If you have been standing at your mailbox everyday for the last few weeks waiting for your Christmas card from Team Patterson, you can just give up that pipe dream.
We were gonna bribe our kids to put down their electronic devices and change out of their Miller Lite shirts and pajama pants long enough to snap a festive Christmas picture but then we remembered that Brett and I aren’t particularly fond of torturing ourselves and we were out of the hard kind of liquor that would make it worth it, so you will have to settle for this.
I also considered for a moment doing a really lovely, sentimental Christmas newsletter that would highlight only the amazing things that have happened this past year but I am not fond of getting struck by lighting, it’s hard on my hair, and I figured you wouldn’t believe me anyway. So here goes!
Merry Christmas from The Patterson’s!
Wow, what a year it has been! 2014 was a whirlwind of excitement and joy. As we look back over the year it’s hard to believe that it flew by so quickly and that we survived it. Mostly that survived it.
Isaak turned 13 this year. Oh, what an unexpected joy it is to have a teenager in the home. And by unexpected I mean I wouldn’t be more surprised if I woke up with my head stapled to the carpet. And by joy, I mean…. well. We keep remembering back to all the years that we tried and planned and prayed for a baby and now he’s here and half grown. Looking back, it was probably a sign.
Isaak is doing great in school. Daily, he kicks the labels and limits that come with Autism in the nuts and laughs about it. Atta boy.
He has enjoyed the freedom that comes with moving up to middle school, mostly getting his own cell phone and lifetime supply of deodorant. He has really excelled in his academics and puts forth a great deal of effort with his studies during the last week of the grading period We just found out today that he got an F in Health this semester, but he’s still alive so he must have learned something, it’s probably just a glitch in the grade book.
He enjoys lots of extra curricular activities like Mine Craft, WWE and arguing. When he’s not on his Mine Craft server on the computer, he has his head burried in his iPad watching You Tube videos of a grown man who calls himself Captain Sparkles. When he’s not doing either of those things, he’s probably grounded.
He’s still undecided with what he wants to do after high school but on the top of his list are becoming a Moonshiner or a gold minor or both. We are very proud of his ambition and look forward to spending all the money we have saved for him to go to college on a European vacation for ourselves.
Luke turned 9 this year! Seriously, it seems like he was just born! We continue to explore what is going on with Luke from a medical standpoint and have been thankful that all of the testing that he went through this year with regards to his weakness and tremors have been negative. He still, of course, shakes like Courtney Love on a bender and we are a good $25K out of pocket into negative tests, but we remain hopeful that we will have answers in 2015. We are awaiting approval for him to meet with a genetic team that will then map his entire genetic sequence and hoping we don’t end up on an episode of Jerry Springer. We also got a referral to take him to Mayo Clinic and a place in Washington DC for hard to diagnose medical conditions, but we aren’t quite ready to take that step now. Or ever. Unless there is a great mall by either one of them, then we might be down.
Luke is also doing great in school! He loves 4th grade and made the A/B Honor roll last 9 weeks despite me helping him with his homework. He has some great friends and has enjoyed becoming a bit more social this year. He loves spending time outdoors if it means he only has to go the distance between the car and Game Stop. He spends most of his free time playing video games and when he’s not doing that, he’s watching You Tube videos of people playing video games.
Luke is fascinated with all things facial hair and looks forward to the day when he can grow a uni brow that connects to his handlebar mustache. He has an entrepreneurial spirit and would one day like to start a business that caters to people with uni brows. He’s ambitions and a humanitarian. Like if Bill Gates and Angelina Jolie had a baby. We are very proud.
Brett and I celebrated our 18th wedding anniversary this year and our 20th year of being a couple. I still hold true to my claim that he is the luckiest man alive. Sometimes it’s like we are still newlyweds and then other days he breathes a lot and loudly out of his mouth while doing mundane things like watching tv or making a smoothie and it’s not so much “will you accept this rose” and more like The War Of The Roses. We go together. Mostly.
We want to take this moment to wish you and your family a very Merry Christmas and the best of God’s blessings in 2015. Through it all, the good times and the other 361 days, we hope that just like we are, you will constantly be reminded that YOU are adored by a God that moves heaven and earth daily to remind you that you are His. I promise you, we are all gonna be ok.
