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!
Instead of answering prayers for healing, God sent peace, and I didn’t want any part of it. Peace felt like a consolation prize. I wanted my baby whole and healthy, and I believed peace meant that God wasn’t going to heal my son. Paralysis seemed too hard, and even with God holding me close to Him, I didn’t see how life could be good again.
Special needs families are no strangers to waiting. It feels as if our lives are turned into a giant line for a roller coaster that we don’t even want to ride. But praise be to God, not all waiting is for naught. Psalm 130 is a beautiful lament on waiting and hope.
The special needs parenting journey can be exhausting, full of loneliness, challenges, and struggles. It can be easy to focus on how hard things are. But I find the whole month of November to be the perfect time to reflect on the things that I am thankful for. Once I get started thinking this way, I realize there really are a lot of things to be thankful for.
Some days I just miss the normalcy of life. Some days I pretend we’re just like anybody else. Like this morning. I took my son up to my room with me and played a silent rebellion against the litany of medications waiting to be given, the nurse scheduled to arrive in an hour and respiratory treatments waiting to be done.
