An update with a pending update

So basically I still don’t know anything

Waiting.

We sent off labs a couple of weeks ago on Clark to test for a rare metabolic disorder called Hurler’s syndrome. The symptoms are vague in the first year of life, but become more apparent the older the child becomes. He has a few of the vague symptoms and early intervention is essential. Without treatment, children with Hurlers rarely live past 6 years old, and with treatment, some are living into their 20s. It is a life-limiting disease. All week my prayers have been that Clark does NOT have this disorder. I’ve been calling the lab directly to see if the results were in, and at 9:00 a.m. this morning, the lab confirmed that they were resulted. And now, I’m waiting.

Waiting for the doctor’s office to call me with the results. Waiting to know if our lives will be completely uprooted. Waiting to know if a timer has been set on my son’s life.

I’m scared to know what the results are. I’m scared to know whether my son will require a bone marrow transplant thus necessitating chemotherapy. I’m scared that I’ll have to leave my Darcy to be with Clark in the hospital for months. Some people say that it is foolish to “borrow trouble.” We don’t know if he even has Hurlers, afterall. But we will know today, and I’ve made plans. I’ve looked at different hospitals that treat Hurlers and offer bone marrow transplants. I’ve thought about how we can make it work living apart from one another as no hospital in Baton Rouge can treat this syndrome.

I’m praying constantly that this is not going to be a part of our story. Please pray with me, for guidance and strength. I will update very soon. Love to all ❤

There’s a lot of ugly here

My most brutally honest post to date

I’m mad at God. I mean, I am really, really pissed off. Let me back up a minute and fill you in on past events. As usual, prepare yourself for my rambling overshare–

Ben graduated! Yes, he really did. He graduated with his bachelor’s degree in Engineering. He had multiple job offers and accepted an awesome job before he even graduated. I. Am. So. Proud! We left Ohio with big plans and it’s happening, y’all. Ben has changed careers and has started work as a structural engineer as of Monday. I’m winding down my school year and have been re-hired as a PRN nurse on my old unit for the summer. I finished my awful research class. Basically life is awesome, right?

Then life throws you that curve-ball. I hate, hate, HATE to be cryptic, but I don’t want to share exactly what’s going on quite yet. I need another few days before I can confirm everything and share it with whatever readers may exist. Believe me, I hold no illusions of having this huge platform of captive readers. I’m not that into myself, so I can’t see that I have more than a few close friends/family member that actually have an interest in the Rayners’ going-ons. Anyway, I have this need to word-vomit– to get my anxieties out onto these blank pages and overshare. So here goes.

I’m worried. Why? Because I’m waiting on results again. Once again, I’m waiting. And I’m damn tired of waiting. I mean it. I no longer feel like I can wait in any manner that is socially acceptable. I cannot sit back and say, “I’ll know in God’s perfect timing, and that’s alright with me.” Because it is not alright. It is SO not alright. It is effing torture, and I am filled with fear and anxiety. I am also SO angry. I am angry that–once again– when life seems to be coming together that there is an insidious, lurking threat ready to destroy us.

I can’t pray this away. I alternate between feeling good and peaceful to feeling like the whole sky is falling down. Isn’t it, though? I don’t know how to deal anymore. I used to hit the pavement, you know? Throw on my raggedy tennis shoes and run until it hurt. That way I could at least feel semi-accomplished. Yesterday, I didn’t do that.

I googled worst-case scenarios, formulated hypothetical plans, and cried to my mother. I went to the grocery store to delay picking up my children. I grabbed a 6-pack of petit fours to binge on because I eat my feelings. My coping skills are 👌🏻. I then promptly dropped the box of petit fours onto the pavement while I was getting into my car, which should tell you exactly everything about how my life is going these days. I drove to daycare in defeat and then I carried my children out of said daycare, one in his heavy carrier, the other kicking and screaming because I wouldn’t allow her to continue playing in the water fountain longer than the 2 minutes she had already done so. This older woman (older than me by 20 years) was walking her children (grandchildren?) to the car. She stopped in her tracks, turned around and looked at me in disgust, and said, “Ugh. Y’all come on!” to her kids. Like I was an unfit parent for having a 2 year-old that was tantrum-ing. So, to you, 50ish, pudgy, short, dark-haired lady, “Screw you.” Seriously, though. Next time you look at me like that I will embarrass you soundly by saying, “Please offer me your *expert* advice since you are clearly not in favor of what I am currently doing. Please, do that. And in exchange I will share with you that the Carol Brady hairstyle went out of favor about 4 decades ago. See? We can help each other, you hag.”

Petty, I know. But I was not feeling like the bigger person yesterday. I wanted someone else to feel as bad as I do. I wanted someone else to worry and be anxious and understand the absolute hell I’ve been through the last year. I wanted to be understood. I wanted to enjoy the blessings in this life. I wanted to recognize all of the good, and I also wanted to be ignorant of the bad because I’m tired of knowing all the things and imagining worst case scenarios about the things, and honestly I just wanted to give up because I was so tired. The kind of tired that sleep can’t fix.

Truth be told, I have some ugly vices. I like to withdraw when I’m sad. I crave alcohol and isolation. And yet, because of Jesus and immense growth, I refuse to give into those temptations. Even though they’re there, they just aren’t that loud. I eat my feelings instead. Like yesterday, I ate 3 out of the six smushed-to-hell-petit fours instead. And have plans to eat the remaining ones today. I’m #healthy.

And, in the midst of my downward spiral–I’m reminded…that Jesus has not left me. That the moments of peace I have been blessed with are not of this world. The peace that passes understanding is a gift from my Jesus. My husband is a gift from Jesus, my children are a gift from Jesus. He loves my babies more than I ever could, and He has plans for GOOD. If I were the only human in creation, God would have still sent Jesus to die for my sins.  I don’t need to understand His ways. I just need to trust that He loves me, He is good, and He is sovereign. And if I step back for a minute, that’s pretty easy. It’s literally saying, “You are the God of all the universe. You hereby get to deal with this crap problem because I am tiny and human, and I cannot even.” And yes, I actually pray like that. I also say, “These are some shit circumstances, God, and I am majorly pissed off at you. Fix it, Jesus.” My favorite song right now, is called “Sparrows,” by Jason Gray. It’s based on Matthew 6:25-34. The chorus lyrics are:

“If He can hold the world, He can hold this moment. Not a field nor flower escape His notice. Oh, even the sparrow knows, He holds tomorrow.”

