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.

 

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 ❤

 

The “Girls’” trip

No boys allowed. Not even Clark

I always question people who say they are not close to their siblings. Like, why? I’ve already shared my love letter to my brother, but I also have two older sisters, and I talk to them all the time. Every summer, my mom, 2 sisters, sometimes my sister-in-law Lakon, our combined 4 daughters, and I go on a beach trip. We first started this tradition when my eldest sister was in high school, and then it was interrupted for a few years while she and my other sister were in college, med school, grad school, etc. Basically they were too busy building their fabulous lives to go on vacation with me. Those bitches 🙄.

The girls’ trip. No boys are allowed. Not even tiny ones. I mean, think about it. Guys always want to do things on beach trips instead of just relax. Also chicken salad and fruit aren’t enough to satisfy them for lunch. So, basically they aren’t allowed to come and poop all over our trip. Seat’s taken, you can’t sit with us, bye Felicia 👋

Anyway, when Katie (#1) was pregnant with her first baby, we started up the tradition again. We stayed in a hotel on that trip, and Katie was all, “I’m cool, no worries. Y’all can watch TV while I sleep. It won’t bother me!” Five minutes later, the room next to us was being a little loud. She shoots up out of bed, grabs her slipper from the floor and begins smacking the wall, “BE QUIET!!!” She promptly lay back down with her eyes closed. Anna (#2) and my mom and I exchanged glances, turned off the TV, and wordlessly went to sleep at 7 pm 🤫. No one wanted that wrath (or slipper) directed at them.

We’ve since mostly stayed in condos, occasionally hotels, and most recently at my parents’ new beach house. We eat chick food, are supremely lazy, and laugh a lot.

One year, we were staying at a condo in Gulf Shores, and my niece chunked her baby doll’s pacifier off the balcony. She then cried and cried for it because toddlers are rational. We looked for ages, but never found that one. Then there was the year that Lakon had to dig a belly hole in the sand to accommodate her very pregnant belly. Then there was the year Katie took a muscle relaxer for her janky neck before playing cards and just got stupid. Probably the only time I’ve been able to beat her because she was literally moving in slow motion. I’ll never beat Anna. She’s a freak and can play a whole deck. Ugh, and last year I was about 11 weeks pregnant with Clark, and Darcy wasn’t walking yet. Toting her and our beach gear while I was miserably ill was awful, so Anna and Mom did the grunt work on that trip. Also Darcy was basically just miserable on that trip. She was demanding (surprise, surprise), and hated the beach after about 30 minutes. We tried to make it more bearable with a baby pool for her to play in. My sister Anna had to blow that bad boy up and ultimately it did nothing to convince Darcy that the sand and water were not the devil. Anna still bitches about that.

This year, we had our first stay in my parent’s new beach house. It is just beautiful, and I swear we had the best time! I should mention that Katie is a gourmet chef. Seriously, she is amazing and everything that we ate was sublime. My favorite was a sea bass dish she made. Also she mixes fabulous cocktails, and I was the only one to benefit because Anna is pregnant and my mom doesn’t drink at all. Katie and I also took the kids crabbing one night, and it was hysterical. Katie’s daughter is a beast at catching things and crabs are no exception. Anna’s kids–not so much (God bless ’em), but seeing all of them chase after those crabs was hilarious. We then took the golf cart off-roading. Not exactly intentionally, but memorable all the same. I really haven’t laughed that hard in a long time.

Anna has had a difficult pregnancy and doesn’t need to carry anything but herself, so Mavis, Katie and I carried all our gear to and from the beach each day. This wasn’t a problem until one afternoon where Darcy decided she needed to be carried across the sand. I told her, “No.” Cue the full-on meltdown. She screamed from our spot on the beach all the way to the boardwalk. We passed by a tent of people laughing and they pointed to her and said, “Does she happen to be about two?” “Uh, yes. How ever could you guess?” They just laughed and said, “Darcy, what’s wrong?” Darcy cut them an evil look and continued to sob. But guess what? The next day when I told her no, she didn’t cry (as much). So, I’m counting that as a win. 

My mom plans all these precious parties for the girls during the trip. She picks a theme for every night and it was just the cutest thing. The first night was a barn party, the second, a unicorn party, and the final night was a pink pirate party complete with a scavenger hunt. It was so much fun! The adults had just as much fun as the little girls. My mom really is amazing. She cares about all the little details and makes everything so special. She’s always been that way, and I strive to make similar memories with my babies.

