Code Purple, Davis House

 

3060f625dc7b32d2e88fc74af71563a6

I have seen a lot of things as a psychiatric nurse.  Six of my ten year nursing career was spent at a prominent hospital in Dallas.  This means that we were one of the hospitals that the police brought you to when you were picked up naked and obstructing traffic. Perhaps someone called the police reporting that he had six hostages, some of which he had already killed, in his basement, only for the police to show up to a man with a gun talking to people that weren’t there. And bless his heart, the poor guy didn’t even have a basement. He earned himself a VIP trip to our psychiatric emergency room. Hearing things in change of shift report with sentences like, “Pt ‘Bob’ (HIPAA and all) castrated himself on a camping trip” or “Don’t give ‘Suzy’ anything that can fit in her rectum” seemed totally normal. I guess that really is a relative term.  But we had a system in place at this particular hospital called a code purple. This meant anyone and everyone run to that location because somebody has lost their itshay and things are about to get real. You never knew what exactly you were running to but you knew it wasn’t going to be boring. It was honestly exciting and terrifying at the same time. It was also wonderful knowing that if I ever found myself on the wrong end of someone else’s wrath, help would be coming soon.

We are in serious need of a code purple at the Davis house. I may or may not be the one that is losing my religion because of the stress but it is definitely taking a toll on the whole family.  Let me explain. After 20 years of suffering from Ulcerative Colitis, my husband has decided to take out the beast that has tried to kill him and make his life a living hell.  He had his colon completely taken out. No biggie. I mean it’s just a colon, right? Apparently it’s kind of a big deal.  I felt the need to get the surgeon to take pictures of his colon to show me. I guess I wanted to confront this tormentor. We also found out that he has an abnormally large set of intestines. Of course he loves to tell the joke, “You know what they say about guys with big colons.” (insert eye roll) His friend, Nick gave the epic answer of, “they have big poops.”

Ok,  I’ll try to start at the beginning. I have been with my husband for 16 years. I have never known him without Ulcerative Colitis.  In the beginning, we were able to have periods of remission. For the last couple of years, there has been no relief. Every drug and natural remedy and diet known to man has been tried to no avail. The problem with this horrendous disease is that it affects everything, not just your colon. UC is an autoimmune disease so his body decided that his colon was the devil and it needed to go back to the pits of hell where it came from. Unfortunately, it brings lots of other body systems down with it.  As scary as it was, I was beyond ready to get the offending culprit out, ASAP.  But it’s not my body. Apparently I don’t get to decide. I had to watch him suffer until he decided the surgery was, in fact, worth it.

Although he should have been discharged a week ago, he has endured one complication after the next, LIKE A BOSS. I would rather give birth 10 more times with no anesthesia, while getting my toenails ripped off and simultaneously have acupuncture be performed on my eyeball than have to go through what he has gone through. He has not eaten or drank anything in over a week….except for the popsicle he manipulated some poor nurse into bringing him. The problem is he has a nasogastric tube from his nose into his stomach, set to suction to let his intestines rest until they decide to stop being assholes and work again…..see what I did there? He got his colon out?? Ahhhh I’m hilarious. But I digress.  The RED popsicle sits in the tube and makes the container look like he is bleeding out but he will still deny his rebellion. Even despite his red lips. I guess with all the man has gone through, he deserves a popsicle.

That army man I married has always been stoic. But the irony that his father went through this exact surgery at this exact age is not lost on any of us. He lost his dad to colon cancer 3 years later. This has been an emotional ride for his entire family.  Seriously, get your colons checked.

As we speak, his blood cultures have grown boogeymen, meaning he has an infection somewhere that has gone to his blood.  With all the tubes and hoses and instruments that have poked holes in his body, there is no telling where it originated from.

As you know, my oldest doesn’t do well with change. Having their superman in the hospital this long is hard to take. Homeschool has been disrupted, any type of normalcy is gone, and momma has to go see daddy and can’t figure out why he can’t go.  With all things considered, I am very proud of both of my kids. Our last therapist told us, “Never put a limit on progress.” I know this could have been so much worse.

This is what I have learned. I love my husband more than I ever even thought that I could.  Not just because he laid on a table for over 6 hours having a major surgery, or realizing how much I miss him when every single day is uncertain, or seeing what an impact he has on our beautiful boys, but because I have never been so proud of him in 16 years.  Trust me, he has done some pretty amazing things. But as I watch him as he has given his all in every aspect of this recovery even when he has nothing left to give,  it makes my heart both hurt and swell with pride.  He has never wanted anyone to feel sorry for him or think that his situation is serious. I’m pretty sure he told his job he’d be back this week. Lord Jesus, I hope they know what a total colectomy entailed and that he was full of poop…well not anymore….OMG I’m hilarious! All I know is that I want him home, by my side, every day for the rest of my life. Not that I didn’t know that before, but it is more vital and urgent now than ever before. God put me on this earth to love that man.  It is only secondary that I hate taking out the trash and cleaning the turtle aquarium. I swear those things are secondary.

