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!
You used to have motivation to do all the things, to tackle the challenges, to meet the needs, to love others well in a peaceful way. Now you feel sad, angry, grumpy, tense, or unmotivated. So, what is going on? What has changed? Why are you struggling? I’m seeing it strongly right now in the general population with the Coronavirus stay-at-home orders. Why?
When we go through dark, lonely times it’s easy for our thinking to get cloudy, to forget the things we know, and to get confused. It’s easy to start believing lies instead of truth. During my doubting, fighting-daily-for-faith years, I started a list of thoughts I struggled with and Bible verses that I could go to in order to combat those lies or struggles. Here is my list; maybe you’ll find some of these helpful.
Holidays can be a very difficult time for families with kids with special needs. Many of the traditions and family gatherings they used to enjoy, they can’t anymore. It can be an especially hard and lonely time, as the difficulties that come with special needs are magnified. Our first attempt was a sorry start to new holiday traditions. However, we persisted. Eleven years later, we have some new special Thanksgiving and Christmas traditions.
When I think back on the hardest days and years of our son’s journey, I recall wanting God’s help, expecting His help, waiting for His help, while all the time trying to solve all the problems and carry all the burdens on my own. I don’t remember asking for His help or moving to Him for His help and shelter until I completely exhausted myself and physically broke.
