In the journey of motherhood, what makes you frantic? A child’s sudden break out of hives? Your toddler teetering on the stairs? Or falling from a stroller? Though I’ve experienced all of these scenarios, it’s the medical issues that make my knees quiver and my stomach churn.
I remember being at the pulmonology office for a checkup years ago. Samuel was still on the ventilator and I noticed the doctor had disconnected his tubing from the machine. Being cut off from its life giving support, I thought, “Oh, he’s just taking it off for a few seconds.”
Another minute passed and the doc still had his thumb on the ventilator tubing. Samuel seemed happy enough but I started to panic. My calm demeanor crumbled and I snapped at the doctor. Pointing at the tubing in his hand, I said, “Don’t you think he needs that?”
Both my husband and the doctor stopped talking to each other and looked at me startled. My husband broke the silence saying, “He’s doing a test to see how well Samuel does off the ventilator.”
Shocked to hear this was intentional, I answered, “Oh, I didn’t know.”
The test continued for another minute as I resisted the urge to snatch the tubing from his hand. Instead, I prayed the trial would end quickly. That test was the beginning of big things for my boy. And a little over two years ago he came off the ventilator.
As hard as it was for me to let go of this life saving equipment (think Momma comfort zone), the reality of my son being free from the tethered hoses was huge for him and for us as a family.
Motherhood is fraught with breath holding moments like these. As our son goes through the process of determining if his trach can be removed (talk about knee knocking), we noticed Samuel’s heart rate going up in his sleep.
Many nights my prayer line to God was activated seeing these numbers rise. So we met with the Cardiologist who promptly placed our son on a halter monitor for 24 hours.
As I type this, we are returning from the Cardiologist with good news. His numbers are in the normal range and we don’t need to return for two years. Happy dance and a high five to God. I breathe a sigh of relief for now. Future adventures include a sleep study and an MRI.
And then there is the diagnosis itself. Thanatophoric (meaning death bringing) Dysplasia Dwarfism. I’ve had plenty of opportunities to hold my breath. From initial discovery to six months in the NICU/PICU, I gained more than a few grey hairs. Yet, my son defied all odds and is now ten years old.
Do I still have plenty to worry about?
And in this, we as mothers can all relate. Our worries, per se, may be different, but aren’t our hearts the same? Full of love and hope. Desiring what is best for these precious children God has given us.
So, we journey on this road of motherhood together. As a mother, do you have breath holding moments? Can you relate to my journey as a special needs mother even though you don’t have a special needs child? Or, perhaps, you are a special needs mom. Share your story of motherhood in the comments below. I read each one.
Written By: Evelyn Mann
Author, WIP, A Miracle In My Living RoomThe journey of motherhood is fraught with breath holding moments. Pray often. Evelyn Mann Click To Tweet