Tuesday, September 8, 2009

Steve's final day

Saturday night Steve wasn't feeling well, but he was certainly improved over Saturday afternoon.

When we woke at 5:30 a.m. Sunday, his congestion was much, much worse. His urine, which the day before looked like the perfect color, was suddenly clotted and brown. His throat was burning. His mouth and tongue were swollen. He felt miserable all over.

I spoke with the triage hospice nurse, who sent the on-call nurse to check on him.

When R, a nurse we really love, arrived, I knew from the look on her face that we were in trouble.

After I gave her a list of symptoms, she evaluated him and took me to the dining room to visit.

She explained that his body was shutting down. She thought he might have, at the most, seven days left.

A crisis plan was put in place immediately. We started liquid drugs for comfort and to ease breathing. Steve would require 24-hour nursing care.

All this time, Steve's breathing was increasingly difficult. The noises were terrifying.

Cooper and Katie were across the street with the Dubes for most of this activity. Our friend Gretchen was here. I called Jim and Betty (who called Uncle Jim), my sister Melane, Aunt Ami, Will, Julie, Liz, and Pastor Andy.

Susan, a friend from church, had already planned to serve communion at home. She, her husband and Sharon H. arrived for an abbreviated service.

The three from church, plus Jim, Betty and I surrounded Steve's bed. We sang and prayed and received communion. Susan gently put a few bread crumbs on Steve's tongue. She sprinkled white grape juice on his lips.

Cooper and Katie left to play at the Kniering house, giving us more time to take care of Steve and time for me to plan how to discuss the rapid changes with them.

We continued to give Steve morphine, which was helping with his breathing and agitation. He tried desperately to communicate, first trying to talk. I strained to understand him but couldn't. He tried to type but couldn't find the letters. Melane wrote the alphabet, and he pointed to letters to spell.

He said "I love you" and "thank you." I held his beautiful face in my hands and told him how very much I loved him and how so very many people loved him and that God loved him and that he was the perfect person for me.

Around the time the second nurse reported for duty at 2:30 p.m., he was starting to drift into a sleep-like state.

R, the first nurse, returned and told me that his symptoms were progressing much more rapidly than she had expected. We might have 24 or 48 hours left.

Cooper and Katie came home, and we waited for the hospice's music therapist and social worker to arrive. Pastor Andy was here, too.

I sat with our children on the sofa and told them that Daddy was very, very sick and that he was going to die soon.

Cooper cried out and bolted for his room.

Katie said, "I don't know why he's so sad. When Daddy dies, he'll still be in our hearts."

She asked, as she often does, what it looks like when you die. When I felt comfortable that she had the answers she needed, I found Cooper in his room.

The music therapist and Andy were with him. They had explained to him why I told him the news.

Cooper told me that he wanted to run away or be locked in a closet.

Before Pastor Andy left, we all gathered in the bedroom to hold hands and pray with Steve. Cooper was on Steve's left side. As Andy spoke aloud, Cooper bent over and sobbed. When we finished, he hid under my covers for a while.

Somewhere along the way I lost count of how many people came in our doors that afternoon and night.

Melane and Greg and Jim and Betty hurried over. Will arrived. Uncle Jim came in from Houston. Gretchen delayed her outgoing flight to Los Angeles. Ami, Sasha and Tara drove in from Austin. Melissa flew in from San Antonio. Walter and Jeannie appeared. Jessi arrived. Neighbors and friends streamed in and out. Food and drinks were delivered. We moved more chairs into the bedroom.

Steve couldn't talk back to us and his eyes were closed, but I just know he heard the laughter that filled the room all night long.

We were all devastated, of course, and there were many tears, but you just can't help but tell funny stories when you're talking about Steve.

At some point during the afternoon, I talked with Dr. M. She praised Steve's courage and will to live. She praised my care. She cried with me. She told me to hold his hand and deliver him to the angels.

I was snuggled next to my one true love, and I just couldn't bear to let go of his hand.

By midnight most everyone had found a place to sleep -- either here or at the Dubes. I stayed awake until about 1:30 a.m. and finally fell asleep. I woke at 2:30. Betty was up, too. She helped tuck me back in, and she went back to sleep in my bed.