Ladies, if you weren’t so fortunate to be born into a girl-tribe, then you’ve gotta make your own. Pick your friends and hold them close. Go on the beach trip. Help your girl out when she is big and pregnant and basically useless, and forgive them when they’re being a bitch (never me). Cook the amazing food and laugh at each others kids when they faceplant during a tantrum. Go off-roading with the golf cart. Make fun of each others hairy arms and talk about everything from Jesus to snissing to sex and all topics that fall in between. You can google snissing if you don’t know what it means, but if you’ve had a child then you’ve experienced it.

If you were born into a girl tribe, then you are lucky. Super lucky. Foster that relationship and love each other hard. Just because you aren’t close now doesn’t mean you can’t build that relationship into something worth having. Look, I love my sisters, but I definitely still argue with them. For instance, two weeks before the beach trip I told Katie she was uncompassionate and sucked at being a sister. Three days later, I apologized and told her that I knew I was actually being crazy, but she still sucked and was old AF. It’s all about balance, you see. I love these women so much. I mean, they’re control freaks and judgmental and not nearly as funny as I am (God bless ’em), but I love them and couldn’t imagine my life without them. I am #blessed.

Results?

And my crappy Lazarus analogy

Negative. Mayo Clinic has deemed the results negative, but did acknowledge an elevated level of glycosaminoglycans. They believe this to be from contamination, or could be a sign of some other disorder. So though the answer is not a perfect and resounding “NO!” it is more of a “Almost assuredly and mostly no.”

You would think I would have jumped for joy, but instead I felt immediate fear. What if the elevated levels mean that he actually does have Hurlers?! What if we have to repeat this test?! I CANNOT WAIT AGAIN! I will kill myself. I will jump in front of a bus. I will die because I cannot take one more ounce of stress. These thoughts were immediately followed by more fear that by me saying ‘I can not take any more’ that I was issuing a challenge to God to give me more pain and anguish to prove that I can take it. Cynical, I know.

I put too much faith in science and logic and exactness. Jesus knows that about me, and He wants me to trust in Him whatever the outcome, and I struggle with that–with saying, “Whatever the outcome, I love and trust in You.” Because a part of me, the sinful part, does not feel that way. I love Jesus when I receive His blessings and goodness, and I often lose faith in Him when “it’s not fair.” Jesus knows this about me. So, I believe He gave me a lab result that wasn’t quite perfect. And I reacted predictably–in simultaneous relief and despair.

I am reminded of John 11 account of Lazarus. Jesus loved Lazarus and knew he was very, very sick. Despite this, Jesus stayed where he was for 2 days and said (paraphrased), “This will not end in death, but this will be for God’s glory, and God’s Son will be glorified through this.”

Y’all. Lazarus died. He had been dead for 4 days by the time Jesus came into town. Lazarus’ sister Mary told him,”If you had been here, Lazarus wouldn’t have died!” And then Jesus opens the tomb of a dead man, tells him to get up, and he DOES! Like a mummy, Lazarus walks up out of the tomb. Seriously on the mummy part. John 11:44 says his hands and feet and face were wrapped in cloth 😱

What I’m trying to say, and probably failing at, is that God rarely gives me expedient, nice, and tidy answers. He gives me halfway answers, prolonged waiting times, and frustrating questions. I forget that an answer of “maybe” is not the same as a hard “no,” and sometimes I forget to be grateful for that. Jesus is working for something huge, here. Bigger than huge, even. My despair is caused by putting my faith in the world instead of the One who created it. Shame on me. Jesus is healing my baby. I’ve seen proof of it over and over again, and I still doubt. And today, He answered our prayers. Thank you for your prayers. I am blessed beyond measure by those who love and pray for me and my baby.

Clark is an overcomer, and we are mighty when we unite in prayer. Love to all ❤️

EDIT: I was hesitant to submit this update because my pediatrician wanted to talk to geneticist to clarify the confusing results. I decided to believe in the negative result. I pressed submit and my pediatrician called me immediately. He said that the Mayo Clinic geneticist said the elevated level was from craniosynostosis and NOT Mucopolysaccharidosis. You will never convince me that wasn’t Jesus. 😭👏🏻🙌🏼❤️

Splitting my face with a plastic sword

A sappy post dedicated to my brother

Caleb and Beka/Beka and Caleb.

