The Unmitigated Glory of a Reprieve When Your Kid has Special Needs

This morning, when I stepped outside to water the flowers, I noticed a magnificent breeze that reminds the California girl in me of the Santa Ana winds. We reside nowhere near California and where we live, temperatures have been consistently over 95 degrees for most of the summer. The air is so humid it almost feels you are drinking water if you take a deep breath. Because Caleb can actually die if he becomes too hot, the oppressive heat has kept us inside for over six weeks.

The breeze this morning invigorated me. I felt like Sandra Bullock in Practical Magic, when Nicole Kidman wakes her in the middle of the night to tell her that their aunts are making margaritas. The sisters kick their feet, giggle, and scream happy squeals as they totter down the staircase to find their already-tipsy aunts happily handing off two fresh margaritas.

There were no margaritas for me this morning, but as soon as I felt the wonderful outside air, I kicked my feet, giggled and yelled up to Caleb, “Hey! Do you want to go to the swings?”

Caleb answered more quickly than usual with a resounding “yes” so I got him dressed, gave him a water bottle for the three-minute walk and out we went. Today there is lots of cloud cover, which provided a shelter from the sun. That marvelous breeze was still swirling around. I met an awesome new neighbor and Caleb was able to enthusiastically swing for almost five minutes before his hands turned red. We had to immediately get into the car so I could blast maximum air conditioning on him to get his hands to return to their normal color.

This ten-minute reprieve was a delightful gift. It filled Caleb and me with such joy that it will likely carry us through the rest of the day. Reprieves are like precious gems that we are given to hold onto for only a moment, for they will soon turn to dust and life will go back to whatever it was before.

That’s the thing about reprieves: you never know when they are coming. You also never know when they will end with their crisp finality. Reprieves are an excellent reminder that we need to live in the moment, not worrying about the future or regretting the past. While in a reprieve, we need to soak up the solace, joy and giddy invigoration.

Among my friends who have kids with special needs, one of our biggest pet peeves is when people say, “God never gives you more than you can handle” or “God only gave you this child because you’re such a great person.” When people say this it feels like a platitude, like, “I’m so glad God doesn’t think that I could handle your life, because it looks like it sucks” or “Good thing I’m not a good person, because, wow, how can you live like this?”

This exact saying is nowhere in the Bible.  I have searched and searched for it. God says he will equip us for the battle and that he won’t tempt us beyond what we can bear. He promises we will never be alone.

I believe that reprieves, though they occur rarely, are one of God’s many gifts to us. They are equipment for battle and a calm in the storm of our daily lives. They are a reminder of how much he loves us and an acknowledgement that he fully understands how physically, spiritually and emotionally draining our lives are. Reprieves allow us to catch our breath, straighten our shoulders and move on with a smile to the next challenge, because there will always, always be one.

I was enjoying a reprieve on the morning of August 4, 2006, the second day of Caleb’s fifth grade year. I was waiting in my hairdresser’s chair for my first haircut since April. I was just beginning to unkink from the long summer and really looking forward to having my hair cut. My stylist was late that day. Five minutes after I had been relaxing in the salon chair, my cell rang loudly, with the screen announcing it was Caleb’s school. All they would say was that he had hurt his leg and I needed to come immediately.

When I arrived, there were two fire trucks and three ambulances lined up at the front office. Caleb had broken his leg and it would be almost six months before he could go back to school.

A few years later, Caleb was at a summer camp that we just loved. Sophie and I took the opportunity to see The Amazing Spider Man. We made it almost halfway through the movie. We loved it and were so grateful for the time that we could just be just a normal mother and daughter. We didn’t have to do the million things we have to do everywhere we go to keep Caleb safe and calm and shielded from people who often stare too long and whisper too loudly.

My phone lit up so I stepped outside to answer it. A well-meaning young woman at the camp felt bad that Caleb was inside so she took him outside to be with the other campers. He immediately overheated, zoomed past the initial warning sign of red hands, and they panicked. They stayed outside and tried to force water down his throat, which caused him to have a seizure. I told Sophie we had to leave, and, ever the best big sister, she said, “Let’s go.”

Reprieves can take many forms and they can be one minute long or sometimes last a week. Any break from doctor visits, surgeries, endless therapies and even uncooperative weather can calm our souls and allow us to regain our strength. A reprieve can be a kind smile from a stranger at the grocery store or a waitress who patiently and sweetly answers Caleb’s questions about her car and her birthday.

If no reprieves show up when we need them, sometimes we can create our own. Excellent books make for wonderful escapes. Kristin Hannah’s The Nightingale had me believing I was living in World War II in France for an educational and hopeful week this spring.

The ability to record, pause and stream TV is my favorite invention ever. When you are homebound most of the time, Netflix and a DVR can be your best friends.

My daughter and I are binge-watching Parks and Rec. If you know the show, read this next sentence as Rob Lowe: “There is literally nothing in Parks and Rec that could frighten or confuse Caleb if he entered the room when someone is watching it.” Along with anything on HGTV, these are really the only two things we can watch during the day, unless you count all the Disney movies that we have seen over 800 times each.

I’m trying to envision what a reprieve could look like if it were visible. A film of one would show a wilted flower, turning brown at the edges and bending toward the earth. The first few drops of rain wake the flower and within minutes, it is standing tall and proudly blooming again.

Because none of us know what the next minute might bring, and dwelling on mistakes from the past only drags you back there, try to breathe in the beauty of whatever reprieve presents itself to you. It’s not a coincidence, it’s a gift from God who knows exactly what you need.

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