A Few Words for Spinal Muscular Atrophy Awareness Month
It’s been two years since we first sat down with Tracey for an inside look at Spinal Muscular Atrophy (SMA). As August is SMA Awareness Month, we asked if she would be willing to share with us again.
How has your work at Joni and Friends affected your perspective on your disability?
Working at Joni and Friends has broadened my understanding of disability both here in the United States and across the world. I am continually humbled to know my disability has never held me back. I have countless privileges, like being born into a family who loves and cares for me, going to college, working for this ministry, and being married to a compassionate man who also loves the Lord.
This job has showed me that it sadly is not the case for so many living with disability. My gratitude and desire to reach out to others who are hurting and in need has grown exponentially over the last three years since I came to Joni and Friends. As Jesus said in Luke 12:48,
“When someone has been given much, much will be required in return; and when someone has been entrusted with much, even more will be required.”
God has given me plentiful blessings, one of which is SMA. I thank him for those blessings and want to honor him by being a conduit of his love and compassion to those living with disabilities.
How has SMA been a blessing to you?
Because of my physical weakness, I rely on others for most things. Now, this might sound strange, but that dependence is a blessing to me. You see, my husband helps me do almost everything, he gets me ready for work, he prepares my meals, turns me over at night to ensure I can sleep comfortably, the list goes on and on. And while I am at work, friends help me with many tasks as well, like reaching supplies, getting my lunch setup, or even helping me get a cup of tea. This closeness, this level of dependence truly deepens the trust and intimacy in relationships.
I know God has blessed me with a loving husband and compassionate friends, and not one day goes by when I don’t thank him for those gifts and take the opportunity to express my gratitude to those who help me.
What other blessings have come out of having SMA?
Just as I trust God will use my weakness for his glory, I also trust he will care and provide for me. Not very long ago my husband and I were talking about the need to get a lift to assist in my transfers. We had been researching lifts and looking at the cost. No more than a week later, we got a call from someone at our church who had recently lost their daughter. She had been a quadriplegic, and they offered to give us her lift. We were deeply touched by their generosity, especially as it came during a season of their grief. It is such a reassurance to me that God provides, and he often does so through the Body of Christ.
In what ways has your church made it possible for you to participate as a full member of the Body of Christ?
Our church family has been so welcoming and inclusive since the very first day we were “checking it out.” That first Sunday, we were approached by kind people who made us feel welcomed. We knew with confidence we had found our home. What I especially appreciated was our interactions at church were never about my disability, we were invited to join and serve the same as any other new couple may have been.
That doesn’t mean my disability was completely ignored, though. When I was invited to read scripture prior to the sermon, our pastor and tech team made sure to ask how best to accommodate me, and which microphone would work best, since I can’t use the lectern. Every time I wheel up to read scripture, I thank God that our church already has a ramp to the platform. And when our pastor was preaching through Luke and reached verses 5:17–26—the healing of the paralytic—he asked to come over to our home and have a conversation about physical healing and what my thoughts and experiences have been.
As another example, when we were invited to join a small group at our associate pastor’s home, he carefully described the front entrance to his house and let me know he could help make a ramp so I could get in. My disability has never been a hindrance for my husband and me to be a part of our church; we worship, fellowship, and serve.
How has the outlook changed for someone diagnosed with SMA now rather than when you were first diagnosed?
Since 1981, when I was diagnosed, the SMA community has seen amazing advancements, not just with adaptive technology and wheelchairs, but with scientific breakthroughs.
When I was diagnosed, the process took a few months of rigorous and painful tests, now it is a simple blood draw. Plus, 31 states now screen for it at birth so intervention can start sometimes even before symptoms begin to appear. There are now treatments available that not only help stop the progression of the disease but can truly alter the course completely. We are seeing children who, perhaps, have never been able to sit up independently, but after treatment, can stand and even walk! It is very exciting and receiving a diagnosis of SMA now puts a family on a very different trajectory than what my parents and I experienced.
What is something you would like to tell other individuals who live with SMA?
When we sell ourselves short—or believe people when they say we can’t do something because of our disability—we deny God’s power in us. God tells us his grace is sufficient and his power works best in weakness (2 Corinthians 12:9). God created us to be in community and glorify him through serving others. You have gifts and abilities that will be a blessing to others!
Don’t be worried about a lack of physical ability, God will use you when you offer yourself as a living sacrifice.
Yes, my experience of living with SMA is… hard, but oh my goodness my life is rich, and I do not suffer, I thrive! The joy of the Lord is my strength and with him, each day is blessed. Even on those difficult days filled with pain and fatigue, I rest confidentially knowing God sees each challenge I face. He created me with SMA and he will surely use it mightily for his good and glorious plan!
Hear more from Tracey on the Joni and Friends Ministry Podcast
There’s a difference between ministering to someone who has a disability and really doing life with them.
While barriers like staircases and narrow doorways may keep someone with a physical disability from entering a space, there are other barriers that keep them from genuine, deep friendship.