We are the “babies” of the family. You see, I am the youngest of four children. (1) Katie and (2) Anna are only 3 years apart, but Anna and (3) Caleb are 5 years apart. Caleb and (4) Beka–well, we’re only 19 months apart. So, you can see that there is A) Katie and Anna. & B) Caleb and Beka. I am lucky–I was born into a really great family, and I am close to every single one of my siblings. But Caleb is different. We grew up together and are bonded in a way that only siblings one school-grade apart can understand. We knew all of the same people, were in the same Sunday school classes, and hit major milestones together. He was ahead of me by one year, so there were always those times that he briefly left me behind. Like while I was still in Jr. High as a freshman, and he was a sophomore. Or, when I was finally a senior, but he left for his freshman year of college. But we *get* each other. He’s the only person in the world as funny as I am, and I can tell what he’s thinking. I can feel it when he’s sad even if he’s far away. He shares all of my childhood memories even if he remembers them “differently.” 🙄

As I am feeling sentimental today, I’ll share a few of them with y’all.

One of my earliest memories involves Caleb killing a snake. It was the summer I turned 4 and I remember a small snake was caught in one of our pool gutters. We always loved emptying the pool gutters because of all the bugs and frogs in them, but on this day there was a small pissed off snake wrapped around the handle of the basket. Using a stick, Caleb bludgeoned and killed it. I remember thinking he was so brave. I don’t know that he even remembers…

When we were kids, we both played together and fought together often simultaneously. Once, while we were actually playing, he split my face open with a plastic sword. It was a Wednesday afternoon, we were playing outside, and we were told to come inside, so we could load up and go to church. I told him that we needed to go inside, but he insisted on his stupid, “Duck!” game. He said, “I’m going to tell you to “duck,” as he swung his sword at me. He told me to “Duck!” and I did. “This time, I’m not going to tell you to duck.” I wasn’t quick enough. BLAM! The sword cracked against my left cheek, just below my eye–hard. It hurt, but when I put my hand up to my cheek and pulled it back down, my hand was absolutely covered in blood. I screamed. Supposedly, you could see my cheek bone. I had to go to Memphis, and have a pediatric plastic surgeon suture it back together, so I wouldn’t have a massive scar. I’d probably be a lot hotter without my disfiguring injury, you big jerk. 🙄 Honestly, if you’ve ever seen it, you probably thought it was just a dimple, but it was a Caleb-made dimple. Injuries aside, we spent our childhood playing outside all day everyday; going fishing, catching crawdads, and playing in the hayloft of the barn, threatening to throw each other in the horse troughs. He was my built-in playmate.

In college, our relationship changed Surprisingly, it was the time we were most distant even though we were in college at the same small university. A lot of that probably had to do with who we were each dating at the time (we were constantly going in different directions), but also because I was pretty unforgiving and felt it was my duty to use separation to punish Caleb for whatever I deemed offensive. Now we are not twins, but we are far closer than your average siblings, and the pain that comes with separation (physical distance or emotional) is real. Even so, when I needed him, or when he needed me, we jumped to each others’ aid. When he broke his ankle by being an idiot, I helped him to and from the bathroom and to and from Algebra class at DSU. When I was at death’s door and some awful nurse at the DSU infirmary accused me of being drunk, he came to my dorm to rescue me. I had a sinus infection, bilateral ear infections, bronchitis, and a 103 fever by the way, you hateful shrew of a nurse. So even though we were mad at each other, we still helped one another.

Luckily, the rockier part of our relationship began to smooth out when he met his amazing wife, Lakon. Ugh, I love her. She’s the best, man. I mean, I can make fun of her for days–she makes it SO easy–and she’ll just throw it right back at me. We can laugh at Caleb’s expense, play cards for hours, and lay on “$150 rugs” at 1 am. She’s the best, and has become a real friend to me. I just can’t tell you how much I love having another sister. So, when I first started dating Ben, I really wanted Caleb to like him. Caleb, although kind to just about everyone, does NOT let many close to him. If he doesn’t like you or feels like you are “uppity,” he will hold you at arm’s length and avoid you. I did not want that for Ben and by association, me. Luckily, I didn’t have anything to worry about. He and Ben got along well at first, and are now basically best friends. Caleb calls Ben just to chat, and he DOES NOT DO THAT. They have major bro love, and I couldn’t be happier.

