Sean and I are in the car eating cherry slushies with spoons. He is in the back seat and I am sitting sideways in the front so I can see him. “Are you happy?” I ask him. He smiles very big, and says, “YES!” “Me too,” I say. “I’m pretty happy too.”
When I pick him up at the end of his day there are a variety of things he might say as he is handed into the car by his teacher. One of my favorites is, “Hello boys and girls.” That one cracks me up. He is a funny kid.
For a 13 year old he is pretty quiet most of the time. He has several voices though. Most often he speaks either in a bright staccato reminiscent of a character in an old cartoon, or in a soft, quiet voice he usually uses when he has more to say. When he speaks low I think it is because he is a little nervous about saying more so he talks really fast. “I’dliketolistentorockyroadtodublinplease.” This he says many times each day because The Rocky Road to Dublin is his favorite song. (He especially likes the version by the High Kings). Gaelic music is his jam. It’s all we listen to when we are together. It’s a good thing I like Irish music too.
He doesn’t particularly like me playing with his toys- which is a bummer because he has a lot of fun toys. His parents make sure he has exactly the right things that are fun and also good for him- lots of learning and sensory toys. He likes me to be with him when he plays but not for me to touch anything. Sometimes I sneak a piece of that cool slime putty but I give it back as soon as he notices. Eventually he lets me play too. I’m also a fan of his extensive rubber ducky collection. He spends a lot of time with those guys. Which means I do too of course. It’s a regular rubber ducky party sometimes.
Don’t be fooled by the wide, dreamy blue eyed gaze, the sweet, soft face and fuzzy head of this boy, all of which give him a hazy angelic look as if he is in another world. He can seem that he is thinking of something else or as if he isn’t aware of his surroundings. However, Sean is taking in everything.
His mom is a singer and she has been working on a new song lately. She is singing it in the kitchen and she pauses while she looks for something. In the pause Sean supplies the next phrase. She sings the next one. He sings the next one after that. He knows the whole song! We’re impressed. He has certainly been listening when his mom was practicing.
Sean is pretty calm and quiet most of the time- until he isn’t. His feelings are apparently pretty intense at times. To those of us on the outside the intensity appears sudden. He makes a heart rending announcement. “Oh no! Oh no! SAD! SAD!” We tell him we are sorry he is sad and ask him to take a deep breath. He is very good about this. He always does it when we ask him to and it always helps. I have loved seeing how understanding and compassionate his parents are when this happens. They are very good at encouraging, guiding and bringing out the best out in him.
Once he and I were at a playground and a little boy asked, “Why can’t he talk?” I said that he can, he just doesn’t most of the time. Then the boy asked, “Why do you follow him around like that?” Sean took off running right then. I said , “Because he does that!” And I took off after him. I found him hiding behind a column looking upset. “Are you upset?” “Yes.” “Is it because of what that little boy asked?” “Yes.” “Sean there is nothing wrong with you at all. You’re perfect just the way you are, OK?” “OK.”
On the way home I played him “The Rocky Road to Dublin,” as many times as he wanted.
Sean is loving and affectionate. He can be very cuddly especially when he is in the mood which is usually later in the day when he’s tired. He likes to get in his dad’s lap or in his arm chair with him, hug him and rub cheeks with him. They’re very adorable.
He likes to lay in my lap or embrace me and say, “Friends!” Which I love. He likes to stand in the kitchen with his mom touching foreheads and talking with her.
Sean seems really secure and to know he is valued. He seems to understand his special place in his family. He is lucky to have his grandparents nearby. He loves them and asks about them all the time. He has a lot of support. Families like this are great to see and an honor to work with.
Sean laughs a lot. Sometimes it’s the kind of laugh that makes him go running through the house like a madman, as if he can’t contain his joy and enthusiasm. Whatever is going on in his mind, it’s hilarious to him.
He has his little jokes with us. He might say, in his idiosyncratic sing- song, “seventy has five letters.” I say, “ nuh uh!” His mom says “how many is it really?” After a while he admits it has seven letters. Which he knows very well. He is quite amused by this. As for me I had to count the letters on my fingers to make sure.
