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 ❤️

 

 

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 ❤

“Surgery? What?! I can’t hear you.”-Clark

Or at least that’s what he WOULD say

When Clark was born, he failed his initial hearing screen. He was a c-section baby, and a lot of times these babies retain fluid in their ears and even lungs because well…they don’t get squeezed in the same way they would if they were born via vaginal delivery. So, failing his hearing screening wasn’t all that impressive and we made an appointment for a re-check at one month old. He failed this hearing screening also. They performed another test and they were able to determine that one ear failed because of fluid but they couldn’t say for sure if the other ear was failing because of fluid. I didn’t know why he failed, but I KNEW he couldn’t hear me. He doesn’t respond to sounds. I can clap my hands and his eyes don’t even flinch toward the noise. Now, I had to worry if my child was deaf. They told me we could either repeat the hearing screen in 2 weeks or request an ABR to diagnose.

I chose the ABR testing. ABR stands for auditory brainstem response. It tests the actual acoustic nerve. So, basically, it can tell what’s wrong and how bad it is as opposed to the hearing screen, which can only say pass or fail with no information as to why he failed. I called and made an appointment for the ABR. Now, this was about the time that I wanted my child’s cranio diagnosed, so I had an appointment with his pediatrician the day after his second failed hearing screen. At that appointment, my doctor diagnosed Clark with an ear infection which probably didn’t help him with his hearing screen the day before. We started antibiotics and proceeded with our craniosynostosis diagnostics.

A week ago, we had his ABR screening. It was super stressful. Of course, I was worried Clark may be deaf, but it’s also kind of a tricky test. Clark had to be asleep for the whole thing which takes over an hour. I had to keep him up all morning and kind of starve him. That way, when we arrived at the facility, I could nurse him to sleep. My generally sleepy baby did NOT want to sleep because real life is a real beyotch sometimes. It took the first hour of our appointment for him to even go to sleep. Then it took an additional hour for the test to be performed. I was so scared he was going to wake up and ruin the test, and every time he stirred my heart would start pounding and I would internally scream, “NO!” Thankfully, once he finally fell asleep, he did not wake up. The audiologist explained the ABR test results immediately—cue the praise hands! The test determined that Clark had moderate/severe hearing loss, BUT that his bone conduction test was normal. This is super important because it tell us that his dysfunction is conductive and NOT sensorineural. For nonmedical people, this means his ears/hearing are probably fine, but they’re plugged with fluid resulting in hearing loss. Still. It hasn’t gone away like it should. It needs to go away for him to be able to hear. Tubes could help with this.

I knew that to “qualify” for tubes, they (ENTs) want children to have had multiple ear infections and be at least 3 months old, but I made an appointment with an ENT and prayed she would put tubes in his ears even though he is only 2 months old and has only had one ear infection. I hoped that they could just put the tubes in his ears when he goes under anesthesia for his cranio. I met with the ENT and she reviewed his history and said,”He failed 2 screenings and the ABR, has had an ear infection, can’t hear, and is going under anesthesia in 2 weeks, anyway?” I said, “Yes.” She said, “Let’s do tubes. If I can’t fit tubes in his tiny ears, I’ll make a small hole and suction the fluid out anyway.” I said, “Thank. You,” and I asked her to run away with me. Just kidding, but after a lot of disappointing appointments, this one was really great.

All that to say that Clark will also be getting tubes on the day of his surgery! I’m so relieved. There has been very little that I can do to help my son. Mostly, I’ve had to take the watch and wait approach, and I’m thankful we won’t have to do that anymore with this fluid in his ears.

Clark’s big surgery will be on Monday February 19th. I am ready to have it over with, but also dreading the recovery period. Darcy’s recovery was brutal. She cried for over 36 hours about 5 days after her surgery due to a pain crisis. For months, I would start having anxiety attacks when she started crying for any slightly extended length of time. Her craniosynostosis was more severe and the surgery was much more invasive than Clark’s will be. Her surgery required the top half of her skull to be removed, cut into pieces, and then put back together with resorbable plates and screws. Yes. Brutal. She had an incision from one ear to the other. His is endoscopic, which will require two smaller incisions on either side of his problematic, fused suture. Through these incisions, they will remove the portion of his skull that includes that fused sagittal suture and remove strips of skull bone on the sides of his skull as well. So, I don’t imagine he’ll feel awesome–it IS neurosurgery, after all. But he shouldn’t have quite as much pain as Darcy did. Within a week or 2, he will be fitted for a helmet to wear for the better part of a year. It will help to shape his skull as he continues to grow. *Bonus* It will also protect him from Darcy. He is not expected to stay in the hospital more than a couple of days. Hopefully, we will be able to go home quickly and start the road to recovery.

So that’s what’s been up.

Specific prayer requests include:

1. The surgery will go smoothly and as planned

2. Blood loss will be minimal, and he will not require blood transfusion(s)

3. His pain is well-controlled

4. We quickly leave the hospital, complication and infection-free

5. The tubes will solve Clark’s hearing problems

If you are still reading, thank you for being a part of Clark’s cheerleading squad. It has been quite the journey and this surgery is just another stop. I hope that Clark’s story will bring all the glory to our Jesus. He has been faithful to answer our prayer requests and has blessed us immeasurably with this little boy. We are thankful for your support, love, and prayers. Love to all.

