This is weird

Life in the face of a global catastrophe

Hey y’all! Life is weird right now, isn’t it? Louisiana has been under a shelter-in-place order for a couple of weeks now because our state is basically a giant dumpster fire. I’ll talk about the corona mess later, but for now, life has gotten pretty interesting.

  1. Probably three of you will see this post because I am not posting it to my Facebook as I am currently off social media. I gave it up for Lent, and I am trying to observe Lent as a good Catholic would because…
  2. I am becoming Catholic. It’s been a big journey for me. I certainly don’t mind talking to you about it if you wish, but for the sake of brevity, I’ll just tell you that it’s been a long time coming, and I’ve never been more sure about something. I’ve been going to Mass off and on for years, and I officially started RCIA classes back in September. Unfortunately ole corona has thrown a huge monkey wrench into my official entry–all masses and classes have been cancelled (sorry, Jesus), but that’s okay. I’m content to wait, pray, and study. Also…
  3. I got a job! I accepted a job in the ER at a big hospital as a nurse practitioner. I accepted this job the first week of March. Within a week, the U.S. went cray which is actually pretty par for the course for my life (i.e. chaos reigns). Despite all the uncertainties in our world and the risks involved with the job, I am SO EXCITED! I feel like this is an incredible opportunity for me, and I cannot wait to get started which is May 1st.
  4. Ben and I went to Italy. Not now (calm down), back in November. We left our kids stateside, spent the money, and just went. It was amazing, and we had the best time ever. We would go back now if it weren’t for Covid-19.
  5. I can’t help but say “Covid-19” to the tune of “Come on, Eileen,” and I’m annoying myself.
  6.  Teachers don’t get paid enough. I feel like nurses/doctors/healthcare people are getting a lot of attention, but y’all. You are the real MVPs. Case in point, I was reviewing numbers with Darcy yesterday. She wanted to practice them, and I have these makeshift flashcards. Darcy generally recognizes numbers 0-9. The following exchange is exact and has been unchanged for posterity’s sake:

Me (holding up a 9): “What’s this number?

Darcy (confidently): “Six.”

Me: “No.”

Darcy: “Seven.”

Me: “No.”

Darcy: “EIGHT!”

Me: “Ugh, no! It’s a nine, Darcy.”

Darcy: “I AM PRACTICING MY NUMBERS, NOT YOU!”

Me: “Well, then you should get the numbers right, and I won’t have to tell you the answer.”

Darcy then gives me a sarcastic “WuT” type shrug that made me want to throw the flashcards. Y’all. I can resuscitate people. I can jab the needles and give the medicines and witness all the grody and horrific things, but I absolutely cannot do this flashcard, letter-tracing, teaching thing. More power to you, teachers. I love ya.

Corona. Initially, I really thought it was nothing more serious than the flu. Unfortunately, I was wrong. It’s a big, freaking deal. My nurses are struggling with weight of being on the frontlines. My physicians are struggling. My amazing respiratory therapists. They are all struggling, and they need your help. We are fighting a war and as healthcare providers, we are fighting on the frontlines. Sadly we are fighting an invisible, microscopic agent, and we are fighting it with insufficient supplies and incomplete information. As sweet as it’s been to see the accolades and thank-you’s, I think most nurses and healthcare providers want your understanding, compassion, help, and prayers. Understanding for the absolute hell they are going through on a daily basis. For when they come home at 9 a.m. and pour a stiff drink because the last 13 hours have been so much. Compassion when they cry instead of verbally respond when you ask “How’s it looking?” Help. We’re asking for your voice! We need more supplies. You wouldn’t send a soldier to war without a gun, and it is absolutely ludicrous to send a nurse to battle this virus without appropriate PPE. It’s inexcusable. Help us with your voice as a call to action. And last, but not least for your prayers. God is powerful, He is almighty, He is Lord, and He is Sovereign. Your prayers are heard by the Almighty and have a far greater impact than your armchair-quarterbacking the government’s decisions.

Don’t lose your humanity. Your neighbors and the strangers in the grocery store are not your enemy waiting to infect you. Now keep your distance, wash your hands, and don’t touch your face, but also, please don’t lose your sense of compassion. We are in an unprecendented time in which our independence and free will is being restricted. That’s hard. But it doesn’t mean that we should become reclusive, selfish assholes. Help where you can help and love on people from a respectable distance- six feet, please. Make the phone call, send the text. If you’re feeling ambitious and homemakery, make an extra loaf of bread for your neighbor. Lord knows you’ve got the time. Show up the only way you can right now because now is when it matters.

Thankfully, our family belongs to an amazing synagogue that goes the extra mile and is really, really great at doing this stuff. Make sure your family, your friends, your circle, your house of worship–WHATEVER is doing this good stuff. Our actions are what we’ll be remembered for, so make a positive, kind impact. You may change the course of someone’s life.

“Perhaps this is the moment for which you have been created.” Esther 4:14

Stay safe out there. Love to all ❤

 

 

 

Riding that Struggle bus

Last night I dreamed that Clark had to have a re-do craniosynostosis repair surgery.  I remember not being exactly sure why he had to have another surgery, just that it was going to be an open repair involving a craniotomy (removal of top portion of skull). Isn’t it strange how strongly you feel emotions while dreaming? I was terrified and angry. “Haven’t we been through enough? Haven’t I served my time with craniosynostosis, two times over?!”