As we’ve gotten older and adultier, we’ve just become closer. When Darcy was diagnosed with craniosynostosis, Caleb loaded up his family and came to Baton Rouge within 3 days. When my 20-week ultrasound with Clark showed abnormalities, Caleb immediately called and told me he would be there that weekend if I needed him. When he graduated from Chiropractic school, I drove across 3 states for a total of 8 hours to see him. That night after I arrived, I was sharing a hotel room with my parents and my father started snoring. It was the worst. I called Caleb at midnight, and he drove to my hotel to bring me to his house to let me stay on their couch. Less than 24 hours after arrival, I loaded up and drove the 8 hours back. On my first official Mother’s Day, I was neck-deep in postpartum depression. I was exhausted, tired, and lonely. Ben arranged for Caleb’s crew to join us at his parent’s lake house as a surprise. It was the best surprise ever.

And now, Caleb is headed off to a new adventure in Florida. It’s stupid because I don’t get to see him much, but I feel the distance. He feels farther away because he is. And knowing that he won’t meet us at the house when I go home to Tobie stings. It’s hard. I’m so, so happy for him and his family, but I am also selfish, and I want him to stay close. I don’t want him to move on and make this fabulous life without me, filled with people I don’t know. It was hard enough lending him to St. Louis for school! Either way, he knows that if he ever needs me, I will drive forever and ever to be there. I would hitchhike across America for that boy because he’s the one I love best. I love you, Bubby!

The 2nd anniversary of my motherhood

Or, Darcy’s birthday letter

Bittersweet. According to Merriam-Webster, bittersweet is defined as, “pleasure accompanied by suffering or regret.” I know for a fact (okay, not really) that this word was invented by parents to describe the landmark occasion of their child’s birthdays. Today, Darcy is two years old. That two years represents so much to me. Such as:

1. The death of my beloved sleeping patterns. RIP late weekend sleep-ins.

2. The death of my intense selfishness–thank you God for working some of that out of me!

3. The birth of my motherhood. I’m a mom, which has been my greatest blessing in this life.

Darcy-bird, you are it, man. You are the most precious little 2-year old on this planet. You love to play outside. You pronounce “outside” as “a-die” by the way. Your daddy and I had no freaking clue what you were saying for like 2 weeks. Mattie finally figured it out–yay Mattie! You stall like a pro when it comes to bedtime. You have to say goodnight to EVERYTHING. Including the “tash” on the floor which means “trash,” which reminds me of another thing you brought into my life:

4. The death of my clean house. I used to be able to walk barefoot (LOL) without that special *grit* you manage to spread all over.

I know all parents think that their children are beautiful, but you ARE. You have huge brown eyes with long, perfect eyelashes. You have a luxurious mane of hair. You can’t even see that big scar from your surgery. In fact, it’s very hard to get all that hair wet during your bath. It repels water like a dog…in a good way, though. Girl, you make me so proud with your “I do it!” attitude, even if it stings a little sometimes. By that I mean that while I am so glad that you are self-assured and brave and independent, sometimes I want to shrink you tiny again so I can just hold you. That’s the bittersweet part, love. I never despair the passing of time. Really. I don’t want time to slow down or stop. Watching you grow is beautiful and special, and each birthday we’re given is an absolute gift from God. ABBA–who prominently stars in our dance parties–wrote a song called, “Slipping through my fingers,” and it describes your growing up best:

Slipping through my fingers all the time,

I try to capture every minute,

The feeling in it

Slipping through my fingers all the time.

Do I really see what’s in her mind?

Each time I think I’m close to knowing,

She keeps on growing

Slipping through my fingers all the time.

Sometimes I wish that I could freeze the picture,

And save it from the funny tricks of time,

Slipping through my fingers all the time.

I want so many things for you, baby. I want you to always look in the mirror and smile, just like you do right now. I want you to continue to drop it like it’s hot in the middle of the aisle in the grocery store when one of your jamz comes on. People may laugh, but you’ll get to groove to some awesome music, and dance parties have always made us feel better. I want you to always walk into a room, belly-first, knowing that you sparkle, and that you are an important person. The world will try to smash that out of you, but I’m going to do my best to fill up your love-tank. Your daddy will, too. I cherish these times with you, Darcela. I really do, even when you’re unreasonable, which is a lot because you are two years old.

