I stand at the closed door of my daughter’s bedroom. First, I listen for the gentle hum of her bi-pap machine. After this many years, I can tell from the sound out in the hallway if the mask is on securely. Secondly, I listen for any sounds that indicate she is still awake. All is quiet, so all is well. This is one of the skills I have acquired as a mother.
I have a similar ability with nebulizer treatments. I don’t necessarily have to see the mask and the midst to know if there’s a problem with the breathing treatment or if it is completed. The entire process is recognizable to me by its sound.
Likewise, I have an uncanny capability to hear a subtle change in my daughter’s breathing. I spent a decade caring for my daughter as she went in and out of the hospital for multiple bouts of pneumonia, respiratory infections, and the need for oxygen. Those experiences left me hyper-vigilant regarding her breathing. I can hear a change in her respiratory status days before other people can. This allows me to intervene using her action plan as early as possible.
The interventions I give require me to multitask like nothing else in my life. I plan out her inhalers, nebulizers, cough assist, and vest treatments at their appropriate cycles. Medication disbursement times are determined early in the morning while I make sure her equipment parts are clean and ready for the next use. I spot-check her heart rate and oxygen saturation, documenting any changes for the pulmonologist to determine how to adjust her medications. While tending to those needs, I also tend to my usual household chores.
Sometimes as I power through those tough days, I stop and reflect.
Photo by Camylla Battani on Unsplash
When I was a young 25-year-old, I recall patting my growing belly and admiring my changing profile. A baby was growing in my stomach; it was a beautiful miracle. I dreamed of holding my first baby girl in my arms. I pictured what life would be like after birth and a little bit into the future. It was an exciting time, and I felt blessed to bring life into the world.
Now, I sit as a 40-something mother of two. I could have never pictured my motherhood journey. My first child was born with Down syndrome, a congestive heart defect, and a few lung diagnoses. Nothing turned out quite how I envisioned it. There was an adjustment period, but I still feel like I did so many years ago—I am blessed to be raising two children with my husband.
Becoming a mother has given me unique opportunities and skills.
Raising my children has made my life beautiful, busy, and sometimes strange. Take, for instance, the super hearing I have developed for some aspects of my daughter’s life. Who would have predicted that?
Through all the unexpected twists on my motherhood journey, I am grateful for my relationship with God. I have needed wisdom and help that cannot be found in friends, articles, or books. My relationship with God has been vital in keeping me focused and able to face each new challenge while rearing my daughter with special needs.
Each Mother’s Day, I often reflect back on the events in my life as a mom.
This year, I want to take nothing for granted. God has blessed me with two incredible children, and I pray I am caring for them well.
I would like to extend a prayer to other moms on a similar journey: Lord, let my fellow mothers be surrounded by your love today. Give them your eyes to see their children as you do. Let these mothers rear their children with Godly wisdom and help them to tackle challenges with renewed strength. Amen!
Happy Mother’s Day!
Evana is a wife and mother of two children. She enjoys serving in her church’s special-needs ministry. Evana is also a pediatric speech-language pathologist and serves children with autism, feeding disorders, and other developmental delays. You can connect with Evana on Twitter, Facebook, and her blog, A Special Purposed Life. You can also read more about her family’s story in her book, Badges of Motherhood: One Mother’s Story about Family, Down syndrome, Hospitals, and Faith.
