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Friday, May 1, 2015

One to Make You Cry

"I like the ones where you make me cry."

Leslie always told me that the blog posts I wrote that made her cry were her favorites.  But Leslie liked a good cry now and again.  Maybe most women do.  "Terms of Endearment", "Steel Magnolias", "Fried Green Tomatoes"...there's a reason why those movies get watched, though I'll never know because I refuse to watch them.  In general I always told Leslie that sad blogs are harder to write because when I write them, I relive what I'm writing...and when I relive something sad or stressful or angry...I get sad and stressed out and pissed off accordingly. 

But Leslie loved those posts, and despite the fact that I typically write upbeat, cheerful, or amusing takes on even the sad stuff, occasionally I slip a tear jerker in there.  And those would always be my wife's favorites. 

So this one's for you, baby...one to make you cry...your favorite kind.

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We learned that Leslie was dying about a week before she passed.  The physician's assistant took me out into the hall as Leslie labored for breath in the room and said, "Has anyone ever talked to you about how to plan for your wife's passing?"  And I confessed that nobody had, and she told me the doctor had insisted nobody bring it up to Leslie or her family.  That little tidbit is sitting in my back pocket.  I need to really process what it means.  I remember Googling, "Doctor's legal obligation to provide news to family in terminal cases" and found nothing to suggest that the doctor's approach was anything other than a hotly contested talking point among health care professionals. 

Part of me believes that this approach is exactly what Leslie wanted.  She wanted the hope.  She wanted to believe that there was a fight to win, not to be told to give up...that hope was lost.

But they talked to me.  And knowing is exactly what I needed.  It helped me prepare...myself...my family.  Some part of me had known for months.  Some part of me had been secretly mourning her "metastatic" diagnosis since the day I'd researched it.  But that part of me had kept my fears from Leslie too.  How could I blame the doctor for doing the same?

Still...back pocket.

This post could be so big and so long, so I'm going to try to steer clear of how we talked to Emma.  I'm going to try to steer clear of the final few days frenetic fight to reclaim lost ground.  Let's just fast forward to Leslie's final few days among us.  I'll cover our talk with Emma at another time.  It's important for me to tell THIS story now, "urgent" you could say.

But before we fast forward to Leslie's last days, I want to tell you about Lily's holy communion.  One of the many things Leslie advocated for on behalf of Lily was that she receive her first holy communion with the other kids her age.  To that end she worked with the school and our wrap service to incorporate lessons and activities that furthered Lily's understanding of God and communion and the Catholic church.  The master plan was to have her prepared for a private ceremony (if not inclusion with the rest of her typically developing peers) by May 2nd, when the other 9 year-olds would receive their first holy communions.

When the staff approached me I asked them what the time-frame was.  They agreed that "best case scenario" the clot (this is the first you're hearing about the clot, isn't it?  They found a clot that was making it still harder for Leslie to breathe) would respond quickly to medication, Leslie's breathing would improve, and she could have several months.  "Worst case scenario, she could go at any time."

I was floored.  Any time?  I'd been watching Leslie's ragged breathing for weeks.  The staff at the hospital was telling me that this sort of breathing was the beginning of the end.  They asked if they should tell Leslie.  I knew Leslie was still hoping to have chemo Wednesday of the following week.  I knew she was still fighting; she was still clinging to hope.  I also knew she wouldn't want to know.  I told them to approach it with her very generally.

"What are your wishes if the clot doesn't respond to treatment?" ...that sort of thing.  Feel her out.  See if some part of her wanted to know.  And IF she did, to start the dialogue.  They did.  She did.

Leslie texted me, "They've talked a bit with me.  I know...do you think it's best to have Lily here?"  I replied no and that I'd be there in twenty minutes.  I told her that my parents knew, that I'd had to tell them in order for them to understand why they might be needed more even that we'd already been leaning on them.

And then we talked and we cried and I learned that although Leslie knew...she didn't know how long.  And she asked me if I knew.  And I said I did.  And I asked her if she wanted to know and she looked at me and said so hopefully, "I just want to see Emma get married," and I looked at her and my eyes filled with tears and I shook my head no, and she broke down then.

"Then I want to see her graduate," and I couldn't crush her hopes again though I'd already lost mine.