I have also learned that my oldest little can pull through for you sometimes at the exact right time. Nevermind that it is probably because momma’s mood swings lately are terrifying…hey whatever works. The boy that wouldn’t allow me to leave the room has been left with my mom every single day during this poop storm that is my life right now. God is good.

I covet your prayers. Some people say they will ‘send good vibes’ but I don’t even know what that means.  Family has come from over a thousand miles away just to take a shift in the hospital or watch the boys just so I can.  That’s what real family does and I will never take that for granted.  We fight, but we love hard and we always stick together.  My friends have offered countless times just to bring me coffee or sit with me. Then there’s the friend who brought me food at 2 pm because she figured I hadn’t had a chance to eat that day (she was right). Love, love her. God has put wonderful people in my life since we have moved to Virginia and I am beyond grateful.

Emotions are running high and we are all about one catastrophe away from a code purple. I’m sorry if I am not returning texts or answering calls. I literally forgot the entire week last week that my 4 year old goes to school.  I went an entire day with silly putty stuck to my butt and knew it but didn’t care. My son just informed me last night that he hadn’t bathed in awhile. That assessment is probably accurate. Thanks again for the ones that have checked on us and please extend a little grace if I am extra grouchy or cry because I ran out of my favorite coffee creamer.  But do know that my husband is a rockstar and that he is the toughest man I know.  Thanks again for your prayers.

Update On My House Arrest

article-2027933-0D7D81D200000578-916_233x240

The setting is nursing school and the main character is a hypochondriac with anxiety and OCD. We will call her Courtney, because that is her name. In nursing school you learn about most disease processes, and as a person riddled with worry anyway, I undoubtedly had every disease we studied (with the exception of prostate, testicular, fontanel malformations, and maybe cleft lip/palate….yep, the rest were fair game). This hypochondriasis was not unique to me alone. My best friend was convinced she had AIDS without any symptoms or exposure. But this isn’t a blog about her so let’s move on.  During third semester (give or take, this is my story) I became convinced I had lymphoma. The symptoms, albeit vague, were there and my lymph nodes were, in fact, enlarged. No big deal, I’ll just go to the Dr and let them tell me how utterly ridiculous I am and I will then find something else to worry about. The kink in my plan started when the Dr agreed with my diagnosis and thought that my theory was actually likely! After a plethora of labs were drawn and a biopsy was done to find the culprit of my symptoms, I was told, “We will let you know the results in 2 weeks.” Two….WEEKS.  As the days grew longer it consumed my every thought to the point that, not only did I have lymphoma, but I was dying. Part of me knew this was ludicrous (not to be confused with Ludacris). But those thoughts set up camp in my brain just to make sure that any rational thoughts on the subject were redirected back to Crazy Town.

So one night I remember going into the bathroom to wash my face. I don’t remember being sad or upset but when I looked in the mirror, I had this crushing thought. This overwhelming dread and fear that I was dying. Newly married, in nursing school, never having kids.  As the tears began to flow, I became angry that my life was over before it even started. I literally kneeled on the floor, in the dirty bathroom (the military housing was super old and never actually looked or felt clean), with the water still running (sorry Mother Earth, I do better now at conserving water), and I sobbed. Like the ugly Kim Kardashian cry (My bad, I will never reference them again, forgive me). I prayed, “God, WHY?!?”

And as instantly as this cockamamie debacle started, it stopped. I was jolted to my senses and God said to me (not audibly but just as evident), “Don’t you trust me?”  I couldn’t move. I felt a peace that I hadn’t felt in months and I felt so silly for letting something consume my every thought that wasn’t even reality (spoiler alert, I did not have lymphoma). “Don’t you trust me?”

When you are in the middle of the battle, real or perceived, you think it will never end. When I cried day after day that God would give me a baby (that would stay in my womb)….He did. When my first born only slept through (up to) one hour at a time for the first year with no naps and a need for constant movement, I tried to accept my fate. This is it, I will never sleep again. But I did. When a heartache from a broken marriage consumed me and I just knew that not even God could fix this one. He did, and made it better. When a family member was so lost in the throes of mental anguish for TEN YEARS and I thought she was gone forever. Her mind was restored. When I fell into the deepest pit because I was a prisoner in my own home (read my other posts for our family’s autism journey)…I see light at the end of the tunnel.

