As we gear up for school we discuss manners and using polite words. Sometimes, boys will be boys, and 'polite' isn't always part of the vernacular.
My angst is considerable. Michael is starting Kindergarten and I have become a disheveled ball of frayed nerves. There is no start to the ball and no end. Much like a string of Christmas lights that has been buried at the bottom of a box for 11 months. You look and look but there is no outlet anywhere or any sign of a useful place to start. The more you shift the cords and run your thumb along to find a beginning or an end, you get huffy and frustrated. You decide to drop the damn thing back in the box and move on to other decorations. My emotions are a tangled mess. I don't even want to deal.
I remember thinking how far off it would be before Michael was walking, talking, and doing this own thing. Now he asks super thoughtful questions, artfully negotiates, and can play a mean game of chess.
Yes. The time has come.
Soon he will be getting on a big yellow school bus and for the first time ever I have to trust that he has the skills to go into the big wide world... well, to go to Kindergarten anyway.
The planning for him just to go to school is considerable since he has special medical needs from his Cystic Fibrosis. It is a delicate process of preparation and discussion with the school administration and the school nurse where Michael will be attending. My brain takes slow, nervous pauses as I have the conversations with the school nurse and staff. For those parents with 'special needs kids' whatever those needs might be, you know that the words you choose to describe your child's diagnosis, care, and your approach can incite a broad range of reactions -- from sympathy and pity all the way to 'get in line... every kid has special needs today'. I have no idea how to prepare for what the school's reaction might be. I choose my words thoughtfully like "just a different routine" and "we normalize things" but also emphasize serious messages like "potential hospitalizations" and "critical medicines just to eat".
From the instant I spoke with the elementary school nurse 8 months ago, I was put at ease that she is someone who 'gets it'. She is thoughtful in her listening and her planning for Michael's arrival in the fall. Before school even wraps up in the spring, the nurse decides to float a preliminary 'heads up' to all staff members about Michael and what Cystic Fibrosis is for the upcoming school year. She figures there's no harm in early education for the staff at the school about CF.
HELLO?! HOW DID WE GET SO LUCKY IN THE LOTTERY OF SCHOOL NURSES???!
In the summer, I also speak with the school district's transportation team to understand where Michael's bus stop will be located. Michael's morning routine is going to be a challenge. I know lots of good ol' all American families who struggle with getting any kid out the door on time... With two kids with Cystic Fibrosis, now add on another hour 45 minutes for morning treatments among the typical mix of breakfast complaints, fashion arguments, lunch box packing, and sock-and-shoe-search-and-rescues. The director of transportation assures me that he will take a look at the bus routes and the timing closely. He is confident that the bus stop is either in front of our house our one house over. And we are likely toward the end of the route anyway so Michael won't kill his morning riding a bus along 10 more stops before school.
SIGH OF RELIEF. Things are actually shaping up.
Also, in the late summer weeks, I tackle writing Michael's 504 Plan to attend school. A 504 Plan is a written plan that supports children with medical needs in public schools and helps these children to fully participate to every possible extent. It often lists accommodations related to the child’s disability or illness that are required so that the child may participate in the general classroom setting and educational programs. 504 Plans are imperative for children with CF. They are a tool used to educate teachers, administration and staff about specific issues like hand-washing, illness at school, unlimited bathroom use (because of digestive issues), dosing medication at school to eat or if inhalers are needed to name a few.
For any family, back to school paperwork is daunting. Generally a massive stack of different colored forms, reminders and informational pamphlets. And for families creating 504 plans, you can think about lopping on a an inch thick worth of paperwork onto the pile.
But I am pleasantly surprised that when the rubber meets the road, writing Michael's official 504 care plan is relatively painless because we have great support with the school nurse. But I'm not gonna lie... it still is a TON of extra work. It is a fine orchestration on my part of getting the CF Care Team's formal letter with Michael's needs, ensuring forms are signed and a reviewing of all of Michael's needs thoroughly.
Does this form need to be signed?... Do I need to worry about this?... What about if he is hospitalized, did I include info. about extended absences?... Oh, and I have to fax this one to the CF Team in New York... I am mentally fatigued.
I spend HOURS reading and reviewing everything. It's a fine line of providing too much detail which might overwhelm school staff against ensuring that Michael's needs are met. But in the final days before school we have completed all forms and the nurse and I are in agreement about everything. Michael's CF Care Team has completed everything from their side... all i's are dotted and t's are crossed. All the signatures are penned.
Once we are all set, I don't quite hold my breath. And sure glad I don't because in typical fashion, I receive a letter from the School District Transportation Department. I open the form letter that breaks the news Michael's bus stop will actually be instead 10 houses down the street, which on our street is a looong walk with no sidewalks. I give a long deep sigh. GREAT. Our mornings are going to be a disaster. I should just accept that I will be driving him to school most days since he will be late.
