Disappointment

The problem with disappointment is that it is always unexpected. You thought something would happen, and then it doesn't or it has a different (i.e. less desirable) outcome. So not only are you surprised when your vision for that something has been changed, but you are forced to go down a road you might never have expected. And make the most of it. That's the clincher. 

Disappointment is also something that is often experienced and dealt with behind closed doors. Everyone is fighting a battle, and those fighting battle after battle after battle as part of a full-blown war either give up or get brave. I've seen my share of both. And there are fairly no words to describe the latter. The kids, the parents, the families who fight and fight and fight just seem to get braver and braver and braver. What is that saying, God only gives you what you can handle? There have been plenty of times over the past few years that I've been angry with that statement. I used to drive past a billboard everyday that read "If you could ask God one question, what you would you ask?" and everyday my answer was "WHY?!!!" 

There are times I still let myself step into the dark room of anger and grief. If anything, it provides some strength, a recharge of the courage battery. But anger and grief ebb and flow with strength and courage. The must mundane things and experiences open up the door to this room. It does for me; it does for Matt; it does for Willa. 

Adult-sized disappoint looks like leaving your new baby at the hospital in critical condition, waiting for and celebrating your infant's delayed milestones, withstanding stares and ignorant comments about your child's canula/helmet/tilt/halo, keeping a smile on your face when your heart is breaking because your family is split in half, thinking ahead to when your child won't be able to do dance/soccer/somersaults/trampolines/etc. 

4-year-old-sized disappointment looks like Mom and Dad always telling you to slow down and be careful, not being able to go to friends' birthdays with bounce houses (if Mom and Dad don't throw away the invitation first), not being able to take a real bath or play in the rain, not being able to run/jump/climb/play or dealing with stitches/X-rays/CT scans when you fall, learning how to protect a loved one's head from halo pins when giving them a hug, not being able to participate in the preschool Jog-a-thon without Mom's hand. 

If I could take her disappointments and add them to my own, I would, but I can't. Which is sometimes a disappointment in itself. When your kid just can't be a kid. 

But disappointments are often just change. When He closes a door, He opens a window. Another way. A fine way. Ways that have touched us with the most amazing people we've ever met. A hero all his own that has made a halo seem Superhuman. Sisters that seem to just know when I need picked up. The gruff-looking man in orange waders at the Oregon State baseball game that gives Willa his poncho during a rainstorm. A friend that doesn't say no. A cashier that shows Willa his cervical scar that matches hers. A running partner that doesn't expect me to talk about it. A tribe of Curvy Girls that makes it feel normal. Co-workers that know exactly how many more days. A sea of purple shirts and scoliosis bracelets. People coming out of the woodwork to support our whole family. 

If disappoint teaches you anything, it's to expect nothing, take what is given, and find joy in everything. Be brave everyday. 

5 more days... Brave Girl, Wonder Willa