I started making plans to push up Lily's first holy communion only after we entered hospice-in-home care that Saturday night.  I told Leslie we were going to bump the communion up to Tuesday.  Leslie was upset about it, but was having trouble explaining why.  Her breathing was so ragged she would gasp for breath after each word, and her writing was illegible.  We finally realized her issue was that she was afraid her mother was going to be upset that I had a friend of hers shopping for communion dresses.  She had forgotten that her mother had already agreed it was okay.

After two of the most desperate, stressful, and emotional nights of my life, I was forced to concede that I couldn't care for Leslie the way she needed.  She was transported to hospice on Monday morning.  Almost immediately she was more comfortable.  People started to visit.  Leslie's friend Jen brought Lily's communion dress choices into the room.  Leslie and her mother and Emma and I helped to pick the one we liked best.  The plan was on for 4:00 the following day.  We'd at least get this communion done.  At least THIS.

It was a great day.  So many friends came to visit.  We Skyped some friends in Canada.  Lily visited with Emma and when they left, I prompted Lily to say good bye to her mother, and Lily instead said, "I love you mommy," so clearly that Leslie's already labored breathing caught in her throat and she began to cry.  And then the girls were gone, and the friends filed out, and Leslie, whose eyelids were drooping and who was startling herself awake repeatedly at last fell asleep at our (her sister and I) urging.  I kissed her goodnight and goodbye and went home to be with the girls.  Her younger sister and her husband spent the night in the room with her. 
At the end, Leslie didn't want her picture taken.  She'd lost 50 pounds, she hated seeing herself.
This is probably the last picture taken of Leslie while she lived.  Emma, holding her hand, and taking
a picture of her hand...because taking a picture of her hand was allowed.

The following day when I arrived at the hospice, I found that Leslie had deteriorated to the extent that I frantically called the priest and begged him to move the communion up to 1:00.  It was the earliest he could make it.  He would be just finishing with a funeral then.  I texted Lily's teacher, who was going to get her changed into her communion dress and bring her to the hospice, "I think we need to make communion happen at 1:00.  Our girl is fading.  Can you still bring her?"  She agreed.

Leslie never woke up.  We gathered around her as we waited for Lily and the priest and her older sister, who was flying in from Mississippi, milling in and out of her room impatiently, giving Emma a break to do a puzzle in the great room.  The nurse came into the great room, "I think you should come back to the room right now."  We ran.

We sat on her bed with her and held her hand and told her how much we loved her and how much she meant to us and how unfair it all was and how much we'd miss her, but that we would be okay.  That she could let go if she needed to.  We told her that she was a fighter...no, a warrior...to have fought so bravely for so long.  And Emma held her hand and I held another, and we smoothed the hair back from her face and kissed her forehead breathing desperately, "I love you so much" into her ears, praying that she could hear us, while her breathing came in quick shallow lurches.  And then...she passed.  She was there and then she was not, and at first I wasn't certain...I felt for her pulse and there was nothing there and I kissed her and told her again how much I loved her and said goodbye and told Emma to do the same.  And then I told Emma that her mommy was gone.

And we all said our goodbyes, and the nurse came into the room, checking Leslie's pulse and pronouncing her dead at...10:43?  10:48?  Sometime around then.  I wanted to say the exact time for posterity, but I can't remember now and it seems so...unimportant.  Except that it wasn't 1:00.  And I told the nurse, "We need to move everyone into the great room instead."  She nodded easy agreement

We stayed with Leslie and talked to her as if she was still there and not just an empty shell.  If she couldn't make the communion physically, then she'd make it in spirit; the best seat in the house, we decided, looking down from above instead of in bed behind partially closed eyes.  And the priest arrived and prayed over Leslie and opened a book and read passages from it.  I remember feeling comforted by them.  Someone at least knew what to do.  Knew the words to say.  And then Leslie's older sister arrived.  She never had a chance to say goodbye but she sat with Leslie just as we had.

When Lily got there...dressed in white like the wedding day Leslie would never see, I took her to her mother.  And she pulled back a little, but I prompted her to say she loved her...and she said, "I love you mommy" and I prompted her to say goodbye and she said, "goodbye mommy" and then she walked from the room into the great room where people had started to gather, seated in various chairs and on couches, and the priest began the mass for Lily's communion.

And we got to the part in the Mass where the priest says "peace be with you" and we all turned to each other and shared the peace, and we all kissed and hugged and whispered "peace be with you" and "I love you" to our friends and family and Emma said, "I'll be right back, daddy."