Thank you for your friendship, for the way you love us at our most unlovable and for making this ride on the crazy train we call our life even more enjoyable.
Merry Christmas. We love you. Mean it!
A year ago today, Luke was having surgery at St Louis Children’s Hospital for a muscle biopsy. You can read about what led up to that here.
A year later, we still don’t know what is going on with our bay, in fact, it feels like we know even less.
We know some medical facts like his biopsy showed acid phosphatase positive cells in the perimysial tissue and there was type 1 fiber predominance present in the sample.
That clears it up, right?
We know a very long list of things that he does not have that have been ruled out by countless genetic tests, EMG’s, ultrasounds and lab tests. We also know we are well into the $20K out of pocket range at this point. We are currently waiting on the results of another genetic test that screens for something called Pompe Disease.
Luke’s neuromuscular doctor in St Loius is just about out of ideas for things to test for or try, but are still very concerned and so, if this next test comes back negative, they are sending us onto another specialty of medicine to start all over again.
Everyone we see agrees that there is something significantly wrong with Luke, they just don’t know what it is.
And then for all the things we don’t know, we know how our boy feels. And that is by far the worst part. There are weeks when his muscle weakness, fatigue and tremors are hardly noticeable, then there are weeks when he’s affected profoundly.
He loves Lego’s but sometimes he can’t play with them because his hands are shaking so badly that he can’t get the tiny bricks together. A few weeks ago we noticed that he had been much more tired than usual and seemed really down. We spent some time talking to him about it and he cried as he told us that his “legs just feel useless”.
It’s hard to come up with an answer to give a 9 year old boy when he asks you why he can’t just feel “normal”. When he tells you that when he is at school he has trouble concentrating on his school work because his hands, arms and legs are “beeping” and distract him. It’s hard to have an answer for any of that.
And here is where I struggle. I go through times when I feel like it is my right to know. Like God owes me that. Like I am his mom and it’s so unfair that I can’t be the one to answer his questions and take care of his pain. And I wanna be mad at science and medicine and God and the shake in a little boy’s hands.
But at the very same time, it’s impossible for me to look at our boy and not see the work of God. Because of the way that Luke struggles, he has this incredible empathy for others that is seldom found in adults, let alone 4th grade boys.
Luke has been surrounded by teachers and administrators and therapists and friends who completely get it, even though the “it” is so elusive. They give him every accommodation in the world and root for him and push him to succeed.
And through it all, Luke still believes beyond a shadow of a doubt, even when I don’t, that God is in control of his life and his future. He prays every night and every morning with a certainty that I am most envious of.
There is this story in the Bible that Luke and I have read many times about Shadrach, Meshach, and Abednego and they are about to be thrown into the furnace for worshiping God and they tell King Nebuchadnezzar that they believe that God will rescue them and then in Daniel 3, verse 18 they say these words that have really become our families most honest prayer….”But even if He doesn’t” .
Our family is trusting that God will provide answers soon about our boy, that He will give us a name or a diagnosis or that he would do a miracle and give us an “all clear”. But even if He doesn’t, we believe He’s still only and ever good.
Thanks for your thoughts and prayers as we continue on this journey. We love ya’ll so much.
I’ve Got 99 Problems…..I’m in Homework Hel……p.
If you have school aged kids I am sure you have been there,too. Especially if you are one of the poor souls with kids in 4th or 5th grade.
Listen, I want you to put the scissors and the box of wine down for a second and lean in real close. I have something to tell you that your heart needs to hear but I will whisper it because I know you are already on the verge of a migraine. Or a mental break down. Or both.
You are not alone. I feel you. If you hear anything today, I want you to hear this, you are not dumber than a box of hair. You aren’t. Right now you feel like you are 24 cents short of a quarter. Like you are two biscuits short of a picnic. Dippier than a pet coon. All foam and no beer.
None of that is true. Well, maybe the beer part, because, all be it ironic, it can’t be a coincidence that Happy Hour also begins around the same time that homework does.
You are smart. You are valuable. You are important. Not knowing how to solve a 4th grade math problem DOES NOT define you. It’s not your fault, it;s not your kid’s fault or the teacher’s fault, it’s just the way it is. Love the player, hate the game, friends.
