A parent or caregiver of someone with special needs, needs the ability to bounce back. There was a time we asked each other, “What would it take (not that we want to experience it) for us to hit a breaking point?” We don’t have a list of times we thought we were close, but we do have a few stories that stick with us to help us remember not to quit when things are rough. Here are a few ways we kept mindful of the ability to bounce back.
“Learning to listen isn’t a gift; it’s a skill.” “Anytime is a good time to learn to listen.”
These statements are great places to start in the month of “love” as we share cards, gifts, and time with others. It’s a skill that can be learned and we will be all the better for it. In our family, we are still learning and growing in this area both in our marriage as well as with our grown children, their spouses, the grandchildren, and our son with special needs.
The playground was bustling with laughter and movement, but my boys, then just two and four years old, played in their own quiet way. After a speech therapy session, we stopped at a nearby park, a familiar part of our speech therapy routine when the weather was nice. My older son wandered the perimeter of the playground and discovered sweet gum balls—a spiky green fruit on the gumtree but which dries out and turns brown and drops to the ground.
The lessons I learned while raising a child with EA/TEF have been many and varied. That’s to be expected since our son was born in 1982 with esophageal atresia (EA) and a tracheoesophageal fistula (TEF), two conditions that left him unable to swallow and required immediate surgery. Many of the lessons came about as a result of the surgeries and invasive procedures he endured between birth and age 5. Other lessons came later as he became more independent in adolescence and adulthood. I encourage you to use these ten lessons as a springboard for considering what you’ve learned as well.
Kingdom Focus is what first comes to mind. Those of us who are married and have someone in our life with special needs for whom we have responsibility (often 24/7 and 365!) know that without focus, we are doomed. AND for those of us who are believers in Jesus, we add to that His Kingdom focus and our part in it.
For us, we have 5 top ways to work on our marriage and keep it strong. There are more, of course, but let’s not get overloaded!
Thanksgiving reminds me to be grateful in all seasons of life. 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.
I started dreaming the day I found out I was having my first baby. As we made preparations for her birth, I enjoyed reading different pregnancy books. By the time we took Jaycee home from the hospital, I had armfuls of pamphlets, books, and resources on Down syndrome. I read as much as I could to find answers to many questions, and here’s where I found them.
This year has required endurance. There were many stressors in 2020 that individually would have been difficult enough for most people. There have been several events this year that have led me to cry out for things to be different, normal, or better. Yet in prayer, I have felt God ask me one question: Are you ready to endure even more?
Jaycee’s Down Syndrome and medical conditions have influenced the relationship between her and my son. While Elijah is younger, he often acts like an older brother. He looks out for her even though she is bigger in size. They understand each other, even with her limited speech. So I wasn’t surprised by my son’s recent choice of a Christmas gift.
