The words that no parent ever wants to have to utter.
Nevertheless I found myself one sunny October afternoon, leaning over my tiny son’s crib rails and throwing this exact prayer, this plea, out into the universe in the hope that God would catch it and pay attention.
I like to think he did just that.
Our second son was born with a mysterious cyst on his head, something that though I felt it from the moment he was placed, hot and squalling into my arms, never brought me much pause for thought. After all, here he was in front of us, full of life and brimming with personality.
Common sense told me that he was just fine and the early clinical examinations backed me up. In my mind he was finally safe, here with us on the outside after several months of hair raising trips to the birth center for reduced fetal movement and worryingly hard to find heart accelerations on his part.
Honestly, total relief was all I felt to have our little love here with us finally, present where we both could watch over him and the responsibility for tracking his well being was no longer mine alone.
And so initial pediatric evaluations rolled into family doctor visits, which merged into dermatologist consultations, which in turn led us to radiologist appointments, and finally, exhaustively, we found ourselves sitting across from a variety of pediatric neurosurgeons, each one telling us that the need for sedated MRIs and skull x-rays was actually very real. Further investigations on our so very new baby boy all at once had become a frightening must.
So that’s what we did at 3 months old.
And then came the recommendations. Lengthy professional discussions on what it was and what we needed to do about it ensued, as did an array of medical jargon and consideration that sent us spiraling into the depths of WebMD and back again. Honestly, it just really really sucked.
Most of the doctors are in agreement right now that it’s most likely a dermoid cyst; a usually benign, mostly slow-growing mass of tissue that can include the same cells that form teeth, hair and other freaky bits and bobs. As for how it can or will affect him, well that’s still up for debate right now.
Some felt it was beginning to interact with the skull, which if that is the case would mean the bone will need to be removed in that area. Some felt that it wasn’t involved at all yet. Here’s to hoping.
One particularly frightening diagnosis involved the cyst having eroded away that entire area of the skull, thus poking through and irritating his brain. That last doctor didn’t have an ounce of what you or I would consider to be a good bedside manner, and thank goodness all the evidence points towards him being wildly wrong in his interpretation of the MRI.
I’m learning every day that as parents facing any kind of medical challenge with our kids, we need the support of the medical community.
We need to know we’re being heard, appreciated, valued. I’m not talking about storming into consultations wielding results from Dr. Google and laying down the law of what’s acceptable in terms of treatment before we even know what we’re dealing with. I’m talking about calm discussion. Compassion. Professional sympathy. Carefully selected verbiage that will both inform and steady us to make the huge decisions in our child’s (and our) life.
I’m talking about communicating to us about our precious child in the same way you would wish someone would communicate to you about yours.
In among all the scary stuff, all the huge words and the big titles, we’ve found such hope though.
In fact not only have we found hope for our son’s well being and his level of care, but honestly we’ve found hope for the community we’re graced with being a part of and for the goodness to be found in those medical professionals left in the world that truly, truly are called to rescue and to care.
Several doctors during this time (though one in particular comes to mind) played a huge role in how we have addressed and made plans for our son’s treatment, and the beautiful thing about that? They did it all without even knowing me or my son, utilizing their expertise and their personal time to assist us purely because we were in need and they knew how to help us.
They were simply friends of friends, strangers who heard about our need on the grapevine and decided they could make this journey just a little bit easier on us.
I swear to you my faith in medical professionals and seriously, humanity, has been permanently altered for the better because of these individual doctors.
I wish that every person could have access to the resources and blessings that we have when it comes to making healthcare plans for loved ones. I wish that every person would be exposed to a trusting, compassionate relationship with their doctors when life’s hard pressing decisions come knocking. I wish I could share even an ounce of the relief this mysterious support has gifted our family.
These are the trials that build us and exhaust us.
Going it alone is both deeply confusing and so very difficult, especially when your choices affect your own child in such an immediate way. But realizing that you couldn’t be further from alone when the big stuff actually hits? Well, it’s moments like that that encourage us to reach out and lend a willing and empathetic hand to others too.
So God, please, please let me keep me baby.
Please let the surgery go to plan and please let the healing be quick and simple.
But please help me to bless others through my family’s own trials at the same time. Because it’s clear to me now that good can always be found, even here, in the most difficult and frightening of places.
My son was born with a small dermoid cyst as well, over his first year it grew to the point that we had consulted several pediatricians, a pediatric dermatologist, and finally an ENT whose specialty was reconstructive surgeries. He had several CT scans to determine whether or not the cyst had grown through his skull and attached to his brain. At 18 months he underwent surgery to remove the cyst and had his skull sanded down so that both areas of his temple were evened out, we didn’t know until after a fearful mid surgery call that there was a piece of the cyst the size of a hair had gone through his skull but was able to be removed intact without damage to his brain. He is almost five now but I will never forget the tears and desperate prayers that got us through his operation and recovery.
Thank you so much Melissa for sharing your inspiring and hopeful story. It’s not something you honestly hear about often so positive personal stories like that really count! So pleased your little one is so well and thriving on down the line, that’s just wonderful!
Sending healing prayers your way. I hope your little one receives the best treatment needed to heal his cyst and has a full and successful recovery.
Thanks so much Melissa. Blessings to you and yours too!
As another medical mama, I just want to share that I know the fear and the worries (and the daily emotional swings) you’re going through. We’re post-surgery ourselves, but because our son’s issue is a genetic one, we have annual checks, and a constant back-of-the-mind awareness that things can change at any moment (as well as a wait-and-see situation because not much is known about it, and of course, his is different than reported in others). It’s scary, but we’ve also been super encouraged by the local medical community. Just the fact that we have a diagnosis is due to one very thorough doctor, and we are regularly reminded that these are special people, and we thank God for them!
Thanks for sharing a bit of your own experience Janie – it never stops being a great tool and support, knowing that others face and overcome everyday the challenges we’re coming up on now. Blessings to you and your little one!