Time travel is a popular theme in books, movies and television. The plot is frequently this: the protagonist realizes there’s a key problem that needs to be resolved and if they’d only known____ or did____ in the past, it all could have been avoided! Lincoln and Kennedy would be alive a bit longer, the Challenger would have stayed intact and someone would make Kanye sit down already–all would be right with the world.
We all wish we had some do over-ability in our life: tried listening to the people who informed us of information we found obsolete and paid attention to all those red flags we raced by ignorantly. Mostly, I wish I could go back and coach myself (with a healthy injection of patience) at certain points in my parenting and tell myself now what I didn’t know then.
At the birth of our daughter with special needs I would have whispered, “This one’s a little different. She’s a bit more fragile yet has the tenacity of a gladiator. She’s going to stretch you in different ways than your other children. Because of her you will meet new strata of society and professionals that you didn’t know existed. You will draw nearer to God, know what it feels to have Him literally carry you and learn a new level of faith and trust unknown to you now. She has many challenges as well as an abundance of gifts. Learn to focus on what she brings to the world and how she teaches others. Watching and experiencing her trial is going to teach you many things.”
Now, twelve years in, I’ve learned quite a bit and have gobs more to go. When I meet a family new to raising a special needs child, I often share some of these key points:
- You’re not alone and you’re going to be OK—not the OK you were a week or a day ago but you’ll find a new level of OK-ness (that’s not a real word so don’t waste your time looking it up). Even if your child has the rarest disease imaginable, you’re not alone. You will find other families in similar circumstances who laugh at weird things like ostomy bags and ataxia. You have people; you just haven’t met them yet.
- It’s not fair. But neither is your father being an alcoholic, your mother dying of cancer or becoming a paraplegic after defending your country—none of it is fair. Look around you and you will see a world full of people whose lives didn’t turn the way they’d expected. You don’t get a sticker for raising a special needs child (well, some of us do get rock star parking!), it’s just one of a variety of ways to suffer, grow and find joy in even the wonkiest of circumstances. I plead with you to not let the thought “No one understands” take root in your soul too long. Take the seed of empathy and nourish that instead. It will forever change the way you see others.
- Realize that God’s plan for your life and your child are not yours. You will learn (slowly) how to be incredibly flexible (like a reed in the wind, sistah) with how you plan your time, efforts, money—everything. Channel your inner Elsa and let it go.
- All my children have challenges: some have an emotional fuse comparable to a gnat’s and others have a voice pitch approximately an octave higher that dog whistles. I encourage you to not wrap your family’s life around one child’s issues. Sure, my daughter spends a chunk of time in therapy but I’ve diminished it over the years because I don’t want my other children to feel like they were raised in an office with one train table and back issues of Highlights magazine. Find a quasi-comfortable middle ground that works for your family.
- I learned early that I don’t have a rare genetic disorder—my daughter does. It is not my trial to bear because goodness knows I have enough issues of my own to worry about. I am like the Olympic curler prepping the way before her but this battle, this struggle for her to learn, to move and to succeed is hers alone. I can’t take it on because it’s not mine to take.
- I have a dear friend who says “I will not be angry at myself for knowing tomorrow what I didn’t know today.” Learn from your mistakes, dust yourself off and hobble on.
- Learn to lean: on God, on faith, on family and on friends. I was three kids into this parenting gig when I grasped that I needed people and that I could ask for help and I sure wished I’d asked sooner. Give yourself permission to be vulnerable, take off your “we’re all fine and dandy here” mask and let people in. Let them know that this is indeed hard and how they can help and support you.
I intended for this column to be a list of all the things I wish I knew way back when I was clueless and eager for a miracle cure but I realized I only know now because I trial-and-errored my way through the last twelve years taking two steps forward and five and a half steps back.
There is no shortcut to wisdom, empathy and self-assuredness. You simply do your best and do better tomorrow and you realize part of being a grown-up is adjusting your sails and heading into uncharted water knowing that you’re certainly not the first to enter and you are assuredly not alone. We don’t need a trusty time machine; they’re too heavy anyway and goodness knows Kanye and his friends need it more.