate, they can no longer send impulses to the muscle fibers that normally result in muscle movement. Early symptoms of ALS often include increasing muscle weakness, especially involving the arms and legs, speech, swallowing or breathing. When muscles no longer receive the messages from the motor neurons that they require to function, the muscles begin to atrophy (become smaller). Limbs begin to look "thinner" as muscle tissue atrophies.

Although the cause of ALS is not completely understood, the recent years have brought a wealth of new scientific understanding regarding the physiology of this disease. While there is not a cure or treatment today that halts or reverses ALS, there are significant devices and therapies that can manage the symptoms of ALS that help people maintain as much independence as possible and prolong survival. It is important to remember that ALS is a quite variable disease; no two people will have the same journey or experiences. There are medically documented cases of people in whom ALS ‘burns out,’ stops progressing or progresses at a very slow rate.

He was diagnosed back in March, and so many things have transpired since then. It's one of those things that happens to other families, not your own, and months later we are still devastated, overwhelmed, and unable to fully accept the reality of the situation. One of the hardest things about it is the uncertainty, which makes it really hard to plan for the future. Some people live 2 years with the disease, and a small percentage live 20 years or more. There is no way of knowing whether he will be in a wheelchair a year from now or if it will take many years for his body to break down.

Whatever the case, they plan on selling the home that we grew up in, among other things, and it is likely that my dad will stop working as a full time home builder in the next month or so. We are in the process of organizing several fundraising efforts so that they will be able to live, pay high insurance premiums, afford alternative treatments that insurance will not cover, and hopefully raise enough that they can go on some fun trips while dad can still get around.

My mom is putting on a huge fundraiser at the end of May, so I will be heading to Peoria for a few days to help out and spend some time with my family. I am trying to finance a family trip to Disneyworld for the end of August so that the boys can have a magical vacation with their grandpa, so I have reopened my Etsy shop and I'm busting my butt to fill orders after the kids go to bed at night. I am also sending more designs to PaperBox Press, so if you know anyone looking for party invitations, birth announcements or stationary, send them my way, would ya?

For more info and updates about dad's treatments and fundraising efforts or to donate, you can check out our Facebook page: http://www.facebook.com/HelpTracyKickALS. I have also added a donation button to the top right side of my blog if anyone is so inclined. And if financial contributions ain't your bag, a few prayers thrown our way would be greatly appreciated, too.

Thanks so much for your support.

XOXO
Sarah

Stealing the Show

Here's a little video from Alex's Spring choir concert on Wednesday. I took it with my Flip camera so it's a little far away and blurry. But don't worry, you may not be able to see him, but you will definitely be able to hear him.

Introducing...

...Isaac's new head!

As of last Friday, Isaac is officially helmet-free! He wore his band for a grand total of 12 weeks, and he is now the proud owner of a beautifully, expensively, perfectly roundy round head.

They took before and after pictures to document the change, and there are several things that strike me as I look at the pictures: a) Isaac's torticollis was a lot worse than I thought, b) his head was a lot more lopsided in real life than it appears in the "before" pictures, c) he has grown up so much in 3 months, and d) my kid is insanely cute from every angle.

God is not a couch potato

Alex and I have had a lot of profound theological discussions lately. Tonight, we covered this compelling topic:

Are there TV's in heaven?

A: Are there TV's in heaven?
Me: Ummm...I don't think so, buddy.
A: Well, how do you know there aren't TV's in heaven if you haven't been there?
Me: Good point. I guess there could be TV's in heaven.
A: What does God like to watch on TV? He probably doesn't watch Thomas movies...
Me: Even if there are TV's in heaven, I don't think God is sitting around watching TV. He's very busy and has a lot more important things to do than watch movies all day. God is not a couch potato.
A: Ha ha, couch potato......are there couches in heaven?
Me: Probably not, because like I said, God doesn't sit around watching TV.
A: You can still be a couch potato if you're sitting on the floor.
Me: Touché.

redefining "tough"

Me: Hey Alex, what do you think of the new shoes I got?
Alex: Are they for me?
Me: Um, nooo...
Alex: Can I try them on?
Me: I guess so.

Alex: These shoes are scary.
Me: They're scary?
Alex: Yeah, 'cuz they're really tall.
Me: Your dad's reaction when he sees you in those shoes is what's going to be scary.
Alex: But they fit me!
Me: Sort of...you can get your feet in them, I guess.
Alex: Hey, I can walk in them, and now they're not scary anymore!
Me: They're not?
Alex: No, because I'm tough!
Me: Yeah. You're tough.

Isaac...

...is 9 months and 9 days old.
...is occasionally the grumpy one.

...is usually a sweetheart.

...wakes up at 5am, no matter what time he goes to bed, usually with a stinky diaper.
...makes boy noises.
...is loud. No, I mean like, really really loud.

...should be hired to do the baby version of the "WWWAAAAZZZZUUUUUPPP???" commercials.

...loves kiwi, deli turkey, applesauce, mum mums, chicken nuggets, mandarin oranges, cheese, yogurt, blueberry waffles, macaroni and cheese, pasta, peaches, and hot dogs.

...would survive solely on Gerber Graduates Lil' Crunchies if I would let him.
...makes a mess when he eats.

...does a great "white trash baby" impression. If only onesies came in a "wife beater" version.

...still has no teeth, still acts likes he getting 'em.

...loves to play in water.
...makes hilarious faces.

...likes to rummage through trash cans.
...hears the word "no" more and more often these days.
...has an athletic build.
...wears 18 month clothes.

...outgrew his infant car seat, but LOVES his new big boy one.
...can crawl on carpet, but has a hard time on hardwood.

...loves to swing outside.
...dances and sings when he hears music.

...can pull himself up to stand, but doesn't do it often.

...hasn't found a sippy cup that he loves.

...has started to hold his own against Alex. A will rue the day he picked on his giant little brother.
...has no greater joy than spending time with his brother.