So there you have it. I am a sinful mess with poor coping skills. But I am okay with that. I am me. I’m still here. And Jesus loves me, the foul-mouthed and imperfect woman that I am. I will update soon. Love to all ❤️

Opinions are like butts…

Everyone has one and they all stink

The picture is of Darcy choosing her potty she has yet to use 🙄. Whatever. Anyway, this is a different kind of blog post for me, but lately I have realized that I really just don’t agree with a lot of things, and I decided to have an unpopular opinion post! Maybe it’s that I’m getting closer to being a real adult (i.e. almost thirty) and really knowing what I do and don’t believe in, enjoy, or even condone. Or maybe it’s just that most people are stupid and have stupid opinions. Me, obviously excluded. Hey, what’s the point of having your own blog if you aren’t the queen of it? Be gone, naysayers!

Unpopular opinions that I, Rebekah Rayner, have and hold dear to my heart.

1. Chipotle is not great. Yep. I know, as a millenial I’m supposed to be all, “OMG! Chipotle, let’s get extra guac!” But, I just don’t get the fascination. Their meat is kinda gross, and overall I think it’s overpriced and under-flavored.

2. I hate the over usage of ALL CAPS when promoting your AWESOME multi-level marketing product. While I realize it may be an AMAZING OPPORTUNITY, I just think the caps and multiple emojis look stupid. Stop it.

3. This here is a biggie and I am sure people will hate me forever–I don’t like publicized adoption fundraisers. There. I said it. Maybe it’s because I feel like there are go-fund-me pages for everything today. Maybe I’m bitter because I’ve paid for both of my children to have neurosurgery, multiple scans, and therapy without asking for other people to pay my bills. Maybe it’s because I am a self-professed cynic and question people’s motives. Probably a combination of all of that and other specific reasons I won’t go into right this moment. Anyway, a lot of things about it just turns me off.

*Edited to add that I LOVE adoption itself. Seriously I do. Just not fundraisers❤️❤️

4. Putting any sauce other than Polynesian or Chik-fil-a sauce on your Chik-fil-a nuggets is a straight-up abomination. You know who you are, and you are wrong, and you are ruining the Lord’s chicken.

5. While I enjoy my friends who are mamas, I’m not into mama groups. They tend to freak out over Every. Little. Thing. Oh mylanta. Your baby has a runny nose? It’s fine. Wipe it off occasionally. Your baby is only saying 6 words and they should be saying 8?! He fell down and cried?! Agh. If you are a laid back mom, we can probably be friends. If you run to the doctor’s office every time your kid sneezes or has a fever, we will never be friends. Most of this comes from being a nurse, but also I have worked with kids who are dying of cancer. Get your perspective straight, mama. He has a cold. He’s gonna get approximately 25641321568 more in his lifetime. It’s small stuff.

6. People who constantly talk about their special diets suck. I mean I would have never guessed you ate “clean” foods when every post has #cleaneating #wholefoods #healthy. Hashtag: Get over yourself. No one cares. That’s right, no one. They really don’t. They also don’t want to see your food pictures #chefstatus. Look, I’m a nurse. I totally get healthy living. Just try not to make it your God because while eating well can and will totally improve your overall health, it will not eliminate your chance of death. You will still die. So quit trying to say your kale brownies are just as good as my butter filled ones are. You’re lying to yourself.

7. I have not cried once watching “This is Us.” It’s a really great show, but I don’t understand everyone’s constant tear-filled status updates about it. I came closer to crying watching Glenn’s garbage can scene in Walking Dead. Also Kate is really mean to her mom, and it gets annoying. Be nice, girl.

8. I don’t agree with the whole “Mama needs wine” thing. If you’ve been living under a rock, it’s really this whole social movement now, filled with memes, t-shirts, and yes, even wine glasses touting the misery of motherhood and the MUST have daily “wine to put up with your kids’ whine.” Maybe I’m just more sensitive to those who may struggle with drinking, but I find the constant promotion of needing “mommy’s juice” distasteful.

*Sidenote–I am not against drinking. I really enjoy an occasional cocktail, mug of beer, or glass of wine. Nothing wrong with that. What I’m talking about is the greater culture’s attitude associated with motherhood and needing alcohol. It’s offensive.*

10. I don’t care that McDreamy died. I’ll explain. In the beginning, he had a wife and never told Meredith until said wife showed up looking like Cruella. Then he chooses wife over Meredith. They work that mess out, but he was a total jerk his last 2 seasons of Greys. He was hateful and unforgiving and punished Meredith forever for the clinical trial/chief webber’s wife thing. He was a total jerk when he was chief. Finally, he totally strayed even if he didn’t actually sleep with that lab assistant. Suddenly he has this “I actually love Meredith” revelation, they’re happy for one episode and he dies. Big. Deal. He was a tool, good riddance.

So, there. Now you can say what a negative person I am. But in the spirit of comradeship, I will give you some examples to show that I probably love or do several things that you kind of hate. Unpopular opinions, UNITE!

1. Starbucks. I’m probably supposed to hate the overpriced drinks and stupid naming of their sizes, but I feel sassy when I get a drink there. I also love lattes, and you will not take that away from me no matter what evil Starbucks perpetuates in our world.

2. I am very ambitious. See, I totally want to be the mom in the SUV who wears yoga pants, drinks her latte, drops her kids off at daycare, and then goes to the gym before meeting her friends for lunch. I would love to be *that* mom because *that* mom has it going on and is living life right. #lifegoals #divaaspirations

3. I love “Walking Dead.” Just like the rest of the world, but maybe you don’t.

4. I think politics is the worst part of our world. I also don’t feel the need to be involved. And yes, I’m aware that people will say that is my “privilege talking,” but I don’t really care. I hate discussing politics, and if you continually espouse your hard-right or hard-left leanings, I have probably already blocked you on social media. Not sorry.

5 I’m a touchy-feely person. I tell people how I feel, and I hug ‘em hard. Some people absolutely hate affection. I’m not one of those, and if you’re my friend, I’ll tell you I love you everytime we talk. I’ll mean it, too.

6. I double dip my chips. I’m courteous enough to get my own bowl of dip, but I’m a double-dipper because the dip is the best part. By dip, I mean salsa. Obviously.

