Things can change a lot in one year.
Last year at this time, I was helping Jacob settle in to his new school, working closely with his teacher and the school's Vice-Principal to ensure a smooth transition. He was in a large classroom, over twenty kids, all of them strangers. The Special Needs Assistants assigned to help Jake were also new to my son. And as a middle-schooler, he had to move to different classrooms for various subjects, another change for him.
The school administrators were great at helping smooth the inevitable bumps along the way and everyone involved was committed to ensure that Jacob become an integral part of his new class, not an outsider as the lone non-verbal, wheelchair-dependent student.
With the help of some empathetic and forward-thinking senior administrators (yes, there are a few out there!), Jacob was exposed to the standard Ontario curriculum alongside his able-bodied peers for several years. Along the way, he taught many educators more than a few lessons about the benefits of inclusion, and I know he made a life-long impact on many of his classmates.
But despite all our work for a fluid progression to his new school last year, Jacob spent most of the year in the hospital, away from the classroom. Aside from a few Skype sessions and many cards and messages, Jacob missed out on the academic and social stimulation that school and friends provide.
This year, instead of arranging Jacob's uneventful passage to grade seven, my energy is focused on ensuring that Jacob remains healthy and strong. It has been less than two months since his latest hospital discharge, and he spent 236 days in the hospital this year.
My priorities have shifted.
Rather than helping the teachers understand Jake's communication cues, or teaching the Educational Assistants how to safely transfer Jacob from his wheelchair to his walker, my focal point is on ensuring that Jacob is surrounded by competent, caring nurses who constantly monitor his breathing and heart rate. At present, Jacob requires the services of a registered nurse around the clock, seven days a week. His care is complex and the only consistency is how inconsistent and unpredictable his breathing might be. We are on constant high alert and often need to act swiftly to help my son clear his airway. At times, his care is so intense, more than one person is needed to help with the interventions he sometimes requires.
Instead of making sure Jacob is ready at 8 a.m. when the school bus used to arrive, early mornings are spent removing Jake's noninvasive ventilation (BiPAP), suctioning his airway (which, at times, can take over an hour and a lot of oxygen) and reviewing the nurse's notes from the overnight shift to stay abreast of any subtle, or not-so-subtle, changes in his baseline level of care.
For years I fought relentlessly against the giant beast that is the Toronto District School Board to make sure Jake received the education and social stimulation he deserved and craved. I did this with a feeling of desperation - roadblocks winded me like a kick in the gut. I didn't want Jacob to languish in a class or school that didn't challenge his intellectual abilities, even for a brief period of time. Every delay felt like a physical blow because I knew how PMD would eventually ravage his body. I was aware that one day the degenerative disease would wreak havoc on my son and seep him of the strength to go to school and be surrounded by the chaos of teenagers. That's what prevented me from giving up. I wasn't willing to compromise on his education, even when faced with what looked like insurmountable odds.
I was determined for him to have as much as he could for as long as his body would let him have it.
As Jacob recovers from a series of respiratory infections that have left his lungs weak and vulnerable, he cannot go to school. Until he regains his strength and stamina, he should not be surrounded by kids in the hallway, it is unsafe for him to play with a friend who has a runny nose or converse with a classmate with a scratchy throat. I am hopeful that this is a temporary situation and with time he will rebuild his immune system.
In the meantime, I am working on finalizing the details for "home instruction" where a licensed teacher will come to our house to teach Jacob the things he is missing in class. And as the teacher will approach our front door and reach for the doorbell, he or she will see the sign posted in our window that states that a medically fragile child is inside.
What a difference a year makes.
This blog first appeared on Her Magazine
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