Sometimes we are playing quietly or watching something and he says,” tickle me.” He may or may not laugh when I do but I have told him if I am going to go to the trouble I expect laughter. He obliges dramatically with satisfying shrieks.
Another common request from Sean is “high five.” Or he may say “H-5!” Sometimes he does want to high five. Other times what he really wants is to hold hands. So we do.
“Repeat after me,” I say, and he does, a word at a time. “I. AM. A. CUTIE PIE!”
Sometimes I ask, “Who’s a cutie pie?” He says, “SEAN!” “That’s right.” And he really is.
Sometimes he sits in the hammock and I sit in the swing and we listen to Irish music and are content. These are some of the nicest moments in my day- he and I swinging, listening to music and smiling at each other.
We are playing with a bunch of rubbery letters of the alphabet and Sean suddenly disappears. I’m surprised. I look down at the counter and he has spelled out a message in colorful plastic: BYE.
My late husband, Bob, during our engagement, had been deeply moved by his first Holy Thursday mass. Watching the priest wash parishioner’s feet impressed him profoundly.
One time we were talking about Vigils the night before Catholic funerals. He wondered if the same thing happened before a wedding – a service with readings, prayers and a rosary. I said no but I wish that there was a tradition like that.
Bob thought we should have one. Well why not? We found out this was something that had to be a private thing we did at home rather than in the Church. We started planning our at home wedding vigil.
We looked at books like The Blessing Cup and a Catholic wedding prep book called Marriage, Sacrament of Hope and Challenge, for ideas since both contained little rituals that could be done at home, and then we wrote our own.
We invited friends over for the night before our wedding (we had our bachelor and bachelorette parties earlier in the week).
Bob definitely wanted us to wash each other’s feet, and he wanted a way to include my kids from my first marriage (their dad had died in a car crash when they were little). He felt he wasn’t just marrying me but becoming family to them too. So he bought them both necklaces as tokens of his commitment to them too.
Bob was not Catholic (yet). Most of his friends weren’t either. So while we Catholics prayed the rosary, the non- Catholics could go to the back yard where Bob would have a fire going and could play guitar and sing and people could talk or join him. We rosary pray-ers would join them when we finished.
Our ceremony included an opening prayer, a Scripture reading, intercessions, and an exchange of words of commitment before we washed each other’s feet. We included Bob’s gifting the necklaces to the girls, the sharing of a “Blessing Cup” we passed around, an Our Father and a closing prayer and plus lots of hugs.
I mostly remember that just as he finished washing my right foot, he gave my toes a squeeze with those big warm calloused hands of his.
I think a wedding vigil is such a beautiful idea, a wonderful thing to do. A couple needs as many prayers and as much support as they can get!
Bob was already fighting brain cancer by the time we did this. Our marriage was far from long enough but it was a beautiful one. I am extra glad we started it this way.
Note: I will add to this novena daily until I have reached 9 days. Mary, Immaculate Conception is the Patroness of the United States
Novena Intention:
For the release of Kilmar Abrego Garcia, for the protection of all who are unjustly detained, and for the conversion of our nation toward justice, compassion, and truth.
Day 1: Mother of the Lowly
Scripture:
“He has brought down the mighty from their thrones and lifted up the lowly.”
—Luke 1:52
Reflection:
Holy Mary, you yourself fled as a refugee to Egypt. You know the fear of the innocent pursued by the powerful.
Today, we ask you to look upon your child, Kilmar Abrego Garcia—torn from his family and unjustly (mistakenly) sent to a gang prison in El Salvador infamous for its human rights abuses. Intercede for him that justice may be done swiftly and mercy shown boldly.
Immaculate Heart of Mary, hold Kilmar close under your mantle, in the crossing of your arms, safe in your Immaculate Heart. Protect him in that terrible place. Give hope to his wife and children. By your prayers may the light of the Holy Spirit of wisdom, courage, fortitude, righteousness and compassion SHINE into every courtroom, agency, and hardened heart. Inspire those in power to act with courage. And guide us, your children, to build a nation that defends the dignity of every life. Mary pray with us that the mighty will be humbled and the lowly lifted up.