7. I zone out on social media or playing on my phone all the time, just like baby-boomers accuse the evil millenials of doing. I’ve ignored my husband talking to me and allowed Darcy to clobber Clark while doing this. I’m working on it, but yep. I’m a distracted millennial.

8. I’m not into the hella long beard thing. A little scruff is okay, but the super long beards are gross. Like don’t come near me with that. Something living might fall out of it. Just ew. Also manbuns=🤢

9. I’m not wild about avocados. I mean they’re fine on or in stuff, but I’m not trying to make an entire dish featuring avocados. I get that they are a *hot* food, but I’d rather not have avocado deviled eggs or avocado toast. Ain’t my thang, y’all.

10. I totally overshare on my blog. Not much is off limits to me, so I have a hard time understanding super mysterious people. Like what’s your deal? Why are you standoffish. Are you hiding something? Why won’t you tell me things? Why don’t you love me?! See # 5.

11. I’m a Rodan & Fields convert. Can’t argue with results, y’all.

So there you have it! What unpopular opinions do you have??

Scooter-racing and egg-hunting all while I’m helmet-hating

The past few weeks have been  busy y’all. I’m currently on Spring Break, so like a child, I am out of school! It’s awesome! I’m not even gonna try to lie to make you feel better about your crappy non-spring breaky job. Be a school nurse, yo. Or spend spring break at work. It’s your choice, people.

This past weekend, we were grateful to go to my hometown and celebrate Easter with most of my family. My brother Caleb, his wife Lakon, and their 3 rambunctious sons joined Ben, Darcy, Clark and I at our parents house. My sister Anna and her three children already live in my hometown, so it was a full and fun weekend. On Good Friday, my niece Mary Mac had her birthday party at a skating rink that I’ve been going to since the early 90s. It was awesome because nothing has changed. Seriously. Not the paint colors, not the sound system, not even the smell. All of the kids had these walkers to help them skate. It was hysterical! They looked like tiny uncoordinated old people skating around with walkers. Even the babies like Darcy had fun. There were these little foot-propelled riding scooters, and the 2-year olds loved them. They actually made it look like too much fun, so naturally I had to try one out. I sat down on the scooter. My butt was approximately 2 inches off the ground which placed my knees right next to my ears–that’s how low to the ground the scooter was. I immediately decided I needed to race Lakon. Around the rink we went as fast as our little scrunched up legs could putter. Oh Mylanta. My calves! My loins! How they burned! I totally killed her though, I was so fast. So then Caleb decides he also wants to race, and Lakon told him to hurry up because I was tired, and he could beat me. She was right, man. My legs were done, and he absolutely destroyed me. Keep in mind this was happening all while Darcy was chasing after me, weeping,”It MY!” because I had stolen “her” scooter. Whatever, kid. 🙄 You own exactly nothing in this world.

That night we played 13-sol (a family card game) and drank wine and whiskey drinks. We made stupid jokes at each others’ expense and laughed a lot because we are hilarious. My brother is leaving soon, and it breaks my heart to have him far from me. Caleb is my best friend even though he cheats at cards, screams like a girl, and uses unfair advantages in baby-scooter racing. I love his guts, that jerk.

We were able to go to my hometown church’s Easter egg hunt on Saturday. It was fun, and Darcy was a beast at hunting eggs. My siblings and I always kinda sucked, but apparently my Jewish husband would do very well at his neighborhood egg hunt as a child 🤔 So, I guess she gets it from her dad!  We went to my church on Easter Sunday, and it was good for my heart to see so many faithful members who have prayed for my family and my precious baby. My family took up an entire pew!

Clark Elliott has gotten his helmet. If you follow me on the Facebook or Instagram, you have already seen that the helmet has only enhanced his devilishly handsome looks. He wears the helmet 23 hours a day and will likely wear it for the better part of a year. In the spirit of complete honesty, I hate that helmet with the fire of a thousand suns. I know, I just said it was cute, but I actually hate it. I want to press my face against his sweet cheeks and I only get to do that for one hour each day. The other 23 hours, my cheek rests against hard plastic. I know, I know. I should be grateful, but I think it sucks, and I hate the helmet. So there. Moving on…

Clark is just so, so sweet, and he has made SO much progress with physical therapy! His doctor said that he can’t believe that Clark is even the same baby as when he was born. I’d like to say it’s because I work so hard with him, but it’s all God. He has been working miracles y’all…and yet, I still doubt. For the first time ever, I really understand the Israelites. They saw Moses part the Red Sea, and they were delivered from Pharaoh! Even after that miracle, they doubted the Lord and built and worshipped idols shortly after leaving Egypt. The apostles saw Jesus raise the dead, heal the blind and lame, and yet they still doubted that he would return as he promised. I always scoffed at their disbelief. Now? I get it, man. You see, this past week, Clark’s awesome physical therapist noticed Clark was making some odd eye movements and notified our neurologist. Our neurologist wanted to see us, and she ordered an EEG to determine if Clark could be suffering from seizures. His EEG was normal 🙌🏼 which doesn’t completely rule out seizures, but it does make them less likely especially as no other symptoms have been noticed. Y’all I got so upset when his PT initially told me her concerns. I just felt so defeated. Like, “What is this NOW?!! Could I get a damn break, please? I mean, throw me a freaking bone” My beautiful husband was like, “Chill. We’ve been here before, he’s gonna be fine.” But I? I struggled. I, who have seen my son healed so much, still doubt that God plans goodness for baby Clark. One little setback–hell, potential setback and that negative thought manages to grow an entire forest of doubt in my mind. This total Eeyore-attitude then effectively wipes away my appreciation for all the good things that have happened and in turn magnifies my fears of what’s to come. It’s ridiculous and ugly and sinful. I’m working on it. Still could use a break from scary stuff, though.

Darcy goes to a Jewish daycare, and now she covers her eyes when she sees candles because she thinks they are Shabbat candles. It’s pretty cute. She covered her eyes for her birthday cake She also sings a song called “God is everywhere,” at daycare. So now she points to the sky and says, “God…is over there!” She’s listening and putting things together, y’all. Which makes the whole interfaith thing complicated. Not in a bad way…just a complicated way. She is both Jewish and not. And I’m thankful for it. She is special and our family is pretty damn cool. One of the greatest things about it is that it keeps Ben and I on our toes praying for guidance and reading. It’s interesting, but I’d rather it be our way than any other.