You are the answer to so many prayers, and I know you are going to do so many big things. I just pray I get to see you accomplish all that God plans for you. I’m so proud of you little girl.

Broken for a purpose

Welcome back, Beka

Tomorrow’s the big day—back to work. Surprisingly, I’m not dreading it. The last three months have been so wonderful and also SO hard. I counted up all the appointments as well as I could remember–

OB/GYN: 3

Pediatrician: 8

CT scan: 1

Craniofacial surgeon: 2

Neurosurgeon: 1

Neurologist: 1

Cardiologist: 1

Orthopedic surgeon: 2

ENT: 1

Pre-op anesthesia: 1

Additional labwork: 4

Hearing screen: 1

ABR testing: 1

Helmet fitting: 1

Yeah…that’s roughly 28 appointments that I’ve been to on this maternity leave. And I’m not even including the 3 separate evaluations and 1 physical therapy appointment we’ve had so far because those were done in our home. I am tired, y’all. I am also thankful. I’m thankful that I was able to go to these appointments to rule out and/or monitor this baby. I’m glad we’ve been able to take the best care of him. But I will also throat-punch anyone who suggests that maternity leave has been vacation just because I haven’t been working at my job. Because my job is WAY easier and less stressful than taking my newborn to sit around in shady waiting rooms for 30ish appointments during the worst flu season in years. Appointments with potentially scary diagnoses. Neurosurgery and a PICU stay.  So, it has not been a walk in the park.

Even so, I feel really strong now. I’ve been lifting emotional weights for months, so I’m basically Channing Tatum now. My anxiety is completely under control, I’m back to running again (slowly), have lost all baby weight plus some (here’s looking at you, stress), I’m killing it in grad school, and I’m about to return to a job I love. While I am head over heels in love with little Clark, this maternity leave has been mind-bendingly hard. I have been the empty, crushed paper cup littering ball fields after the big game; discarded and swept aside. But…I have also been superwoman. The one with a clean house, fed kids, going on a run before showering AND shaving 💁🏼‍♀️, with dinner on the table when her husband gets home.

I’m thankful to my Jesus. No, He did not remove my suffering, and He did not remove my anxiety. He did; however, JOIN me in my suffering and anxiety. He healed my son, and surrounded me with people who ferociously love me and come to my aid on a moment’s notice. These people–my parents, sisters and brother, are like a pair of Spanx. They make me feel good, like I have my shit more together than I do and make me feel more confident without actually changing anything—just by staying very close. Also, Spanx aren’t easy to peel yourself out of, and my family is kinda like that, too. You can’t escape the Alfords. Thank God for that, too.

So, as I head back out into this world, I can say that I was broken for the better, and I feel stronger than I ever was.  This life is hard. Sometimes, it’s really hard, but there is always something bright to look toward, even if it’s just clinging to the smallest fleck of hope. Trust in Jesus, fiercely love others, and your rainbow will shine through, if you’ll just take the time to notice it. 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!

https://raynershinecom.files.wordpress.com/2018/02/img_3302-2.mov

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 ❤

What the hell is craniosynostosis, anyway?

And why I know so freaking much about it

What is with this weather, man? We’ve had snow twice this winter in South Louisiana. It’s cold and weird, but I don’t hate it. School closed for an entire week, and we got to play together as a family. From looking at social media, most parents were complaining that their kids were making them crazy. Maybe Darcy makes me crazy on a daily basis, but I honestly loved having Ben and Darcy and Clark and I home together. It was a continuation of Christmas break, and I think we needed the down time. Ben is in school at LSU for his last semester of engineering, so that’s why we’ve been able to enjoy the breaks together. He does work part-time, but his office was closed during the snow fiasco because the entire state of Louisiana shut down.

Now, some of you remember that Darcy was diagnosed with craniosynostosis at 5 weeks old. What is craniosynostosis? Well, when babies are born, their skulls are not one solid bone. They are actually several separate bones held together by lines of fibrous connective tissue called sutures. This allows the skull to expand and accommodate a rapidly growing brain. With craniosynostosis, one or more of these sutures is fused too early meaning proper skull growth cannot occur. If the skull cannot grow as the brain grows, intracranial pressures can increase and cause brain damage. Also, the child will have an abnormal head shape. There are certain syndromes associated with craniosynostosis, but most cases are non-syndromic and only involve one suture. Darcy’s was non-syndromic sagittal craniosynostosis. She underwent a total cranial vault remodeling surgery at 12 weeks old. It was hard, it was brutal, but she is growing, thriving, and developing perfectly.