I woke up with a start. Clark is not having another surgery. Today IS Clark’s cranioversary–the 2nd anniversary of his craniosynostosis surgery. Maybe that’s what brought on the dream/nightmare. But, maybe not. You see, our lives are finally “calmer.” Ben is no longer commuting to Thibodaux or New Orleans. He has a job in Baton Rouge with better hours, etc. Darcy and Clark are well and without major health struggles. I’m finished with school, and I’m picking up shifts while working PRN in the CICU while looking for a job as a nurse practitioner. And there it is. The source of most of my stress. Job. Hunting.

You see, despite the shittiest of circumstances, I did really well in grad school and ended up with a 3.85 GPA and honors. I passed boards within a month of graduation on the first try, and I even had an interview within that first month window. Then…nothing. I’ve lost count of job applications and reaching out to my “contacts” with no real result. It has 100% totally sucked, and this past Monday I had a real come apart over it. “What the hell, God? Why have you brought me this far for nothing?” I mean, my student loan payments will be knocking on the door soon, and I feel like I’ll still be working PRN on the unit instead of working as a nurse practitioner. It has been incredibly disappointing.

In the grand scheme of things, I realize that this is not a great tragedy. My children are healthy. My husband has a really great job. Hell, I still have a job. One where I make my own schedule, work with my favorite dysfunctional coworkers,  and earn decent money. But, it’s not enough is it? We always want more, feel entitled to more. I don’t know if any of you are similar, but I often find myself reaching for the future and gambling away my present which is a frustrating and self-destructive way to live. I know this, and yet I do it over and over again. And yes, I know that a job will “come along” as so many people are quick to tell me,  I just truly hope that it comes along sooner rather than later before I go completely crazy.

In the mean time, I am deep cleaning my house,trashing, I mean…organizing the kid’s toys (I’m looking at you, useless, plastic party favors), running/exercising, and cooking all the things to undo my exercising. All that nervous energy has to go somewhere, right? Clark is crawling everywhere, trying to pull up on everything, getting into everything, and throwing temper tantrums like a typical 2 year old. He has also become quite the biter when he’s pissed off or excited–two emotions he cycles between with great regularity. He looks so sweet and cuddly, but you are absolutely risking your shoulder flesh if you give yourself over to his snuggles. Don’t say I didn’t warn you. Darcy is so…much. I mean, she’s a lot. A LOT. She is so precious, and so funny, and so sweet, and so argumentative, and so frustrating, and so challenging. It’s intense. In the cover photo of this blog post, you’ll see a barefoot Darcy. This was her class picture (a picture of a picture-hence the quality), and I am at least 75% certain that I sent her to school wearing shoes, but whenever I ask “Darcy, why aren’t you wearing shoes in this picture?” she says, ” I’m not.” So there you go 🤷🏼‍♀️ She is currently obsessed with rainbows and princesses, despises bugs,  and is a stereotypical little girl. She also says that she wants to marry Ben when she gets older and “live with mommy and daddy forever!” I know, it’s unbearably sweet. I’ll remind her of this when she turns sixteen and we become the biggest idiots she’s ever known.

In conclusion, I feel God telling me to be patient. He’s not in a hurry, I am. And I just need to slow down and enjoy the time I’ve been given because I’m not guaranteed anything more than the present. We should all remember that. So, I’m going to catch up on Netflix shows and try out fun recipes, and go to the lake with my family. I’m going to pray more and worry less. Also I’m going to order a king cake from Thee Heavenly Donut. No, I did not misspell that, so quit with your judging.

That’s all for now. Eat some king cake because Ash Wednesday is in one week and Ash Wednesday=No mo king cake 😦  Love to all ❤

 

 

Lordhamercy

Or how a trip to the doctor ended in a CT scan

First of all, hello readers! I have been MIA. Finishing school, struggling financially, mentally, physically. So basically the same as before! Anyway, in the spirit of “keeping it real” I want to share today’s events, but I’ll have to back up a bit so you get the fullest picture.

So last week was crazy (as usual for our fam). I was rushing around trying to get my scholarly project manuscript edited, printed, and submitted. I was also trying to apply for my APRN (advanced practice registered nurse AKA nurse practitioner) license AND submit my certification paperwork. Also, I was trying to study for boards and feed my kids that are always hungry, etc. Clark threw up a couple of times, and was stuffy and snotty, but I was pretty sure it was just viral, and he was fine. Anyway, Saturday rolls around and I graduated! I graduated, y’all. I have a Master’s of Science in Nursing degree and will be a certified Family Nurse Practitioner as soon as take and pass my boards. Eeeek! I digress. Anyway, Sunday I woke up not feeling awesome. I was coughing, but Darcy had been coughing directly into my eyeballs for about a week, so I figured I was getting that. Sunday night my throat was scratchy. Monday morning I woke up feeling like I swallowed razor blades, and Darcy threw up on the couch. That morning was shitty to say the least. I had to keep Darcy home all day while I was in and out of fever basically using Disney+ as a babysitter. Ben finally got home that night and said he also felt terrible.