It is no coincidence that all of these happenings coincide with a renewed sense of purpose for me. God is leading me to explore the Scriptures in new ways. I’m not sure where it will lead, but I am hopeful and excited in a way I cannot remember having been before. I’ll keep you updated on that.

So that pretty much concludes this session of word vomit where you learn entirely too much about my family and our going-ons. If you’re still hanging in there, I’m glad you are along for the ride. Love to all ❤

A heart attack is NOT an emergency, people!

Or at least one hospital doesn’t seem to think so

My father is one of the most loyal men in the world–to a fault. He is moral, he is humble, and he wants to be cooperative, especially in medical situations. These characteristics I admire so much about him–except when he is a patient. You see my father has heart disease. He has had multiple heart caths, one heart attack, and multiple issues with the stents in his coronary arteries. My dad modifies his diet, works out daily, takes so many cardiac medications, yet his genetics are just crappy. It’s sad really. But worse than that, he trusts incompetent physicians. He is loyal, remember? And he doesn’t want to rock the boat, so when he goes to the emergency room at a particularly *awesome* hospital in Southaven, Mississippi, and they fail to provide even minimal care, he goes back, again and again. So, it’s partially his fault. The fact that the care is absolutely abysmal is not his fault.

I won’t go into past experiences at that hospital too much except to say that on one admission, the one in which he had his heart attack,  they made him wait 4 hours to get his heart cath because they are *so* awesome. WTF.

Well, tonight my dad experienced chest pain and shortness of breath. He feels like his stents must be failing and is probably right (he is very attune to his body) and returned to this craptastic hospital against my wishes because they clearly want to kill him. He arrived a little after 4pm.  They triaged him immediately, got an EKG, and asked if he’d had a dose of aspirin. He said he’d had his scheduled 81mg the previous evening. Then nothing. NOTHING.  A doctor came by, explained that they were very “backed up”, and that they would get to him eventually.  Two hours later, my dad had not seen anyone, and was experiencing increased chest pain and shortness of breath.  A nurse could not be found.  Finally, a nurse arrived and attempted to try and give my dad Aspirin–the first medication offered since his arrival–but the order had still not been put in by the doctor.  At this point my mother gave my father the aspirin from his home meds.  When the nurse finally returned, she was relieved because the aspirin order had still not been put in.  His EKG was now showing arrhythmias, but no worries, there was zero alarm on the parts of the medical staff.  Eventually, the MD arrived to review my father’s medical history and examine him.  When my mother started explaining that the details of a past admission had been documented incorrectly because my father had not been seen in an appropriate time frame similarly to this admission, the physician then said, “You know what, you are being very hostile,” said “I’m going to leave, and when I come back we can try this again,” and left the room without examining my father, who was still having chest tightness and shortness of breath.

At this point, I could no longer accept the incompetence of these medical “professionals” and called the hospital to speak to the house supervisor. I informed her that the “hostile” conversation had been recorded, and that I was concerned that the hospital had not come close to meeting core standards for chest pain. For those of you who do not understand what core measures are, they are national healthcare standards. They are not optional. They are are across the board standards and procedures you MUST follow to be in compliance with national standards. The supervisor stated that she would immediately look into it and called me back and informed me that the nurse had documented that the physician had seen them within 12 minutes of arrival (lie) and that he had been offered aspirin within 20 minutes of arrival but my mother had already given it…

Wut?

I informed the supervisor that it was truly unfortunate that the nurse had chosen to document fraudulent information as my family also had documentation as to the actual sequence of events as well as recordings of my mother being “hostile.” Yeah, Mavis is super hostile when she never raised her voice. While I was on the phone, the doctor threatened to call security. I almost wish they would have. You see, we aren’t crazy. My father is a dentist–an excellent dentist. He’s in line to be the president of the Mississippi Dental Association, and he’s the past president of the Mississippi Board of Dentistry. Not too shabby. My mother is an RN. My sister is an MD, I am an RN. We are not redneck, ignorant, or white trash. We are educated and fluent in hospital protocol, core measures, correct documentation as well as the responsibility of healthcare providers.

The physician returned to the room and said snidely, “Let’s try this again, huh?” And then proceeded to examine my father. This is four hours after his arrival for chest pain. FOUR FREAKING HOURS on a patient with a significant cardiac history and this physician begins his initial assessment of my father. And had the nerve to give a sarcastic, “Thank you,  ladies,” to my mother and sister when he glided out of the room.

So what if my family were not persistent? What if my family were uneducated? Would he have simply been ignored until he died? I bet, and I honestly bet that’s what happens to so many patients who walk into this ER and deal with this MD. So, here’s my advice to the people of North Mississippi:

  1. Do not go to a hospital in North Mississippi when you can jet up to Memphis and meet a competent ER physician.
  2.  Do not allow your family member to be ignored when they are having chest pain.
  3. Do not be afraid to rock the boat. People die when they are compliant to just get along. You MUST fight for your loved ones. Check out this statistic:
    • According to an NPR article, “Now comes a study in the current issue of the Journal of Patient Safety that says the numbers may be much higher — between 210,000 and 440,000 patients each year who go to the hospital for care suffer some type of preventable harm that contributes to their death.”
  4. Realize that not all physicians and nurses are created the same. Some barely scraped by in school and are actually not that smart. Even more are egomaniacs and will try to threaten you into submission.
  5. Document, document, document. Sure, it makes the healthcare team nervous, but you need to keep notes of what is going on and what your loved one is being given
  6. If all else fails, go and loiter at/around the nurses’ station. Nurses hate that and will literally do anything to make you go away #realtalk

People die when nurses and physicians do not do their job. Ask questions. Record interactions, demand answers. Doing so could save lives. Failure to do so, could lead to death. A nurse manager who has now seen my mother said that once a patient says they’ve had aspirin in the past 24 hours that you don’t give anymore. When my mom questioned that, she admitted that, “Well the nurse probably just didn’t know cardiac protocol and should have given aspirin immediately. We can use this as a learning opportunity!” Umm, no. Just…no.

My father is kind, compliant, and loyal to a fault. And tonight he was treated with scorn and derision by an egomaniac who is incompetent to care for even a beetle. And unfortunately for him and that particular establishment, I am a determined individual and choose to blast them on my blog. Which I never do, but as a nurse, it is my responsibility to protect patients. This MD has not heard the last from my family. I feel certain he will regret his cavalier, unprofessional, and ultimately neglectful attitude.