O Mary, conceived without sin,
pray for us who have recourse to thee.
Immaculate Heart of Mary, Patroness of the United States,
pray for us
Day 2 Mother of Immigrants and Refugees
Scripture
When an immigrant resides with you in your land, you shall not oppress them. The foreigner who resides with you shall be to you as the citizen among you; you shall love the immigrant as yourself, for you were strangers in the land of Egypt: I am the Lord your God. Leviticus 19:33-34
Reflection
Mary, you carry the hope of the refugee deep in your heart. You understand their desperation, how hard it is to leave community, family, and ones country behind. You always did what you had to do for Jesus, impelled by your love for him and for us too who are all your children.
Please forgive us as a nation, for how we have treated our brother, Kilmar Abrego Garcia. We bring Kilmar and his family to you , as well as all others unjustly detained and imprisoned. Draw them all into your Immaculate Heart full of tenderness and the protective love of a mother. Intercede for their release.
Intercede for the hard of heart, the stubborn, the arrogant and the cruel. May the Holy Spirit blow through their lives upending their schemes and granting them the highest of graces; repentance and humility. May those opposed to justice receive a strong desire to right their wrongs.
By the flames of the Holy Spirit that burn in your heart, Holy Mother, illumine every place and person handling this case and others like it with Wisdom, Understanding, Counsel, Fortitude, Knowledge, Piety, and Fear of the Lord.
.
The Memorare
Remember, O most compassionate Virgin Mary, that never was it known, that anyone who fled to your protection, implored your assistance, or sought your intercession, was left unaided. Inspired by this confidence, we fly unto you, O Virgin of Virgins, Our Mother. To you we come, before you we kneel, sinful and sorrowful. O Mother of the Word Incarnate, despise not our petitions, but in your mercy, hear and answer them. Amen.
Immaculate Heart of Mary, pray for us.
Day 3 Mother of the Accused
Scripture
But Suzanna cried aloud, “Eternal God, you know what is hidden and are aware of all things before they come to be:
you know that they have testified falsely against me.Here I am about to die, though I have done none of the things for which these men have condemned me.”
The Lord heard her prayer.
Daniel 13:42-44
Reflection
Mother, the night your Son was betrayed and arrested, falsely accused, beaten, mocked and tortured, your heart felt every blow even if you could not see them. As his mother you wished you could take the abuse yourself instead of him. You prayed for him, burying your tear stained face in the Father’s chest.
Pray for Kilmar, for all of the unjustly detained and imprisoned now, for whom your Son gave his face to slapping and spitting with no resistance. Intercede for his release, intercede for his family and everyone fighting for him. Give them all strength and hope during this terrible time. Protect him in that terrible prison. He is your little son. Give him a mother’s presence.
Kontakion 4 (an Orthodox hymn to Mary)
A tempest of many misfortunes … doth beset me, and no longer can I endure its ragings.
But as Thou art the merciful mother of my Savior and God, lift up Thy hands to Thy Son,
beseeching Him to regard the bitter sorrow of my heart
and to raise me up from the abyss of despair, who cry to Him.
Day 4, Mother of Mercy
Scripture:
One of the soldiers pierced Jesus’ side with a spear, and immediately, blood and water poured out.
John 19:34
Reflection
Holy Mother, you stood at the foot of the Cross of your Son, your immaculate heart pierced through with trauma and grief. You suffered with your Son in profound solidarity and compassion. Help our entire nation to grow in compassion. May our leaders have their hearts opened and no longer mock empathy, but repent and receive mercy themselves. May the love and mercy expressed in the outflow of blood and water from Jesus’ side, be deeply received by each of us. Mother, by your pierced heart, by your sorrow and faithfulness, by your willingness to stand at the side of the condemned come what may, urge us to rise up and join you in standing with those who suffer. Show us how to bring the mercy of your Son, the love he bears each of us, to everyone. May the love and sacrifice of the Lord, his mercy and grace, comfort Kilmar, and all of the unjustly detained and imprisoned and their families today.