The next morning I went to the doctor–I had strep throat. WTH. I have never had strep in my life (that I can remember). I had my tonsils out as a child and have never had issues. So, then I started thinking, “Duh. Both of your kids have strep, too.” They haven’t run fever, and Darcy hasn’t said her throat hurts, BUT both have had decreased appetites, vomiting episodes, AND Darcy complained of a headache the other night. I had brushed it off because they were also both snotty and coughing (not generally associated with strep). So, I took them to the doctor this morning even though both were perky acting and looked “well.” Darcy freaked the eff out when they swabbed her throat, so the doctor gave her a sucker for being “good.” Darcy needed a hug, and I didn’t want Clark to sit on the floor and contract whatever virus he hasn’t yet had. So, I sat Clark in the chair and turned around to open her sucker. SMACK. He fell face-first out of the chair onto the hard floor. Immediately he screamed and had a GIANT blue goose-egg. I picked him up and walked out of the room to tell the doctor that he fell, hit the floor, and that she should shine my trophy for ‘Mom of the Year.’ She came in to inspect my hysterical baby and also to confirm my suspicions–they were both positive for strep. She said she thought Clark was okay but wanted to watch him for a bit. She brought me an ice pack. Clark continued to cry, and I frantically called Ben to let him know why he should divorce me immediately. I called work to call-in AGAIN (second time this week) because my life is a regular shit-show. Mom guilt consumed me. Why had I put him on that chair? Why hadn’t I told Darcy to wait. Why hadn’t I just sat down and held Clark while opening the sucker? Why do I suck at this?

Clark continued to whimper and cry. The doctor came in to check on him and he gagged like he was going to be sick. She told me that she was concerned enough to order a CT scan to ensure there wasn’t a fracture or brain bleed. She ordered a stat CT and away we went to radiology. In the waiting room, I started tearing up and quickly swiping them away so Darcy didn’t see and get upset. Looking for a distraction, I got out my phone and I realized I got a FB message from a college friend who told me she was praying for me, and that I was an incredible mom. Melinda, that meant the world to me in that moment, btw.

My mind quickly went back to guilt. What if he has a brain bleed? My sweet baby who has been through so much? Injured due to my mistake. He’s already had to have a CT scan before, and it’s a lot of radiation. Mom guilt, mom guilt, mom guilt. Thank God for iPhones because I put “Three Little Pigs” on for Darcy so I could hold Clark’s hands during the CT scan and keep him calm. He did just fine and even smiled at the technicians. We went BACK down the hall and did the walk of shame by the nurses station. They were very sweet, but still. Mom guilt, y ‘all. The doctor came in and said Clark was okay, the antibiotics had been ordered, that Clark probably had a mild concussion, and to watch him closely the next few days.

So, there you have it. In the last few days, I have posted some fun pictures of my graduation and a sweet picture of Ben and Clark on social media. I could post one of Clark now, but it’s very pitiful, and I’m really not trying to garner sympathy votes. Sometimes it seems like days like today happen in my life with unfortunate regularity. Not the head trauma/CT thing, but the throw up, sickness, forgotten doctor appointments, calling into work, burning supper, locking keys in the car, forgetting kid’s lunches/diapers/school supplies kinds of things. Life is filled with strep throat and the mundane. I haven’t been the perfect mom today (OBVIOUSLY) but I did give them a dose of medicine, feed them, and stress-clean all surfaces of the house.

This is not intended for sympathy or “poor-you.” I just want to assure you that if this holiday season is filled with mishaps, mom-fails, and ugly stuff–you aren’t alone. You’re not. And someone always has it worse. Truly, they do. That doesn’t minimize your struggle, but it should put it into perspective. I am so thankful that Clark is going to be okay. I am so thankful to be finished with school. I am so thankful for a husband that doesn’t want to divorce me for letting Clark attempt baby-suicide. I am thankful for friends who support and lift me up when I feel especially undeserving. During this busy season, take the time to be the light for others. Be kind. Be understanding. Be generous. And don’t sit your baby on chairs in the doctors office while you open your hysterical daughter’s sucker.  Lordhamercy.

 

Tumbleweed shoes and other stories

The summer is basically over , and we are getting back to school! It’s been bittersweet because I’ve kept Clark home with me all summer, and now he’s back at school, and I miss his snuggles and squishy cheeks. He has made a lot of progress over the summer–he’s army-crawling now and gets into everything. I worked 2 days a week for a urologist and I loved it. It’s fast-paced and my coworkers are amazing with good senses of humor which is basically a requirement when I’m working. Otherwise I cannot possibly be expected to work. I cannot work with unfunny people who are not easily amused by body humor because I am a #nurse. Anyway…I digress. Below is a not so conclusive list of my summer wins and fails:

