We have a tradition in our large extended family on Thanksgiving where we go around the room and each person says what they are thankful for. We don’t make our boys speak but this year Luke told us before it started that he wanted to say what he was thankful for. He has an incredibly sweet heart and he can pray like a Southern Baptist preacher, so I was prepared for something insightful and moving.
” I am thankful….that I’m hot”
This boy makes us laugh, makes us cry and makes us wonder how in the world we ever got so lucky to be his mom and dad. Over the last several years the boy has had so many challenges and he always faces them head on and with a smile on his sweet face.
As many of you know, we made the trip to St Louis about a month ago to see the neuromuscular specialists at the Neuromuscular Disease Center. Let me give you a little background first on how we got there.
Luke had a very normal early childhood, completely typical development and no major illnesses. Just two months short of his 3rd birthday, we got up one morning and he couldn’t walk. I would stand him up and he would fall right back down. He had lost complete muscle control in his legs and also had trouble sitting up on his own. Of course, we were completely freaked out and they admitted him to the hospital and began running tests, all of which came back normal. Within 24 hours he had regained the ability to stand and walk, although his gait was abnormal and he was still weak. A few weeks later he had an MRI and it showed there was a “spot” on his brain. It was explained as a thickening of the white matter in his brain and we then began the process of trying to figure out what was causing it.
Over the next year we would see a pediatric neurologist, rheumatologist, neurosurgeon and a few other specialists. Along each stop on the path, all the follow-up test that were run always came back normal. He was still having pain in his arms and legs but finally, it was decided that temporary paralysis and the MRI report were all due to a freak virus.
Over the years we still had concerns in the back of our minds but wanted to trust what the doctors had given us as an explanation. We still were seeing the lasting effects of the muscle weakness and then he was 5 he began complaining of headaches that started occurring once in a while and eventually became everyday. Along with the headaches, we began to notice that his eyes were dilating to the point where you couldn’t even see any of the blue part, just his HUGE pupil. That prompted a repeat MRI on Christmas Eve in 2010 and the MRI came back normal, the radiologists not seeing the previous spots that had been reported. We took this as great news, but we still had lots of concerns. Luke began a daily headache medicine and we did see great improvements in how often he was complaining about his head hurting.
As he got a little older and into school full-time, we became very concerned with his handwriting and how weak his hands always seemed to be. Again, the doctors ordered a bunch of blood work and everything came back normal and we were told again to just keep an eye on it. He has always been a very anxious kid and we noticed that often his hands would be very shaky, but we equated that with being nervous. As the school year ended and summer began, the shakiness wasn’t getting any better, in fact it was getting worse. Along with his almost constant hand tremors, he would get tired very quickly from any sort of physical activity. He began playing soccer and at the start of the game he was good to go but by about 10 minutes in, he could hardly run from one end of the field to the other and the whole time he was on the field, he was rubbing his legs like they were really hurting. Along with the headaches, the continuing crazy pupil dilations and shaky hands, he began to complain that his legs, feet and hands felt like they were “beeping” and then he began to complain that they actually hurt.
Back to the doctor we went and this time, our pediatrician ordered some more specialized blood work and a test that measures the levels of muscle enzymes in the blood came back very high. Our pediatrician called me at home on a Wednesday night and by Friday morning, we were in the pediatric neurologists office at Payton Manning Children’s Hospital. From there came more blood work and again the same thing we had heard all along, everything else was looking fine, so let’s just watch it and see.
In between that appointment and our follow-up appointment 3 months later, the hand shaking had become almost constant and his strength had significantly decreased from the physical exam just the few months prior. It was at that point that the neurologist suggested that we go to St Louis, as the doctors at Washington University were the top in the field and the clinic is funded and supported by the research of the MDA.
We made our first trip to St Louis expecting to get the answers we had been looking for, but instead really just came home with even more questions. Upon the physical exam, the doctors had several ideas as to what the underlying conditions might be. They ordered a bunch of lab work and later that afternoon he had an EEG, EMG and muscle ultrasound. The first of the two tests can be extremely painful and Luke laid on the table for both of them like he was laying on the beach. He had a repetitive nerve stimulation study done and the tech said most adults can’t withstand the pain and Luke barely batted an eye. Of course, for a parent, it’s a huge relief to know that he was not in pain, but at the same time, that is scary to see your boy laying on a table with needles stuck into his muscles and he doesn’t really seem to even notice.
