The list of stuff that “They” don’t tell you before you have kids is a long one. Being an adoptive and biological parent, we think about the nature vs. nurture thing a lot. The reality, I have found, is that all kids are a product of both. And like all good parents, we love the hell out of them and acknowledge they drive us nutty sometimes. But for everything we sacrifice and for all the triumphs and tears, rules and role modeling, the one thing we ultimately have little control over is health. I don’t mean diet and exercise. I mean when, in the mystifying scientific symphony that constitutes the creation of another human being, cells go slightly off-course.
I’m not a doctor, but I would guess no parent of a kid with allergies knew until the first terrifying reaction. Any family with a child who has special needs of any kind probably didn’t plan for the attendant practical and emotional challenges. For those struggling through the opaque journey of pediatric mental illness, the vocabulary to find help can be elusive, the pain difficult to share. And, from first-hand experience, I can say we parents of children confronting chronic illness certainly didn’t expect to be on a first-name basis with the staff at Children’s Hospital.
For all of the different scenarios around unexpected health issues, I would venture to say the one thread we share (aside from fierce love and advocacy for our children) is luck. Counterintuitive? Let me explain.
We live in a community with a stellar team of Individualized Education Program (IEP) orchestrators–I mean the teachers and special education folks and the support service pros who populate our lives like an extended family. Our nurses may have to abide by some overly regulated systems, but as Tim Gunn says, they know how to “make it work.” We have patient administrators who explain the ins and outs of missing school for extended periods. Our teachers of all ages and backgrounds and experience levels exhibit calm in the face of anxiety-stricken kids and parents, in the midst of busy days. When tempers flare (and they do) around any number of the million details inherent in getting a sick kid through a school year, they are as resilient as the children.
We have a daughter who has been in and out of the hospital for more than a year. Her team at Mellon and now at the high school are part of our critical support network. I don’t know if we would have gotten through it (or been able to view her future) without them.
I cannot imagine how challenging it is to work with kids all day. Especially tweens and teens with their attitudes and hormones. But they do, and in our experience those teachers who are part of a support team exhibit an empathy that frankly trumps that of some my own particularly paralyzing parenting days. As if to underscore this, I burst into tears at an IEP meeting at the high school this fall. Not out of frustration or anger or fear like I had through surgeries and diagnostic visits, but in reaction to the compassion of the Mt. Lebanon team. Later, when my husband and I were debriefing at Uptown Coffee, my husband admitted to a tear or two also. I guess a bout of kindness in a storm of panic releases a flood of emotions sometimes.
My point is that at this time of year, when we are all giving thanks, I feel like I am blessed to live in this community more than ever. To be heard and supported by the folks who are with our children sometimes more than we are in a week, is critical to coping with a sick child. I want to be sure that each professional in our school district who plays a role in the lives of we parents of children who need a little (or a lot) more compassion know that you are in our hearts as 2015 comes to a close. I know that our family thanks you for the meetings, emails, calls and kind words. Know that you are not only our safety net, but our trampoline to project us forward to a brighter future.