The ink is barely dry on the final permission forms for Michael's medical needs when the nurse decides in the last days before school starts that she will do a presentation on Cystic Fibrosis to the school staff and administration. She wants them to understand that CF is a big deal. Handwashing is a big deal. Any symptoms they might see from Michael is a big deal. I don't know quite how I feel about this... it might be weird that everyone knows everything to do with Michael's CF. Will the adults think differently of him? Will they treat him differently? The flutter of concern halts when I initially answer my own question... of course they will treat him differently. Duh. Isn't that the point of a 504 Plan?! And it strikes me with shot of sadness that, yes, he will be treated differently. Whether the School Nurse does an informative presentation or not. He is different.
And then I also remind myself that our family has always towed the line of awareness is the key to understanding (and finding a cure). When I am done wrestling with my inner-mom struggle, I quickly land again in the place of...
HOW DID WE GET SO LUCKY IN THE LOTTERY OF SCHOOL NURSES???!
She is on a mission to do all she can for Michael. And knowledgeable grown-ups are part of that formula. After the last conversation with the nurse before school begins, my phone rings (exasperated sigh) again. It's the Director of Transportation wanting to follow up with me. He apologizes that we received a notice with Michael's bus stop down the street... in error. He "certainly didn't forget about us". He states that there is a correction for Michael's bus stop and that the bus will pick him up in front of our house. Finally, I am completely relieved. I feel my shoulders release and fall a little. It's the little things that can life easier make a family struggling with chronic illness. The warm tears well up in my eyes. OH THANK YOU GOD!
I go to sleep knowing that in a few short days, I will put my son on the bus and let him head out into the world. And all the better that he will be on time.
The remaining few days preparing for the start of school are typically filled with ranting lectures from Michael directed to Dylan about how he is going to big kid school. Michael bats his hands in the air to mark the importance, "Yeah, Dylan, because I am a big boy and I am starting Kindergarten. You still go to preschool." Michael's hands add colorful punctuation in the air along with his condescending tone. His eyeroll emphasizes the word "preschool". There are continued gentle reminders about feelings and what it is like to have hurt feelings and to have a good heart.
Snap, snap, snap. I take pictures of the boys on Michael's first day. Our front porch in New Jersey has become our favorite spot for pictures. Nondescript and simple. I can capture the important things. The excitement in their eyes. The adoration between brothers. I just can't quite capture the flutter in my stomach. Or the pounding of my heart. I have him hold up a sign commemorating his first day of Kindergarten. The sign shares the date and explains he wants to be a "paleontologist" when he grows up. His word, not mine.
Michael is wearing his favorite orange robot shirt. His smile is glowing. Not knowing which side of the street the bus will pick up on, we wait anxiously on the walk of our front stoop. Our hands are intertwined as my hand clutches his little hand. He grasps mine right back.
As the CF story goes, in the 1950's there were many children whose battle ended very early, often before even attending elementary school. The CF Foundation was started in the 1950's by parents who wanted more for their children. Who wanted a better life. There were many medical advancements still undiscovered. I think of how blessed we are. I think of all those families, those pioneers in the CF history, who fought for this very thing. I silently say a prayer of 'thanks' to them. In this moment, I stand here holding Michael's hand, ready to put him on the bus for his first day of Kindergarten. We are here because of those amazing fighters and those visionary parents so many years ago. I am humbled. I am grateful. I am proud.
I look down at our hands. And pause. I love this little boy and am so proud of his courage. Every day. Especially on days like this. Especially when being different can be hard.
I realize that down the street the kids are waiting for the bus across the street. So, Michael and I walk across the street to continue waiting patiently.
After a few more minutes, the bus roars up and comes to a jarring stop. Michael lets go of my hand and climbs up. He turns around smiles brightly and waves, "Bye Mom!" My voice whimpers back, "Bye honey." Michael disappears into the bus. The nice bus driver waves me back across the street. I stand in our front yard and wave all smiles to send Michael off on his first day.
The wheels to the massive school bus start to turn and the roar emerges again as the bus accelerates and starts to head off. I swiftly turn my face away and cannot watch as it disappears around the bend. I whisk my hand to my eyes catch my rush of tears. For a brief second, I start sobbing. I feel my insides lurch with every rapid sob. Then, slowly, I draw air into my lungs and force myself to stop.
As I exhale with my eyes close, I envision that bolt of a confident smile he gave me. It gives me so much comfort. For him, it's simple. It's a new adventure awaiting and he is thrilled. For me it's not so simple. There is a whole lotta love intertwined with heartache in this moment. We begin our next chapter on this piece of pavement. At this bus stop.
It is this spot that would continue to mark our days as some of the most special and simplest of times together. The bus stop. In this case, the stop is really in fact the start...