As he had each of the tests done and as each one came back normal, nothing seemed to match up. By the time we had left to come back home, the doctors were just as frustrated and stumped as we were and we decided to wait until all of the lab work was back before we went any further, expecting that the lab work would hold the answers we were looking for as to why they would see all of the things on the physical exam and no correlation in the tests they had run up to that point.
Of course, all the lab work came back normal which is fantastic news, but it doesn’t give any answers as to why our boy is suffering so much. I had a great conversation over the phone with our St Louis doctor and it was then that he said this might fall into that 5% of cases where they aren’t able to diagnose because it is either just too rare or science isn’t advanced enough yet to test for it. By the way, those are not the words that you want to hear from the doctors that are the experts in the field.
We discussed where to go from here and along with some additional lab work, he suggested a muscle biopsy and a skin biopsy to test the fine nerve endings that might explain why he doesn’t feel much pain. While he was recommending that we go forward with the muscle biopsy, he was very clear about wanting us to understand that there is still a very good chance that we won’t know anymore after the surgery than we did before.
We were struggling to reach a decision because we didn’t want to put Luke through even more than he’s already had to deal with but at the same time, we felt like we would constantly be wondering if we didn’t. We ended up talking to Luke about it and trying to explain to him exactly what would be involved in the surgery and what he might feel as far as pain. We told him that we would do what ever he wanted, honestly expecting that he would say he didn’t want to do it. Instead, after talking about the procedure he said “I just wanna do it if it means there is any way they will be able to help me feel better.” How do you argue with that?
On Monday morning Luke and I will be leaving to head back to St Louis where he will be undergoing the muscle biopsy surgery early Tuesday morning. We have been waiting to get into see a new doctor for Isaak for almost 2 months and of course, it ended up that they were both during the same time, so Brett will be staying home to take Ike to the doctor.
We would love your prayers for the whole Patterson clan as we go into another stressful week. Our heartfelt prayer is that the test will show exactly what it is that is causing Luke to have muscle pain and to have all of these symptoms that are really interfering with his daily life. Our position has been along that we can handle anything, lets just figure out what it is and then we can make a plan on how to treat it.
As parents, we stood before our church and our family early in each of boy’s lives as we dedicated them to God and in those moments, we trusted Him completely but to be honest, it was easy to trust Him when everything was going well. The challenge has become trusting Him when it’s hard to see what His plan might be, but along each step of the way we are constantly being reminded that He is always and only good. We are thankful to have the support of such an amazing family and of great friends and we are most certainly thankful for the boy that continues to amaze us and inspire us.
And we are certainly thankful that he is hot.
Do you not know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. Isaiah 40:18-31
I really love this verse. I love the comfort that it offers, the assurance that it brings, but most of all, I love that it calls me out EVERY time. The truth is I don’t need anyone to feel sorry for me. I can handle that all by myself…..
Read the rest at Internet Cafe Devotions: When It’s Hard To Make Sense Of It All, His Understanding No One Can Fathom
I’m not really sure why it always happens to me?
It’s like crazy folk seek me out or something? Like I’m a lighthouse on the shore of dysfunction, a refuge for whack jobs. I don’t know exactly what it is, but y’all, just let a girl be.
For starters, everyone thinks they know me. I can’t go an entire day without somebody saying to me “I know you from somewhere” and then we play the game. Like Monopoly except for in the end, instead of the person who has the most money being the winner, it’s the person who is still awake. It always starts with them thinking they know me from somewhere I worked and then I tell them I don’t work and then it’s schools I never went to and places I’ve never been and people I don’t know. Eventually I have a headache from shaking my noggin and saying “nope” and they get bored with it long after I have and finally tap out. Not ready to admit defeat quite yet, they will say something like “I’m sure it will come to me” or “you must have a twin out there somewhere”.
Great line. Never heard it before. Moving on.
I might also need to mention at this point that I have a freakishly good memory. Like, I’m probably actually a genius or something and I just try really hard to play it down. I can remember faces of people who I had a class at Purdue with 10 years ago and meaningless conversations I had in middle school. Like a steel trap, baby.
Enough about how big of a deal I am in my own mind. There is a point to this.
I was at the grocery store the other day and the lady in the line before me decided it was time we become better acquainted because obviously me having my scarf pulled up around my neck, my head buried in my iPhone and me avoiding eye contact with her like she was a solar eclipse all led to her thinking I was open to new things. Just a beginning of her poor decision making skills.
