This time of year always causes me to be a bit more introspective.
Thanksgiving reminds me to be grateful in all seasons of life. I have spent many Novembers in a funk as I struggled to care for my child with Down syndrome and her many medical diagnoses. A few of our Thanksgivings were spent in the hospital, dining on the finest foods the cafeteria had to offer. Perspective is necessary during trying times.
Photo by Titouan COLOMB on Unsplash
The National Down Syndrome Society reports on its website that the life expectancy of a person with Down syndrome was 25 years old in 1983. Today, the age has increased to age 60. One must assume that medical advancements have helped make this extension of life possible.
My daughter is 16 years old. Over the years, there have been seasons when I have been overwhelmed and frustrated with the daily medical interventions. God gently reminded me that the very things that sometimes feel irritating are the things I should be grateful to have for my girl.
Here are four things that I need to keep a healthy perspective on:
Medications: Topping the list of annoying things I’m grateful to have is medications. I am appreciative that my daughter has treatments available for her medical issues. She would certainly suffer without them. At times, I admit that I tire of opening the bottle and dispensing them to her. It’s a daily chore that gets monotonous. This is a task that God needs to help me keep a positive spin on. I’m thankful there are medicines for her, and I am grateful she learned to swallow pills.
Vest Therapy: The vest airway clearance machine is the next item that I’m grateful to have. My daughter wears a vest that is attached to a machine through hoses. The hoses inflate her vest and run at different hertz to gently loosen secretions in her lungs for 20 minutes. I am thankful there is a machine that can help my daughter cough when her lungs are filling with mucus. This machine takes up space in our living room and dictates how things are set up in my home. It emits a loud noise, which sometimes I cannot seem to bear. I was thankful the day that our insurance approved this expensive machine, and I want to remain thankful.
Nebulizer: When my daughter started using a nebulizer as a toddler, I erroneously thought it would be temporary. It wasn't. My daughter still uses it daily. This little machine has become an important part of keeping her lungs healthy. I'm thankful that Jaycee has this machine even though it eats up time every day and has to be considered in all that we do.
Bi-pap: The bi-pap machine entered our home 13 years ago to assist my daughter’s breathing during sleep. During this time, the machine dictated how her bedroom furniture was arranged. Like the other machines listed above, the bi-pap has to come with us on any trips long or short. There have been plenty of times when I wished the bi-pap wasn’t needed. Yet, I should be thankful that Jaycee has a machine that gives her a safe way to breathe at night.
At times, these medications and machines seem to limit our lives. Decisions about where we go and what we do cannot be made without factoring in these four items. Sometimes, this irritates me. I want to just do and go like other families, but this is not our journey. This Thanksgiving, I want to be grateful. I'm grateful these interventions are available to give my daughter a better and longer life.
Here's my challenge to you.
Do you have something in your life that you need to have a different perspective about?
Maybe something that irritates you is actually something you should be grateful to have. I pray that God will help you have a new perspective and see gratitude all around you.
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.