My blog is usually so uplifting (I hope), but tonight, I feel like I need to tell people a hard truth: If you go to the hospital, you are increasing your chance of death. If you don’t question the actions of healthcare providers, you are further increasing your chances. This is coming from a nurse. Love to all. ❤

The DMV, phone murder, and “Sh”

Boring occurrences in my newly boring life. Thank God for that!

Four years ago, I went to the DMV in Christiansburg, Va. I needed to get a license with my new married name, so that I could update my nursing license and have everything consistent. It was as bad or worse than any DMV in Mississippi. They wouldn’t accept my proof of address. I brought the envelope the Social Security Administration sent when they sent my updated social security card. Rejected. Apparently it wasn’t as official as the AT&T bill that was sent to my house with my name on it. The one I had to get out of line (after waiting 1.5 hours) and drive back home for, come back with, take another number, wait another 1.5 hours, and THEN hand to the dragon lady who approved it right way. Le sigh.

Anyway, since that lovely experience, I have successfully avoided the DMVs in Ohio and Louisiana…until this week. It was time for me to become a Louisianan, and that’s hard for this girl. Because I kinda resist belonging to anywhere new. Anywhere other than my little hometown. When people ask me where I’m from, I always say, “Well, originally I’m from a small town in North Mississippi, but I live in *insert Virginia/Ohio/Lousiana* now.” So maybe that’s part of it.

Nah. Let’s be honest, it’s mostly that the DMV is the devil’s playground. Filled with long lines, screaming children, coughing adults, and DMV employees ready to deny your paperwork and send you to the back of a line stretched all the way out to freaking Serbia. I was a big girl, though. I went. I got all of my paperwork together the night before and reserved my mother-in-law to watch Clark for the morning. I was going to get there well before opening (8:00), so I could be first in line. Then life happened. Clark took a long time to nurse that morning, the Clark drop-off took a little while, and I made a wrong turn on the way to the DMV. So, when I pull up it is 8:05 and there is already a line, 40 people deep wrapped around the entrance, and an additional 20 people seated on the waiting area having already checked in. Mother eff. That is exactly how I planned for things NOT to go.

From there it was actually pretty uneventful. I checked in, waited an hour and 15 minutes, almost had my proof of address rejected, then finally obtained my new drivers license. Honestly it could have been way worse. It was very boring though, because I didn’t have my electronic companion to distract me. You, see my new(ish) iPhone had suddenly stopped working. Yeah, it said “No service.” No matter what. This happened one month earlier and I had to pay a small fortune to upgrade early and get a new iPhone. And now this new phone that was crapping out in the exact same way as the old one did a month ago. I left the DMV and took it to Sprint where they told me that Apple had probably killed my phone. The second phone in a month. She told me to take it Apple to get it fixed. Ugh. So off to the Apple store I go where I signed in, walked over to the food court and got a pretzel and then came back to talk with some Apple person at the “Genius Bar.” 🙄

You see, I am so not into the hipster, blue ponytail, tech-savvy thing. Look, if mermaid hair is your thing, I don’t judge. I’m just not a very dubstep-listening, bohemian dress-wearing, free-bleeding,  hookah-smoking individual. I mean, I still don’t even know what the Cloud is much less what it actually does. And I have an iPod nano. And I wore the worst pair of mom jeans in college when you’re supposed to look totally hot. So, I’m not a trendy, “with it” person. So, the Apple store is like my personal hell because I have zero tattoos, and all I know is more gigabytes means more pictures of my dog and kids.

Anyway, they confirmed I had yet another dead phone, and then told me they had to send it off to Apple. They were going to give me a loaner phone for the meantime. Unfortunately the first two loaner phones wouldn’t cooperate with my SIM card. “Wow. That’s unusual,” Apple hipster said. “Um not for me. This kind of stuff always happens to me. I’m the black widow of electronics and technology,” I joked. “Don’t be so hard on yourself. Be positive! It’s not your fault. I will help you until you have a phone. Don’t blame yourself,” He replied very seriously. Soooo it was awkward because obviously he just didn’t get me and apparently thought I was something close to suicidal because he called over 2 other associate hipsters to help with my SIM and “soothe” me? It was strange. Whatever, man. Thanks for helping me out. I will be sure to be very serious when I pick up my phone–no black widow jokes.🤐

So there. I adulted hard by going to the DMV, Sprint, and the Apple store all in one day. Give me a cookie! My kids are the most fun lately.

Darcy talks non-stop and she puts an “sh” sound for s’s. So, cheese becomes “cheesh,” mouse becomes “moush,” etc. My favorite is applesauce or “appashosh.” She also LOVES to be bossy. Like she yells, “No! No!” at Libby while Libby is asleep on the couch doing nothing. She has started majorly stalling when it’s bedtime. Her nighttime routine: We always read 2 books, let her turn on her fan, say goodnight to the other parent and baby, rock for a while, then bed. Now she has to say goodnight to the other parent and baby and Libby and the TV and the lamp and the couch and the dust bunnies (for real) and/or whatever other object she feels like saying “night-night” to. Lately, she also has to “wash” her hands in her play-kitchen sink before rocking to sleep. It’s just funny to watch her stall. She’s officially obsessed with baby cock. Yeahhh. She’s changed from calling him baby *clicking noise* to calling him “baybee cock.” I mean, it’s not a sound, but does it have to be slang for penis?! 🤷‍♀️Whatever, man. It is pretty funny.

Clark is recovering from his surgery very well! He’s sleeping well, and eating well, and honestly you wouldn’t know he even had surgery except for the incisions on his head. He’s a velcro-baby though, just like Darcy. He NEEDS to be held 24/7 by me. Which is awesome except I need my bath at night to be away from the world and lately he’s totally screwing with that. I guess I’ll keep him anyway. SO that’s what’s new in my world. Pretty boring. I’m aware of that. But after the last few months, boring is nice. Love to all!

Coffee, neurosurgery, and the ability to hear

My second go-round with craniosynostosis

I didn’t prepare much.

With Darcy’s surgery, I prepared for days in advance. I bought the snap up/zip up onesies, I packed multiple bags, I gathered snacks, etc. This time I just couldn’t because I knew better. I can prepare all I want, but ultimately it doesn’t relieve my anxiety. Knowing Jesus is in control, and that “it is what it is,” tends to outweigh the fact that I packed the perfect onesie and have quarters for the vending machines.