I am both a nurse and a mom. A lot of people say, “When it’s your kid, it’s different,” but I seem to be an exception. It’s really hard for me to turn the nurse off. I assess my children critically and clinically. I knew that Darcy was a beautiful child, but I also knew her head shape was different, that her temples were dimpled inward, her head was narrow, she didn’t have posterior fontanelle, and that she had a strange ridge down her head. I remember mentioning it to her pediatrician as he assessed it. We got scans that day, and she was diagnosed. When Clark was born, I noticed immediately he didn’t have a posterior fontanelle and had a small ridge down his head. I specifically asked the neonatologist (who was stupid about a lot of things) if the MRI showed craniosynostosis. He said “No way.” I can’t let things go, and it gets me into trouble sometimes. When something is bothering me, I get total word vomit–I just blurt it out and throw my persistent thought/worry out into the universe, and not always so elegantly. Ben jokes that he never has to wonder what’s bothering me because I’ll just straight up tell him. In my heart, I knew Clark had craniosynostosis despite what others said.

“But the MRI showed he didn’t.” “His head doesn’t look as narrow as Darcy’s.” “He looks just fine.”

I mentioned my concerns to our pediatrician at Clark’s one-month appointment, and he said we could just continue to monitor it. That held me over for like 2 days before my propensity to not let things go led us back to his office requesting imaging studies. We got an X-ray of Clark’s head that was consistent with a craniosynostosis diagnosis. Our pediatrician then referred us to Darcy’s craniofacial surgeon who we love ♥️At that appointment, he told us that he was moving to California in 2 weeks and unfortunately the neurosurgeon on Darcy’s team has retired😭

–This was devastating to hear, but moving on–

He told us that without a CT scan we couldn’t be 100%, but that Clark looked like he had partial sagittal craniosynostosis whereas Darcy had complete sagittal craniosynostosis. This would qualify him for a less invasive surgery using an endoscopic approach. This means they would use a small incision to remove the fused suture, and then use helmets to shape his head over the better part of a year.  Our CT scan the following day confirmed what we knew—Clark has partial sagittal craniosynostosis. I asked our craniofacial surgeon why both of our children had this and what could cause this genetically. He said that the sagittal suture is typically NOT associated with genetic origins. He said that it was “extremely rare” to have 2 children with non-syndromic sagittal cranio. I asked “How rare?” and he said that he had actually never seen it occur twice in a family. We’re SpEcIaL! Ha! Honestly, after the hell we’ve been through, the fear and anxiety, this seems like small(ish) stuff. It’s probably a mark of how bad shit has been when you look at neurosurgery as not a big deal, but we don’t see it as that big of a deal. Not after what we’ve been through. This is fixable, man.

After Darcy was diagnosed with cranio, I swore I would never miss that diagnosis as a future practitioner. I never anticipated having another child with it, but we did, and I didn’t miss it. We’re getting an early jump on it, and we should be meeting with our new neurosurgeon in the next few days to come up with our surgical plan for baby Clark. He should also begin physical therapy in the next couple of weeks as well. His tone IS improving, and he’s pretty much perfect in our book.

Darcy loves “baybee.” In fact, we wish she would love Clark less. She excitedly runs up to him and throws blankets over his face and body so he won’t get cold. She jams his pacifier into his face as he screams in protest. She tries to pick him up and is the opposite of gentle. It’s actually probably a good thing he’s going to be wearing a helmet 23 hours a day after his surgery. Darcy has added so many words to her vocabulary. She got a toy kitchen from Santa Claus and begs us to play in her “kitch” every day. She loves to throw and drop things while yelling, “Oh, no!” She says “okay” after everything, loves to play outside, and yells, “Go Saints!” whenever she sees football on tv. Darcy loves to point to the chair, couch, or floor and tell us to “Sit.” We’ve been going to the grocery store every Sunday just the two of us, and she likes to help put the groceries on the conveyer belt. She’s the best little toddler I know.

I decided to return to grad school this semester because my life is very calm, and it’s a very rational choice. 😑That’s a glimpse into our crazy lives right now. It is legitimately crazy and unfairly blessed. I am thankful to my Jesus for this life. Love to all.

