The days just before her discharge, the nurses put on the full court press, constantly encouraging me to have her fully vaccinated before we walked out of the hospital doors for the final time.
“But she’s not even supposed to be here yet!” I’d replied, questioning the logic of the recommendations. “Shouldn’t we wait until she’s the right gestational age?” I’d asked genuinely concerned. “You wouldn’t give these vaccinations in utero, right?”
I’d thought my questions were reasonable and rational but they were met with looks of incredulity and disapproval. The multiple assurances I’d received that full vaccination was perfectly safe for a baby born 12 weeks early did nothing to allay my concerns.
Then came the not so subtle insinuations from hospital staff that I was an awful abusive mother, that I would be endangering my child unnecessarily, and the uncomfortable push to get me to be compliant through guilt and shame.
“I won’t leave the house.” was all I said in reply, my expression fixed like flint. At that point, I was done having the discussion, but I’d wondered to myself if I was indeed making the right choice. What if I was wrong?
Quickly grabbing my cell phone, I dialed the doctor I’d chosen to be Zoe’s pediatrician. I was still sitting close to her bedside in the NICU when I made that call.
“Tell them that your pediatrician will handle all vaccinations after discharge. This will get them to back off of you.”
I’d felt instantly relieved that someone was actually listening. I’d felt heard. Maybe I wouldn’t have to live in the shadow of mommy dearest after all.
Certain vaccinations made more sense to prioritize to me than others, like the ones for respiratory type diseases.
“What about hepatitis? Why is that critical to have right now?” I’d inquired, genuinely curious. “How could a 3-month old baby be exposed to that if she can’t eat, take intravenous illicit drugs, isn’t sexually active, and isn’t around anyone else that has it?”.
I’d already decided that we’d isolate from most people for weeks, if not months if necessary.
I could sense the smile coming through the phone, as she easily answered my question. “We can definitely wait on that one. That recommendation has more to do with people not being vaccinated as adults. To increase the vaccination rate, the CDC decided to give it to babies.”
In that instant, I’d known I had chosen the right person to be Zoe’s primary caretaker.
I was totally enamored with this doctor, a brilliant, insightful, empathetic MD who was delighted to educate, support, advise, and only when absolutely necessary cajole her young patients’ parents into following directions. Over the coming years we’d come to get along beautifully as she easily fitted into the role of both primary care physician and trusted adviser.
Doc, as I affectionately began to call her, hadn’t hesitated when I’d emphatically stated that I wanted to get Zoe back on 100% breast milk. I had not been surprised when Zoe’s acid reflux symptoms stopped within days of taking her off of a dairy based formula.
Doc didn’t bat an eye when I told her I only wanted Zoe to receive one vaccine at a time so that I could monitor her for any ill effects. I was willing to drive across town to the medical center every two weeks to spread them out if I had to.
Not only had she readily agreed to this, but she’d asked me to give her a copy of the vaccination schedule I was using, and then made it available to other parents who had similar concerns.
She’d marvel at Zoe’s progress and her development, and had celebrated with us at every checkup and when every milestone was reached. I looked forward to speaking with her and cherished our friendly interactions. It was a perfect model of what I envisioned a doctor-patient relationship to be.
When necessary, Doc made sure we got access to the best of the best pediatric specialists in Houston and she’d also been completely supportive when I’d told her I was going to go out of state to have Zoe evaluated by a functional medicine doctor.
As soon as she was old enough to be seen, Martin and I had taken Zoe to the UltraWellness Center in Massachusetts. Because of my own personal experiences and insights gained from working with the doctor, nurses, and nutritionists there, I’d been confident that I had gathered the best possible team of practitioners to help Zoe overcome any lingering issues related to prematurity.
One by one, every concern we’d faced with Zoe’s health was addressed. Every challenge was overcome. The weight of the world had finally lifted from my shoulders and I’d stopped worrying constantly whether or not she would be alright physically.
Which is why I was so dismayed after she contracted hand, foot, and mouth disease after we visited a wildlife preserve in Austin, then subsequently developed a chronic cough.
Unlike all the other issues, where we’d quickly identified the root cause of her symptoms, this one seemed intractable.
The pediatric allergist we’d seen had wanted to start Zoe on steroids, risking stunted growth for life. I’d declined treatment. I still remember him saying later, after I had discovered what was actually causing her symptoms, that if it was his daughter he would have declined treatment as well.
But the answer would escape me for nearly a year before I’d discover what was triggering Zoe’s coughing, and before I did, another specialist would uncover an unrelated, life threatening condition in my quest for answers. One that not only caught me totally off guard, but that I was completely unprepared to deal with emotionally.