Salve Regina
Hail, Holy Queen, Mother of Mercy, our life, our sweetness and our hope. To thee do we cry, poor banished children of Eve. To thee do we send up our sighs, mourning and weeping in this valley of tears. Turn then, most gracious advocate, thine eyes of mercy toward us, and after this our exile show unto us the blessed fruit of thy womb, Jesus. O clement, O loving, O sweet Virgin Mary.
Day 5, Mother of those who Mourn
Scripture
Blessed are those who mourn, for they shall be comforted. Matthew 5:4
Reflection
Oh Mary Desolate, let us comfort you and make reparation to you for all you have suffered by loving and standing for those who are unjustly imprisoned, torn from their families and communities, mourned by their friends. Teach us to stand with you in standing for them and those who mourn them. May we offer you sweet solace in our friendship and solidarity with you and your Son today, with prayer and acts of service. In sitting with you in silent hope, may we be sitting with them as well just as you do. May Kilmar and all the unjustly imprisoned and detained feel uplifted and supported by you and by us. To this we dedicate this day.
Sorrowful and Immaculate Heart of Mary, pray for us.
Day 6
Mother of the Risen
Scripture
For he who is mighty has done great things for me, and holy is his name.
Luke 1:49
Reflection
Mary who can imagine your joy when your Son was returned to you? When all of life had been restored by his resurrection? How beautiful the whole world looked to you! How beautiful the face of your Son glorified. You probably wanted never to stop holding him. I bet you wanted to cook him all of his favorite foods. You would not have been able to keep your eyes off him, even though your sight of him was blurred by your joyful tears.
By the joy your heart knew that day, intercede for other mothers, wives, children, desperately wating for the return of their sons, their husbands, their fathers. Intercede for the return of Kilmar Abrego Garcia to his home and family. Pray for all of the unjustly detained and imprisoned that they may be brought home soon. Pray for our country as we spiral into disregard for the lives of immigrants and the rights and dignity of all of the marginalized. Mother of the risen, help us to rise. Help us grow in justice, righteousness and compassion. Let us reflect the Heart of your Son, and the love of your Immaculate Heart in our lives.
Regina Coeli
Queen of Heaven rejoice, alleluia
for the Son whom you merited to bear alleluia
has risen as he said, Alleluia
Pray to God for us, O Virgin Mary, Alleluia
For the Lord is truly risen alleluia
Day 7 Mary,Mother of the Church and Queen of Apostles
Scripture
They all joined together constantly in prayer, along with the women and Mary the mother of Jesus.
Acts 1:14a
Mother of the Church and Queen of Apostles, intercede for the United States Conference of Catholic Bishops to take a strong clear stand on behalf of migrants and refugees, and in defense of the poor and all who stand to be harmed by this administrations policies and actions. lift your kindly hands to your Son, on behalf of Kilmar Abreago Garcia all the others who are unjustly imprisoned or detained, all who are afraid now. Obtain the release of the prisoners, the conversion of those who would oppress. Your Son did not give us a spirit of fear, but of the power of love. He gives us courage. Remind us, especially Church leaders and government leaders, that when we speak up, we are not to worry what we are to say; it will be the Spirit of Our Father speaking through us. In the spirit of Pope Francis, let us be brave on behalf of the powerless.
Prayer by Pope Francis for our world in danger
O Mary, our Mother, we come again here before you. You know the sorrows and struggles that weigh heavily on our hearts in this hour. We lift our gaze to you, immerse ourselves in your eyes, and entrust ourselves to your heart.
You, too, O Mother, have faced difficult trials and human fears, but you were courageous and bold. You entrusted everything to God, responded to Him with love, and offered yourself without reservation. As the intrepid Woman of Charity, you hurried to help Elizabeth, promptly addressing the needs of the couple during the Wedding at Cana; with steadfastness of heart, on Calvary you illuminated the night of sorrow with the Easter hope. Finally, with maternal tenderness, you gave courage to the frightened disciples in the Upper Room and, with them, welcomed the gift of the Spirit.