I couldn't sleep. I couldn't shake the sense that the time was near.

I didn't say a word aloud, but I was talking to sweet Steve in my head. And I could hear him reply.

"It's OK to go now, sweetie," I would tell him, as I continued to clutch his right hand with my left hand. "You can let go."

And he would reply that he was ready. We did this again and again, in a special unspoken language.

His breathing was very shallow and slow. And then there was one loud breath. The hospice nurse, who was sitting in the corner of the room, hurried over and gave me a sad nod.

We woke Betty. And we sobbed.

In minutes, everyone in the house (except Cooper and Katie), plus Ami and Tara across the street, were in the room. In those first moments after Steve's death, we were all supporting one another. Steve's mom. My sister and her husband. Beloved aunt and cousin. My best girlfriend since eighth grade. The friend who introduced me to Steve. Then Steve's father and brother.

I waited until about 5:45 a.m. to wake Cooper. I didn't want to wait too much longer, fearing that as Steve's body changed in appearance, Cooper and Katie would be more frightened.

I told him that Daddy had passed away. I carried him to our bedroom, and he gave Steve's body a hug and a kiss. And again. And then he wanted to go back to bed.

I then woke Katie and gave her the news. She chose to snuggle in his bed, with me on one side and Steve's body on the other. She asked about his white skin and his stillness.

As we waited for the proclamation of death and the UT-SW staff to pick up Steve's body, I held his hand. I traced my fingers over his distinguished eyebrows over and over again. I told him again how much I love him, how I'll always love him, how I wished that we could have beaten that Damm Spot but that we all did the very best we could. I thanked him for giving me the two most amazing children.

In the silence, I kept hearing Steve sing to me. He was singing "Was There Life" by Pete Townshend. It was the first song at our wedding reception in 1994. I can't count the number of times we danced to that song in the kitchen or family room or Steve would just sing it to me out of the blue.

"Was there life before this love
Was there love before this girl I can see
Was there ever love for her before me"
...
You can count on me to stand and say
'Was there ever life before this wonderful day?' "

When Cooper woke again, Melane and I were concerned that maybe he had forgotten the events earlier. He was cheerful.

I asked if he remembered. He said yes.

"But it's OK, because Daddy believed in God and Jesus, so he's in heaven."

26 comments:

Anonymous said...

I can't imagine how hard all this has been, and it's amazing the presence of mind you've had in guiding Cooper & Katie through this. And to share it with us is a truly humbling gift. I'm touched, moved and torn apart all at once. I hope it helps to share. It helps to hear it.

We love you guys.

Mary & Kevin

Sweetest Whimsy said...

It was an absolute honor and privilege to have known Steve and to be with him during the last hours of his life. I've been replaying my own favorite "Steve stories" in my head since early Monday morning, all of which have made me smile even through the tears.

Very much love,
Melissa

Anonymous said...

I love your blog....
...I am sorry....
....your writing put me there and I some how...felt it all in a strange way.

Thanks for sharing Tyra....

I remember Steve's sarcasm...so darn funny...but it was his confidence that impressed me so.

Goodbye Steve.....rob powell

Anonymous said...

Thank you for sharing this tender and heart-wrenching story. I am so sad. But I am happy you gain strength and calm from your love with Steve.

Michael Taylor

Anonymous said...

Tyra,
Thank you for sharing all that you have over these last 20+ months. For those of us that worked with Steve at Children's, it gave us the opportunity to check on our friend and colleague. Please know that you have been and continiue to be in our prayers. It was an honor to work with Steve and call him my friend and he made some very dull meetings much more enjoyable.
Kathy Speer

Cindy said...

You're an amazing mother and wife. God has blessed you in many ways, and I'll continue praying for your family.

Robin Russell said...

So incredibly beautiful, Tyra. Your love for each other endures. Thank you for sharing with us these last sweet moments.

DogBlogger said...

Thank you, Tyra, for sharing these last hours. I'm sitting here in my cubicle wiping away tears... but they are good tears. My thoughts and prayers are still with you. Blessings

Anonymous said...

