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 answer. 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 ❤ 

Pill-eating, picture forgetting, and lice hunting

This is my circus and those are my monkeys

Hello people! I have been absent in the blog world lately because of grad school. My life has not slowed down even a little bit and really nothing has changed. We are still a messy bunch of people struggling to not live in absolute filth while getting exercise occasionally. A few weeks ago, we were getting ready to go to Friday services  while Ben was handling Clark, and I was on the phone with my mother-in-law. All of a sudden, Darcy bounces into the living room and says, “One more!” as she pops something into her mouth.

Ben: “Darcy! What is that? Spit it out! Oh God, Beka. I think it’s a pill.”

That’s when Darcy reveals the topless pill bottle clasped in her sticky little hand. I race over and fish the pill out of her mouth and look at the pill bottle. It’s my thyroid medication and the bottle is empty. I run back to my bedroom to see if she spilled the bottle and by chance did NOT eat the pills. They are nowhere to be found.

Me (quite calmly, actually): “Darcy. Did you eat all these pills?”

Darcy: “…”

Darcy finally slowly nods her head.

Me (losing all chill):”WE NEVER EAT PILLS, DARCY!!!”

We throw her and Clark in the car and start driving to the emergency room while I frantically call Poison Control. To their everlasting credit, they were SO nice and quick to alleviate my fears. I estimated she had eaten about 10 of my pills which was only about 500mcg of levothyroxine.They basically said she was going to be fine and the ER trip was unnecessary, but to “watch her for signs of hyperactivity.” I laughed because this kid lives hyper. So anyway, I am #momgoals for overdosing my child. And yes, they were sitting on my night stand, so it was my fault and I suck. I know, I know. Because I want all of you mamas to feel awesome I’ll tell you another story featuring my crappy mom brain.

So, mornings at our house are challenging, okay? Ben leaves for work at 6:45 and is largely unhelpful with the kids in the morning. It’s not his fault–he has a commute and has to leave, but that basically means I take morning shift by myself. In the mornings, I am running around getting them up, dressed, fed, and dropped off at daycare, so I can bust my tail to get to clinical on time. Halfway through this particularly busy clinic morning, I get a call from daycare. I groan internally because I know they’re calling to tell me that Clark is sick because he always is. I’m immediately stressed because I’ll have to miss clinical and go get him, and I really don’t need to miss any more clinical days.

Daycare: “Hey, Mrs. Rebekah. So, today was picture day…”

Y ‘all, I laughed so hard! Today was freaking picture day and in my haste to get the hell out of the house, I dressed my kids like homeless Bob who lives under the interstate bridge.

Me: “Omg, I dressed my kids like hobos, today.”

Daycare: “We figured you forgot, don’t worry, there’s a makeup day on Thursday…”

So we get the proofs yesterday and Darcy’s expression looks like someone put cow dung on a spoon and held it under her nose. I’d post it, but we only have the proofs, and I’m pretty sure the GIANT watermark means I shouldn’t post it.

What can I say? We are #familygoals. I can laugh at that stuff for the most part because it’s par for the course around here, and we are just not normal. I can admit that stuff was pretty funny, but the lice scare of this past week was NOT. If you’ve read my blog before, you know that I have anxiety. My anxiety is SO weird though. Like I can drive 6.8 miles to the gas station even though I only have 7 miles to empty and I feel no anxiety. Cool as a cucumber, yo. But I get a letter saying there’ve been cases of lice in my kid’s classroom, and my head immediately starts itching, I psycho-dial my mom, and I spend the next 2 hours examining my hairline with a flashlight yelling, “IS THAT A DANDRUFF OR A NIT????!!!!” over and over to myself. Clearly, I am very stable and I’m #personalgoals.

But you know what? My people still love me so well. Just a couple of weeks ago, a sweet friend brought over the most delicious dinner. Ben had been working so late, and it was kind and helpful. Thank you, Ellen. That week was followed by one of the best weekends ever!  One of my best friends married the love of her life, and I got to be there as a bridesmaid. Tyler and Matt made the perfect couple, and I had the best time catching up with all of my gloriously imperfect friends. We are an unusual blend of backgrounds, religions, political views, and even geographic locations–they live everywhere from small Mississippi towns to Houston, Washington D.C., Oahu, and Sydney.  But they’re my people and we love each other so well. The very next weekend my husband surprised me with a beach trip to my parents beach house in Fort Morgan, AL. When I got there, I was so thrilled to spend time with my parents. An hour later, I answered the door and my brother and his family were standing there. My heart could have just burst! They drove from St. Pete Beach, FL to be there, and we made the most of our short weekend.