It was pretty busy in the store and out of the 25 checkout lines, it became painfully apparent that I picked the wrong one out of the three that were actually open. Moses and Sarah in front of us had decided, in their late 90′s, that this would be the perfect time to experiment with new flavors and picked ONE of every pepper in the produce department, put them all in ONE bag and then proceeded to tie it shut 17 times.
This can’t be real life.
This, of course, posed a problem for the cashier who needed individual item codes for each pepper, and by the time Peter Piper and his bride shuffled their way to the checkout they had long forgotten where they were, let alone the name of each pepper they had picked .
But the cashier, at least 7 too many Red Bulls into the morning, wasn’t gonna let this little Mt St Helen’s in the middle of his day deter him from being overly kind and hey, since they were going to be spending the next 237 minutes together, why not try to trace their genealogy to see if their familial branches ever crossed?
Well, that’s cute but right now I was wishing I was never born.
Back to my new BFF. She started the game the way they all do. We did the “I know you from somewhere” dance and once we had thoroughly beaten that dead and now decayed horse, we somehow made the quantum leap to Black Friday shopping.
Maybe it was because we’d been in line for about 4 days and it made the lady think about Black Friday? Maybe she was just trying to make small talk and quickly ran the other 789 options she had through her mind and then landed on this one? Maybe she was hallucinating? Crap, I don’t know why she brought it up. It’s pointless to try to rationalize the choices of someone who is irrational. Like wearing a hat made of feet.
I thought that maybe if I closed my eyes really tightly and clicked my ruby Adidas heels and then opened them that she would disappear.
Nope. She’s still there. All I do is fail.
“Isn’t it a shame about all of these stores that are opening early on Black Friday just so people can trample over other people and ‘jew’ each other down to get something for nothing. (I’m quoting her, people) It’s a crying shame. Those idiots can’t even take one day to thank God for what they have. It’s a wonder the good Lord don’t strike em dead for being so greedy.”
Wait. Hold up.
We are gonna have to throw this crazy train in reverse cause I’m not sure I caught all of that.
Even worse, I’m afraid maybe I did.
Let’s just take this one step at a time. And instead of tip toeing, let’s do it like we are walking barefoot through fire that has been set on the stop of broken glass and really sharp nails. And spiders. On a tightrope over a shark tank.
Ok. First, Jesus was a Jew so unless you are using the phrase “jew each other down” to mean people are standing in line at Target and washing each other’s feet and turning one Market Pantry soft pretzel into enough to feed the 5,000, you might need to come up with a more appropriate term.
Second, you totally just called me an idiot and on some days that sort of thing might fly, but I’ve been standing in this line for so long that time has actually ceased standing still and literally began moving backwards and if you really wanna bring God into this, honey we can go there.
I,by no means, want to be responsible for blowing your little mind, but it is completely possible to love Jesus and Black Friday. I’ll stop there and let you catch your breath. Or maybe not.
I have a black belt in Black Friday shopping. I’m like a Black Friday ninja and while everything in my being is telling me to karate chop you across the windpipe and sweep your legs like Johnny Lawrence does in Karate Kid, it’s my love for Jesus that is shouting at me to resist.
I’m sure this is going to further wreck your mind, but I’ve been Black Friday shopping since I was old enough to have a check book and I’ve never been trampled or beaten up cause I grabbed the last Barry Manilow quilted throw. I’ve never seen a Black Friday fight (well, except that one and Macy’s and she totally deserved it) and the real Black Friday shoppers are quite charming and on a scale of one to hell with our current encounter being an 11, I’d take Black Friday over this any day of the week.
Of course this entire conversation with her was taking place in my head and I tried to count to ten before responding. And then went on to count to 70. And the more I counted the madder I got and I wasn’t sure if I should just walk away from my cart and leave or run her over with it. Or both. In my mind I began to whisper the name of Jesus, not sure if I wanted him to render both my mouth and limbs numb or if I should be praying for the rapture. Either one would be fine at this point.
In, what could only be explained as a miracle crafted at the hands of the Good Lord himself, Grandfather Time and his lady friend finally wrapped up their international hot sauce purchase and the line began to move.
But she was still looking at me, like she was going to be so polite as to finish her lovely verbal beat down/ conversation before taking her spot as the next in line. Clearly an exemplary model of class.
What am I supposed to say to her? Without directly saying it and maybe without her knowing she basically called me an ungrateful idiot, insulted my Jesus and she’s buying a barrel of cheese puffs the size of a 6 year old, which clearly contributes the what I already know about her atrocious decision making skills.
I’m still talking to myself and praying to Jesus at this point and just looking at her.
