I am in rush mode, so we can be on the road before the morning traffic jams. Inhaling with saline, putting bronchodilator into the tracheostomy tube, connecting the cough machine, suctioning, potty chair, suctioning, deflating the breathing support bag of the trach, suctioning, getting Vince dressed, suctioning, putting the speaking cap on the trach, begging Vince to drink a few sips of water, suctioning, brushing teeth, packing Vince’s breakfast and my lunch, unplugging suction machine from the charger, putting on coats, waving Dad good-bye, and getting into the car.

We arrive to a red light, the theme song to the movie James Bond is in my ears, and I take care of the suctioning in a systematic order and tempo. Unbuckle seat belt, switch suction machine on, remove cap from water bottle, press clutch then put car into first gear, suction secretion, dip suction catheter into water, stop suction machine, push catheter back into the protecting case, put speaking cap back on, put seat belt on again, squeeze the tube of the suction catheter onto the steering wheel so it won’t fall on the floor, release clutch, press gas.

Winter break has begun in the kindergarten. The first day was spent with rest, then for the following day I planned to see a puppet show. Well, it will be nice for the family to be together, we will see The Jungle Book, and trach or not, disability or not, we will experience the perfect family idyll on Sunday morning. All week we listened to the songs in the play with Vince, and we were preparing for the weekend program. We go into the auditorium, and I see on Vince’s face that something is not right. There are a lot of kids, there is a lot of noise, and it’s hot. They switch off the lights, the overture begins, Vince starts screaming on the top of his lungs and points to his ear, signaling it’s too loud. After two minutes we are outside, and there is no way I can take him back into the room. We talk about things outside, we try to convince him, even ask to watch the play from the control room. We try again after the intermission, but all is in vain, Vince doesn’t give in, he’s had enough of the loud music. We go home.

“Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”
Philippians 4:4-7

The following morning I am still out of sorts. I am upset. With myself, with my husband, with Vince. I pray to God to take this anger away from me. A mom calls me to pray together. I give my negative feelings, my resentment and my self-pity to Jesus, and the spastic feeling lets up. Then less than a half an hour passes, I apologize to my husband for being grumpy the day before. In the meantime I make breakfast, and while we sit at the dining table, God gives me wisdom. I realize that again I was looking for happiness and not joy. Happiness is characterized by being transient. Suddenly you feel good, then a day or two pass by and you look for the next happiness pill. This time I decided we would have a great time as a family watching puppet show, but God had a different plan. He showed me that this was only my expectation: to fit into the happy family picture set up by societal expectations and to forget about real values. Gratitude, that I have a family that sticks together. Peace, that God gives in each of my prayers. Never-ceasing joy for having a daily relationship with Jesus the Savior, and that it lasts forever.

“Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is—his good, pleasing and perfect will.”
Romans 12:2

But we are just like that! If we leave Jesus out, we can only love with a human’s love. And human love always expects something in return, it’s not selfless. I now expected to get what I wanted, since I do so much for Vince, I deserve it. I expected to go to the theater and enjoy myself if I go above and beyond and even suction mucus at the red light, because I deserve it. I screamed ‘enough of everything already, I deserve happiness!’ I work as hard as possible, I look forward to the Christmas downtime, and I realize that nothing changes just because it’s Christmas break. I push myself the same, only not to get to the kindergarten but to force the commercialized Christmas family image upon ourselves. Enough! Enough of this human love! Dear Jesus, please give from Your love, Your joy, Your peace! Bless every member of our family and our friends, and bring us the holidays filled with peace and the same for every day in the new year. Thank you for your provision! Amen.

“I waited patiently for the Lord; he turned to me and heard my cry. He lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand. He put a new song in my mouth, a hymn of praise to our God.”
Psalms 40:1-3