  1. Fail- Tumbleweed shoe. We were headed back to my hometown for Memorial Day with my family. It’s about a 4.5-5 okay 5.5 hour ride with children. There are like a lot of stops at gas stations because Darcy needs to “Go potty.” We manage to make it just into the ‘Sip when we have to make our first stop. We stop and Darcy and I run into a supremely dodgy and disgusting gas station bathroom. On the way out, Darcy starts griping about having to wear her shoes and is all, “My shoes! My shoes off!” Blah, blah, blah. Whatever, kid. I put her in her car seat and tell her to just take her shoes off and be quiet. When we stop at the next gas station, I can only find one of her shoes. It is then that I realize that Darcy was telling me one of her shoes fell off. AT THE GAS STATION. Like the gas station from 2 hours ago. So now I know how single shoes find their way to the side of road, just floating along like tumbleweeds. It’s because of mothers like me. 🤷🏼‍♀️
  2. Win-When we finally got to Mississippi, we had a pretty amazing redneck party with the family. Caleb smoked BBQ, the kids went swimming, and my nephew Bram got a nail through his foot. All in all, a good time.3. Win- Girls beach trip! Had an absolute blast with my sisters, nieces, and mom. It’s an awesome trip where we pretty much do whatever we want for a few days.
4. Win-Took my kids to the splashpad and the Knock-Knock Children’s Museum TWICE last week. If you knew how much prep and carry-along crap those trips require, you would just crown me with flowers right now. I did these things and had (mostly) fun. And they had fun, too. So basically, I’m #momoftheyear.

5. Fail-Mom discipline. You see, Darcy has turned into the dreaded “threenager.” I thought that was kind of stupid term until about two months ago. Tantrums, “No,” and a generally pissy-attitude have become the mainstay around here. Mostly, I have managed to keep my patience and what-not. Not so the other day. It was the end of the day which should signal to most parents that I was barely grasping onto the last threads of my sanity. Anyway, I asked Darcy to get in her car seat for the second time. She’s very independent you see, and I was giving her an opportunity to do it herself to promote independence and a healthy psyche and all that crap. She was scrounging on the floor of the car for her stickers she needed to hold on the way home. She grabs them and reluctantly gets into her seat–very, very slowly. Parents, you know the movement, so slow that it’s super annoying but she’s technically obeying you while also being defiant. It’s the *best.* Anyway, Darcy got into her seat in slow-motion and then immediately slumped down into her seat, and began squirming so I couldn’t buckle her in. “Darcy, sit straight.” cue the wild arm flailing. “Darcy, stop it!” More flailing. “Darcy, that’s enough! Sit! Up! NOW!” She stops moving, squares her jaw, leans forward out of her car seat, and stares me down. Y ‘all, I swear I  saw red. But I did not yell and I did not knock her lights out. No, no. Instead I remained very calm as I snatched her stickers out of her hand and chunked them out of the still open door. I finished buckling her because she was hysterical and pliable at the time, slammed the door, and blared music on the way home to drown out her indignant screams. Pretty sure that’s an immature parenting move, but I am imperfect and she was being a brat. Andddd I reaffirmed that I am crazy and will throw her stuff straight out of the window, which can only be useful in the future.

So that’s not nearly an exhaustive list of my wins and fails, but they are the ones that stand out the most right now. I’m about to start my FINAL semester of graduate school, and I am so excited, I cannot even see straight. Eeek! I wish you all the best of luck as you start off the year. Love to all ❤

 

Loving people through “it”

Don’t be lame

I last left you people with the story of Clark’s diagnosis.

When you receive a life-changing diagnosis, you cannot explain how it rocks you. For Clark, the diagnosis was actually a relief because of the months building to that moment. The hard part was when our neurologist dropped the heavy truth-bomb that Clark was not and would not ever be “typical.” For my friend just diagnosed with stage 4 cancer, it was the moment of diagnosis. I am absolutely wrecked with their news. I love this person and their family so, so much. I want to take away all the hurt and fix the situation–hello, nurse over here 👋

Y’all, I’m going to get serious for a minute and tell you all the things I’ve learned from my personal experience about dealing with someone’s heavy stuff.

  1. They are hurting. Like run-over-by-a-mack-truck-mangled-and-gasping-for-air kind of hurting. Life-changing news actually takes your breath away. That’s not just a saying. The affected party actually struggles to get enough oxygen with their breaths because it feels as if their lungs are stupid and are not cooperating.  Do not delegitimatize this level of hurt. Don’t say, “God won’t give you more than you can handle.” That’s complete bullshit and is completely unhelpful.
  2. Now, if you do love them, you’ve got to let them hurt. Let ’em. You don’t have to have the magical words to make them feel better because *spoiler alert* you cannot make them feel better with any words. Let them tell you how destroyed they are. Let them tell you their life is falling apart. Let them ugly cry. Yes, I know it can be totally uncomfortable when they are sniffing and dripping their own snot with their swollen, red, blotchy-faces. Just let it happen again and again if they need it.
  3. DO NOT SAY “I’m here if you need anything!” Look, Brenda, they do not know how to tell you what they do not know they desperately need. Instead, just try being there. Send the note, text, email, letter, gift, package. Tell them, “I’m thinking of you, and I love you.” Show up with all of your inadequate words and your Mawmaw’s casserole that uses two cans of Cream of Chicken soup. Just show the hell up.
  4. Also, don’t ask “How are you?” And follow it up with “but you’re okay, right?” They aren’t good. That’s a given. Instead say, “This sucks, and I’m here. Want to talk? Want a drink?” Let them know that you know the situation is messed up, the future is uncertain, but you are there for all of it. I promise this means more than “Oh how are you?”
  5. They are not the same anymore. Acknowledge that, but love them anyway. Keep inviting them to every function even if they never show up. Know that they have been forever changed, but also let them know that you don’t care. Be the friend you want to have when your life is wrecked, because one day it will be.
  6. Treat them like a human without the kid gloves. Nothing will piss a person off faster than being treated like a fragile piece of glass. If you regularly text the person pictures of floating hair, aka tumbleweaves (like I do), then still do that! If you screenshot hilarious and dramatic Facebook statuses (guilty, again) don’t stop. Keep up your friendship, oddities included.

