2016 has been a nasty year. We lost Prince to opioids, David Bowie and Alan Rickman to cancer, Alan Thicke and Florence Henderson to heart failure, a captive lowland gorilla named Harambe to a freak zoo accident, a toddler at Disney to an alligator attack, and so many more. Our presidential election brought out the worst in this country and still continues to divide us. There were far too many mass shootings. There was a disturbing amount of police violence. Hundreds of thousands of civilians are now dead in Syria’s prolonged conflict. We’ve been in a prolonged cyber-conflict with Russia without even knowing it. And now a deadly attack on a Christmas market in Berlin.
Then there are our inner circles. I know of too many families who had to bury one of their children this year. Friends who have had to endure tough medical issues. Families on a seemingly never-ending search for a diagnosis. Parents fighting for basic human rights for their children in schools and in their communities.
It’s been a tough year for my own family. My dad almost died. My uncle lost his son. My husband’s side of the family is dealing with their own tragedy. We’re trying to get a handle on my son’s complex medical needs. And then there are the little things that always happen at the worst possible time like a nagging injury that won’t go away; the car needing major repairs before a long trip; or the water heater and oven range conking out right before before Christmas.
Good riddance to 2016. Out with the old, in with the new! I will be happy to ring in a fresh start when the ball drops this New Year.
There has been so much bad it’s hard to filter out the good. But the beauty of reflection is seeing how we’ve grown. As tough as these past 12 months have been, I still have many things to be thankful for.
The cruelty of 2016 has forced me to start to accept things as they are. When you have a child with a disability, you spend a lot of time making sure the world knows how wonderful he is; that you would not change a thing; that his life is as worthy as every other human being’s (shocking that we have to teach people that, isn’t it?). These things are all true and then some. And most days I put up that steel exterior so no one sees the underbelly, the hard stuff. We do that because the interworking’s of our lives are no one’s business; but also to protect our kids. 2016 has proved over and over that society is still far from accepting those who are different. So we stress that our children are more alike than different. And that’s true – but our highs are often higher, our lows lower, and our challenges akin to summiting Mount Everest.
I love my son fiercely. But this year I have accepted that raising a child with a disability is really, really hard. There are medical challenges, behavioral challenges, and emotional challenges. Balancing his needs with his siblings is a constant internal negotiation for me. I feel like I have aged two decades in the 6 years. I’m on edge when he’s in my care because I never know when he might do something (unintentionally) dangerous either to himself or others. I constantly worry about his progress. I’m terrified his school system will decide he doesn’t belong and push for segregation.
I have accepted that the vision of motherhood I once had will never come to be. I won’t be signing up for the PTA. I won’t be a room parent. My school volunteer time is spent in IEP and SEAC meetings and other conferences to address the needs of students with disabilities. I have swallowed a lot of pride to accept that there are a lot of places I can’t go alone with my 3 children unless I have help. There are aspects of parenting I cannot do alone or my children’s safety is at risk. That is a tough pill to swallow. At the same time, I no longer care if outsiders don’t agree with my parenting. Conventional rules and discipline don’t work in my house. The words “no, don’t, stop” are meaningless. As much as I want to limit screen time, it’s not really possible when one child has to be on a nebulizer for 45 minutes 4 times a day. I accept that mealtime is often a disaster. I will continue to make healthy, balanced meals. But when one child has intense food aversions, the whole “you eat what I serve you” mantra goes out the window. When they refuse the dinner I made them and request cereal, I don’t even flinch anymore – into the bowls the Trader Joe’s O’s go! A popsicle for lunch – sure! It’s made with real fruit juice.
I mentioned what a bear of a year it’s been for me to an old friend and colleague recently. I told her I hate saying that because it feels so negative and pessimistic. Her children are older; one of them has a disability. She told me not to feel bad. It happens. When you have a child with special needs, sometimes you can have a rough year or two. Then things get better. Then they get tough again. You just have to roll with it and accept that this is how things are for us.
Somehow her words made me feel better. I’m not alone. I’m not a whiner. We’re all in this together.
As I welcome in the New Year, acceptance will be my theme. No more fighting the hard times. No more swimming against the tide. I’m going to float along the current until the riptide brings me in. Until then I will … Order more take out. Watch more TV. Drink more coffee. Eat more chocolate. Sleep in whenever the opportunity strikes. Phone a friend when I need to vent. Say no to more meetings. Say yes to more dates. Dance with my kids. Laugh with my husband. Breathe. Be kind to myself.
Let’s let being mindful to be kind, not just to one another but to ourselves, and set a new tone as we kick off 2017.