Tyra,
May you, Cooper, Katie, all who loved Steve and all who have been touched by your family see the amazing strength and love you and Steve shared through our amazing Saviour. May you feel His peace today and in the days to come.

Danette

Julie said...

Tyra,
Your strength and love are inspirational. You and your family are in my prayers, especially in the coming days and weeks. Please call me anytime if you would like to talk, (806) 783-9119 or 790-0440.
Julie Toland

Cathy Frye said...

Beautiful post, Tyra. Absolutely beautiful.

Marci said...

Thank you for sharing Steve's last beautiful day with us. I am touched and honored to read it.

Anonymous said...

Dearest Tyra,
You and Steve handled this all with so much grace and beauty. There are just not words to do justice to the love you share together.

Our love to you and the kids,
Lorrie H.

Anonymous said...

Thank you so much for sharing Steve's final hours as well as all the rest in your blog. You and Steve walked a difficult path with such grace and honor. Your love for Steve has come through on every post. May God be with you, Cooper and Katie.

Terry (Heichelheim) Altshuler

Stacey said...

Wow, that was beautiful. Thank you for sharing. I hope I am as lucky as you to find someone like Steve to spend my life with. Your relationship was truly unique and he was a special person. We will all miss him dearly.

-- Stacey

Jenny in MN said...

Tyra, thank you so much for sharing your last hours with Steve with us. As always, you have shown us how to fight the good fight and how to let go when needed. Many thanks for being such a role model in a role that no one wants.

Aline McKenzie said...

Tyra,

I haven't seen you in years and never met Steve, but you have been in my thoughts. I'm so sorry for your loss but in awe of the grace you've shown and the care you've demonstrated for keeping your children fully involved yet absolutely supported and love.

Aline

Anonymous said...

It's clear that Steve's final day was filled with love from family and friends...what a beautiful way to say goodbye. May the sweet memories of him give you comfort. Praying for you all.

Kathy Li

Anonymous said...

I met Mr. Steve in "07" in the ortho clinic. I didnt really know him that well but I knew him. And out of meeting him. I could tell he was a very sweet guy. I just want to say that im sorry for your lost. I want to say I feel your pain because I just lost my dad in june.

I also wanted to say thank you for sharing this. I had no idea he was sick. It was very brave of you to share this. It brought tears to my eyes.

God Bless you and your family. I think was a beautiful story.

drlizardw said...

Tyra,

Thank you for telling the story - it is so comforting to know what Steve's last hours were like, and comforting to know that you were supported as were Katie and Cooper. I have tears in my eyes as I write to you, and as I have the last 3 days just thinking about Steve and the many years we spent as friends. Please know you are in our thoughts and prayers.

Much love,
Liz

Anonymous said...

Your writings are a tribute to the love you shared with Steve. Although he is gone, he will never be forgotten and that is due to the diligent chronicle of your lives together during this difficult time. May God continue to bless you and your precious children during this time.

noelgross said...

Thank you for sharing Steve's final hours so vividly, Tyra. We look forward to honoring Steve's memory on Saturday.

Lorrie Irby Jackson said...

You and your children handled Steve's transition with unbelievable strength: I commend you for sharing this heartbreaking experience with the world and I remaine in awe at your clarity and your courage. Goodspeed to you all, be blessed Tyra.

aellen7 said...

Tyra,
If only I could walk across the grass and give you a great big hug. As we are deeply saddened by Steves passing, we smile knowing he has been realesed of the Damm Spot and has been welcomed to a wonderful place with our Lord. We are so apprecitive of our relationship with your family. You have taught us true strength with lifes most difficult battles. Steve will always be remembered with such Love. We Love you.
The Bradshaws

Dusty said...

My heart is aching for you and your children. I'm so sorry that you are walking this path. God Bless.

Dusty

Anonymous said...

Thank you for sharing your family's journey. It is so sad and so beautiful. Your grace is extraordinary and I'm sure Steve knew he was a blessed man. You and your children are blessed as well. Thank you.