I must have looked confused, but I was so adrift I just nodded and she hurried away.  A minute later she returned and I know I looked confused because I remember that part as I half smiled at her and said, "Where'd you go?"

And Emma looked up at me and said, "I went to share the peace with mommy." And I hugged her, barely holding myself together then in the face of her maturity and strength, the tears streaming from my face.  I hugged her so tightly and said fiercely, "You're such a good girl, Emma.  I love you so much."  And I thought to myself, "This girl is going to be okay."

And this is where I stop and take a long, ragged breath.  I'm sorry to everyone I didn't invite to Lily's first holy communion.  I'm not Catholic.  I didn't even know what I was supposed to do.  This was a big deal for Lily.  A big day.  And she looked beautiful, and she was soooo good.  And she ate the wafer and almost drank the wine.  And the priest was so kind and supportive and genuine.  It should have been such a day of celebration.  But my wife had died, her mother, Emma's mother...and so after the communion I took the pictures that everyone took of Lily in her communion dress and I stored them away.  One thing at a time I told myself.  And that one thing at that one time was the death of my wife, and everything that I needed to do following that.  And please, this isn't something I need forgiveness for, or to be told not to worry about it or whatever.  I just feel it and so I'm saying it.  I'm fine.  But I'm still sorry.  Sorry for the things that I could control, and sorrier for those I couldn't.


We took pictures in the great room with Lily in her dress as they made arrangements for Leslie in her room.  They took Lily away down the hall.  Emma said goodbye again to Leslie and went with Lily.  And we cleaned out Leslie's room and I turned off the music that was playing on the radio.  What had become her favorite station, a christian station. 


my dad escorting Emma and Lily
I asked if I should take off Leslie's wedding ring and things or if the funeral home people would handle it and the nurse told me that it was up to me, that it was safe in their hands.  "Do you want to take it now," she asked.

I shook my head and paused, not trusting myself to speak at first, "When I put it on her finger, I meant it to stay there," I said, my voice cracking, crying again.

"It's okay," she said supportively, "She's in good hands.  They can take care of it for you if that's what you want."  I nodded gratefully to her.

I said my final goodbye to Leslie.  I talked to her for a little bit.  I told her our story wasn't supposed to end this way.  I told her she didn't deserve the ending she got.  I told her I loved her.  I told her I would take care of our children.  And then I said goodbye for the last time even though I felt like there was a cable tied from my heart to hers right in that room, keeping me there, stuck fast and immobile.  I turned my back and walked out because I knew I could just as easily see myself curling in a ball at her feet and staying all night but I had things I needed to do.  And little people who needed me with them.

Okay...this concludes the sad...at least for now.  I hope it was your favorite, Leslie, I always knew that if it made me cry to write it, it would make you bawl.  And I cried.  Even the editing made me cry.  "I like the ones where you make me cry."  This one's for you then.

The reason I felt like I had to tell this story now...though all the happy memory stories have really been such a balm to my grief, is that this weekend, Sunday, Lily's communion class will officially go through their first holy communions.  And proud parents will post their children's pictures on facebook and elsewhere with captions like "So proud of our big girl" and "Happy First Holy Communion, Baby!"  And I wanted to post Lily's Facebook pictures from her communion around the same time so that friends and family could celebrate her communion now too and tell her how proud we are of her and that we don't have to focus so much on her mother's death, at least not right now.  Right now is for her. 

She was amazing.  She sat so still and quietly and looked so beautiful.  And she was so attentive to Father John.  Thank you everyone who helped make it happen, and on such short notice.  It's only been three weeks since you lost your mother, Lily, and it still feels too soon, but not congratulating you now would make it too late, and you deserve a chance to enjoy your accomplishment.  This big step was made possible by lots of people who love you working to put you in a place to enjoy success.  But it was also made possible by you.  I love you Lily.  Happy First Holy Communion.  So proud of our big girl!

getting one of Lily's famous open mouthed smooches

veil plus Lily plus open flame...

pretend it's a mcnugget

love this picture
Love this picture more though...





26 comments:

  1. No words...there must be words...other than wondering if Kleenex is going to become a proud sponsor of your posts. The photos are beautiful, as is the story in its own heartbreaking way.

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  2. Oh, Jim. So much love coming your way.

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  3. You and Leslie created two amazing little humans. Love to all of you.

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  4. Congratulations Lily. You are so beautiful! Emma, you are an amazing young lady. Jim, I am so sorry... Leslie was correct. Where are the tissues? Much love and hope of peace and comfort to you and your family.