The moral of the story is to be a friend, which I think is a lost art. Truly. Think about it–we live in Facebook world where everyone is a “friend,” but that’s just not true. Not every acquaintance is your friend, and not every friendly person is a friend. You can be kind without letting everyone into your inner circle, and that’s totally okay. But if you claim the title of friend, then be a good one! Show up and stay through the hard parts. Go out of your way and love people so, so hard. Show up with the meal, write the letter, and love on people consistently and genuinely. I just cannot emphasize this point enough–Be authentic, invite your people into that inner circle, and love them aggressively.

We are not perfect people. We’re going to mess up and say and do the wrong things. So what? Do better, love harder. What everyone says about “millennials” is bull because we are hardworking, we are accepting, and we are far more genuine in our relationships than anyone gives us credit for. Let’s show them all how we’re going to change the world by eschewing the platitudes we’ve been taught and embracing authenticity, both in friendships and in life in general. Until next time,  love to all. ❤

The Diagnosis

Clark’s Diagnosis: Part II

So if you haven’t read my previous post, you should do that first. Just click here.

I left you with my lifechanging perspective and baby Clark’s amazing progress. We were initially told it would take 6-8 weeks for the WES test results to be available. The WES test results actually took 15 weeks. I really think people thought we were lying when we said that the test results weren’t back yet, but seriously they weren’t. We started calling the geneticist’s office about 8 weeks after the appointment, and we were told that it would be 2 more weeks. Two more weeks would pass, and we would call and they would say, “One more week” or “Two more weeks” ad nauseum. 🙄 I called this past Tuesday morning, and to my surprise the nurse told me that the test results were back, that she had placed them on the physician’s desk, and that I could expect a call later that day. Yikes.

I immediately became anxious and stress-cleaned my entire house which is honestly  much more productive than stress eating raw cookie dough my usual methods. Around noon, the geneticist called. Immediately he told me that we had an answer for Clark’s issues. Cue the relief. He then explained that Clark has TMCO1 gene mutation or Cerebro-facio-thoracic Dysplasia. I know, I know. It’s a big word. And you will probably want to google it, so I’ll save you the trouble. Here. So, Basically, Clark has a syndrome that affects brain development, facial features, and thoracic/spine development. This explains his hypotonia, some facial features, spine and rib abnormalities and delayed development. This syndrome is officially classified as a mental retardation syndrome and has been associated with eye and cardiac disorders as well as severe intellectual disability and global developmental delay.

The long-term prognosis? Actually, okay as long as he is monitored for eye, cardiac, and neuro development, which he is. There are statistics listed that say things like “Half of diagnosed individuals never walk” and “A quarter of affected individuals never speak” blah, blah, blah. There are only about 15 or 16  confirmed cases worldwide. WORLDWIDE! That means that the prevalence of this disorder is <1/1,000,000. Far less than 1 in a million. More along the lines of 1 in half a billion. Now the interesting thing is that there are all these aforementioned statistics concerning patient outcomes, but they are based off these very few individuals. So, I’m going to take them with a grain a salt. 

So, what did I feel when Dr. S told me the diagnosis and explained that my child would have severe intellectual disability? Honestly, I felt relieved. We have an answer, y’ all. My son does not have major medical issues, and I am so glad that his diagnosis is not life-limiting. Clark is healthy, happy, and so very loved. We have been doing everything right with specialist follow-ups and early-intervention intensive therapies. There is nothing we could have done to prevent this, and Team Clark is doing everything we can to help him reach his fullest potential. His therapists give us life and are the sweetest, most encouraging humans ever.

To the family and friends who have shown up, packed up, and traveled on this diagnostic journey with us: We love you more than words can say. Readers, you may or may not have reached your terrifying, life-defining moments yet. If you haven’t had the privilege, let me let you in on something both extremely true and extremely cliché: you will find out who your friends are. Some friends and family members will suck it up tremendously. They will. They’ll say “Oh, I’m here for you,” while remaining curiously absent. They will act disinterested because they are. It might sting, because they *should* be there, but don’t worry about them. Because your people will show up. I mean it, yo. Out of nowhere, you will be hit with genuine love bombs. These special souls will listen to you cry, let you barge into their homes, drink the 4th glass of wine with you, lay on rugs, play ridiculous card games, and patiently sit there listening to you tell them again that you can’t possibly do this. Hold these people close because they are the real deal. The other friends and family members? Eh, not everyone is meant for you and that’s okay. Also, you have my permission to eliminate them from your circle. They can belong someone else’s circle of crappy friends. Bye Felecia👋