The day of that visit with the ENT had not gone well. He’d unceremoniously shoved a probe up Zoe’s two year old nose with no numbing medicine, causing her to scream and thrash about uncontrollably while he’d completed his exam. I had to restrain her while all this was going on and I’d felt awful and helpless as her eyes met mine pleading for me to make it stop. I’d nearly started weeping myself, the idea of her being in pain that I was allowing was almost too much for me to bear. Zoe would remain fearful and reserved for many years after that visit whenever we’d see any doctor.
As the ENT removed the probe and started speaking to me, time stopped all together. He casually explained, “I think I know what’s going on. Your daughter has two cysts blocking her airway. They were most likely injuries caused by her being intubated in the NICU. We’ll need to schedule two surgeries about a month apart as soon as possible. When you check out, the folks at the front desk can help you get everything set up.”
He hadn’t seemed alarmed at all. Just another diagnosis. Just another surgery to schedule. Another day. But for me, I’d felt like the world had just ended.
In the coming days I’d become absolutely terrified of the idea of Zoe having to go under anesthesia twice for surgery at her age. I was certain that something would go wrong, and that Martin and I would lose her. I’d convinced myself that the last two years of miracle after miracle were just a temporary reprieve that God had granted us for a beloved child that had defied all odds to get here in the first place.
For a few days, I chose to deny our impending reality, searching high and low for any other possible solution. I’d desperately tried to find any other doctor that would tell me there was another way – that surgery wasn’t absolutely necessary.
One of Zoe’s functional medicine doctors was open-minded and encouraging, but she’d reiterated repeatedly that she was not a specialist in this area, and would defer to the ENT.
“Maybe we can wait and see. Speak to the surgeon and get his opinion. I’ll defer to him on this.”
I clung to her maybe like it was my last breath. Immediately, I’d called the surgeon’s office and relayed the idea of postponing the first surgery to one of the available nurses. She didn’t sound very enthusiastic about the idea, and promised to have the doctor call me back as soon as possible so that I could discuss my concerns with him directly.
Minutes later, I’d get a personal phone call from a very bewildered surgeon. He was disturbed at my asking questions about delaying surgery while I searched for other alternative treatments. He was emphatic that there was no other way to deal with the issue.
He’d sensed that I was about to dig in my heels, when I’d said, “If this was caused by intubation, then she’s lived with it for two years. How could a few more weeks be that big of a problem?”
I knew he was on the verge of becoming angry with me, and I could sense his frustration over the phone. “Listen, Mrs. Stitz. I can’t in good conscience recommend a delay of any sort. If your daughter catches a cold or a virus and experiences swelling of any kind, her condition could cut off her airway completely. She could suffocate. Refusing surgery could be catastrophic….and deadly.”
My stomach dropped as I conceded that the risk of delay was too great to deny any longer – especially as we approached cold and flu season. I thanked him for speaking to me and resigned myself to the idea that we’d have to move forward with surgery.
Even though I knew she would be in good hands with this surgeon, I was completely paralyzed with the fear of losing her from that day onward. It wasn’t rational. But it was an awful, dreadful feeling of certain and impending doom.
I had never felt despair like that at any other point in my life – not from my near death birth experience, and not from any of the other traumas I’d lived through up to that point.
Something about this time felt different. It was a palpable, tangible fear.
In the intervening days, I’d start to suffer from insomnia. When I did sleep, I’d have disturbing nightmares. I was a complete and total emotional train wreck, crying myself to sleep every day over the following weekend.
I was inconsolable, but I’d kept the feelings of dread to myself. My futile attempt at trying to hold my emotional self together was like trying to hold a hemorrhaging, gaping wound together with an extra small band-aid that had already lost its stickiness.
I’d somehow managed to put on a good front for everyone right up until the first day I attended a brand new Women’s Bible study for the first time.
The drive to the church itself was a treacherous journey. Zoe, unusually articulate for a two-year old, had been telling me on the drive there that she wanted to go to heaven and be with God.
For any Christian parent, this type of declaration from a young child would be music to the ears. But for me, it was an omen of things to come – a harbinger that she would not be long for this world. Just a few days earlier, a cousin had recommended the book “Choosing to See” about the untimely and tragic death of Steven Curtis Chapman’s young daughter. I’d purchased it on Amazon, but didn’t have the heart to read it. I was all but certain I was being prepared for a devastating loss.
I hadn’t experienced the same level of fear when I was facing the possibility of my own death in the hospital. My only means of understanding the difference was that I loved and cherished her young life more than I did my own. And I’d gladly exchange my life for hers if anyone had asked.