The Friday before surgery we had baby Clark’s pre-op blood work done. Within an hour, the ENT’s nurse called me and said that his hemoglobin levels were low-8.7 and his wbc were low-4.6. Basically this means that Clark is anemic, and going into surgery, it’s not great to be anemic because this surgery involves significant blood loss, blah blah. We went back to the lab for a redraw to confirm results, and his pediatrician told us the surgery would likely be cancelled.

Agh.

I was so disappointed, and I called the neurosurgeon to see what the plan was. Her nurse told me, “Yes, *Dr. Whosit wanted me to tell you…Clark is anemic.” I said, “Yeah that’s what I’ve heard. When should we reschedule the surgery.” Confused she replied, “The surgery is still on. Dr. Whosit says it’s perfectly safe to proceed! Now, when they place the tubes in his ears, if they find ANY pus or evidence of infection, the neurosurgery will be cancelled because of the risk of cross-contamination. Until then, the surgery is scheduled to proceed as planned.”

Mavis (aka “mom”) came to Baton Rouge Sunday afternoon for support, and to take care of Darcy the night(s) we spent in the hospital. We ate Mexican and tried not to think much about the following day.

We woke up the morning of the surgery, ate chocolate croissants because they are delicious (thank you Trader Joes), drank all the coffee, played with Darcy, and took her to school as usual. We then turned around and headed to the hospital. Now, the surgery took place at the hospital I used to work in. I still work for that health system because the school nurse program is a subsidiary of their children’s hospital. Anyway, it was comforting to have the surgery take place there because it feels like home in that hospital. The people are great there, it’s a great hospital, and there is a CC’s located inside the hospital, so obviously that’s perfect. For non-Louisianans, CC’s is Louisiana’s Starbucks.

We got there, checked in, immediately finished up registration stuff, and then proceeded to Clark’s pre-op room. I’m pretty certain it was the same pre-op room Darcy was in. We changed him into his gown, new blood work was drawn to check his hemoglobin levels, and we played with the happiest baby we know. We met with his ENT, the neurosurgeon, and anesthesiologist for last minute surgical conversations and final consent forms. Signing the consent form sucked because I had to discuss possible outcomes for the surgery which included: hemorrhage, stroke, and death. Then I signed the consent form anyway, and we wheeled my little one down the hallway to the sterile hallway. They stopped the crib and told us this was the stopping point. I bent down, laid my hands on him and prayed that Jesus would protect him. Then I kissed his cheek and watched him roll away.

Within about 10 minutes, the ENT came out and said she was finished. She said she placed the tiniest tubes she had ever used. There was fluid behind each eardrum, but more significant was that one ear canal was completely plugged with vernix. Vernix is the cheesy looking stuff on babies’ skin when they are born. Somehow his ear canal got plugged up with it! There was no pus, so the neurosurgery could proceed.

Being flu season, there are signs EVERYWHERE throughout the hospital saying to go home if you have any symptoms of being sick. People, however, are inconsiderate idiots. There was a man in the waiting room coughing every 2 minutes. Without covering his mouth. It was that rattling, disgusting cough and I went to the desk to request a mask to throw in his face, but they were “out.” I couldn’t just sit there and get tuberculosis, so I went up to my old unit to see my old coworkers most of whom had been sending me encouraging texts already because they are so wonderful. When I get up there, they give me the sweetest card, a gift card to CC’s, and this walking dog toy that Darcy is completely obsessed with. I nearly cried. There really is no friendship like nursing friendships. I mean how many people will willingly help you place a flexiseal before going to lunch? Google that if you dare. Anyway, God really does place people in your life for specific reasons. I love them all.
An hour or so passed and I got a phone call from the OR. The surgeon was coming out to speak with me, and I needed to go sit in the conference room. Wow. It seemed too soon for them to be finished, and that was scary. Had there been a complication?
Both neurosurgeons walked in with big smiles and said that they were finished, it went perfectly, and the little booger was headed to the PACU! Clark required a big blood transfusion and FFP (fresh frozen plasma), but he was doing well and should be extubated (breathing tube removed) shortly.

Within 30 minutes we got to see little man in the PACU. He was so precious and sweet and perfect. He had the tiniest nasal cannula delivering oxygen to his little nostrils. One of my nurse friends came to the PACU to see me and it was so good to hug her neck! They transferred him to the PICU, and we went up to see him. Now that he was uncovered, I could see that he had 2 IVs, an art line, and a foley.

He was still requiring some oxygen but only 2L. I tried to nurse him, but he was completely gorked from anesthesia and too sleepy. A few hours later, he did nurse and it was good to hold him. I occupied myself with discovering Apple Music which is a BRAND NEW THING in my world 😲
My old coworkers, friends, and family can tell you that I am not tech savvy. At all. I still have an iPod nano. No music has been downloaded onto that bad boy since 2012. I listen to burned cd’s from high school and college on car trips. I had an Iphone4s forever. Like with the old-style charger that no one had when I was working 12-hour shifts. It was a dinosaur and I couldn’t even download the iPhone updates. So, now I have a semi-current iPhone and just discovered that for $4.99 a month, you can have unlimited downloads. What?! So yeah, I spent the next few hours downloading music while baby Clark slept, and Ben worked on homework.

The night came. And we had one very *awesome* recliner to share. I was exhausted, but every time I almost fell asleep, Ben would move or sigh or do something else equally aggravating. Finally, I told him if he moved again, I might kill him. So, he got up and went to the rocking chair that sounded like a cat getting its tail chopped off whenever the chair was rocked/moved even a fraction of an inch. Yeah. Not happening. I made Ben come back to the recliner, and he and I lay opposite of one another. Like my feet in his face vice versa. We fit much better than way and got some sleep. I woke up at one point because Clark was stirring, and his heart rate kept jumping to 130+. I nursed him, changed his diaper, and requested pain medication. He calmed down and slept well.

The next morning, the surgeons rounded and said that if Clark’s pain was controlled and he ate, pooped, and peed then he could go home! She asked us to pick him up and handle him well to see if pain was going to be an issue. We gave him some Tylenol, and he was just fine! Cooing and eating and playing. Better still, he could HEAR!