The more shit life has thrown my way, the more my perspective has evolved. This past week was huge for a lot of families. We finally got our diagnosis. Sweet William with cerebral palsy, who has had multiple surgeries and years of physical therapy, took his first unassisted steps this week! The video is just incredible, and I could barely hold it together. I know his mama was wrecked in the best possible way. Another college friend gave birth to a precious, tiny baby girl. She and her family have experienced true heartache with two stillborn daughters, and this sweet angel may have arrived a little early, but her safe arrival has been celebrated by all. My heart could have burst from joy for these families! On the other end of the spectrum, I have been shocked at a dear friend’s very serious cancer diagnosis. My heart has just ached over it. Life has a way of presenting us with a strange and constant dichotomy of both joy and sorrow. I was amazed at my ability to feel both so profoundly.

If I can impart any wisdom at all in my rambling, I want you to realize that while you might be having a normal day, or even a great day, others are having their worst. Sometimes even days that have victories can also be bittersweet. Please, please be kinder and gentler than necessary. My new goal in this life is to recognize and celebrate the victories as they come and to aggressively love on people who are in those dark trenches. And y’all, the Rayners are not in the trenches. Please, don’t feel sorry for us. We are happy and laughing and thankful for this incredible life, wretched moments and all.

If you’ve made it through this journey with me, thank you. Love to all.

*To any and all PTs, OTs, and STs out there:  you have no idea the impact you have on your patients and their families. What you do is vital, and without intervention, Clark would not be where he is today. Thank you, thank you, thank you. 

 

The bumpy, ugly, and altogether beautiful road to a diagnosis

Clark’s diagnosis: Part I

Hello all! I’ve been super MIA lately, but that’s because I have been living life and staying busy. I think I previously mentioned that we went to the very long-awaited genetics appointment for Clark the first week of March. It was an intense, 3-hour-long appointment. We went through our families’ entire genetic history, health history, social history, our reproductive history, etc. The interview was extremely thorough and filled with high-level conversation. By that, I mean that I am a nurse with a science education, and it was still difficult to comprehend a lot of the information given to us. Now, the geneticist was super kind and explained things as well as he could, but honestly it’s just very complicated, and I really feel sorry for those with no scientific/medical background. The geneticist is obviously super smart and you could tell he was trying to dumb everything down–he tried. So basically the geneticist told us that Clark did not fit any “box” of diagnoses he was familiar with. This was not new to us. I mean, we’ve been to about 8 specialists and 3 therapists who haven’t been able to figure Clark out either. So, he recommended Whole Exome Sequencing (WES). Long story short, it basically looks at Clark’s genetic information and *hopefully* identifies the glitch.

We have known that Clark has some type of syndrome. We have had many different diagnostic tests run to identify the issue. Nothing has come back positive. At first, this gave me great hope that *maybe* nothing was wrong. Once I couldn’t lie to myself anymore, the negative tests became irritating. You see, there a lot of children in this world who have “unknown syndromes.” You know what that means? That means their parents have no answers. No answer, no diagnosis, no possible prognosis, etc. The geneticist warned us that we may not get an answer even with exome sequencing. The test results could identify a genetic abnormality of “unknown clinical significance.” That seemed too horrific. Because we would have done everything possible to come up with no answer.

Y ‘all, I prayed a lot after that appointment, but for the first time I wasn’t pleading for Clark’s healing. Instead, I was begging for peace and understanding. Instead of praying for God to change the circumstances (which, let’s be honest–that’s my usual prayer), I was now praying that God would sustain me, equip me, and give me peace and strength. I prayed that we would find answers, but that even if we didn’t, He would use this situation for His glory. It took about 15 weeks to get the WES results. And I noticed some huge changes during that time:  changes in Clark, and changes in me.

Clark now sits up and plays for long periods of time. He can stand unassisted for up to 5 minutes. He rolls and swings himself around to get to his toys. He can run like a banshee on his gait-trainer. He is eating less purees and more mashes–he’s biting and eating graham crackers! Clark is trying so hard to army-crawl and is even pulling himself forward occasionally.

Changes in me?? Well, let’s scoot back in time to December of 2017, when I felt like every lab test held my world in its cruel hands. I simultaneously anticipated and dreaded the result. Every negative test felt like a shallow victory, because at least Clark didn’t have that disorder, but we were no closer to finding a diagnosis.  I continued living this way for a solid, miserable year. It was undoubtedly the hardest and bitterest year of my life. My heart was irrevocably changed when it was broken to pieces this past December. That was when I was forced to accept that life would not be “normal” for Clark. When I say that my heart was broken, I mean it. I actually had literal, physical pain in my chest, and there was no earthly comfort to be found.

