Tonight I soaked my arms in Epsom salt for an hour so I could type again. I am writing a book on the theology of disability, and it’s going well enough that my finger and wrist joints swelled up from the strain. Today I had to calm down my son who only just fought his way out of an OCD spiral caused by being confined for too long at night on a road trip we took a year and a half ago. He was crying because he loves going to the Lamentations service on Good Friday and the late night Pascha service, but he has not yet recovered from the abject horror he experiences during late night car rides owing to that roadtrip. I had to tell him he’s loved and good even if he can’t go this year. It’s ok, because God’s mercy is still here for him. It eats at him, his weakness, and all I can do is tell him what I know: that God’s strength is made perfect in weakness. That God comes to us, even when we cannot get to him on our efforts.

We made a family plan for Holy Week so that the children can go with us to the daytime services they love: Holy Unction on Wednesday, the Deposition on Friday afternoon, and the Harrowing of Hell on Saturday morning. One of the children who has the easiest to meet sensory challenges (and who is lightest in case I need to carry him) might go with me to the evening service on Friday, where I will sing in the choir. Usually we have gone as a family or most of the family for the big Friday service (our favorite), but our new church doesn’t have a role for my daughters this year. They only ask girls from an older age group to participate as myrrhbearers. Most of my children were only able to stay in past years because they looked forward to their sisters throwing rose petals on the tomb of Christ.

Our memories are shaped around roses and icons and candles and tombs and songs in the darkness, not because my children have all gone to the services or have all gone all of the time. They’re shaped around the cross because my husband and I have nothing else to offer our children so good as the great love of Christ. We tell them the stories and read them the stories and have shaped our home as a lampada to shelter the holy fire of God’s love, even when we aren’t good at bringing home the Paschal flame each year. Some years, only one of us has gone to Pascha. Some years, we missed it because our kids needed us to be home.

Every year, someone steps forward to shame mothers for not bringing children to all of the services of Holy Week. Some years the circulating post is about how children really can behave like well-regulated adults if we are just better mothers. Some years the assumption is that families are doing fun stuff and shirking their Christian responsibilities by not attending Holy Week services. Bless their hearts, the people who write those sorts of articles doubtless mean well. They are the sort of women who don’t have arthritis or disabled children or car trouble, who live within 20 minutes of their church and have a large group of encouraging friends who will help look after some of their not-disabled kids while they walk another of their not-disabled kids around to look at icons and grow sleepy or focused. They’re lovely, reliable people, the sort that probably back in Jesus’ day would have been at the table with him or maybe allowed to cook for him. They’re the right sort of people who do the right sort of things and can give advice about getting to heaven by acting right.

I’m sorry to disappoint you, but I don’t have that sort of advice to offer you. If I lived in Jesus’ day – a bastard kid born to a teen mom who was abandoned, an abuse survivor who didn’t grow up the right way, who has fond memories of getting excited about chocolate and maybe a dress at Easter and the joy of music declaring that He is Risen- I would not have been allowed to cook his bread or talk with his disciples. Don’t get me wrong. I would have followed him anyway, because he would have healed me. I would have loved him, even if I couldn’t appear with him in public, owing to not being the face you really want to see when you think of someone as big a deal as Jesus. I would not have been able to believe that he was really gone. I would have woken up early one morning when the first breeze of dawn brought to me a smell of new life such as I had never smelt before. I would have gone to the tomb even though I couldn’t roll away the stone.

Some people seem to think that the Christian life is about rolling stones away. They press on with their phenomenal strength of will and not-disabled bodies and wide social networks, and Christ rises on schedule for them. They don’t ask who will roll away the stone, because they take all of their children to all of the Holy Week services, and that gives them profound spiritual and physical abilities. They never rob their children of the memory of waving palms before the Lord or eating beans each day until they eat lamb and bacon and cheese (none of which foods most of my children will even touch, because most foods terrify them). They arrive at the tomb, and it’s open already, because of course it is. God is reliable. Do the right things in the right order, and your spiritual plumbing will work just fine. You will have the water of life right when you turn on the faucet. These people are never embarrassing to God, because they have the pattern down.

But some of us are here because we’re embarrassments. We love first and act without even preparing properly. We crucify Jesus and have to borrow a tomb. We gather everything good we have, and it’s only a bunch of spices. We’re the annoying pop up ads of church life, offering essential oils to the wounds of Christ. We show up before he’s even tortured and pour oil on him. Thieves, anyone? We take everything precious with us when we are wakened by the wind blowing from that tomb. We limp along and wonder how we’re even going to roll away the stone. We wake up when the kids wake us up, the way that sometimes one can rise from a dream into a day more beautiful than dreaming. We sing to them, “Christ is risen from the dead, trampling down death by death, and on those in the tombs, bestowing life,” as a lullaby and morning song, and that morning, it’s sweetest. There is even chocolate and muffins and beautiful eggs.

Somehow the Lord manages to rise for us, too. Somehow the mercy of God reaches us even though we only got to Palm Sunday and Holy Unction and Deposition. We see Christ trample death by death from the cheap seats of our houses as we watch over our disabled children. Somehow the smell of bay leaves on Holy Saturday morning fixes our hearts toward the love of God, even though we cannot take our children with us into the night watches. We are women who keep vigil night after night, even when we’re not at church where people can see us, cajole us, praise us. Even if like thieves in the night we steal into the icon corner and extend our swollen jointed arms toward the love of God and beg him to come and steal our hearts and our disabled children’s hearts away from every vanity of the world. When we can go, we go and kiss the Lord. But our lips still burn with the holy song, even when we sing it in a strange land.

If you cannot bring your family to Holy Week services, if you cannot fast as harshly as others, if you cannot eat festive foods, let the wind of heaven refresh you anyway. The mercy of God blows out from the tomb, and even if your dear ones sleep in their beds instead of the church, Christ will rise for them, too.

Tips for Holy Week When You Cannot Attend [Many] Services:

• Look up streaming services from Orthodox churches, such as THIS ONE from Annunciation Greek Orthodox Cathedral. Play them if you are able so you can keep the rhythm of the beautiful prayers of Holy Week.
• Find Holy Week and sacred music through online services such as Ancient Faith Radio, YouTube, Spotify, Pandora, Amazon Music, or Apple Music. Listen when you’re at home or in the car so that your heart is prepared for the joy of Christ’s Resurrection.
• If you don’t usually pray with holy icons, print one or bring one out of storage into a central place in your house. Venerate it (kiss it and make the sign of the cross over yourself) often, because God is with us. If you are not able to print one or cannot have paper in the hospital room or other place where you have to spend Holy Week, search for “Christ Bridegroom icon” and “Resurrection Orthodox icon.” Screenshot some of the images onto your phone so you can look at them where you are.
• Read St. John Chrysostom’s Paschal Homily, even if you can’t be in church for Pascha. It will remind you of where you stand with our victorious and merciful Lord.