This Saturday, we have a babysitter coming for the first time in a year and 2 months. This Saturday, I will be in the same room with my husband in the dead middle of the day, without my kids. And not only can I go to the bathroom by myself without meltdowns and fear and panic, but I can go freely from one room to the next without a single scream. This Saturday my son will not see me and will not even know where I am. With a hesitancy and an inkling of a tear, he proudly said, “I’m ready. I can do this.” This may not seem like much to you. But to our family, this victory is monumental.

I say all of this because I talk too much….Oh and also to say this… Mark 4:40 says, “Why are you so afraid? Have you still no faith?” Still after being pulled from the rubble so many times? Still after turning devastation into beauty? Still after He has proved His grace time and again….”Don’t you trust me?”

I don’t know what will happen on Saturday. Honestly, I don’t care. The progress we have seen is so huge that I am ecstatic knowing there’s hope. There is a way out of that pit. No matter how deep or how far you’ve fallen. “Don’t you trust me?”…..

Nothing says, “What a great mom!” like a child with a broken bone.

IMG_4798

My son just turned four years old and has broken two bones already in his short, little life. Now before you clutch your pearls around your neck, gasp, and call CPS, let me explain. Ok, actually, I don’t have an explanation. Not a good one, at least. The first was when he was 18 months and he pulled a huge, flat screen TV on himself. The second, was earlier in the week. I’m not sure exactly what happened because I wasn’t in the room. He said he plopped down on the bed and his arm was straight, “and it just crumpled and collapsed.” (I already told you about his vocabulary). So off we went to the emergency room as I wallow in my mommy guilt. I listened as the Dr asked my son if he was home alone and I saw the inspection for more bruises. They were just doing their job but this just pounded the guilt even further in. Guilt is kind of my thing. That and anxiety. I am super good at generating so much anxiety that I can make a chihuahua appear calm.  My guilt fuels my anxiety which puts me in this vicious cycle of insecurity. Guilt over not knowing what to do when my oldest is out of control. Guilt over my kids eating pizza AGAIN, while I’m sure ya’ll are over there feeding your kids kale smoothies and salad with non GMO, completely organic, 100% homemade dressing. Guilt over getting frustrated, again, for something I know is beyond my oldest son’s capabilities. Guilt that I try so hard, but can’t find the joy in the mundane.  Guilt that I can’t always savor every moment even though I KNOW one day I will miss this age, this stage in life. Guilt over not being the wife that my husband deserves.

God and I have been talking about this a lot lately, more than usual. Partly because I’m in a bible study which demands actually opening my bible. If I’m honest, I find it hard to just pick it up and read it. I used to get so annoyed when someone was asked what their favorite book was, and with their (no doubt) kale smoothie in hand, would answer, “The bible, of course!” (Eye roll, they need to get out. They probably aren’t readers. I bet they haven’t read since Moby Dick in high school.) But really, I was just jealous I didn’t feel that way. That’s why I adore my organized women’s bible studies. Well actually, it’s three reason. First, I grow closer to God by prayer and reading His word (novel idea). Second, I get to hang out with other women and have adult conversation. No one is going to ask me to make them juice, or fix their shoe, or wipe their bottom (thank you, big J for that). And the chances of me having to referee an argument between two women fighting over who gets a turn with the hulk lego (the one with BOTH arms) are slim to none.  No meltdowns or kicking or screaming. And when I have to go to the bathroom?  I just get up and go…by myself. I will never again take that luxury for granted.

There is something really cool about a group of women getting together to high five Jesus. Our background, financial status, number of Facebook friends, heck number of real friends, parenting style, numbers on a scale, hangups, etc etc…don’t matter. We all come to learn, from the study and from each other. Even if you’ve never owned (or even opened) a bible, or just finished writing your sixth book (with your kale smoothie) about the life of Jesus, it’s irrelevant to the purpose of the meeting. Which brings me to my third reason. Aside from my own growth, I get to see others learn and grow and it’s a refreshing, beautiful process.