We left early afternoon, went home, and napped.
Two days later, and Clark is doing so well. He gets a little restless, but with medicine, snuggles, and lots of kisses, he is just fine. He will have his first helmet appointment tomorrow afternoon. They’ll measure his head and get him all fitted for his new accessory. He should have it within the next week or two. It’s been night and day from Darcy’s surgery, and I couldn’t be more grateful. Clark has had minimal pain, a short hospital stay, and wonderful care. My family and friends have been more than supportive, and I cannot thank them enough. Love to all ❤

I am perfect. Except when I’m not.

We can all agree that there are some days that we just KILL it. We are warriors. We are multi-taskers. We dust all the surfaces, and plan full, hearty meals. We can wear white shirts and not spill on them. Unstoppable, unbreakable, we are #flawless. And then there are the days that I choke on air and sneeze while eating Wheaties. If you’ve never done that before just trust me when I say it’s really bad. Like, real bad. So in honor of these moments, I’m going to share with you the recent ways in which I am #flawless and also the ways in which I am just the worst ever.

Flawless:
1. Did laundry completely. Even folded it from the dryer without waiting so long that we run out of clothes and have to get dressed from the dryer the usual length of time.
2. Took Darcy to the grocery store by myself, dealt with 2 meltdowns, and still got everything on my list.
3. Made those homemade doily Valentines with Darcy and did not lose my shit when she kept ripping them, sticking the stickers on the floor, and generally acting like a wild animal. I was serene and good and understanding mom.
4. I went on my first post-partum run! It was absolutely terrible, but I did it and did not die to death like I wanted to. Counting that one as a win.
5. Took Clark to 4 different MD appointments and did not collapse from anxiety. I mean, it was close, but I survived #meds

Worst ever:
1. I’m playing with Darcy, who is in a super fun mood. She has on these pink boots that she is in LOVE with. She constantly wants to put them on and take them off. She sits down, holds her feet out and says, “Off! Off! Off!” I decide to be funny and snatch them off her feet really fast because she thinks that stuff is funny. When I do, I pull her body towards me, she loses her balance, and smacks her head on the tile floor. Hard. I am a jerk.
2. While I’m facebooking on my phone, Darcy jumps on Clark and scratches his face, drawing blood. He still has the scab and I feel terrible because I am that distracted mom who is on the phone while her kid gets murdered in front of her face.
3. Well, this one involves a story…
After Darcy goes to bed, I generally retreat to the bathroom and take a nice long bath where I pretend to have zero responsibilities and google pressing matters like, “How tall was Marie Antoinette’s hair?” It’s a special time, y’all. Ben, however, has been studying like a mofo for his FE exam. This exam is basically his engineering license and enables him to work as an engineering intern when he graduates. Kinda important, and once Darcy goes to bed, Ben pops on his noise-cancelling headphones and hits the books. So, if Clark has needs (so dang needy) while I take my bath, Ben is occupied studying. SO, I nurse Clark to sleep, and I bring him in the rock and play into the bathroom with me. Cue, relaxation. Except Clark (needy booger), is not having it this night. Fussing, fussing, fussing. Totally killing the serene ambience I’m going for. I try to pacify him. He gags on the pacifier like it is 47 inches long and double-dipped in poison. I decide to just pull him into the bath with me because he loves a bath. It works! He’s happy, looking around, tra-la-la. I mean, I have to keep him from drowning, so my googling important things and general relaxing is kaput, but it’s a pretty sweet time. He makes these hilarious faces. Then he turns red. And KABLOOEY! The biggest poo of his life right in the bathwater–the bathwater I’m sitting in, naked. I screech, hit the drain, and quickly stand up with Clark. We have to vacate this warzone immediately. I mean, it’s basically a biohazard. I step out of the bathtub, immediately lose my balance, and slip. I manage to catch myself, but by doing so, I pull a muscle in my groin and apparently I clutch Clark’s belly too tightly. He responds to this assault by vomiting everywhere and screaming. Ugh, this is just the worst. “Ben!! HELP!,” I whisper-scream. Darcy is asleep. I do not want to make this worse by waking the beast. But Clark is already screaming so I join him and yell, “BEN! COME HELP ME NOW!!,” But you see, Ben has those noise-cancelling headphones on. He does not hear me practically drowning in Clark’s various bodily fluids, nor does he hear Clark screaming at his mother’s absolute failure. I wrap Clark in a towel and run out to the table where Ben is working. You should have seen his face. Wife, naked and covered in questionable fluids, thrusting a screaming, towel-wrapped baby into his hands. “Just. Take. Him. I’ll be back in a minute.” To his credit, Ben didn’t say anything at all other than, “Oookay.” I limped away and tried to reclaim my dignity of which is practically nonexistent at this point.

Lort, halp me. Send your angels to watch my kids when I am distracted and facebooking. Allow Clark to control his bowels when we are bathing together. Let me be serene-good-understanding-mom because I like her. Not sneezing-while-chewing-Wheaties-mom. She’s just sad.

So, let me hear it. Tell me about your ‘not funny at the time, but funny later’ stories! It makes me feel better when you are also the worst ever because I am not the bigger person who feels bad for you. I am the person who will laugh at your mistakes and let you laugh at mine. Laughter is everything, y’all. Don’t take everything so seriously. Love to all.

Is Clark Rayner actually Clark Kent? Asking for a friend.

Faith, lab results, and Jesus

Over the last two (plus) weeks, I have been reeling from our appointment with neurology. We were referred for his hypotonia, which literally means “low tone,” which basically means he’s floppier than your average baby. She also told us that she thought he may in fact have a clubfoot, and that we needed to have it ruled out by an orthopedic surgeon. You know, the specialist we were told we didn’t need to see by our OB, pediatrician, an OT, a PT, and 2 neonatologists. On top of the “clubfoot,” we were told he likely has either a mitochondrial disorder or Prader-Willi syndrome. You are welcome to google those, and what you find will not be good. She gave us orders to take to the hospital lab to have these labs drawn. She warned us that she was going out of the country for two weeks AND our results would take up to two weeks to process, SO we could expect not to hear anything until the first of January. Cue the giant sigh. Cue the,” OMG, why the eff am I having to wait again???” Cue the realization that, “Hey…I still have time to change God’s mind. To ask him to intervene…”

Enter the I’m-going-to-pray-like-I-never-have-mindset.

