Good Grief

My grief is a revolving door, circling around and around,  in and out.

My grief moves with the tide, ebbing and flowing, violently sweeping me out or gently washing over me. 

My grief is a winter storm, unpredictable, quietly and fiercely dropping a heavy mess on me, altering life plans, and stopping me in my tracks. 

My grief. It is in me. It is me. I met with Caroline's teacher and the school psychologist last week. We sat in the back of Caro's classroom, at a table across from a washer and dryer, and next to a bed. Caro came in to the classroom as we settled in, smiling at me while she put down her book bag, placed something in the sink in the kitchen area, and left the room, and the adults to ourselves. While Andy finds the meetings with the teachers and school staff uncomfortable and awkward, I find them to be a mix of reassuring and heart wrenching, My guess is Andy dislikes the meetings because he feels an unnecessary amount of attention is being given to him, plus it's just not fun to hear about the shortcomings and challenges of our child. As a man who isn't in touch with his emotions, I think he'd rather be somewhere else, perhaps in a meeting that is less emotionally charged. That's why, unless it's the annual IEP meeting, I don't mind if he doesn't come.  For me, the IEP meetings are full of emotion, like every emotion.But, I don't want to show the sad emotions so, to cover up, I make the happy emotions extra happy.  I express those happy emotions in a very animated way, smiling, nodding or laughing. My MBTI personality is "the picnic", so, like in every meeting I have, I want everyone to walk out feeling good about themselves, so if that means showing my pearly whites and making small talk, while hearing that my kid has slipped academically since the winter break and stolen 4 times in the last month, it's what I am going to do. I accept the copy of my rights as a parent, put my autograph on the sign in sheet, nod a lot, maybe ask a few questions, and usually hold in all of my anxiety, stress, and sadness until I get to the car. I've got thirty minutes to cry and attempt to process and digest all that I heard until I get to work, slap the smile back on, and pretend for the next eight hours like I don't have a family, let alone a child with special needs.  The meetings held in between the IEP meeting are the ones that tug on my heart strings the most. I can survive the IEP meetings like an out of body, I've been abducted by aliens, experience. In the more intimate teacher meetings, however I sit directly across from the person who spends every day with my child, and knows her probably better than I do. She is aware of the daily challenges Caro faces and celebrates her little and big successes along with us. She gets her like we get her and that matters. It really, really matters. Because nobody gets what it's like to have a kid with a disability unless you actually have a kid with a disability- or you teach a kid with a disability. Sitting in the classroom that day with Caroline's teacher reassured me that she spends her days with people who truly care about her, not just as a student, but as a person.  As the years have gone by, our conversations with her teachers have become as much about Caroline as a well-rounded person as they are about Caroline as a student. We discuss topics that probably most teachers and parents may never discuss: how to get our kid to wear deodorant, clean her ears, and wear a bra. We exchange emails about Caroline's incontinence issues, the best sanitary pads for her, and how to get her to take her medication. Sure, we care about her History Day project, her reading comprehension and math skills, but we also care about her wiping her bum, how she is going to get to her after school location safely, and how to get her to stop wearing the same pants every day. Lucky for us, her teacher cares about all of this, too, and she incorporates these goals into the fabric of Caro's life at school. I actually wish that neurotypical kids had the opportunity to openly focus on many of these tasks at school, and that more teachers could partner with parents to use the classroom as a space for holistic learning including mental health, physical health and life skills because these facets of a child's life matter as much, if not more, than teaching to the test. As we were about to wrap up the latest conference meeting, and we recapped Caro's challenges and chuckled about many of her unique characteristics, her teacher said to me, "It's hard for parents at this stage because the gap between their special needs kid and other kids gets a lot bigger. I just like to tell parents it's typical to notice this at this age and it's ok."  Developmentally, Caro hit the same milestones as other kids- sitting tripod, using the potty, walking, eating solid foods, talking, etc. She looked like all the other kids. She took dance class and swim lessons. She wore cute Hanna Andersson outfits and matching tights. She let me comb her hair and wash her face. Yet there was a gap. The gap has always been there but, when she was younger, it was disguised as bad parenting or bad behavior. Swim lessons ended in tantrums; she wouldn't wear tights at the dance recital; she refused to walk down the aisle as a flower girl at a wedding after we spent hundreds of dollars on a dress, tickets and hotel room. For every moment we anticipated experiencing childhood again as Caro's parents, we quietly grieved when the experience didn't meet our expectations.  During her early years, before we had a diagnosis, (BD), we'd try and try and try again, hoping the difference we saw between Caro and her peers was a glitch. Hell, for a while, I even had myself convinced it was my parenting, and getting to normalcy with Caro just required me and Andy to read some parenting books and change the way we managed Caro's behavior. Life after diagnosis, (AD), was better because we could build a community around us, and with that community we learned to build a parenting tool box that was designed just for us. We also charted a path to success that was designed just for Caroline, and we became adept at changing those strategies as she changed. Developmentally, Caro's gap has decreased. She has grown so much and, with her team, we celebrate her growth and her successes.  Yet, there are those days that I realize we live in a vacuum. We aren't around a lot of kids her age and we don't really know what milestones neurotypical kids are hitting. We don't know what's developmentally normal- what they are learning in the classroom, what types of conversations they are having with their parents, or with their peers. Most of the time we can live in ignorant bliss, focusing on Caroline with tunnel vision.  Until a moment arises that hits us in the gut- a school function, a Facebook brag post from a friend with a kid her age who won something, spending time with another family with a preteen, or at home when we silently acknowledge that Charlotte has passed Caroline academically. The grief comes from the shadows and without warning: sitting in the school auditorium during a chorus concert, dropping her off at a school dance, having a conversation with another kid her age, keeping our eyes averted downward as she runs up and down the aisles at TJMAXX because we told her she can't buy another water bottle, sitting in a doctor's office dealing with a health issue that is likely related to her disability and having the doctor give us that sad, sorry for us look. It is in those moments that we mourn a loss. We mourn what could have been and isn't. Our heart aches thinking of a life she could have had but won't. We experience sorrow for a parental experience we won't have with our eldest.  The strength of these emotions comes and goes because life goes on and there's much to celebrate as the parent of a child with special needs. We celebrate being challenged as parents. We honor the ability to be a part of a wonderful community we'd not been a part of before Caroline. Our heart grows as we learn acceptance for our child who doesn't fit the mold. We give thanks for the opportunity to love someone purely for who they are, and find perfect parenting moments in an imperfect world.  We have learned to live with our grief, to acknowledge it, to hold it in our hands but not to let it consume our hearts because, if we focus on what we don't have, we might not see all that we do have. "Grief never ends… But it changes. It’s a passage, not a place to stay. Grief is not a sign of weakness, nor a lack of faith… It is the price of love.”-unknown