The Days Are Long, but the Years Are Short
When our son turned four I told my mother, “The years since he was born feel like a lifetime. Maybe it’s because we haven’t gotten a complete night of sleep since he was born.”
Written by Jolene Philo
“The days are long, but the years are short.”
I repeat this phrase while I sit on the couch listening to my 7-year-old grandson read for a half hour every evening.
Each time he turns a page, he says something like, “Wow, Grammy! What do you think that is?” or “I wonder what will happen next?” He ignores the words on the page and launches into several winding, imaginative explanations.
My grandson really, really likes to talk. And use his imagination. As for the reading part? Not so much.
Which is why I eventually have to suggest, “Read the page and find out.”
He follows my suggestion––he can read more fluently than he believes––and finds out. Then he turns the page and begins the same process all over again.
To contain my impatience, I whisper to myself, “The days are long, but the years are short.”
One evening as we read, my mind wandered back to when our son was young and medically fragile. When complications arose––maybe he had a fever, refused to eat because of an oral aversion, or vomited his food because of an esophageal blockage––our days were very, very long.
Should we wait to see if he got better? Or worse?
Could we wait until morning to go to the doctor? Or call him right now?
Should we race to the emergency room in our car? Or should we call the ambulance?
Not only were the days long, but also the nights.
When our son turned four I told my mother, “The years since he was born feel like a lifetime. Maybe it’s because we haven’t gotten a complete night of sleep since he was born.”
Mom smiled and said, “The days are long, but the years are short.”
My grandson turns a page and explains, “Look at that shark! What’s it’s name?”
His words draw me into the present. I smooth down his honey-colored rooster tail and inhale his little boy smell. He leans into me, and together we sound out a challenging word. He looks up at me and smiles in triumph.
“I’m getting the hang of this, Grammy!”
He is getting the hang of reading, and I am getting the hang of the fickleness of time.
I think of my son, whose early years required several corrective esophageal surgeries before he got the hang of eating and swallowing. He’s a middle-aged man now, healthy and independent.
Where did those years go?
I look down at my grandson and smile,
grateful for this precious half-hour together,
grateful for this reluctant reader’s victory over a pesky word,
grateful his dyslexia that brings us together each night,
grateful for the joy of being part of his life,
grateful for the wisdom gained through the special needs of my son and my grandson.
The days are long and the years are short, and in the eyes of God, both have eternal value.
Written by Jolene Philo
Jolene Philo is the author of several books for the caregiving community. She speaks at parenting and special needs conferences around the country. She's also the creator and host of the Different Dream website. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and Amazon. See Jane Sing!, the second book in the West River cozy mystery series, which features characters affected by disability, was released in November of 2022.
There Can Be Respite in the Sleepless Storm
Before his diagnosis and before we had a treatment plan, my forty-something year old body really struggled to keep it together during a season of difficult bedtimes, frequent nighttime wake-ups and a boy that started each day long before the rooster crows.
Written by BreAnn Tassone
It’s fitting that my son’s preferred sound to sleep with is a booming thunderstorm. Let’s just say, college all nighters don’t even hold a candle to the all nighters my handsome little guy and I have endured together. His sleep, among other things, was greatly impacted by the effects of his autoimmune condition called PANS/PANDAS. Before his diagnosis and before we had a treatment plan, my forty-something year old body really struggled to keep it together during a season of difficult bedtimes, frequent nighttime wake-ups and a boy that started each day long before the rooster crows.
I spent hours singing hymns and James Taylor songs and I’ve Been Workin’ on the Railroad on repeat, to name just a very few, sitting crossed legged in this sweet child’s darkened bedroom willing him to fall asleep. For a long while, my husband singing Kumbaya in a slow, droning voice over and over and over again, was the only way to peace. In a room adorned with the darkest black-out curtains they sell and the most realistic and loud sound machine on the market, I would pray for my child's body to calm long enough for him to find rest. And once the calm came, I’d steal away for a few winks, knowing that I’d soon be back snuggled with this little love of my life, trying to calm him back to sleep once more.
Looking back on those days, having made huge strides in the sleep department, I realize how little concern I took in my own well-being.
Isn’t that what a mom does?
We do what we have to, and when it comes to our children, we take on the task at hand no matter what that task asks of us. Those wake-ups that sometimes came as early at 3:45am, were followed by full and glorious and nerve-wracking days. Days full of coffee and giggles, meltdowns and play dough, hope and worry, and the endless shuttling back and forth to preschool, gymnastics, speech, OT, or whatever that day held. Then, those days would circle back to Kumbaya once more.
As my son has gotten older, some of those struggles, both day and night, have worked themselves out. Some we have found our way through, some are still a daily struggle, while others are brand spanking new. I have, though, started to make a point to acknowledge the amount of stress I’ve been functioning under over the past 7 years. I’ve begun work to heal the parts of me that this has all piled up on. It is my nature to smile through anything I face. I often proclaim that all is well, or give a good old, “We’re hanging in there!” with a grin and a giggle. I think in many ways that has helped me to endure the heartache of it all. It has helped me to conceal the gallons of tears I’ve shed over watching my child navigate such difficulties, though concealing them is entirely unintentional. What those smiles haven’t helped is in finding any relief from the stress I’ve been under.
Self-care was a term that kind of bothered me, as if it was this luxury others were afforded, or even an indulgence.
Who has time for that? How could I even squeeze that in? I’ve learned now that we all have time to care about ourselves and I can squeeze it in. It is not indulgent to care for the mother of my children. It is vital. It can be as small a start as just taking a multivitamin. It can be scheduling an appointment to walk around a park for an hour all by yourself. It can be reminding yourself of the interests you had before things changed in your life. I have found that visiting with the old me, for a moment or two each day has done wonders for my stress level. I wish I had made a point of it sooner, when I felt buried in worry. It’s okay, though, because it’s never too late to pause and re-evaluate the state of our experience. We can find peace even during these hard moments in life, even during the loudest booming thunderstorm.
Written by BreAnn Tassone
BreAnn is a wife and mother to two beloved children. Her 8 year old son is twice exceptional and has been diagnosed with PANS/PANDAS, and her 3 year old daughter is his most incredible advocate. They both bring joy to this world in their own individual ways. BreAnn lives with her family in central Virginia. She is a former Special Education teacher and serves as a volunteer at her church within the special needs ministry. She is a homeschooler and coordinates groups and events within her community to support the childhood experience of her neighbors and friends. It is her conviction that all children benefit when all children are included, accepted and can live this life learning from and supporting each other.
Myths of Caregiver Stress
Jolene Philo outlines myths that caregivers commonly believe when they experience compassion fatigue and caregiver stress. This is an excerpt from the March Hope Anew Disability Podcast, “Does My Child Have PTSD?”