And now we beseech you: heed our cry! We have need of your loving gaze that invites us to trust in your Son, Jesus. You who are ready to embrace our sorrows, fly to our aid in these times oppressed by injustices and devastated by wars, wipe the tears from the suffering faces of those who mourn the loss of their loved ones, awaken us from the stupor that has darkened our path, and disarm our hearts from the weapons of violence, so that the prophecy of Isaiah may quickly be fulfilled: “They shall beat their swords into plowshares and their spears into pruning hooks; one nation shall not take up sword against another, nor shall they train for war again” (Isaiah 2:4).
Turn your maternal gaze upon the human family, which has lost the joy of peace and the sense of fraternity. Intercede for our world in danger, so that it may cherish life and reject war, care for those who suffer, the poor, the defenseless, the sick, and the afflicted, and protect our Common Home.
We invoke you for the mercy of God, O Queen of Peace! Transform the hearts of those who fuel hatred, silence the din of weapons that generate death, extinguish the violence that brews in the heart of humanity, and inspire projects for peace in the actions of those who govern nations.
O Queen of the Holy Rosary, untie the knots of selfishness and disperse the dark clouds of evil. Fill us with your tenderness, uplift us with your caring hand, and grant us your maternal caress, which makes us hope in the advent of a new humanity where “… the wilderness becomes a garden land and the garden land seems as common as forest. Then judgment will dwell in the wilderness and justice abide in the garden land. The work of justice will be peace…” (Isaiah 32:15-17).
Day 8 Mary, Throne of Wisdom
Scripture
God of my ancestors, Lord of mercy,
you who have made all things by your word
And in your wisdom have established humankind
to rule the creatures produced by you,
And to govern the world in holiness and righteousness,
and to render judgment in integrity of heart:
Give me Wisdom, the consort at your throne.
Wisdom 9: 1-4a
Reflection
Mary, today we bring the justices of our Supreme Court to you, upon so much of what happened next for Kilmar and all others unjustly detained or imprisoned, depends. Give them wisdom and just judgement in what they decide to do in the face of this administrations’ delays, denials and defiance, lies and various distractions. Give them fortitude and inner strength, a clear understanding of what is at risk for our country if they allow the president and his administration to defy court orders.
You are the Throne of Wisdom, who brought us the Son of God. You are the Spouse of the Holy Spirit, who is the power of love, the giver of life, the inspiration of wisdom. Your Immaculate Heart is filled with intelligence as well as tenderness, courage and love. Intercede for us, for Kilmar, and our courts, especially our Supreme Court.
Prayer
Come Holy Spirit,
Come by means of the powerful Intercession
of the Immaculate Heart
of Mary,
Thy well -beloved spouse.
Day 9 Mother of the Americas
Scripture
”Behold your mother.” John 19:26
Reflection
Mary Mother of the Americas, and Patroness of the United States, pray for us. We ask this because this is about so much more than Kilmar alone. This is about our country’s slide into a competitive autocracy style of government where human dignity is disregarded. We appeal to your motherly protection, to your goodness and love of all people. Intercede for our nation which risks becoming a cruel and oppressive one.
We fervently and with great trust on this last day of our novena, commend to you our battered democracy. We bring to you with trust in your special love of the persecuted victims of injustice, your little son Kilmar Abrego Garcia and ask you to raise your sweet face to your Son, to ask for Kilmar’s release, for his safety and freedom, and that of all those unjustly detained or imprisoned. Please do not stop interceding for us and for them until our request is granted. Your Son said, “Blessed are those who hunger and thirst for justice for they shall be filled.” We are here to be filled with his blessing then. Let us not be disappointed.
Traditional Prayer
to the
Immaculate Heart of Mary
O Most Blessed Mother, heart of love, heart of mercy, ever listening, caring, consoling, hear our prayer. As your children, we implore your intercession with Jesus your Son. Receive with understanding and compassion the petitions we place before you today,
When I used to volunteer for Hospice I would deliver flowers every week or so to an old man who had kidney cancer. He lived way out in the middle of nowhere in a small, very old wooden house with his wife, Priscilla. He was my favorite stop. We used to talk and talk. I prayed with his family, sons and daughters, cousins, brothers and sisters, in the kitchen holding hands. They prayed spontaneous vocal prayer. I was shy so I prayed Come, Holy Spirit but they were delighted and said it was wonderful.
