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.
Dear Exhausted, Wrung-out & Frazzled Mom
Dear Exhausted, Wrung-out & Frazzled Mom,
I see you. I see you struggling to make it through the day, your child’s melt downs, the medical appointments, and the therapies… Written by Jonathan McGuire
Dear Exhausted, Wrung-out & Frazzled Mom,
I see you. I see you struggling to make it through the day, your child’s melt downs, the medical appointments, and the therapies. I see the desperation in your eyes. I see the heartache as you are alongside your child in the midst of their ongoing pain.
I see that you are on the verge of collapse and the idea of having to do one more thing overwhelms you. I see the loneliness as you feel alone in this journey. I see you slump your shoulders when someone mentions self-care and the guilt you face at the idea you need to take a break and your child doesn’t get one. I see you and I get it.
Our inclination as parents is to keep on pushing. We push until we can’t push any longer. It’s not a badge of honor but born out of what we feel is necessity. The idea of taking care of ourselves just seems like an impracticality and can increase our feelings of guilt on multiple levels.
This weekend I was asked “How do I know when I should pause to take care of myself?” If you are reading this letter, then the time is now.
When our youngest son was a year and a half my wife, Sarah, had a physical and emotional break down. She had been pushing and pushing, only getting a minimal amount of sleep each day. It was a Sunday morning when she broke down. Sarah who was not normally a crier wept all the way through the church service and all the way home. She cried herself to sleep, slept for 22 hours, woke up, cried some more and slept for another 17 hours.
The thing is, she didn’t wake up feeling refreshed and like she could keep going. She was exhausted. Her hormones were shot and today, ten and a half years later, her health is still struggling.
As a husband and a father, I implore you to take that time now. Don’t wait until it is too late. Your family and your child need you there for the long term. Please take that time, even if it is only five minutes a day.
Self-care doesn’t always have to be something that is grand. Just five minutes a day is a good place to start. Take time to breath. Smell your favorite scented soap as you wash your hands. Eat a piece of dark chocolate. Lay in your bed with your headphones on and listen to your favorite song.
Self-care is not an extravagance. It is not selfish. It is necessary. Please take care of yourself before it is too late.
What are one or two things you can do today to take care of yourself? It is that important.
Written by Jonathan McGuire
