My husband Brent and I were so excited when our first child, Austin, was finally born. I had read so many books to prepare myself for motherhood! I would dream about what his first words would be, when he would start walking, what his favorite sport would be–scouts, prom, his wedding. I even thought about the joy of being grandparents.
I did not expect that at three months old, my son would start having seizures and would be diagnosed with Tuberous Sclerosis Complex (TSC). TSC is a disorder that causes non-malignant tumors in the brain and other vital organs. Symptoms may include seizures, developmental delays, behavioral problems, skin abnormalities, and lung and kidney disease.
When our newborn son got this diagnosis, it was so much to digest. What did this mean for our little family? What would Austin’s life be like now? Would he have a future? The focus of our dreams changed and I felt like we were on a journey all by ourselves. While other parents ventured off on a path where they could see the splashing of waves, feel the cool ocean breeze in their faces, smell the salt air, and enjoy colorful sunsets … I felt our path was dark, lonely, and unknown. We could only see glimpses of sunshine peeking through the clouds and an occasional bird singing in the trees.
Over the years, even though our path has been a little bumpy, it doesn’t feel so dark anymore. Austin’s seizures and special needs still continue today, but that doesn’t diminish his love of life. He loves to hum, laugh, splash, ride ferry boats and watch the dancing flames and sizzling pine needles of a campfire. He is a great little traveler and loves to look for “big trucks” on our trips. He interacts with music in a way that blesses us with a new love for it. He demonstrates pure joy through small and simple things, like walking along the pier and looking at the ripples in the water. He shows unconditional love through hugs and smiles.
We have found great joy in our journey of raising a special needs child, and we are grateful for those who continue to show love, support and encouragement as we journey on.
QUESTION: Have you ever faced a future of unknowns? What helped you get through? What advice do you have for other parents facing a path that feels lonely and dark?
CHALLENGE: Take time this week to think about how your journey as a mother has turned out differently than you originally planned. Write down three ways that you can cope with your challenges and endure them with joy and even gratitude.
Image provided by Linda Masters.
Linda, Brent and Austin are heroes, that’s true. They’ve been through a lot. But they excel at “ordinary,” too. I’m in awe of the faith and endurance they have developed helping Austin with his health problems, but I’m also inspired by the quality time they spend as a family. It would be easy to sit at home and watch television with a child who has special needs, but Brent and Linda get out and do things with Austin. Walking hasn’t been easy for him, but they frequently take him on leisurely walks along the dock, discovering together the sights and sounds at the water. They frequently have camp fires in their yard, where they just sit together and enjoy the crackling firelight. They go with Austin to music festivals, and off exploring, and to church. And they take him to listen to various power boxes, where Austen hears tones and music that are beyond his parents’ ability to hear, but they know how much he enjoys them. I’m inspired by this family’s example of enjoying every day with their son, and celebrating who Austin is. Thank you for celebrating them today, too.
Having a Special Needs child is such a challange, but it is filled with blessings, love and happiness too. Linda, you and your husband are such wonderful examples for others who suffer as you do, and there are SO many. You are very special people in the eyes of the Lord, and I am sure He sent Austin to you because He knew you would give him the care and love he would need during his time on earth. YOu have certainly not disappointed Him in any way. I love and admire you, and wish you all the blessings you will need along the way. Please give Austin a hug from me.