He liked to pray for me about things that came up in my life. He would say he had “pondered” in his heart and reflected on a situation in my life and tell me what he felt he got in prayer about it. He often worried about me being a widow so young, and thought I should marry again. He prayed a “holy Christian man” would come into my life. Years later, this did happen, and I’m sure Mr. J.D. had something to do with it. I was surprised he could worry about anyone else when he was dying. But that’s how he was.
When I came in, he used to tell me how his day was in spiritual terms. He would say, “I been deep in the Lord, deep in the Lord all day today.” Another time, in his last few days, he said, “I’m sorry I just can’t talk about anything else but Jesus Christ anymore.” I said “No need to apologize. That’s what I think about all the time too. “ This was in 2002. I still remember him sometimes and smile. He’s deep in the Lord for sure
Today is the Feast of the Holy Innocents, the toddlers and babies killed by Roman soldiers at Herod’s orders after Joseph fled to Egypt with Jesus and Mary.
I have never liked the traditional way of describing these kids as martyrs. A martyr chooses death rather than betraying Christ. Little children suffer and die before the age of consent and from the terrible things adults do.
I also am not sure abortion is exactly the best modern comparison to what happened that day. As far as we know the tiny innocents in their mother’s womb do not have consciousness yet. I imagine them, at least early on, as in a dreamlike bliss, violently but quickly disturbed and ended by abortion. Abortion is violent and tragic in several ways. However, as Pat Benatar sang, “Hell is for children.”
This is a good day to pray for children around the world who suffer the violence and callousness of adults, especially from state sponsored terror and genocide where there is no safety, no relief, where parents cannot protect them, such as in Gaza where parents write their children’s names on their limbs in case they are killed so they can be identified, where children are orphaned, maimed, under the rubble, starving, sometimes being operated on without anesthesia if they are lucky enough to find care at all. Surely their blood cries out to the Lord. We all know the outrageous numbers. Hell is for children.
Ukrainian children suffer war as well, and I am struck by the fact that Russia is taking the children away from their parents and into Russia. It reminds me of our child separation policy during the last Trump administration; something a lot of us lost sleep over, protested but felt powerless to stop. The damage to those little ones is profound and many of them were sexually abused as well, or never reunited with their families. It’s a method of torture I believe, to do this to kids and their parents. Some of those children were nursing babies.
In many countries life is so dangerous or poverty is so great that parents are forced to flee with their children to find safety or go where life is possible only to be rebuffed and unwanted, subjected to detention or camps or sent back to the dangers they fled after an often long and dangerous journey.
In Sudán, famine threatens and children die of malnutrition as parents look on helplessly. This is happening in so many countries.
I haven’t heard what life is like for the children of Haiti as their country descends further into chaos, violence, and gang rule.
We know children are forced to fight and kill in parts of the world. Children are trafficked and live lives of nightmarish abuse.
Children are abused in their churches, schools, and families and too often the abusers are protected instead of the children.
And here in America, the leading cause of death for our children is gun violence. .
These are things adults have done or conditions the world of adults have created that massacre the souls minds and bodies of children who deserve safety and love, freedom to be kids. These are the holy innocents of our time.
This is overwhelming. What are we supposed to do? Jesus was stern about any harm done to little ones.
We need to be a part of lessening their suffering, advocating for them, of challenging the structural sin of our world, and the wrong headedness of the powers that be. Nothing will change if we don’t.
Hell is for children, but we are allied with Heaven and we hold the gift of prayer given to us by God. As we stand up for children and help as we can, God makes our prayers and actions big and far reaching. We can be everywhere he is, holding frightened children, drying tears, giving strength, transforming the world.
Holy Spirit, we pray for the Holy Innocents of our time and we dedicate this day to them. You are the comforter and the giver of life, the one who strengthens, uplifts, transforms, the Spirit of Love and Truth, Father of the Poor. Make your way through this world bringing light and nourishment and peace. Make us repent of the sins of the world and show us what we must do. Guide our prayer for every child everywhere in need of rescue and relief of sorrow and fear. May our leaders prioritize the needs and rights of children to safety and freedom and family life.