With Zoe’s arrival into my life, it was as if the human-sized hole that had been in my heart had been filled again. That hole, a deep chasm had been created by the death of my first love, Forest, when I was only four years old. Forest was the 77 year old first cousin of my maternal grandmother.
He lived with my parents, my oldest sister and I for several years. A grandfather, caretaker, and playmate all rolled into one, I remember more of him than I do my own parents from my preschool years. His sudden death in my early childhood left a soul wound from which I have yet to fully recover or heal.
Zoe’s birth eased Forest’s loss, one that I had carried around for nearly 40 years.
As I walked through the doors of the church, my heart was heavy – like a 2-ton anvil had been inserted inside of it. I don’t remember anything that was said in the general session. I couldn’t remember the name of the lady whose group I was assigned to, or where I was supposed to be.
Every conscious thought was consumed with angst and worry and fear.
The chairs in the room were arranged in a circle. I sat down quietly, trying my hardest to keep from emotionally vomiting over the women who didn’t know me from Adam. But I couldn’t do it.
As soon as I opened my mouth to speak, I crumbled, dissolving into a tsunami of salty tears. My voice shook violently and I could barely get my mouth to work right as I tried in vain to introduce myself. Embarrassed and mortified, I’d managed to calm myself enough to apologize profusely to the group for my uncontrollable outburst. If I could have held it in and never said a word about what was going on, I surely would have. I always had. But this time I just couldn’t maintain my composure and remain stoic. The dam broke and my emotions flooded the room, washing over everything and everyone present.
I don’t know how I was expecting these women who I’d never laid eyes on to react to my behavior. Not well, that’s for sure. Way to make a first impression, I’d thought to myself when I finally calmed down.
But instead of being met with eyes of censure as I’d fully expected, I was instead met with the eyes and arms of compassion and empathy. As women of all ages gathered around me, laid hands on me, and prayed over me, I felt the agape love of God that I needed so desperately in that moment envelop me.
To this day, it is still one of the most beautiful expressions of love that I have ever experienced in the body of Christ. I didn’t have a single ounce of strength left in me to see me through the coming days. But God, in his divine providence, had arranged beforehand that I would attend that women’s ministry, and join that core group, on that day, so that I could be in the presence of other believing women and leverage their strength in place of mine.
Over the weeks to come they would rally on my behalf. These were the spiritual giants who would see me through the coming battles like the mighty warriors they all were.
As the day of the first surgery drew near, I continued to battle my fears. I knew Zoe was being covered in prayer, but I was still scared out of my mind that something was going to go wrong during one of her surgeries.
In the middle of the night one evening, as I lay weeping in bed, my shoulders racked with my sobs, I’d sensed a calming presence.
“Don’t be afraid. She is going to be ok.”
It wasn’t an audible voice, but it is best described as a statement I heard spoken in a voice distinctive from my own inner thoughts. As if someone else had quietly whispered into my soul. That had only happened to me once before. I am certain it was a message from God.
I calmed down instantly and wondered in my heart about what I had just experienced. An inexplicable peace washed over me, and from that night on, I had no fear about the coming surgeries.
On the days of surgeries, which were 30 days apart, my core group was with me virtually. Zoe’s surgeries had been scheduled at a time when the group would physically be together at church. As a result, I was able to text them updates of what was happening and they in return interceded in prayer on our behalf.
Both of Zoe’s surgeries were successful and uneventful. The surgeon had decided to take photographs to reassure me that surgery was absolutely necessary and that I had made the right call.
A few weeks later, I would even discover through providence and observation that Zoe’s chronic cough was being caused by a food sensitivity. Addressing her year long symptoms had been as easy as removing one food from her diet.
Once again, life would go on.
I was sure I’d made it through to the other side. From the valley of the shadow of death to the highway of everlasting peace.
But I hadn’t actually made it through.
What I’d actually done was to set in motion a chain of physiological events that would come back to nearly destroy me seven years later.
Seeds I’d sown unwittingly, by bathing in emotional misery and making a lifelong habit of not dealing with trauma in healthful ways, would eventually grow into a harvest of physical sickness I would reap at a later time.
NOTE: The Story I’ll Tell is a series about my personal heath journey.
Check back soon for Part Six of my story.
ABOUT THE AUTHOR: DALILA JONES STITZ
Founder and CEO, Health Insurrection LLC
Dalila is a native Houstonian and currently lives in Switzerand with her husband and two kids. She received her health coach training through the Institute of Integrative Nutrition and Hallelujah Acres and teaches in-home bible studies and online courses.