But back to my God talks. I am struggling with the fact that my anxiety and guilt are so prevalent and real, but goes against everything that the Bible stands for. Insert my anxiety/guilt cycle for knowing this but not being able to apply it to my life.  I know that my identity should not be rooted in my circumstance, I get it. I know that my son’s cast or my neighbor’s eye rolls or my pizza dinners or my utter exasperation with my life as a mom, don’t define me.  James says to “consider it pure joy whenever you face trials of many kinds.” Slow your roll, James. I’m not there yet. I can’t imagine I will be saying, “bring on the chaos and turmoil” anytime soon.  But I know God can take the ugly, wretched, broken, steaming hot pile of mess that is sometimes my life and make it beautiful. He can turn the guilt and anxiety into mercy and grace and hope. But for now, for today, I will start little. I accept the fact that I am who the bible says I am. I will hold my head high in the grocery store as my child with his splint (cast next week) and my oldest are too loud and act like caged animals that finally broke free. I see your stares.  But I’ll try to smile from confidence knowing I don’t have kale in my teeth. That goes for my children, as well.

P.S. I actually love kale, but you get my point;)

 

An open letter to my neighbor.

images

Today I had a lady ask me if I practiced attachment parenting. I am not even sure what that is. Then I felt incredibly inadequate because I didn’t even realize people actually parent using a “method”, unless of course survival mode is a method. Then I’m all over it.  I just kind of wing it. I guess I’m the ring leader. Not in the sense that I lead the chaos. More that I try to corral the wild animals. I don’t always do that well. I try. Really, I do. But the truth is, I feel frustrated most of the time. I yell at my kids more than I should.  I don’t always play Minecraft with my biggest even if what I am doing isn’t that important. I let my boys jump on the bed because the occupational therapist said he needed a large trampoline to jump on every day. We just moved from Texas, y’all. It’s hot outside.  I sometimes tell my baby I can’t hold him because I am folding the laundry. I am pretty sure they ate potato chips for dinner one night last week. I am tired. I am exhausted, actually. The kind of exhaustion that sleep can not fix. I am weary. I feel ill-equipped for this whole mothering thing. I wake up every morning thinking this is the day I will not let the frustration get the best of me.  But then homeschool happens and it takes 20 minutes to answer one question because my biggest cant focus. 20 minutes.  Sometimes he says he feels out of control and writhes on the floor laughing, literally moving every part of his body.  Ya’ll those days, we are just not ready for public. Or at least public is not ready for us. So out the door they go. Run and be loud outside because we are all a little stir crazy. This basically means, my neighbor hates us. We share a fence which means they have front row seats to my crazy.  I would love to meet her and share recipes or whatever good moms do. But here’s the thing, they have already seen us at our worst.  Here is an open letter to Hannah (I have no idea what her name is).

Hi Hannah! I’m your new neighbor:) Yes, that neighbor.  As you already know, I have two boys. They are both great kids. My biggest little is funny and creative and spontaneous and brilliant and loves to do. He loves to ‘do’ anything, as long as he’s moving. My littlest little is sweet and loving and has the vocabulary of a college professor. He goes with the flow and is content and easy to please. I tell you this because you haven’t gotten the chance to see that side of them.  I know you’ve heard some strange shenanigans going on and I would love to explain. A couple of weeks ago when you heard me yelling at my son to get out of the pool and it was 50 degrees outside (who knows how cold the water was)? Well, he has sensory issues and doesn’t feel the same things that we do. He has always been the kid that refuses coats, no matter how cold. On that particular cold day, he ran outside in his underwear. I told him to go back in but sometimes he is in his own world and doesn’t seem to hear anything. I saw the wild eyed look and knew what he was thinking. My calm mom voice didn’t work and I was’t close enough to him, hence the yelling.  He jumped right in like it was a warm, 95 degree, sunny day and swam without missing a beat. I thought for sure I would have to actually get in to physically pull him out.  Did I mention he was spontaneous? I guess impulsive would be a better word.  He is a sensory seeker, mixed with impulsivity which means there isn’t a puddle he hasn’t jumped or laid in or wet paint he hasn’t put (at the very least)his hand in. He touches everything, really. He might even throw it. Just today he threw a cherry slush in my car. He loves a switch to flip, or something to be pulled down or pushed over or (his favorite) something that can sustain his weight so he can climb on it.  He drove a locked car through a busy, restaurant parking lot when he was 3. Jesus for real took the wheel that day;)Around that age, he pulled the water hose into our living room and turned it on full blast. But I want you to know my son is not bad, he has autism. He has a problem with cause and effect. He is still learning the consequences of his actions. Aren’t we all. And you’ve become acquainted with my 4 year old and his scream. I was hoping he would leave that blood curdler in Texas but no such luck. You hear it several times a day, I’m sure. One example might be that he is being repeatedly steam rolled by his brother. My big needs pressure on his body. He likes to be squished and begs for us to put couch cushions on him and put all of our weight on them (pretty sure I might have lost you on that one). He begs his bother to roll on him. He loves it and doesn’t understand why his brother does not.   You’ve witnessed (well, heard) my son’s melt downs that are alarming to say the least. You might have even witnessed some of mine.  I know it sounds like WWIII over here and to that, I would have to agree. It kind of looks like it too.  But if somehow you could look past that, we are a super fun family. My boys are adorable and will quickly win you over.  I would love for us to be able to talk, although I wouldn’t be able to offer quiet morning coffee on the porch. But if ever you are up for a rowdy, family game night and a killer lasagna, I’m your girl.