P.S. That picture is from our craniofacial surgeon’s office. We have the same picture of Darcy at the same age. It’s becoming this weird family tradition 😂

Clark’s story: Part II

Help from above that I don’t deserve

*Shelby was my nurse that night. She came in and introduced herself and told me that her plan for me was to remove my catheter somewhere around 10:00pm, which was roughly 12 hours after my surgery. At that point they would get me into a wheelchair, and I could go to the NICU to see Clark. I would keep the pain pump overnight. The cardiologist had completed an echo on Clark and said that everything looked pretty normal. Mild variation and they would follow it. My mom, sister, dad, and Ben were in the room with me when the neonatologist that was present at Clark’s birth came into the room. She said that they had done some preliminary testing per MFM suggestions and that genetic testing had been sent off and that x-rays of his head, neck and abdomen had been done. The x-ray of his head showed a cyst in his brain. The x-ray of his spine showed flattened, deformed vertebrae and the x-ray of his chest showed significant rib abnormalities on the right side of his chest with flattening of the rib bones.

There was no moment of shock for me–I cried immediately. My nurse walked in, saw what was happening and left. The doctor asked if I was okay. I just nodded. No, I wasn’t, but that should be obvious. I was distraught. I managed to ask her what we needed to do next. She said they would be doing an MRI of brain and spine the following day. That was it–news having been delivered, she left.  My sister and parents left, too. They were going to stop at the NICU to see and probably pray over Clark. I think they were too upset to say much. In walks Shelby with a wheelchair and a nursing assistant. “You just had major surgery, so you can’t stay for too long– you’ll hurt yourself, but you’re going to see your baby, now. Hold on, let me grab your medicines real quick.” While she was gone, I gingerly swung my legs over the side of the bed, stood up (ouch), and hobbled into the wheelchair. At that point, I think I would have crawled to the NICU if I’d had to. She walked back in, looked at me, and laughed and said “Well, let’s go.” She didn’t have to do this, and she was taking me about 3 hours early. So, off we went to the NICU, and I cried as they wheeled me in.

He was in this tiny isolet, naked save a diaper, and he was beautiful. They told me he was only on 1L of 02 and was doing really well. They figured because he’d been in so much fluid, and was delivered via c-section that he was unable to breathe well right after birth. It was quickly resolving though. He had a rib deformity–pectus excavatum. You can google pictures of this. It’s basically a sunken-in chest. Not all that rare or abnormal and rarely causes any other issues. They did not think it was causing his initial respiratory issues. Again, I asked if I could nurse him—no. They then took me through their orientation, and I hit the dilaudid button on my PCA pump like 83,492 times because they were explaining what a pulse ox was when all I wanted to do was touch my baby, cry, and tell them to shut up. Ben tried to explain that I had been an ICU nurse for over 2 years, so she nodded and tried to explain his heart rate monitor to me 🙄. Honestly, I know it’s their job, but I really wanted them to shut up and go away because I had just received bad news and wanted to process it without their explanation on germ theory and the importance of washing your hands. Under Shelby’s orders, I left a few minutes later.

That night was spent sleeping and waking up again fuzzy-headed and confused. It was a long night. I was pumping every 2 hours or so and drinking liters worth of water because I was so thirsty. Ben and Shelby poured up colostrum and half-carried me to the bathroom on a regular basis. I was so sore and my heart was hurting and I just prayed a lot. I couldn’t understand what I was supposed to be doing. Should I give up? Should I pray that God brings us through this? Should I just accept that Clark is very compromised and will likely suffer a lot?  I didn’t really know, so I just prayed for peace and comfort and healing for Clark. “Please give peace and comfort and healing for Clark.” I said this over and over and over again when I would wake up because it was the only prayer I had left.