The crushing weight of anxiety

My journey, my story, my kind of crazy

I wake up to hear Clark stirring via the baby monitor. It’s 1:30am. I’ve been asleep 2.5 hours. I get up to nurse him before he starts crying and wakes up Darcy. After nursing him, I go back to my bed, and try to sleep. I am exhausted. I haven’t slept more than 3 hours at a time since he was born 3 weeks ago. But I can’t sleep because what if Darcy heard him? Do I hear her? Is she going to wake up again at 3am crying? Why isn’t he settling down?! Is he going to go back to sleep? Please, God, let him go back to sleep. Do I need to go burp him again? Should I enroll in classes this upcoming semester? Or take a break? OMG! Go to sleep, Beka. Now I only have like 2 hours before he wakes up again, ready to eat! Shut up, brain, shut up!

And I didn’t go back to sleep because these (among other) thoughts are racing through my mind nonstop. Just like the previous night. And the one before that.

In the morning, I check to see if Clark is breathing–constantly. Did I turn off the coffee maker? What are we going to eat tonight? Is Clark still okay? Is Clark going to be okay? Do we have any paper towels? What if Darcy has another ear infection?

I’m easily able to convince myself that I just “have a lot on my mind.” I mean I’m a mother of two children that are under two years old. I’m a grad student that works full-time. I’m just a little stressed, and that’s why I’m having trouble and feeling anxious. Then the other thing with those symptoms happens…the heart racing, palm sweating, stomach dropping, limb paralyzing thing. It’s kind of like the exact moment where you remember that you forgot to do something really important. Except I haven’t forgotten anything, and knowing I haven’t doesn’t stop these feelings. I have exactly zero relief.

Anxiety–postpartum anxiety to be exact–is the worst, and these episodes can occur three or four times an hour lasting anywhere from 2-15 minutes and occur independently of my unrelenting, worrying thoughts. If I’m completely honest, it probably started with all the drama surrounding Clark’s pregnancy, and his birth, combined with the heavy postpartum hormonal shift, made it pretty terrible. Making matters worse, I felt guilty, and I tried to pray my anxiety away. Philippians 4:6 “Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.” But my anxiety wouldn’t dissipate because I was sick. My brain was, anyway. We wouldn’t be expected to pray away diabetes or high blood pressure, would we?

According to americanpregnancy.org, postpartum anxiety affects around 10% of women, but I’m pretty sure it is severely underreported. Why? Because women are scared of judgement. Of being ignored. Or of confirming their worst fear—that they are, in fact, a “bad” mom. Just last week I read this article, where a postpartum woman told her provider she was having persistently violent thoughts she would never act on, but was disturbed by. Yeah, they called the police on her, who escorted her to the ED, treated her like a criminal, and finally released her 10 hours later with a list of phone numbers to call for “help.” Zero support, zero medication, and zero empathy.

No.

Just. No.

That is so far from acceptable that I actually hurt for this woman. I know firsthand how hard it is to get help. You see, I experienced postpartum depression with Darcy. I claimed it was situational depression only because of her surgery, etc. It was hard and dark and affected my initial bonding with her. Thankfully, with meds, love, and support, it quickly abated and I became strong again. Towards the end of my pregnancy with Clark, Ben had mentioned he was worried I might struggle again once the baby was born. So in my favor, I had a husband who was looking out for me. This is important because when you’re bogged down with the weight of depression and/or anxiety, it can be hard to see things for how they actually are. So, when I confessed to him how insanely worried and anxious I felt, and that I didn’t know why, he told me, “Call Dr. B right now. Get help.”

My reaction wasn’t calm. “I’m not crazy, dammit! I’m just…I don’t even know how to explain it.”

“No, Beka, you’re not crazy, but the way you’re feeling IS making you sick. Call her.”

Dodging it, I said, “Well, my appointment is in a couple of weeks, so I’ll talk to her then.” There. That should satisfy him that I’m going to take care of it, and (bonus) will put it off for now. Because I’ll get better by then. Right?

“Call her now,” he insisted.

“But it’s Friday.” Even I knew that was a weak argument.

“Yeah, and her office is open. Call her, Beka. Now.”

“FINE!”

So I did, and I told her nurse, “Look, my anxiety is kinda bad. Ben said I should call…shouldn’t I just monitor it and see if it gets better?” She immediately responded,”No way! It will only get worse if we don’t do anything. We’ll start some meds now and see if we need to adjust the dosage when you come for your appointment.”

The second thing in my favor:  a matter-of-fact, yet compassionate response from my doctor’s office. When I returned to her office 4 weeks later, we decided to increase my dosage AND she gave me a PRN (as needed) script because I told her Clark’s surgery might just push me over to crazy town 😜. The reason I go into all this, and air my “dirty” laundry is because this is a problem. I’m a nurse, I’m educated, and it still took my symptoms, my husband’s urging, and my doctor’s following up to get me on the road to a more therapeutic place. If a link in any of those chains is broken, women will slip through the cracks and take on motherhood with an additional, massive weight on their shoulders.

So, maybe we should talk about this. Maybe we should de-stigmatize these mental health issues that are SO very relevant to our loved ones. We should listen, support, and help those we know are struggling. We need to look out for our friends when they’ve had babies and encourage them to seek help if they need it. If you are struggling, you aren’t alone. It’s going to be okay, mama. You won’t always feel this overwhelmed. Love yourself, give yourself grace, and get some help. Because your children need a happy, healthy mama, and you’re gonna get there. Love to all ❤