Joseph's Birthday, or the View Without a Curtain

 I used to think that parents and siblings of medically complex children were "living saints," that they were able to do so much more than I could do. Now it is not uncommon that friends and acquaintances suggest I have so much capacity or patience or love or say complimentary absurdities, like, "I could never have done what you did." Yet I've now learned that the mother of a disabled child is just a regular mother, asked to do more than she ever thought she would be. Similarly, Thomas's siblings are just regular kids who continue to be asked to sacrifice more than I ever would have asked them. I have often seen adult siblings who grew up with disability in the home and they seem to me so much more holy. But you know what? Siblings also suffer terribly and sometimes harbor lifelong challenging feelings . . . something else I've now learned. 

Today was our sweet Joseph's 9th birthday. After our family being locked down in isolation for more than a year during Thomas's cancer treatment and surgical complications, all Joseph wanted was his very own birthday party--HIS FIRST ONE IN HIS LIFE WITH FRIENDS INVITED--but it had to be canceled because of this snow and ice storm. Joseph remained cheerful in the face of that change and he enjoyed opening gifts with us this morning. 

But then, as we were baking cupcakes, Thomas suddenly needed to go to the Emergency Room. Mom and Dad leapt in the car, Chris having to drive me in the 4WD because of the snow. We took Joseph and David with us for babysitting reasons. So, instead of a nice birthday dinner followed by cupcakes, Joseph spent five hours sitting in a car in a snowy parking lot at the hospital, eating a slice of pizza from the gas station for his dinner. He had about five minutes' notice for this change on his birthday and, I'm not going to tell you it was all roses with my Joseph, a "living saint," because that would be a lie. However, this emotional pain is how patience, longsuffering, and compassion have the opportunity to be developed, and I'm proud of the degree to which my nine-year-old navigated the evening.

I'm proud of my kids ages 15, 13, and 10 who were left home alone. On their own, they decided to cook the full hot dinner I had planned, just in case we returned soon (looking up recipes to learn how), as well as finish baking the cupcakes. They cleaned up beautifully. They shoveled the sidewalk free of snow. They folded a dry load of my laundry and finished a thank you note I was trying to get out. They took good care of the dog. They texted me repeatedly with concern about Thomas.

And I completely take for granted my husband's devotion because what else would a husband do but leap in the car, and then sit for five hours while babysitting the other little kids? The truth is that many men don't do that, and I'm grateful for Chris' steadfast devotion to the family.

I also used to think all people with disabilities or medical complexity must be so holy, their having grown virtuous through suffering. Now I realize that each disabled person is a human being with all his own personality and nuances. Maybe his disability formed him to holiness, but maybe it formed him to wretched resentment and bitterness--just like ALL OF US who don't possess any particular diagnosable disability also have to choose to grow in holiness or descend into wretchedness. Tonight Thomas suffered a challenging five hours in the ER, experiencing a lot of acute pain, fear, crying, and screaming. The picture of him is misleading because it was taken when he was finally given medication that made him loopy and very happy. He is better tonight, sleeping in his own bed, but these events are tough. How will Thomas be shaped by them?

Happy meds at the hospital

Happy meds at the hospital

I think I'm stressed out just trying to juggle making cupcakes, cleaning the kitchen, dealing with wet snow gear all over the floor, and the four-year-old is being too loud . . . when suddenly I'm headed to the ER in the time it takes me to grab my purse and put sneakers on my kid. It is a continual weight on this mother to know that for the last year, I've dropped everything and taken Thomas to the ER many times. I can have no security in any moment of any day . . . but the truth is that God has given me the gift of pulling back the curtain that blinds us all who think we have security and certainty in our plans. The truth is, none of us has security while in this vale of tears. What will I do with the heaviness of that reality? Will I grow in virtue or increase in bitterness?