Bless every little heart on earth on this day of the Innocents.
None of the women of her family or village were there to help her. Men were not used to being part of the birthing process. But Joseph, surrounded by the kindly witness of the animals who seemed to understand, did his utmost for Mary that night in the dark, in the hay of a stable. Maybe she told him what she needed since she would have seen many births by then, going with her mother to help the other women. Joseph held her close and they prayed, wiping tears from each other’s faces, telling each other “You’re so brave!”
Mary laid the Baby in a feeding trough after his first nursing and after wrapping him in swaddling cloth she had brought with her, while Joseph cleaned up and brought her water. Then they would have placed the baby between them and slept, waking to feed him, to gently laugh and touch his soft little head wondering what was going to happen now as beyond the stable the rising star of Bethlehem shone out to the three wise men on their travels, and the angels sang to the shepherds in the fields filling the sky and their hearts with awe and joy.
The Word became flesh and made his dwelling among us. We have seen his glory, the glory of the one and only Son, coming from the Father, full of grace and truth.JOHN 1:14
Something Zane loved to do was make cookies. This is something we did nearly every day. I used to hold his hand to help him crack an egg and make sound effects for him. He liked that. He used to try to eat the butter and show his enthusiasm for our baking activity by mouthing the bowl. His very favorite part was pouring the mix into the bowl. I used to say, “Here comes your favorite part!” I bought the same cookie mix today and I’m in my kitchen making cookies in spirit with Zane, smiling and chuckling at the parts of our process that I remember.
Well. my granddaughter will be happy and surprised to see cookies when she gets home from school.
Zane was a young nonverbal autistic guy with cerebral palsy that I took care of for the last four years of his life. He died at 20 years old on August 22.
I have been rather dysfunctional lately. I go to work (I still have one of my jobs) and I come home, do the minimum such as take care of my chickens cats and dogs. Then I lay in my bed and stare at the ceiling. My heart hurts. I feel like I am dying. It’s grief of course, for Zane, who died suddenly and unexpectedly August 22 of this year.
At the same time I have lost my job. I took care of Zane for about four years. I also take care of Mac, another special needs young man.
So I have lost my main job, my job with Zane, which is a crisis in itself. It’s hard to make decisions when you’re grieving and it’s not the best time to do it. However, I don’t have time to do this any other way.
I really love working with special needs young people. I seem to have a knack especially with those who are nonverbal. It is a calling I believe, to do this work. It’s a work that is love. It means a lot to me.
I interviewed with a new family. It went very well and they would love me to come work for them. I liked them too. I said I would let them know in a day or two. Then I cried in the car and had to go over and hug Zane’s mom. We sat on the couch and talked for a while about Zane, about things. Her loss is so great I had to stop typing for a few seconds just now thinking of it. I feel guilty talking about my own grief but I can’t help it.
When my mom got restless or had a problem she needed to think about, she re-arranged the furniture and cleaned madly. Sometimes she pulled up carpet or made new curtains and painted the living room to match. I’m not good at sewing. I don’t have money for paint. So I stuck with re-arranging the furniture and cleaning madly.
I talked to my friend Shawna who somehow manages to give me clarity when I need it. I continued to clean madly. My dogs were a little concerned.
I thought about how I am worried about the pay for a prospective new job which is far less than I made at my last. I wondered how I would pay the mortgage now. I finally got a house and I am not giving it up. I was thinking about what to do about that.
However the main issue is grief. It’s hard for me to think of replacing Zane and trying to love someone new already. I reflect that I have never failed to love anyone I have taken care of. In the nursing home where I did my clinicals there is no way to really get to know the people you care for. You take care of their immediate physical needs and even if they’re crying or something you have ten other patients you have to get to who need to be changed or whatever. Even then I always cared for each one in a loving way as best I could. That’s just how I do it. I can do this.
I have a daughter in college. I will do whatever I can to make sure she gets as far with her education as she wants to. She is busy applying for master’s programs lately. No matter what she is going. My other daughter has been going through hell this summer. It’s pretty unimaginable the way she is holding it together. However she needs me. Sometimes she needs my help. I’m going to be here ready.