Even still, God found me there. He met me in my suffering and no, it wasn’t like this blazing, yet oddly comforting light where He revealed his master plan and it was all suddenly hunky-dunky. Because it wasn’t that way at all. It was gentle and subtle, and came in little pieces instead of all at once. He gave me peace and hope, true hope for our family’s future. I honestly did not even feel anxious about these genetic test results. I mean, sure, I thought about them, but I did not dwell on them. It’s so odd, and I cannot describe it other than God gave me this incredible gift of joy and peace and acceptance.  I was truly okay and could praise God with an earnest and grateful heart, not knowing the testing’s outcome. Y’ all who have been on this journey with me know that I have been torn up and crazy and railing at God for almost two years over this situation. To say that I am at complete peace proves that Jesus is alive and well and still working miracles. And no, the miracle wasn’t Clark’s earthly healing, but maybe instead He broke my heart to save it, and that for sure is a miracle worth celebrating.

In the next post, I will tell you about Clark’s diagnosis, what that means for us, and why our future is so bright ❤

 

Three and fabulous

Happy birthday, Darcy

In some ways, I cannot believe that Darcy will be three tomorrow. That she has been earth side for three whole years–the most life-changing three years of my life. Parents, you understand this feeling. These children drop into your life and consume it so completely. Don’t get me wrong, you still have your own things going on, but nearly every single activity is impacted by this new, tiny person. And it stays that way, I think forever. So in that way, I can totally believe it’s been three years because sometimes the days are freaking long, man. This past Sunday lasted approximately 92 years, of this I am certain. I thought about writing Ben a “Goodbye, Good luck, and Godspeed” note because it should have been bedtime, but it was actually 11:00 a.m., and I just could not mom anymore. And in the same moment, I remember this night, the night before you were born, so very clearly.

Darcy. Girl, you are unique. I know everyone says that about their child, but you really are. You make expressions with your face that you just shouldn’t make out loud. If you don’t think something is funny, you aren’t going to laugh or fake laugh. You can glare and mean-mug like a champion, and it can be so embarrassing, but you are you, girl. You also belly laugh and smile so big that your eyes close. You love to run and play with your friends. You are O-B-S-E-S-S-E-D with Shabbat. You love it so much, and Friday is your favorite day of the week, fo sho. You demand the Hamotzi before every meal, and you cover your eyes when we light candles, even if they’re just scented candles because Libby stinks. Also, you love bossing Libby around–to any new readers, Libby is my “single girl” Westie that is now almost 9 years old. You are in love with the color blue, and want blue everything. You were so sweet the other night and asked me to make blue waffles. I felt like a superior, fun mom, and I made my baby girl some blue waffles.  Then you threw up blue waffles all over my couch. Fun times. 😑

You love baby Clark so much.  You call him “baby Cwark” or “my baby.” The other day I heard him crying (rare) and saw that you were dragging him by his legs to your room to “pway wif me.” I mean, obviously I had to rescue him, but the sentiment was truly precious. You love him and defend him so well. You love to read him books and make up new stories and songs for him. Your daddy has always sung a special goodnight song and good morning song, and now you sing them to Clark at ear-splitting decibels. It’s got to be a rough way to wake up, but he is so in love with you and lights up when he sees you.

You. Are. Sassy. The other day I told you that you were not listening to me and you hissed, “I IZ yistening!” You totally weren’t, and you got reprimanded for back-talking, but inwardly I laughed a lot.

This morning after Daddy left for work, you looked at me and said, “Mama, Daddy picked this out” while pointing to your dress.

Me: “Yes, he sure did.”

You: “Daddy. Picked. This. Out.”

Me: “Oh. I see. You want to change?”

You: “Yes. I not yike this.”

You tell me to “hear it up” when you want the volume to the radio louder. You call lemonade “lemma-lade.” You love to bake, and turn into such a little hostess when the cookies are ready. You want to serve and serve (and serve) all of the cookies before you start eating one. “Chicken filly A” (Chik-fil-a), waffles, and anything chocolate are your favorite foods. Sack is still your main man when it comes to lovies, and you love to read books and run.

You have been so excited to turn three, and you’re going to have a big, blue cookie monster party this weekend. We are going to start your birthday tomorrow with “benny-yays” at Coffee Call, and I just cannot wait to celebrate you, my Darcela.

Darcy-girl, I just love your toddler-speak. I love your sass. I love your sweet heart. I love you. I will never recover from falling in love with you, and I cannot wait to see what’s up ahead. Happy birthday, baby.

 

 

I dropped my basket, and it feels pretty good

A baby Clark update

In early December, I was feeling pretty great about life. I had finished the semester with A’s and survived the hardest months of my life. I had run the St. Jude 10K, celebrated Clark’s first birthday, and relaxed for a few days. At the end of that week, I took both Darcy and Clark to the doctor. Darcy had been diagnosed with an ear infection 2 weeks earlier and needed her follow-up appointment to ensure that the infection cleared.  I had also scheduled Clark’s hearing screen since he got new tubes in his ears. So, it should have gone 1)hearing screen 2) doctors appointment. It’s all in the same building, so whatever. Needless to say, we barely made it on time, and then had to pay our entire balance before we could see anyone, even though we were on a payment plan. Alrighty then, that sucked, moving on to the hearing screen! Clark failed. “After 3 failed screenings and previously failed ABR, it could be that he just has conductive hearing loss. It may be permanent and we need another ABR test to confirm because early intervention is necessary if he is in fact, deaf.”

