I am almost at the point where I have stopped waiting for the break. I am just about ready to stop wondering when there will be rest. I am almost ready – but not quite.
September as a teacher is a month full of new beginnings. One of the blessings of having a job that begins and ends each year is the “newness” that September brings with it. There is something special about meeting new students, or old friends after a summer vacation. There is something exciting about anxious eyes and new backpacks, and children eager to reconnect with friends.
So as I ran through September for about the 16th time, I took the time to appreciate the wonders and the smiles of the children around me- if only for a few fleeting moments. See, I remember September 16, and 15, and 14 years ago. I remember September when I was still a bit unsure of myself. I remember September before there was a husband, and a house, and a daughter, and 2 dogs, and 2 Cowden’s Syndrome diagnoses, and countless appointments, and surgeries, and medical bills, and paperwork at home to match the paperwork in school. I remember those early Septembers thinking I was overwhelmed. And, like so many things happen in life – looking back now I realize I had no idea.
This week we organized a new car, soon to be picked up. We got an antibiotic for the sore throat full of strep symptoms again. We got a new roof on the house. The new roof prompted a thorough cleaning of the entire second floor, which led to the Halloween decorations coming out a bit too early.
This weekend we packed up all of Meghan’s clothes – and I mean virtually all of them. We gave them to a beautiful family, and started over. She has grown this year several inches, has a foot as big as mine, and we will soon be sharing tops.
This weekend there were lessons to plan, IEPs to read, standards to sort through and a binder to prepare. I love my work, I really do. But the setup, and the stipulations placed on us from places way above us are exhausting in and of themselves.
This weekend there were bills to pay. A giant stack, somewhere in between a pile of mail that needed to be shredded and just to the right and a bit higher than the mountain of laundry in the middle of the basement floor.
This weekend, in between cleaning and sorting, and laundry, and preparing food for the week, there was this headache. A nasty one that just wouldn’t quit. She started complaining Tuesday and it just persisted. And as life continued at its rapid pace, and constant motion, there was Meghan in bed for the better part of Saturday. No swim practice for her, always a gut wrenching decision, her body can not endure this pace of constant motion. And my heart, torn in two, kept a watchful eye on my girl as I continued the whirlwind.
I remember being her when I was younger. I remember watching my mom and sister in constant motion. I remember being sick the morning after a sleepover. I remember just not feeling well. But none of that, not any of it, makes me feel any better when it is my girl, sitting and hurting.
There is worry all around. I am aware of the friends and family struggling with illness of all types. I am aware of their angst and their hurt. And as much as I pray for peace for them, for their loved ones, for their healing I have to honestly say the biggest piece of my heart sits with my beautiful girl.
We help her rest. We feed her the most potent superfoods we can buy…
She is trapped in a schedule with no relief, in a body that sadly lacks stamina, with a syndrome that is angered by overwhelming fatigue. But what to give up? 5th grade promises to be fun, but busy. Then there is physical therapy – twice a week, and swim practice on the schedule 3 times a week. Plus doctors appointments, like the hand surgeon follow up in Manhattan on Thursday…
And while we work on her to keep her anxiety in check, there is always mine to look after. When you have a syndrome that grows tumors, nothing is ever without a high alert. A headache, probably allergies, but what if… The pain in the leg, probably a muscle pain, but what about the AVM… And if she could have an AVM in her knee, and her hand…
Life is about balance.
September is chaos. It just is.
But the nice thing about September is its followed by October.
And while I am not hopeful for huge amounts of downtime anywhere in the foreseeable future, I am confident we will sneak in some pumpkin and apple picking one day in the next few weeks.
And I am learning that while this Cowden’s Syndrome, and all its extra worry is going to linger forever, somehow, some way it seems to make the little moments that much better.
Maybe that’s where the balance comes in…
beatingcowdens 