If you are anything like me, and let’s be honest and just hope for you and cross our fingers that you aren’t, homework is quite possibly the bane of your existence.
It wasn’t always like this. In fact, at least with our youngest, we sorta thought we had the whole elementary school thing on lock. He would come home from school, grab a snack and then get to that evening’s homework that usually consisted of some math problems, some language worksheets or spelling practice and about 20 minutes of reading. Most of it he could do on his own and then I would check over it and occasionally he would have a question about how to do something and I would answer him and blow his mind with my level of knowledge and he would go to bed at night thinking he won the parent lottery because he had the SMARTEST mom on the face of the earth.
And now he cries himself to sleep at night because he’s convinced his mom fell out of a stupid tree and hit every branch on the way down.
What changed? What happened? 4th grade happened.
You totally know what I am talking about, right? When and how did learning get so hard?
If you have or have had a 4th grader, let’s just all pause for a moment of silence in solidarity. You guys. The struggle is real.
I know what some of you who still have the luxury of not reaching this circle of Hell are thinking, “Um… I passed 4th grade. It can’t be that hard!”. You are so, SO wrong. Stake your flag on that hill of innocence because your whole world is about to be shaken.
Maybe you are thinking “I have a college degree, I can certainly handle 4th grade math homework”. You probably also still believe in the Easter Bunny. You need to check your life and soon because 4th grade is knocking on the door like a bill collector.
And then there are those of you who are all like “Come on, I have a PhD in Bionuclear Medicine, I can help my kid with the 4th grade Science Weekly crossword puzzle”. No. In fact, your higher education in this field might have just made you 4th grade dumber. Trust me on this. There will be nights when you cry and curse, so you just might wanna prepare yourself now.
I think the reason why 4th grade and on is so hard is that the rules changed. Common Core, Singapore Math, Standardized Testing, No Child Left Behind Act, Global Warming…. I don’t really know where the blame lies but something happened where logical thinking and reasoning are forsaken and a secret code is adopted for gathering information and it’s sorta like the fight club. And we all know what the first rule of the fight club is.
And it’s not the poor teachers who are changing the rules and keeping secrets, heck I’m not even sure they completely understand it themselves and they have to try to teach it. I imagine them unpacking their new curriculum in the Fall with a Orphan Annie Secret Society decoder pin, a protractor and a flask and asking themselves “what in the H E Double Hockey Sticks?”
For example, when you are in 3rd grade the questions make sense. Things like:
Read the selection below titled The Loose Tooth and answer the fill in the blank questions about the story.
Simple enough, right?
Well once you get to 4th grade it goes more like this:
Read the selection below title Jehoshaphat’s Predicament and answer the following questions.
1) Why do you think the author wrote this story?
2)How do you think the author feels about raisins in his chocolate chip cookies? Explain your answer.
You are kidding me, right? So my kid is supposed to a mind reader? Why did he write the story? Because he’s got kids to feed and a car payment and two late notices from Sallie Mae. That is why he wrote the story.
Or this question from Wordly Wise:
Hans, with his odd ways and habits of staring off into space, was not like his fellow workers. They must have thought his behavior as very _______________.
Weird. Strange. Odd. Normal for 9 year old boys. Nope, you just missed 2 points. Wanna know what the answer is? Quaint. Yeah, bat shit crazy might also have worked. On many levels.
And then there is math. You guys. It’s like the gates are down, the lights are flashing but the train just ain’t commin’.
When I was in 4th grade in 1985 the question was something like this:
If a bird flies 20 miles in one hour, how long will it take the bird to fly 60 miles? Show your work.
And this is what the new math problems look like:
A bird flew 20 miles in 100 minutes at constant speed. At that speed: (a) how long would it take the bird to fly 6 miles? (b) How far would the bird fly in 15 minutes? (c) How fast is the bird flying in miles per hour? (d) What is the bird’s pace in minutes per mile? (e) How do you feel about Bird Flu? Use Guess and Check to solve each problem. Explain in paragraph form how you got your answer. Then perform an interpretive dance.