I have been praying day and night over my little Clark. Every time I nursed him. Every time I changed his diaper. Every time I fell in love with his fat cheeks which amounts to at least 1,000,000 times. You see, for months I have prayed for strength. But I changed my prayers to pray directly for healing from Jesus Christ. “Jesus, please heal my baby. Please let it not be Prader-Willi, but if it is—You are going to have to give me strength.” Over and over and over I prayed these words. I wanted to faithfully pray and beg God to heal Clark. If Jesus raised the dead, healed the blind, and walked on water, logically I knew he could change the course of my son’s life. I needed to pray this over my son with complete faith. Oh. And in the spirit of total honesty, I also had huge meltdowns because despite my faith in Jesus (ever faltering) and whatever anyone thinks, I am a completely weak wreck of a woman. I also had moments where I said it was completely fine whatever the outcome. Quickly followed by a meltdown. Which was usually followed by the sweetest text message, phone call, or e-mail. You absolutely know who you are, and Jesus used you to encourage me in times where I let my anxiety and distress overwhelm me.

Back to this week—

Tuesday, I called and left a voicemail with the neurologist’s office asking them to call me and let me know the results of the tests. They called Ben (not me) and said the results were not “in” and that they would need to call the lab where the tests were being run for the status of the results. No return call.

Wednesday, I psycho-dialed their office for 5 hours and left 2 messages, the 2nd of which was the most desperate message yet andddd I had Ben call them, too. I also called the lab directly and asked if the results were “in”—they were. I also asked for the results but they “could not give them.” FINALLY the neurologist’s office called back, and told Ben the results were in! And that they were unauthorized to give us these results. What in the hell?!  You have the damn results and will not give them?! Yep. Can’t because the MD was, “not in the office today.” 😡🤬

I. Nearly. Died. Of. WTH-ness. Cue major meltdown. Like meltdown so hard I ended up with migraine that incapacitated me for the remainder of the day.

A few minutes before 8:00a.m. today, Ben called me and told me that the neurologist’s nurse called him and said the tests were negative! He does not have a mitochondrial disorders or Prader-Willi syndrome.

Let’s recap. Prenatal: His genetic screening for trisomies and sex chromosome disorders was normal. Postnatal: His MRI of his spine was normal. His MRI of his brain was kinda normal. His cardiologist says he’s fine. His orthopedic surgeon says he doesn’t have a clubfoot. His genetic testing came back normal. His metabolic testing is normal. Specific testing for PWS and mitochondrial disorders is negative.

Jesus. Jesus. Jesus.

I can tell you right now that I am a doubting sinner with faltering and imperfect faith. But I can also tell you that God is healing my baby. Not all at once, and not in the quick and perfect way that I would like, but in His time and in His way. I probably don’t have to tell you, but deep down I have always been of the belief that God’s will is absolute and unchanging. That prayer is a platitude that makes us feel better, but ultimately changes nothing because the outcome has been decided by God. And God has taken this opportunity to show me that prayer can change everything, and I thought you should know that, too. And also that my baby son is like Superman. Love to all.

Even if the healing doesn’t come

Since I last posted, we have gone to the neurologist who absolutely believes Clark has a neurological diagnosis. Actually, that was one of the first things she said. She then told us his genetic screening came back normal 🙌🏻 BUT that it didn’t test for everything. And she had some very specific syndromes she wanted to test for. And the results from those tests won’t be back for–you guessed it–at least 2 weeks which puts it during the first week of January. She also told us that the MRI we were so excited about wasn’t normal “per se” and would require follow up for years. Ouch. Ouch. Ouch.

What does any of this mean? Believe me, I’ve been shaking on the gates of heaven asking for answers day in and day out (I don’t get a lot of sleep with a newborn). And I still don’t know what’s going to happen. It’s basically just more uncertainty, and when I first found out, I didn’t think I could take anymore. I haven’t even had the courage to update my blog. Maybe because I felt ashamed in previously proclaiming Clark’s having been healed only to be told “No. probably not.” Maybe I didn’t want to bargain with God anymore. There’s no sense in that, anyway. But I’ve had some time to digest the information, and I’ve come to several conclusions.

First of all, it’s not about me.

As much as I write about my thoughts and feelings, it’s really not about me. As much as the most selfish part of me wants to proclaim, “Why me?! This isn’t what I deserve. I’ve had my struggles, I’ve served my time!,” my whole purpose in this life isn’t to “get what I deserve.” It is to bring glory to Jesus. If I can accomplish even a fraction of that through this journey, then it will be worth it. Hard. But worth it.

I keep thinking about how this scenario has dragged on and on. No answers. Bad news. No answers. Worse news. Better news? Nope. Bad news again. And I’ve found myself holding my breath, clenching my jaw, crying alone in the bathtub just wondering when it will all end, so that I can be happy again. Today I had a small revelation–what if the point isn’t to grit my teeth and just survive? I mean, I have been. I’ve soldiered on, and kept living, kept working, kept schooling, kept momming, kept going. But what if that isn’t the point? What if it’s not how much I can take and survive, but how much I can take while I thrive? While I actively and intentionally choose joy? While I look at my son with awe and wonder instead of fear or anxiety because, “it shouldn’t be this way?”

This Christmas, I’ve been especially thankful for a different baby boy. The one who is King, who is Sovereign. The baby who freely gives forgiveness, healing, and hope of a life everlasting. I’ve kind of always wondered if He was still all that great when your life takes some craptastic turns. I can tell you in my experience He is. He is unchanged by our changing circumstances and attitudes. He is always good.

I still pray for healing over Clark, (oh do I), but I know that it may not be what God has chosen for his life. The importance of His plans outweigh mine and make Him no less good.

17 “If we are thrown into the blazing furnace, the God we serve is able to save us from it, and he will rescue us from your hand, O King. 18 But even if he does not, we want you to know, O King, that we will not serve your gods or worship the image of gold you have set up.” Daniel 3:17-18

Even if God doesn’t heal Clark, and the tests for syndrome(s) come back positive, and he has struggles all of his life, Jesus isn’t any less good.

So in light of all this news, which is disappointing in so many ways, I want you to know that I’m choosing joy. I’m choosing Christ because He’s all that makes sense in our ever-changing and uncertain journey. I’m choosing the joy of late night snuggles, and the refusal to constantly google syndromes. I’m choosing to rejoice in my endless blessings. I’m choosing to believe that God will equip me to handle whatever comes our way. And I want you to as well.

“Through it all, through it all, my eyes are on You, and it is well with me.” -Bethel Music

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