Take a deep breath, girl. Just smile and say something that wouldn’t need to be edited to make it PG-13.
Crap, she’s staring a hole through me and it’s her turn to check out so just say ANYTHING to make her go away.
So, I smiled and dug deep and all I could muster up was to quote my boyfriend, Blake Shelton’s wife and say “yeah, I guess is takes all kinds of kinds”.
I’m not sure where you will be around 8 pm on Thanksgiving night but I will have already had a nap, stretched and pounded a protein shake to prepare for one of my favorite nights of the whole year. Maybe I’ll see you there, maybe I won’t. But just in case I do, remember….”it takes all kinds of kinds”.
One of the most difficult tasks of parenting for us has always been finding the balance between preparing our boys for the world while, at the same time, letting them be kids and figure things out on their own and in their own timing.
With the Christmas season literally knocking on our door, we’ve been struggling with when it the right time to have “the talk” with our 12-year-old. No, not that one. The other one. The “Santa” talk.
He’s been asking questions about it, yet at the same time we think he still really believes and the last thing we want is for him to find out the truth from some kid at school and for him to be devastated.
By the way, if any of you are writing “Parenting a Preteen With Autism For Dummies” could you please include a chapter on Santa, The Tooth Fairy and The Easter Bunny? Thanks.
I tried dropping some subtle hints the other night while he and his dad were watching WWE Smackdown about how the wrestling on the show was “about as real as Santa” but it didn’t really register, clearly we needed to be a bit more direct. So here it is.
I’m sure you are probably wondering why we are writing you a letter instead of talking to you in person. Dad and I have something to tell you and it’s kind of a secret, so we wanted to tell you in this letter and then we can talk about it later. In fact, this letter is basically to tell you that you are now in the club. Let me explain.
You’ve been asking us questions for a while now and what we want to tell you is that Santa Claus isn’t real. Well, not exactly.
There is no plump fella that lives at the North Pole with little people and who breaks into your house to leave presents on Christmas Eve. No dude who has been watching you through the windows to see if you’ve been naughty or nice. Isn’t that a relief? The whole thing sounds pretty creepy.
There is no Santa Claus, the actual person, but the thought of Santa is still very real. In fact, during this season, all of us who now the truth get to be just like Santa. I like to call it the Santa Club.
The whole idea behind Santa is about spreading joy and being kind and giving. It’s about making sure that everyone is taken care of. It’s about doing small things and doing big things to show everyone that they are special and loved.
When we told you that Santa was real when you were younger, it wasn’t because we wanted to lie to you but because we knew that as a little boy, you weren’t old enough to understand the difference between Santa Claus, the man in the red suit, and the spirit of Santa Claus.
We are telling you this now because we know you get it. We know that you can understand that same spirit of giving because we’ve watched you be just like Santa. You have an amazingly generous heart and Dad and I have watched you over and over again as you have given your time and your own money to make sure that other people are taken care of.
When your buddy at school has a rough day and you know that he likes the same things you like and you create a package of cards to take to him at school the next day to encourage him, that’s Santa.
When you wait in the hallway on Sunday morning to meet our sweet preschool friend and to bring him into class and you sit on the floor and play cars with him, so he feels welcomed and special, that’s Santa.
We’ve watched you by gifts and pack boxes and write letters and send joy to kids that you will never meet just because you want to share with them the same joy that you have experienced on Christmas morning, that’s Santa.
And even more important than all of the things that you do that are just like the ways of Santa, they are even more like the ways of Jesus.
Maybe you haven’t realized it yet, but you have been part of the Santa Club for a few years now, and Dad and I just want to make it official.
It may sound like a lot of trouble to go to, to keep the Santa Club secret, but it is totally worth it.
Luke still believes in Santa, and that is perfectly fine. He’s not old enough to understand it like you are and we want to make sure that we keep the secret from him and from other kids who still believe until they are ready to join the club.
I’m sure you noticed this letter came with $10. It’s not to bribe you or to “buy your silence”, we trust you more than that. We want you to use this money to help create Christmas memories for someone else. You can use it on someone you know or we can help you to figure out a way to buy a gift for someone you might never know. And we want you to continue to think of ways that you can spread the spirit of Christmas, not just in December, but through out the whole year.
Also, remember that giving a gift doesn’t always mean you have to spend money on something. You have so much to give to others that will never involve you spending a dime.
We couldn’t be more proud of you, buddy. We love the kid that you have been and we are excited about the young man that you are becoming.
Oh, and one more thing……Welcome to the Santa club!
Mom and Dad