I don’t even have the bandwidth for such insanity.
And then there is AR reading goal. I’m fairly confident my obituary will read as follows: She loved rap music,Jesus, Pinterest and Blake Shelton but her kids rarely met their AR goal. The end.
First off, no one really ever explains to parents what the whole AR reading thing is even about unless you knock three times on the door and say the secret password which happens to be “Jesus Take The Wheel” and then you are given a three page excel type spreadsheet that is a series of numbers and percentages and told your kid took the STAR reading test to determine their Zone Of Proximal Development and then given those results in numbers with decimal points to indicate their current grade level, reading level and what books they are looking for in the library using the ATOS readabilty formula. And,at that point, you are kinda sorry that you even asked and sorta wanna drive your car off a cliff Thelma and Louise style.
And don’t EVEN think that just because it is three days before AR reading goals are due and your kids goal is 97 points and they have 3.73 points that you can go to the public library and get them some Clifford books to read to make up the deficit. Unless you somehow cracked the Dewey Decimal System, you are NEVER going to be able to figure out the reading level of the books at the public library and how they match up to your kids reading level and how many points they are worth and how many questions they are going to have to get right on the test to get those points and…… just wave the flag my friend. Elementary school Honor Roll is WAY overrated.
You guys, parenting is hard. Homework is even harder. Maybe we could just all band together to form a Parental Homework Support Group and every weeknight around 4:00 ish we could all say a little prayer for each other and send out positive vibes and all that jazz.
Maybe we could even help each other by posting the clue for #5 down in the science weekly and then asking all of our friends to try to help us to figure out what the depression, or low place, between the crest of waves is. By the way, the answer is obviously “trough”.
And maybe most of all, we could just stand and sometimes even bow our heads in solidarity with one another and not be so judgmental when my family is having Apple Jacks and canned Crescent Rolls for dinner because that 30 minutes of homework took three hours.
To all the parents, grandparents, guardians and such in the trenches of homework hell….I see you, I feel you and I love you. Mean it.
I am starting a new series on my blog called A Day In My Life because things happen to me on a daily basis that just are not normal. I don’t know why but they do and maybe you think you are having a bad day or a bad week or a bad century and if I share with you some of my bizarre moments you will realize that you aren’t alone in this big, sometimes sucky game we call life. So let’s agree to laugh about it together and know that we are all gonna be ok. I pinky promise.
For starters, there are a few things you should know about me. First, I was a Fine Arts major for a few years before switching to Human Services because…I mean…if you can’t draw a caricature of someone at Six Flags the next logical step is social work. Either draw them happy or try to make them happy, right?
Moving on. You also need to know that I have a freakishly good memory. Like Rain Man kind of stuff. I remember faces especially well and while this might sound like a gift, it is most certainly more of a curse at times.
A few weeks ago I was dropping some seriously over due library books off at the outdoor drop box because, obviously, when your books are that late you certainly never drop them off at the counter inside for fear your mugshot is on the Libraries Most Wanted poster. And that is where I saw her. I knew immediately as soon I laid eyes on her exactly who she was and exactly why I knew her and remembered her.
Back to my Fine Art major days…..
Part of mastering the arts is apparently the ability to draw someone in their birthday suit and so I had a whole semester of a nude figure drawing. Whatever basic assumptions you have about the types of folks that volunteer to be nude figure models in a college setting are probably spot on. That particular semester we had 4 regular models and then just to spice it up a bit, we would have “guest” models. I don’t really know why the regulars couldn’t show up that day, but apparently they had somewhere pressing to be that involved clothing.
On this particular day we were having a guest model.
Now, you don’t have to be Renoir to know that there are 3 dimensional objects that are easier to duplicate based on your vantage point. For example, it is typically significantly easier to draw the back of someones head than it is to draw all of their intricate facial features. The same is pretty much true of the whole body, especially the part that falls below the equator. To account for this, it was custom for all the students to enter the studio and be seated in a place they would not leave for the next 2 hours before the model came in and was positioned so that you couldn’t pick the “easy” spot. Sort of like naked body part roulette.
On this particular day, clearly the moon and stars were aligned just for me. Or fell out of the sky, it’s hard to tell. The model came in and I immediately noticed a few things about her before she even took her robe off.