If there is anything in my life I have learned to do it’s grieve and fight for my family at the same time.
I can work out the pay part somehow but I prayed about my next person to take care of. I think this could be the one I asked for or was led to. . I think I will try it and do my best.
The dogs needn’t worry. I think I am through cleaning for now.
Today I did something I have never done before. I took part in an “honor walk” for someone I love very much who has died- just yesterday in fact. I had never heard of an honor walk before. This is something that was done today for this person so beloved by so many. I can’t tell you who this person is to me because the family has not shared anything on line as far as I know so I won’t either.
However I thought this honor walk was pretty touching. Everyone came at such short notice and it was a lot of people!
It had to be carried out quickly due to the family’s decision to donate the organs “so he can be the answer to another family’s prayers.”
His body would be flown to Dallas for this purpose.
This death was sudden and tragic. Everyone I saw there in the ICU was still dazed from the shock of it. Hospital staff had us line the halls. Some of the people had signs with pictures of him saying “We love you.”
We seemed to stand there a long time. I didn’t know many of the others though I could guess who many of them were. I introduced myself to some I had heard the most about. I regretted that I somehow forgot my rosary. I always have one in my pocket but I didn’t remember today. I made desultory conversation with an interesting young person next to me whom I had met several times before. It was awkward or I worried it was.
I repeated “Jesus Maria” in my head as I tried not to let my emotions or my social anxiety overwhelm me.
In High School my best friend, Philip, was killed in a car accident. I remembered vividly watching his mother, Helen, go stoically through all of the necessary procedures. Afterwards I tried to stay close to her through the varying stages of her grief and mine.
A lot of feelings from my past came up standing there because I felt so terrible for the family. I remembered the last time I would ever see my first husband’s face after he had died in a car crash when he was twenty-eight. I had to ask my dad and brother to remove me so the funeral home people could close his casket because I just couldn’t leave Marc’s side. Standing and waiting today I kept thinking of the trauma, shock and horror this family must feel in these last moments with the body. I felt those feelings of horror and bottomless darkness from my past that I wish I could save them from.
I had to sort things out. I didn’t want to avoid my own grief for this person now. But I also needed to be present and remind myself that this is not my trauma. This is their trauma. This is their day, his day. I wanted to pray and to be there. I wanted to grieve this person and not my other people I’ve lost. I so wanted to strengthen the family and love them. As someone who is all full of trauma and loss myself this was hard to do.
Staff handed out water bottles and tissue. I noticed I was crying a little bit. That’s a sign of healing for me because I did not have that ability for many years. It is a recent development.
Finally the hospital bed carrying our person was pushed between the two lines of people from the other end of the hall. Everyone stood in silence. After the family had passed we followed. He was propped up on pillows. His eyes had some kind of shiny stuff on his closed eyelids. There was a ventilator tube coming out of his mouth. There was the face I loved, empty of expression now. He didn’t even look that empty when he was sleeping. He was definitely gone. Still I mentally told him I loved him knowing he could spiritually hear. I asked him to look after his family.
Finally we came to an open door leading to a kind of dock. A chaplain invited us to pray together which we all did. A hospital staff member of some kind read out some words of gratitude for what the family was about to do, and a blessing. She cried while she did it. The mother of our person spoke to him for a while some loving words. I couldn’t hear them exactly. And he was sent out.
I saw a beloved grandmother in the hall and hugged her and the weeping grandfather too.
The parents hugged me. I so wanted to be a comfort to them. I think I was. It seemed that way.
We were all guided back out to the lobby where I joined my step mom and daughter who had come with me, having known him too. I had stood with the family and close friends. My step mom had pushed me over there. I hadn’t been sure I should be so forward but it worked out.
I thought the honor walk was beautiful. It was fitting. It was just like the family, who are so loving, to do this.
I will think about it for a long time.
This is not my trauma but the family’s. However, I grieve. I do grieve terribly.
Now that the family has openly shared about Zane’s death I can too. I was his care giver since he was 16. I loved him – I do love him- very much.
Bethany Hang Out 