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  5. Sobbing. Love to you all.

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  6. Oh, my heart. Thanks for the "trigger warning" in the title. I didn't want to read this one… I went back first and caught up on the last few posts I missed, and I love them all. There's so many things I could say - I am pissed that you lost Leslie this way, amazed by your ability to remember and write so eloquently about her, I grieve for you and the girls, and selfishly fear for the "what ifs" for my own family - but I can't find any words now because then I DID read this one and the crying takes over. And, Lily looks beautiful, it's so good you are able to post the pictures. Love to all of you.

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  7. You do realize you just wrote a short "Terms of Endearment." You are blessed to have true love in your life.

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  8. Beautiful, and definitely one to make us cry. I'm so very sorry you lost your wonderful Leslie far too soon. Your love for her and your girls shines through. And Lily looks absolutely radiantly beautiful in her communion gown. Hugs and love.

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  9. Hugs to you and your family. Your daughter is beautiful. I'm so sorry for your loss.

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  10. Leslie would have LOVED this post, Jim. Not just because it would have made her cry but because it would also make her heart swell with the love you expressed so beautifully. And she would beam with pride at how amazing BOTH your children are. But, mostly, the love... so.much.love. I can't stop crying.

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  11. Oh Jim. I want to write a touching comment in honor of your beautiful words but I'm crying too hard.

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  12. with tears streaming down my face as i try to type, i'm here. i'm just here. and you are doing so very much right in the face of such unthinkable horror. hold tight to each other. love.

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  13. with tears streaming down my face as i try to type, i'm here. i'm just here. and you are doing so very much right in the face of such unthinkable horror. hold tight to each other. love.

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  14. That was beautiful and heartbreaking, Jim.

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  15. Oh, sweet Lily, congratulations. I don't have words. Well, just one: love.

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  16. That was beautiful. My tears are tribute. All we take with us , when we go, are the learnings and the love. Leslie's baggage train goes on for miles. I wish I had words to bring you comfort, but I think your own will do that in time. Hugs and love to you all.

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  17. She looks absolutely beautiful and thank you for sharing.

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  18. In saecula saeculorum. Bless you Lily and Emma. Thank you for sharing again Jim. One to make you sob. Love and prayers.

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  19. Thank you for sharing your story.

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  20. This was beautiful. Congratulations to Lily!
    If Leslie liked the tear jerkers, she will love this one. In hindsight, perhaps choosing to read this post on a bus filled with third graders after a field trip was an error in judgment....

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  21. The tears are flowing. This is beautiful. Thank you for sharing.

    And Congrats to Lily!

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  22. Jim, my daughter went to daycare with Lily at Mt A and I was blessed to get to know Leslie. I heard of her passing and this blog thru another previous Mt A mom. I am so sorry to hear her fight is over; she was truly a strong warrior! I'm praying for you and the girls; that God would give you grace to get through each day, that he would give you strength to get through the harder days, and that he would give you a peace that surpasses all understanding! Psalm 116 is an amazing verse to hold onto. Thanks for sharing your heart and the kids hearts thru your blog. ~Sarah~

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  23. your posts make me cry and cry
    Sending you much love - you all are very very special

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  24. No words Jim...you covered that. It was definitely the kind of post fitting for a cry. Well done.

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  25. Jim, on another blog post I asked you to identify where this story was. I had heard about it from another blogger and my heart tugged at me to find it. I see now why. I needed to read all the other entries first in order to fully appreciate this one. It is raw, almost too painful to read. I was affected by your story in a way I am rarely affected, and it is, ironically, in a process of analytical research that it happened. What a contradictory joy! In researching both those with autism and those who love those with autism within the Catholic faith tradition, I have seen many stories of struggle but none that highlight the variation of joy with sorrow in the way your story has. I read it and almost wished it was fiction. It would hurt so much to be you in this moment. The fact that you could transmit that so efficiently and effectively without losing an ounce of poignant sensitivity and humor is beyond my ability to comprehend. The best example of existential narrative writing I have ever had the pleasure to read. I believe this is even (slightly) better than Man's Search for Meaning by Viktor Frankl. Thank you, from the bottom of my heart, for sharing your journey. You didn't have to do it, but you did, and many will benefit from it. Leslie's memory will be eternally honored and remembered through it. Peace and blessings to you.

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