One, she had a very interesting hair do. Imagine a really serious mullet but then rotate it about 40 degrees. Her hair started really short on one side but was really long on the other, sorta like a waterfall in a hurricane. Anyway, I wasn’t really phased by it and thought good for her for having the courage to step out of the box. And then light it on fire.
Next, I could tell even from under her hospital gown type robe that she was covered in tattoos that I recognized immediately to be Wiccan. Again, not my thing but I certainly was not there to talk religion to a naked woman with a crooked mullet.
The whole time she was getting herself up onto the platform and situated I was thinking to myself how much I hoped she sat with her back to me so I didn’t have to try to replicate her hair. So, of course, she got ready to sit down looking right at me.
There was no stool or chair on the platform this day like their usually was but I was so concerned with her hair that I hadn’t even really noticed. And then….. she took off her hospital gown and sat down on the platform right in front of me. And by sit, I mean in an overly open criss cross applesauce style. You guys.
So just to make sure you are with me at this point, I was going to spend then next two hours drawing a naked Wiccan woman with a sideways Kentucky Waterfall sitting Indian style but more in a yoga kind of way. Got it? Good.
I was thinking about how much this could not be my real life and then something else happened to prove that it was definitely just like my real life.
I’m going to try to give you as much detail here as I can while still maintaining a PG rating and not throwing up in my mouth again, but it will be difficult.
There are things that are just a natural part of the female reproductive system and a monthly cycle falls into that category. Look, I didn’t create it cause I am WAY smarter than that, but it’s just part of life. There are also different kinds of products that women can purchase to help out during this unfortunate time depending on the individuals preference. It is not something that you hear about that often, unless you are watching TV with your grandpa and then every tampon commercial ever made plays.
If you are a woman than I can pretty safely assume that you have used this monthly cycle as an excuse to not do something before. Not go to work. Not workout. Not go out with your friends. Not go swimming. Not wear white. You all know what I am talking about here and to be honest, your period is a perfectly good excuse for any and all of those things. You might also add to the list of things not to do while being visited from the menstrual fairy “no nude figure modeling”. Well, apparently she didn’t get that memo.
Because there she was, doing her best yoga butterfly pose with a string hanging out of her nether region. What kind of fresh hell is this, friends? Now not only do I have to figure out how to draw her Camero Cut hair do I gotta figure out if I should draw the string or try to pretend like it wasn’t there.
It was the most nerve wracking 2 hours of my life.I was so taken aback by the scenery that I ended up hardly drawing anything and not getting a good grade or being able to include it in my semester portfolio because I just couldn’t even wrap my mind around the fact that the whole debacle was even happening, let alone whether to use charcoal or graphite. I let one little string throw me completely off. For the love of God, I had spent half of the semester drawing a 78 year old naked guy with more hair growing out of his ears than ANYWHERE else on his body and I let this one thing potentially ruin my whole semester.
I’m not making any of this up. I couldn’t if I even tried. And you are probably thinking why in the H E Double Hockey sticks is she telling me this?
In the biggest stretch….. make that skydive leap out of an airplane without a parachute …. I’ve ever made to connect my everyday life and situations that I find myself in to that of the life of a Jesus follower I just need to tell you that sometimes you are gonna have to draw the string. The proverbial string of course, or at least lets all take a second to pray that is how it works out.
You are. You will have to draw the string. It isn’t fair. It isn’t right. Heck, i don’t even know if it is legal, but you are just gonna have to do it.
You are going to be tempted to look all around you and be jealous that other people get to draw the easy parts and you HAVE TO DRAW THE STRING. You are gonna get so tripped up on not wanting to even acknowledge that tiny stupid string that you loose sight of everything else.
Decide not to let it be a thing. Laugh about it if you need to. Throw up a little bit in your mouth if necessary. Curse. Cry. Be mad. And then get over it and draw it. Don’t even just draw it in pencil, you freaking get your glitter and your scented markers and go for it.
Everyone is going to have their own string moments and I can promise you that God, while he might have been hiding his eyes during my literal string moment, won’t turn his back on your proverbial one.
Draw The String
Love you all. Mean it.