You might be like me. You drip sauce on whatever shirt you’re wearing, accidentally overdose your kid, smack your kids head on the car door putting them into the car seat, or walk around with crap in your teeth all day.  You might struggle everyday to keep your patience. Or hey, you might not. You might have it together on all the outside things which is also cool (I salute you, you unicorn). But I’m telling you now, if you don’t have a group of weirdos, both friend and family, you’re missing out. Because when all the bad happens and life is just hard, you need those people to fall back on. They’ll embrace you, faults and all. In that circle of love thing, I truly am #goals. Love to all ❤

The sun shines, and the light blinds

Things are looking up 😎

1.I did well on my first exam of the semester! Cue the praise hands! It was one test over 30ish chapters and I’m just thankful it’s over with. Considering how the semester began (a total crap storm), I am thankful that I was able to learn and regurgitate any information at all.

2. Ben and I got a great date night complete with steak and wine and no children. That’s a triple win right there, and I am still rejoicing over that. We even took a picture! Sure, it was in the parking lot, but that’s as good as it gets for us.

3. Clark has slept through the night more in the last week than he has in 8 weeks. Thank you Jesus. Shame that probably won’t continue after his surgery on Thursday. Oh well. Take your wins when you get them, however brief they may be.

4. I forgot an ingredient in the chocolate chip scones I made this morning, and they still turned out well.  I rarely have baking fails, but the past two times I’ve made these scones that I have made approximately 75 times before, I have forgotten main ingredients like a total idiot. The first time I forgot to add the leavening agents because who the hell does that?! That is so damn elementary, and the beautiful scones were basically trash biscuits. It’s probably one of the worst cooking fails I’ve ever had other than a casserole thing I attempted when Ben and I first got married. Y’all. I won’t even try to describe that bad boy. It was so sad and Ben kept saying, “It’s not that bad.” Oh, but it was.  Anyway, this time, I forgot the sour cream that makes them all moist and stuff, but the Lord hath shineth on me today, and it made no difference and they were still fabulous.

5. We finally changed the lightbulbs in our kitchen. Look y’all, I can be picky AF about lighting. It can be about where the visors are placed in the car because I’m short-ish and the sun comes blaring in and I can’t see and I will wreck the car and die if they are not placed appropriately. Hate that stupid sun. It can also be about lighting in the house. I mean, how can I be expected to remember essential ingredients in meals when I CANNOT EVEN SEE INGREDIENTS?! Ugh. Ben hates the kitchen lights and I almost cannot blame him because they are industrial fluorescent lights. Yes. They are. The kind you had at your high school that buzz for the first 20 minutes after you turn them on. The woman who originally owned this house thought that 8-foot-long florescent lights were perfect for the kitchen. Anyway, they’ve been slowly dying on us, and we finally made the trip to Lowes to replace them. We found what we thought was right, bought them, somehow managed to fit them into our car, and brought them home. It was soon obvious that it was going to take both of us to snap them into place because of their very convenient size 🙄. I had to stand on a step-stool, but we managed to replace all four bulbs and then flipped the switch.

O

M

G

 I was BLIND. I could not see anything except black spots, and bursts of brightness that could only be the Lord himself. I think I screamed. About a minute later, when my eyes decide not to hate me for exposing them to the Sun, I could finally see again. I’m glad we changed them out, but next time maybe not all four at once.

6. Darcy is refusing to potty train. She was SO into it a few months ago, and has now completely lost interest. Her teacher keeps telling me that all the other girls in her class are using the potty. So I say, “Darcy, do you want to use the potty?! It’s so fun! I’ll give you chocolate chips.” “No. I not use potty.” “But Darcy, you can wear big girl panties!” “I not.” “Ok, cool.” 😐

7. Darcy is currently in the middle of her toddler food strike. She eats like one chicken nugget a day. “Darcy are you going to finish this macaroni and cheese, or not?” “Not.” Whatever. I don’t think she’ll voluntarily starve.

8. Clark is getting new tubes and his adenoids removed on Thursday. It’s a small surgery compared to neurosurgery, but I am always a bit cray when my kids are in the hospital. Hospitals are dangerous, yo, and I feel like I have to be both mother and nurse in there, watching and questioning everything, so they make it out alive. Thankfully there are scripts for that 😂

9. Clark is officially a thumb sucker and it is precious. See below..

10. As always, I’m thankful for my God, my faith, and my people. Live is genuinely hard, and sometimes it just sucks. But thankfully, God is always good, and the sun will come out eventually. Love God, love people, and never stand on a stepstool, two inches away from the florescent lights you’re changing out. That’s all for now. Love to all ❤