Y’all. I started crying right then. I was just so upset that after multiple tests and two sets of tubes that Clark might actually be deaf to some degree. It just seemed too much. But we still had a full morning, so I went downstairs to his pediatrician’s office. Darcy’s ear infection had not cleared. 10 more days of antibiotics. I had some concerns about Clark’s chest wall and requested imaging. The doctor agreed that his chest deformity was not looking like the pectus excavatum we originally thought he had. So we went to x-ray and waited an hour for them to say the physician never put in the order. Waited 30 more minutes, and got the x-ray.

Holy shit. It was an effing nightmare. Clark has multiple fused vertebrae, fused ribs, and significant deformities. If you’ll remember…in the NICU after Clark was born we had a similar x-ray result followed by an MRI that was “normal.” I questioned it and the neonatologist at the time. He reiterated that the MRI was conclusive, that it was normal, and no follow-up was needed. If I ever see him again I will “accidentally” trip him, help him up, and stick a “Kick me” sign on his back because he is an idiot. We truly believed Clark had been healed. But he wasn’t. 

I won’t even try to tell you what kind of shape I was in because it was ugly. Ever since we had Clark’s 20-week ultrasound back in August of 2017, I’ve felt like I was holding this giant, heavy basket full of stuff. As time went on, and we got bad labs or missed developmental milestones, I would readjust the load and occasionally drop an item causing me to lament my ineptitude. On this day, though? I dropped the whole damn thing. I was so angry that everything I had prayed for and believed was wrong. What was the point of it all? Why believe, why trust in God when it doesn’t even make a difference? When it doesn’t change the one thing I would die to make better?

And that’s how I learned my hardest lesson I’ve learned so far. My faith was weak. It was dependent on the outcome. And when that outcome wasn’t what I wanted, my faith was crushed and my hope disappeared. Luckily, I had supportive friends and family members that dropped some truth bombs, “Our Lord is so much more than a being that is there to help life go right….when evil causes something terrible in our life, God promises ultimate good for those who love him and keep his commands. But this is not a promise for those without faith.”

And…I’m better. I am enjoying life more than I have in over a year because I’m not waiting for the other shoe to drop–it already did.  I am still apprehensive of the future, but for the first time since August 2017, I’ve stopped actively fighting this thing because it’s a fight that cannot be won. We have a genetics appointment scheduled for Clark at the end of this month, and the bigger, stronger part of me knows that the only way I can help Clark at all is to have all the information. And that requires stepping out into the really bright light, so that no thing is left in the dark. It may mean that we get a diagnosis that’s hard to accept, or  it could just raise new questions. Either way, I know it will be okay because Clark will be who he is meant to be.

On another note, Clark’s ABR testing was normal and he can hear, and I will straight up refuse another hearing screen because they are useless and upsetting. His neurosurgery appointment and ENT appointments have been uneventful and “good.” He’s getting stronger and making some really great progress with therapy. Darcy is sassy and funny and sweet and sour. School is hard, but I graduate in December and it is my motivation to keep on, keeping on. We are truly living our best lives these days. It may be a while between updates because life is busy. As always, we are thankful for your prayers as we continue on the journey towards a diagnosis. Love to all ❤️

 

 

Clark is one!

Happy birthday, my baby.

This time a year ago, my legs were itching. Unbearably itching. You see, I had shaved my legs prior to my scheduled C-section, and when I got to the hospital, I had to wipe my legs down with antiseptic wipes. This caused my legs to burn and itch like none other for the next 30 minutes or so. Isn’t it funny the things you remember?? If you haven’t already, you can read more about baby Clark’s birth and the immediate aftermath here and here.

Oh my baby Clark. Today is your first birthday!! You are so precious. You smile all the time, laugh this delicious belly laugh, and irritate your sister by grabbing her toys. You love books and bath time and your mama and daddy. You have red hair and crystal blue eyes framed by the longest eyelashes known to man. You are SO loud! You babble nonstop and happily screech all day long. You are truly all of God’s grace wrapped up in one tiny body!

It has been one of the hardest years of my life, hands down. In the beginning, you were evaluated by eight separate physicians. Only two were positive when discussing your “outcome.” Had you not been the absolute light that you are, I could have let negative thoughts steal every inch of my joy. To be honest, I did allow them to steal more joy than I should have.  But then again, those fears led me to my knees. All the nights I spent praying, all the tears I have shed–you, sweet boy, are worth them all. My God has healed you, sustained you, and has held us close during the dark valley of hard surgeries, “suspected” diagnoses, and just plain fear. When my anxiety, fear, and lack of faith have rendered me utterly useless to the kingdom of God, He has given me hope through your laugh and smile. Over the last year, I have discovered that when I spend time praying to my Jesus, and I focus on your (always) smiling face, I can experience both peace and joy. By meditating on the goodness of His promises, I can be thankful for the now instead of becoming sick with anxiety for the future. My faith may be small, little one, but God has allowed it to move mountains. I will move all the mountains for you, my baby. And if I can’t, I will climb them with you. I am so thankful that we’ll never have to go back to life before you ❤