Breath Holding Moments From The Heart Of A Special Needs Mom

Tickle Me, Elmo
Being Mom To My Son, Samuel

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.

Needing a breath
In Ventilator Days

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.

Birthday Cake
Samuel’s Birthday Cake In 2015

Do I still have plenty to worry about?

Yes.

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 Room

The journey of motherhood is fraught with breath holding moments. Pray often. Evelyn Mann Click To Tweet

 

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6 Thoughts on Breath Holding Moments From The Heart Of A Special Needs Mom

  1. Every mothers journey is full of frantic moments. I totally understood your panic when the doctor was pressing on the fentilator!

    Reply
  2. Oh, my. Does this ever hit home! Breath holding when my typical son faced 3 forwards alone as a keeper, and then went down catching cleats in his teeth. Breath holding during a championship dance my daughter was competing in. And many, many breath holdings when my fragile child was holding his own breath, or we are suctioning glue-like junk out of his trach, or even when I simply leave the house and he’s in the care of another. I often think we mama’s out to get a discount on Clairol or other hair coloring products. We need them often enough. Hugs mama, from one breath holding mom to another.

    Reply
    • Well written, Rebekah. Your example shows, whether you are a special needs mom or not, we moms all have breath holding moments. I don’t use Clairol but I do enjoy diffusing Lavender essential oil. Very calming. : )
      Hugs back at ya, Evelyn

      Reply
  3. I have had many breath holding moments but the biggest was when my oldest child who has Incontinentia Pigmenti was having her left kidney removed at 15 months old. Who knew you could hold your breath for 4 hours. All of the snacks and magazines I had brought with me to get me through the operation were left untouched as I sat in panic the entire time.

    I also understand how you could lash out at the doctor, when my youngest who has Achondroplasia was four weeks old she had pyloric stenosis (the muscle at the bottom of her stomach was too strong and not letting anything through). She had been throwing up everything for a week and we were in the ER on boxing day and 4 doctors had tried to get a line into her so that they could rehydrate her but no one could do it. So they decided to drill into her shin bones and place the line into her bone. The nurses had to take me out of the room because I couldn’t take her screaming in pain from the drill. Thank god my husband is so strong and was able to stay and comfort her. I am usually the one in control during all of our Dr appointments but I cracked that day. My Husband stayed in the hospital with her over night and I went to my mothers house where I broke down. As a Mum you need to be so strong but you also need to allow yourself to crack occasionally.

    Reply
    • Hi Katrina, Your comments share a mix of strength and wisdom. Strength in being a momma to the precious gift of your babies. And wisdom in leaning on your husband. I’m thankful for both. My husband is the unsung hero in this journey but rest assured, he is an integral part of it. Thanks for sharing your story. From one breath holding momma to another.
      Blessings, Evelyn

      Reply

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