“I wish I didn’t live in a constant state of waiting for the next symptom. Every cry, every wince, every cough immediately sending me into fight-or-flight mode, wondering what was coming next, how long it would last, and how much pain my baby was about to endure.”
”I wish she slept in the car like a typical infant”
”I wish doctors would believe and help us”
”I wish I knew someone who has been through this”
“I wish I could give her whole milk like most babies her age.”
“I wish she could sleep on her own.”
“I wish we didn’t have to worry about every single swallow.”
“I wish the newborn phase wasn’t tainted by so much worry.”
“I wish she didn’t cry so much.”
“I wish her body would just relax enough for tummy time.”
“I wish we could pack her up and visit family and friends without thinking twice.”
“I wish we could do baby-led weaning like other babies her age.”
Do any of those thoughts sound familiar?
Yeah. I know you know.
You get it.
You understand not only the daily challenges, but the extras too. The worry about seeing family often enough. The stress of bringing your baby somewhere new. The sadness of watching other babies enjoy foods your child can’t have. The feeling that everyone else seems to be having a completely different parenting experience than you are.
And then there’s the grief.
The grief of feeling like the magic of the newborn stage was stolen from you. The grief of spending hours trying to comfort a baby who is clearly uncomfortable. The grief of looking back and realizing how much of those early months were spent surviving instead of simply enjoying.
I remember the two-hour car rides where my daughter screamed nearly the entire way. No matter what we tried, nothing seemed to help. I remember feeling helpless. I remember wondering if we were doing something wrong.
“What are we missing?”
“Why her?”
“Why our family?”
“This isn’t fair.”
Those thoughts played on repeat in our home.
What made it even harder was hearing the same phrases over and over again.
“She’ll grow out of it.”
“You’re just in the trenches.”
“The newborn phase is hard.”
“The digestive system matures around 6 to 9 months.”
“Most babies outgrow it by a year.”
Maybe.
But when you’re watching your baby struggle every day, those answers don’t feel helpful. They feel dismissive.
Yes, some babies simply need time.
But severe, persistent symptoms deserve attention.
A baby who is uncomfortable all day, every day deserves more than a label and a shrug.
In our case, the answer wasn’t “just colic.”
Our daughter had reflux. She had CMPA. She had dysphagia.
Once we started asking different questions, pushing for answers, and seeing the right specialists, pieces of the puzzle finally started to come together.
Life with reflux, CMPA, or dysphagia looks very different from life with a typical healthy infant.
You think about everything.
You pack extra outfits and burp cloths everywhere you go.
You check every ingredient label.
You worry about every feed.
You mentally prepare for long car rides.
You spend hours helping your baby pass gas, settle their stomach, or get comfortable enough to sleep.
You celebrate things other parents rarely think about—a comfortable bottle, a peaceful car ride, a symptom-free day.
And perhaps most exhausting of all, you carry the constant mental load.
The worry.
The guilt.
The fear.
The frustration.
The endless wondering if you’re doing enough.
To the parents who know exactly what I’m talking about: you are seen.
And while I do believe things improve with time, I also believe parents deserve support, answers, and appropriate evaluation when symptoms are severe.
If your gut is telling you something isn’t right, don’t ignore it.
You know your baby better than anyone else.
That doesn’t mean every concern has a serious diagnosis behind it. But it does mean your observations matter.
Keep asking questions.
Keep advocating.
Keep seeking answers when something doesn’t feel right.
Most importantly, stop doubting yourself.
Just because nobody around you has lived your story doesn’t mean your story isn’t real.
I see you, Mama.
I’m here for you.
And you’ve got this. 💜
The Patient Mama 