Sincerely,

Your New Neighbor

P.S. Sorry about the grass. Our lawn mower is broken, both of them. I promise we are working on it;)

What Autism is NOT….

Today, I meticulously worked with a needle dipped in paint to try to turn a regular Lego minifigure into Two Face. You know, from Batman. I worked on that dumb thing all day.  I proudly presented my finished work to my son, sure he would be overwhelmed with my genius artwork.  He stared at it blankly for a full 5 seconds then very slowly began to scrunch his cute little nose and then furrowed his brow. “Well it’s not good but I’ll play with it. Thanks, Momma!”  Really, kid? Did he really just say that?  A little part of me died. I wish I could say I was kidding but it felt just like it did in middle school when someone made fun of my shoes.  You see, my son has no filter. It’s kind of his thing.  When our realtor (who is also a dear friend that drove all the way from Indiana to Texas for us) was at our house, my son entered the room and broadcasted in his most polite voice, “You said he was coming over to talk about the house. You never said he would be here for 4 hours. Is he about to leave?” He’s a straight shooter. He tells it like it is without regard to your feelings because in his mind, he is just pointing out facts.  This is something that we will obviously have to work on. The boy does not have a future in customer service…or with the public (bless his heart).

DSC_0325

We are desperately trying to learn more about autism so we can meet him where he is and give grace when we can. But along this road, I have learned that there are a lot of misconceptions about what autism really is.  There are tons of great books out there on the subject. In short, it is a huge steaming pile of frustration with a side of guilt for not having all the answers. Maybe it would be easier if I tell you what autism isn’t….

  • A terminal illness. For the love of sweet baby Jesus in a manger.  I can’t even count how may people have responded to finding out my son had autism with a look of utter anguish, followed by, “oh my goodness, I am so sorry” (looks slowly into distance with head slightly shaking at the injustice).  He’s not dying. He is actually very healthy. His reality is just a little different than yours. Not bad, just different.
  • A bad word. Even his occupational therapist whispers the word like it’s the f bomb. Dudes! We are never going to foster acceptance if we continue treating this like a bad word.  Autism is not bad, just different.
  • In need of a cure. Friends!! I do not want to change my son. I just want what the rest of you want for your children, to be happy.  His brain is inspiring. He can do things with his autistic brain that leaves my neurotypical brain in the dust.  It takes all kinds to run this world.  I’m a nurse. It’s my passion. My son? He said he wants to make video games and be a paleontologist and an astronaut that lives in space. I believe he can. Not bad, just different.
  • Always fair. I get it. Life’s not fair.  Autism and OCD often times go hand in hand. Please hear me when I say this is definitely not the case for all children. The most common phrase I’ve heard since this diagnosis is, “If you’ve met one person with autism, you’ve met one person with autism.”  But for my little one, he has had to endure more fears and anxieties than any 6 year old should have to endure. The constant need (not desire) to have things a certain way, are overwhelming for me, but gut wrenching for him. Despite his distress, he is brave. He describes his brain in terms of shakiness. He says sometimes it shakes violently out of control and sometimes it just sways. But it always “feels like it’s on a roller coaster and there are lots of sharp turns and I’m always moving.” He says things like, “this world isn’t made for me, momma. Other people understand what’s going on and I don’t. People get mad at things or laugh at things and I don’t know why. Sometimes I say things but you hear something else.” In some ways he is far beyond his years. Not bad, just different.
  • A stereotype. My husband has been in school since I met him 15 years ago. That is only a slight exaggeration. He has also changed his major a minimum of 1,205 times (truth).  Right now he is trying to finish an english degree. Because that helps you as a financial advisor (????). But I digress. In one of his classes, he wrote a poem about his two sons. Everyone in the class had to respond. One lady said, “Oh your son has autism? Those are some of the sweetest kids in the world.” Nope.  That’s not really their method of operation. If in doubt, see first paragraph……

All I want is acceptance. Just.The.Way.He.Is.  Some of you may see the world clearly, others through rose colored glasses. My son’s glasses are more like drunk goggles (google it, it’s a thing). But being that awesome despite his diagnosis is hard to do. And he does so beautifully.