Last week at Parent Teacher Conferences we got a letter from H. It's so adorable I decided to post it here. I wanted to just scan it for the added handwriting effect, but it's written very lightly in pencil and I doubt it will come out. Dear Mom and dad I wanna new bike. And you always tell me to go play outside. And my bike and kindove everything else is a handy down And I don't even know how old it is. And even kindove junky and old and rusty. And it is super super hard to pedal it. And it's seat is really relly hard. Name: H. Truth be told, his bike IS really old and junky and rusty and a hand me down. I'm not sure about the pedaling, but I do imagine the seat is really hard.
Life is hard when you're the fifth child.
Especially when, while your parents find your letter adorable to the max and they would love to rush to the store and buy a new bike based solely on the adorableness.... truthfully, they aren't exactly moved to get on the "new bike" bandwagon.
The reality is that you have trouble taking care of the current rusty junky bike......and your scooter, and your ripstick, and your toys, and your balls and your clothes and your shoes. Your definition of putting things away is dropping them in the yard, the house or your room and walking away.
Our definition is different.
So my darling boy, let's work on this together. You practice putting things away (our definition, not yours) and we will think about a new shiny bike.
(Oddly enough, H is a great worker, despite his slovenly ways.)
Tecfidera Update: Tomorrow will be four weeks. In the last week I have had no stomach issues and only had my face burst into flames twice. Progress!
-Yesterday at church the kids were being asked what they were thankful for. When it was eight year old H's turn he said, "I am thankful for Genetic Engineering." I mean, really, Who isn't?
-Also, yesterday, ten year old S was complaining for a long time about a stomach ache. I asked him multiple times if he had done the usual things to relieve a stomach ache, and he said he had. A few hours later he was still complaining, so I started thinking out loud to myself and said the word appendix. He asked about it and I explained that sometimes your appendix gets really sick and has to be surgically removed.
And with that bit of news, I never heard another word about his stomach ache. Apparently the word scalpel is an instant cure.
Ok, folks, I've been on Tecfidera for three weeks now.
Since I wrote about it last week, I've had ups and downs. Almost literally as I clicked my "publish post" button, a stomach ache started. A stomach ache to end all stomach aches. It lasted about 2 1/2 days and was so bad I could hardly get out of bed. But since then I've been fine and my face hasn't burst into flames either. So I guess that's good!
I'm thinking today about the costs of Tecfidera. It costs $54,900 a year.(!)
After my insurance kicks in, my price is $1587 per month. Which is $52.90 per day, $26.45 per pill.There is co-pay assistance available, but it runs out after $10,000/year which means after six months the $1587/month is all on me.
This excellent article, states that: "The rest of the cost of Tecfidera has nothing to do with what the ingredients are - it's all about what Biogen had to pay to get it on the market, and (most importantly) what the market will bear. If insurance companies believe that paying fifty thousand a year for the drug is a worthwhile expense, the Biogen will agree with them, too." This article, states that Biogen Idec, who manufacture Tecfidera had a 32 percent jump in their revenue in the third quarter. Biogen is obviously making money off Tecfidera, yes, along with the two other MS drugs they manufacture, but it's clear that Tecfidera had increased their earnings substantially.
I get it. Drug manufacturing is a business. They are in it to earn money. BUT, but, I can't help but bristle that prices are set according to what the market will bear, according to what the insurance companies will bear.
How about what the people who desperately need these drugs can bear?
I understand that the drug companies need profit, but really? $54,900 a year per person. That's a lot of money.
It's estimated that 2.3 million people are affected by MS worldwide. I am one of those people. Just a regular girl hoping that one of these MS drugs will help my sick body.
In addition to being just a regular girl, we have a regular income. I'm a stay at home mom, we have 6 kids. My husband is not Donald Trump. I am not Oprah. We are not wealthy. We are regular, and to be honest $1587/month is going to be a stretch.
Two weekends ago, the day my teenage daughter, R, had been dreading for weeks came upon us.
She became a mother. A mother specifically to (anatomically correct) Asian baby boy "B" who she lovingly called Alejandro, lest he be confused about his racial identity.
Alejandro would be among the living for about 50 hours and she was required to take care of him, as if she were his real mother and as if he were real. When he cried (through a speaker in his belly) she was responsible for figuring out what was the matter. Did he need a diaper change, a bottle, a burp or rocking?
Alejandro was heavy and life like, complete with a bobbly head. He came with a computer chip embedded that reported back to R's teacher if he was properly being taken care of. A chip in his diaper that reported back to the teacher if his diaper was changed in a timely matter. If his head bobbled too much it told the teacher. An electronic bottle needed to be held right to Alejandro's mouth for the proper amount of time.
Serious business, right?
The part that she was least excited about was the fact that baby Alejandro was programmed to cry intermittently during the day and during the night. The point being that baby Alejandro was supposed to be like a real baby, and real babies cry all day and all night.
"I'm going to get NO sleep for two whole nights! It's going to be terrible!" she moaned before Alejandro even showed up.
I assured her that no one has ever died from sleeping poorly for two nights. She seemed skeptical. Teenagers, you know, they need their sleep. And then I laughed to myself because her room is in the basement. Hey, I'm just the fake grandma, there's no reason I need to lose sleep too.
The day came and R got the baby from her teacher and then raced home from school, dropped him off and headed back to basketball practice. So in the first two hours of Alejandro's life I had to baby sit. Welcome to fake grandma-hood.
Frankly, it was nerve wracking. I was afraid it (he?) would cry and I wouldn't know what was wrong. And what if I jiggled the head when I picked it up and the computer reported it?!?! It was really quiet for the first hour and a half and we wondered if it was even alive. Then we realized it was breathing.....well, the sound of breathing anyway. Then out of the blue it started crying. A recorded baby cry that sounded totally real and slightly creepy.
Let me tell you, a fake baby that actually cries is highly interesting to all the assorted neighborhood kids that happen to be moving herd-like through your house (ask me how many times a day I say, "shut the door please!"). I had quite the captive audience as I attempted to soothe the crying fake baby.
When Miss Basketball got home, I happily handed over Alejandro and she tended him for a whole hour before she had to leave to fill her volunteer time with the disabled. This time, she had made arrangements for her friend next door to babysit while she was gone for the next two hours.
Let's all say it together now, "deadbeat parent".
Ha, just kidding. After that, she was totally hands on. Night and day, she was mothering cute (creepy) Alejandro. She even took him out on the town on Saturday for a serious shopping expedition with her aunt (who tried her hardest to hit all the major local shopping delights while they were visiting).
And then, as quickly as he came, he was gone. He breathed his last creepy electronic breath, and we all sighed in relief.
Teenage motherhood is not something I would predict in R's near future, and mothering Alejandro just reinforced that fact. She does not want to be a mother now. Someday, yes, she will be an amazing mother, but for now we are both content that she's an amazing kid.