"Please, for the love of all things special needs parenting, do not give me a to do list right out of the gates as the school year begins. Unless it involves a nap or Bloody Mary at 10:00, I am not interested.
Just give me a week to recover. I will be all over the to do lists in a few weeks. I promise."
"Around hour 10 into the drive, Miranda started into a screaming and thrashing fit. It was intense. Around hour 11, I started having horrible thoughts. Thoughts like if Miranda was not my daughter and I didn’t have to live with all she brought I would be just fine with that. Thoughts like I wished our family could just have all “normal” kids. Thoughts like had I known what I was signing up for I would not have had her.
"As I was hopping between Theatre #1 and #2, I couldn’t help think about the differing abilities of the children presenting in Theatre #1 to those performing in Theatre #2. One set of abilities has the potential to advance the world with technology, and given their Silicon Valley roots, they probably will.
The other set of abilities has the power to bring a room full of people to their feet while filling hearts with warmth and filling eyes with tears."
Prayer has been like a wound I prefer to cover with a clean bandage.
Can I just keep prayer nice and neat? Can I just occasionally peak under the bandage to see if anything is changing? Can I just claim “Amen! Answered prayer!” when things are healing and “God has a plan!” when it’s still a mess?
For about a decade, I kept prayers in a safe spot under the bandage. I had to. There was a deep wound from unanswered prayer...
Sleep deprivation is part of the parenting gig. New moms are easy to spot with their top knots and coffee tumblers. A safe bet is the top knot, make up free, coffee tumbler toting woman you see has not slept in weeks. She is wiped out.
Lack of sleep does all sorts of wacky stuff to the body. Short term effects include cognitive impairment, inability to concentrate, drowsiness, and top knot hairdos. These side effects explain why early phases of parenthood are a blur.
For caretakers of an individual with disabilities, seasons of sleep deprivation can extend well past a decade. My daughter did not sleep consistently until puberty.
This is tough to discuss without coming across cold and insensitive. Special needs parenting is no joke. There is exhaustion, heartbreak, and ample opportunities for worry. We will cry. We will need to be picked up.
With the above reality comes a slippery slope of spending too much time in these areas. I thank God for people who did not allow me to linger and risk the chance of a downward spiral...
Long term caregivers are incredibly fortunate. We have continuous opportunities to grow in capacity to love. We have a second, a third, a hundredth chance to get it right.
Loving perfectly is more complicated than what is depicted on a bumper sticker or groovy 60’s song. Rather, it is a slow process that does not come easy. The biblical definition of love from 1 Corinthians 13:4-8 has countless opportunities to hold a mirror up to our hearts and remind us where we are growing and where there is room for God to be invited in...
Stocking up on bread, wine, and toilet paper are legit snow needs in the Midwest. Dangerously low temperatures close schools because pipes freeze, buses can’t start, and kids stick tongues on flag poles.
Remember the polar vortex of 2014? Anyone? It was so cold people complained the air hurt their face.
The journey with our special needs loved ones will occasionally take us through seasons of winter. Maybe “winter” is no sleep, advocacy, hospital stays, or all of the above.
My special needs daughter was the cause of many disrupted car pool drop offs when she was in grade school. When she did not want to comply, she did what was coined as “the plop”. The plop consisted of all 90 pounds of a 10 year old girl completely limp on the ground.
We had occasions where she would plop in the middle of the crosswalk.
I kid you not. She would plop smack in the middle of the street.
For over a decade yellow has been my everything. This past summer when we painted the house, I campaigned for yellow siding and a bright door to match. It was an unsuccessful campaign, but the effort was fierce and yielded a fabulous turquoise door.
So the whole gray thing is taking me by surprise.
I mean….gray? Really?
Doesn’t the color wheel put yellow and gray as opposites?
Actually, is gray even on a color wheel? Isn’t it so drab and sad that it’s not even called a hue, tint, or shade?
I blame it on 20 years of coaching high-level gymnasts. 25+ hours a week spent with “my girls” where I was paid to point out flaws and demand correction. The expectation being issues were to be taken care of regardless of fear, mood, health, environment, or whatever.
No excuses. !NO DRAMA!
Just fix it so you can move on and be better.
While this made me one heck of a successful coach (if performance is the litmus test), it also has made me a crappy friend to others and to myself...