BY: Michelle Liberatore
When you become a parent, there is no handbook or Owner’s Manual that comes with your brand new precious baby. That new little bundle that you clothe in 5 layers, sporting their newborn hospital cap. That tiny squishy human that you’re constantly re-checking the infant car seat for (at least ten times), to make sure you are safe to make that first drive back home.
Maybe you had already prepped for that experience by reading that trusty handbook like “What to Expect When You’re Expecting,” or as the months pass by you’ve read, “What to Expect During the Toddler Years” (And believe me, I had my nose in those books periodically to help save my sanity! Because, what DO you do when your baby/toddler refuses to nap?) But, what about the books like “What to Expect When Nothing Goes as Expected?”
I sure could use one of those books right about now.
Our 2 daughters certainly have never been “textbook” children, and we have been pretty keen to quickly adapt and go with the flow. A baby with horrible colic, who wouldn’t sleep unless you held and rocked her to sleep while she also demanded that you kept your hand on her for approximately 27-57 bajillion minutes until you could pull your sleeping-pins-and-needles hand away and tiptoe out of the room backwards. Another child that had chronic allergies and ear infections and several surgeries at a young age. Yep, definitely not what we expected. But, we adapted, prayed, sometimes cried in exhaustion, passed the baton back and forth in the middle of the night, and made our way through those phases of early infancy and childhood.
Our current situation though? Well, nothing quite prepared us for this. There really aren’t any books that can train a parent to navigate an illness that has the potential to rip the God-given personality or freedom of your child away and replace it with a tormented version of what they once were. But, that is what we are living each day.
Our daughter was ill last year in March of 2019 with something that seemed like a very minor/benign upper respiratory illness/infection. This illness wasn’t like any others, though. It was quickly followed by our daughter developing terrifying symptoms: a fear that everything was poisoning her or that her breathing would stop, hallucinations and insomnia, multiple crippling panic attacks each day, loss of coordination and balance, sensitivity to lights/sounds, strong headaches and muscular aches, extreme separation anxiety, becoming combative and aggressive, and ultimately losing interest in activities that used to bring her joy. She later developed sensory processing issues and no longer eats foods that she once loved. This all happened almost overnight, and many symptoms, while much better today - are still there in a much more subtle form.
Our daughter was diagnosed with P.A.N.D.A.S or Pediatric Autoimmune Neuropsychiatric Syndrome Associated with Streptococcus (Strep Throat). Having an answer was a huge relief, but it still didn’t offer much framework for the steps ahead.
This past year has had more doctors, specialists, therapists, labs, pharmacies, government meetings and hospital visits than we had ever had in the decade prior. More heartache, more confusion, more agony, more despair and more questions than we ever anticipated as a family unit. But also sprinkled in there? More resolve and more endurance.
While we don’t have a handbook to help us figure this journey out, we have found some wonderful PANDAS families across the country who are in the trenches with us to support us and help us know that we are not alone. We are helping to write this handbook, together.
Thankfully, I am reminded that while there is no specific manual or handbook for this specific situation in our lives, there is no situation on earth that God hasn’t already addressed in His handbook.
Thankfully, I am reminded that while there is no specific manual or handbook for this specific situation in our lives, there is no situation on earth that God hasn’t already addressed in His handbook. And I am so grateful to have His Word to guide me. His love is what helps us endure the sleepless nights. His love reminds me to cradle my daughter on my lap one more time and reassure her again that she matters and it will be okay. His Holy Spirit helps me to have the words when I don’t know what to say to calm my daughter’s soul. His loving reminders help me to recall the scriptures that I need at just the right time. His love and justice helps me to fight for governmental change for my child and children just like her who don’t have access to the care that they need. His knowledge helps me navigate treatment options and medicine schedules. And just when I feel like I can’t do it any more, His love and mercy replenishes my exhausted soul so I can do it all again tomorrow.
Parenting children who are overcoming giants in their lives can feel like the biggest battle we may ever face in life. But God always goes before us. There is nothing we face that He cannot help us to endure. Sometimes it can still feel a little extra quiet when I pray and I still wonder how this will look on the other end, but I know that my fierce love as a parent is infinitely small compared to God’s love for me and God’s love for our daughter. Just as I would never leave my daughter - no matter what - I am reminded that God has never left my side. And that’s one of my favorite reminders in His handbook:
“The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged." - Deuteronomy 31:8.
About the Writer:
Michelle is the wife to Tony and the mother to two mazing girls, Morgan and Kalin. She has a huge heart for God and seeing students know more about Jesus. Her and her husband Tony have been at Plum Creek for 10 years.