A Journey Built on Faith and Hope – This is Where it Began

June 28, 2020

I remember the morning at church I decided to be Baptized; feeling a relentless tug inside that today was the day to do it and knowing without a doubt that God was calling me into new life with Him. I’m not the first person to say that I honestly felt a shift inside from the moment I came out of that water, and as I proclaimed myself a believer in Jesus Christ as my Savior and King I remember in the back of my mind thinking, “will my faith stand the test of time? How will I react and who will I in fact turn to when darkness rolls in and I find myself in the valley instead of high on the mountaintop?”

My valley came (they always do) two months after our third, bonus baby Claire was born. Claire was everything we never new we wanted and so, so much more! Her birth was absolutely magical (another story for another day) and from the moment we brought her home our family felt complete. There were so many tender moments between Claire and her doting brothers, and my biggest concern at the time was if I’d be able to get her on a good sleep schedule with all the driving to and from school and sports I was doing for the older two.

Justin and I hosted my family for Thanksgiving and everyone kept commenting on how much Claire slept that day and how good of a baby she was. It was during her night feed late that evening that Claire got violently ill out of seemingly nowhere. The next morning she threw up again (like A LOT of throw up). I called the doctor and since our pediatrician wasn’t working we saw a newer doctor who upon examining her explained that he was pretty sure it was a stomach bug, but that there was another slight possibility of a condition called “pyloric stenosis” that can present itself between 6 and 8 weeks. He suggested we get an abdominal ultrasound just to be safe.  We debated going downtown to Children’s because it was Saturday and I thought, “why not just wait until Monday because if it is a virus, which it sounds like it most likely is, it will have run its course by then. If not, we can call and speak to our primary pediatrician and see about getting and ultrasound then.” We debated for a short while, but in the end decided we should go. A couple hours later we were done with the ultrasound and told we could leave and that we’d hear from our pediatrician with the results of the scan. Just pulling out of the hospital, my phone rang and when I realized it was the pediatrician from this morning and registered the solemn tone in his voice my stomach dropped into my knees immediately as my eyes flooded with tears before he even got his first sentence out. I don’t remember much of the call but I was able to grasp onto, “not pyloric stenosis,” “cysts in the liver biliary tree,” and something called “billiary atresia.” The doctor hung up, called back before we had even reached our driveway and explained that he was able to get us in to see the Liver Specialist at Children’s on Monday afternoon.

Two days later, as Claire’s symptoms intensified, we found ourselves talking with a liver specialist about the two possible diagnosis for what was showing in the ultrasound: the first – “Choledochal Cyst” and the second – “Billiary Atresia.” I’ll spare you all the medical details, but walking out of the hospital that day we were processing two different diagnosis; the second of which had us looking at a major surgery that week (if her symptoms got even slightly worse) and then a Liver Transplant in the very near future.

With our hearts racing and heads spinning from the information bomb that was just dropped on us, we still had to drive over and explain to both our parents in private what was going on, grab the kids and then drive home feed them dinner and go about bedtime routine as if our world had not just come crashing down around us. The next 72 hours were undoubtedly the darkest moments of my life. I sobbed into my husbands arms as I contemplated every parent’s worst fear and every possible scenario for how this could play out. I screamed in terror for Justin to come help every few hours as Claire continued to projectile vomit with a look on her face I will never unsee. I would rock Claire to sleep at night and beg God to answer, “what is all this for? Did you really just give us this child only to rip her away?” I was angry. I was confused. I was terrified to hear the further test results that would give us her exact diagnosis. I understood for the first time in my life why there is a saying “sick with despair,” feeling constant nausea and finding it almost impossible to uncurl from the ball I had shrunken myself into on our bed, as if that could in some way shelter me from the waves of fear that kept ripping into me each time I spent just a few moments thinking about something else only to be sucked back into the reality of the situation.

But, as dark and as scary as those first few days were, and as loud as my fear cycle in my head was, God did show up… and He was louder. His presence was so close in those days that followed that Justin and I felt an odd sense to just succumb to the emotion and gravity of it all. We prayed in every way we knew how. We prayed together and read the Bible out loud with each other more than I think we have done in our entire marriage.  Again, sobbing in the bed one day I was listening to my Christian radio station I love when Lauren Daigle’s song came on, declaring “I will send down an army, to find you in the middle of the darkness…I will rescue you!”  I’ve learned through my faith journey that when God speaks to you, for most people at least, it isn’t an audible voice, but rather a song or image, a thought deep inside that you know you wouldn’t normally have, or a message you hear over and over again pertaining to you. I have no doubt that God was calling out to me that day as I lye their broken-hearted and helpless. Jesus came to rescue us from our sins long ago and in all our humility and despair He continues to come to rescue us even today.

We witnessed the Army Jesus sent us for this battle we would face, through the many friends who brought us a warm cup of coffee, hot meals to feed our family and those who called or just showed up to pray with us and over Claire. If you’re in a valley in your life right now, facing uncertainty, battling illness or fear for the future; I pray you will know the Father I have come to put my faith in. He is a God who comforts you when you are weary. A God you can caste your burden’s on and who will strengthen you for the battles that lie ahead. But most importantly, He is sovereign; so even though my world can feel like it’s completely out of control, I know and can trust The one who is.” He freed a nation, parted the sea, and sent His only son to die the most violent death so that our sins would be forgiven. To know that Claire has an Almighty Father who set her apart and loves her countless more ways than I (hard to imagine possible), gives me faith in whatever journey is to come!

A week later — One small miracle came. A phone call from the doctor telling us that Claire does not in fact have Billiary Atresia, but the much more rare diagnosis – Choledochal Cyst. Oh and by the way, as it turned out – her violent vomiting which led us on this path to discovery was completely unrelated. Claire did in fact have the stomach flu.

We will take good news where we can get it and will rejoice in the Lord’s blessings, no matter how great or how small they may seem at the time.

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1 Comment

  • Reply Amy Zimmer Schneider July 14, 2020 at 9:38 PM

    Dear Alisia,
    You don’t know me, but your parents do. I will be following Claire’s story and praying for all of you. As a parent of a daughter with a birth defect (complete unilateral cleft lip and palate and Chiari Malformation). I can relate to your story in several ways. The fear for her future, the fear of surgery’s risks, and the need to rely on the wisdom and expertise of others, while holding dearly to God’s promises—we’ve been there! And, as hard as it is, and will continue to be for awhile, you will also reap benefits from this period of your life. It made our family much more aware of our blessings, by exposing us to those in the hospital who’s children had no hope. Even after our years of surgery, we remain aware of the hidden world of families who struggle, due to the health of a loved one, and sometimes, with “normal” families, realize our former shallow sight. This will deepen your values, and strengthen your family and faith. Claire will probably, like our daughter, be more emotionally mature for her age, and better able to interact with adults than most kids, due to regular interaction with many doctors and therapists. Other benefits, specific to Claire’s issue, I would not know about. In our Anna’s case, the inconvenient but necessary years of speech therapy from 2-6 gave her a huge, if accidental, head start on reading and school. And she loved her therapist, her “friend” who “played” with her. Claire is beautiful and obviously happy! Being close to her treatment center will somewhat minimize the role this plays in her life. It will be a PART of her life, instead of the whole focus. (We had it both ways and it can mean a huge difference not to have to travel for appointments, worry about your other children, and juggle other commitments). Most of all, Claire has a loving, faith-filled family to support her. She will be all God intended her to be! Our prayers are with you!

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