The next morning I begged Shelby to come back that following night while she unhooked my IV dilaudid and loaded me with Percocet. I got up and took a shower. It hurt like hell, but I didn’t want to stay in the bed any longer, and I felt like I needed to get ready to deal with whatever the day was going to bring. I ate breakfast and got into the wheelchair to go to the NICU. When we got there they told us he was off oxygen and had been all night, and that he was doing well. I asked if he was peeing/pooping and she said, “Oh, yeah.” All very good news, and I was so happy. I asked if I could hold him and she said yes. It was a precious moment. Then a physical therapist walked in to assess his foot.  She said it was absolutely not clubfoot. His foot was positional and would need to be massaged, but was not going to require clubfoot therapy. Our OB and neonatologist told us they didn’t think it was a clubfoot, but after all the bad news it was really hard to believe that something could be okay. Hearing a third person confirm this and explain why it wasn’t a clubfoot was helpful and made it more real and believable to us. The nurse said I could try nursing him, but that he may not latch. She got a lactation counselor from the NICU to help me and observe for any issues. I snuggled him up and he latched immediately. Ate for 25-30 minutes. Another answered prayer. Because he did so well and I was a STM with breastfeeding the doctor agreed to remove the IV fluids. He was now off O2, off IV fluids, peeing/pooping, and eating. He looked so beautiful and I was just ready to get his MRI over with. We left to go eat lunch in my room,  and when we came back they let Ben hold him and bathe him. Then they took him to MRI which was supposed to take “an hour.” It took two and a half. So I got back down to the NICU and nursed him quickly. I told Ben he was getting out of the NICU now. They had no reason to keep him. The nurse tried to argue saying that he needed to be “observed,” and I shut that shit down quickly. “He’s eating, and off 02. What are y’all doing for him here besides letting me accumulate a huge bill?” She left and got the NICU doctor who was a new face. He said the results of the MRI were back and they were normal. NORMAL.

Let that sink in.

The MRI of his brain was normal. No brain cyst. No skull abnormality. No hydrocephalus. No evidence of craniosynostosis. There was some fluid around the brain, but very minimal and considered normal for c-section baby. The MRI of his spine was normal. No compression, or misshapen vertebrae. The MRI was not of his ribs so they still look “off,” but are causing no distress. I cannot even begin to tell you how many times I asked, “But what about the xray? Could it have been so wrong.” The neonatologist had no answers, but said that the MRI was conclusive and the brain and spine looked fine.

“But he was pierced for our transgressions, he was crushed for our iniquities; the punishment that brought us peace was upon him, and by his wounds we are healed.” Isaiah 53:5

 I then told the neonatologist we would like him back in our room now. After much discussion he finally had to agree there was not anything wrong with him, so he reluctantly agreed to let Clark leave the NICU with us. The very same neonatologist visited us the following morning and wanted us to follow up with neurology on Friday for “completeness.” Whatever, man.

I still don’t have the words to say what’s in my head. It’s not even a discussion that I hate MFM. They have used ultrasound imaging every month since August and told us that Clark will have major issues forever. They have said that I was unable to have this baby in any other way than a c-section. They said he had a definite clubfoot. They said he had ventriculomegaly significant for shunt consideration (at my final appointment) and most likely craniosynostosis. And none of it has been proven true. Are they really that incompetent? Are they complete idiots?

I cried in my room to my mom on Thursday. It was a day after his dismissal from the NICU and I was so upset about how everything had gone and the constant stress for months and months. I said out loud, ”Actually, maybe they did see all of that. I think God just decided to heal my baby.” Immediately, I felt sudden peace. The god-given kind. Giving voice to those words confirmed them. I know now without a shadow of a doubt that God DID heal my baby. I don’t know why. I know I certainly don’t deserve it, but I want you to know that He did it anyway.

I’ve been vocal about my disbelief that Clark would be healed. I just haven’t been able to drum up much faith about it. But over the last week especially I have just prayed that God would heal my baby–God please heal my baby.

Matthew 21:21-22 “Jesus replied, ‘I tell you the truth, if you have faith and do not doubt, not only can you do what was done to the fig tree, but also you can say to this mountain, ‘Go throw yourself into the sea’ and it will be done. If you believe, you will receive whatever you ask for in prayer.”

Now, we’re not completely out of the woods yet. Clark has pectus excavatum which ironically is the birth defect he DOES have that MFM didn’t find. Weird. And it can be sign of chromosomal abnormality. And the genetics tests aren’t back yet. And he has been referred to neurology because he has hypotonia (meaning he’s pretty floppy). So we aren’t out of the woods completely, but I have been made aware again–God is ever-present and he listens to our cries for help. He hears us. He cares. For every person who has raised a prayer on Clark’s behalf–thank you. From the bottom of my heart, thank you. Please keep praying because God is listening.

“’If you can?’ said Jesus. ‘Everything is possible for him who believes.’” Mark 9:23

So please. Keep praying with me. Believe with me. Love to all ❤️