I realized two important things recently.
When I visited Jeff Hillard’s Cincinnati Authors class to talk about Dancing in Heaven on May 1st, one of the adult or non-traditional students said, “My daughter’s friend has a sister who is disabled and in a wheel chair. I always felt a little sorry that my daughter’s friend wasn’t able to share the mother-daughter experiences that my daughter and I were able to share. Her mother was always too busy taking care of the disabled sister.” She made the comment to point out that Dancing in Heaven showed her another side, a different side, of having a disabled sibling or daughter.
I smiled, but made no comment in reply, because she hit a very sensitive and very deep nail on the head. And I think that is one of the things I’ve grieved for with the loss of my mother the most—the hope I had, the possibility I had, of having some of those special moments with my mother. That’s one of the things I realized recently. And perhaps the word “realized” isn’t the best choice. I always knew that Mom wasn’t able to do the some of the things with me that my friends’ parents were able to do, or that I had wished she were able to do. “Faced my denial” might be more accurate.
I remember only three shopping trips with my mother. One was to help her buy a dress to wear to my grandmother’s funeral in 1984. Another was to the drug store in 2012 so she could buy all the over-the-counter rememdies for her stomach pain that we all attributed to stress but was actually cancer. And a time when I was a young teenager that she wanted to walk to the grocery store, not thinking in advance that we’d have to bring all the groceries we bought back home. We weren’t able to carry them all between the two of us, so we decided to push the grocery cart filled with bags home. We hadn’t crossed the first street when Mom tipped the grocery cart over as she bumped it down the curb. The groceries spilled out into the street. I laughed so hard I was afraid I was going to wet my pants.
I have often gone shopping with my daughter Anna. It is one of my favorite things to do.
I went out to lunch with my mother once, I think, although I can’t really remember it well. Then my sister and I took her out to lunch for her last birthday in May of 2012. I remember that one a lot better.
I have taken all my sons and my daughter out to lunch.
You might say I even have a passion for creating those mother-daughter and even mother-son experiences.
But while doing all this self-revelation recently, I can’t help but remember all the things my mother taught me. Or the things she made for me. Or how she patiently ripped out and fixed badly sewn or completely wrong seams in my fashion creations. Or the late-night conversations at her kitchen table on the overnight visits. Or how she was always there when I really needed her the most, if not in person, then certainly across the telephone wire. The time when she and Dad came to my dorm room with a computer when mine died the night before a test. Or when she and Dad came to my hospital room the day I had neck surgery, or the day I had Michael. Or the way she hand-wrung out the wet baby clothes in a washer full of water that wouldn’t drain when she came to help me at home.
Some people have mothers who are alcoholics, or drug addicts, or too self-interested to bother. Some people have mothers who die young. Some have mothers who leave.
No. My mother didn’t have a lot of time for lunches and shopping with me. But in every way that she could be, she was a mother to me. She was a very good mother to me.
And I miss her so.
If your mother is still with you, I hope you are able to enjoy her each and every day. If not, I hope you can remember her kindly for what she was able to give you under whatever circumstances or challenges she faced. And if you are a mother, I wish you a very Happy Mother’s Day.
It always amazes me when I see something, learn something, understand something, only much later after the fact.
It’s like the postcard from Peru I got this week from our new daughter-in-law. “Enjoying everything this beautiful country has to offer,” Cori wrote. “Can’t wait to share our travel stories.” Well, we already knew all that; heard the stories; saw the photos. Matthew and Cori went to Peru over three months ago in August. I don’t know where this little postcard has traveled since then—maybe it’s been riding along in the bottom of a mail carrier’s bag all this time.
This morning I had a revelation about my mother. My mind was catching phrases from the television playing in the background. I was listening for the road conditions as we were in the middle of a predicted winter storm. It must have been some kind of a commercial about health professionals. They were listing things they were there for, or the things that people told them. The phrase that caught my attention was “When someone finds a lump. . .”
I’ve written about the last good day I had with my mom when I put up her little Christmas tree last year. What I may not have fully explained was that in the preceding days and even weeks, she and I had a somewhat adversarial relationship. She was determined to continue to care for Dad as she always had, but her strength and health were continuing to decline. I was trying to convince her to make some changes —add more home health aide coverage, get Dad an indwelling catheter so she wouldn’t have to do this tiring task three times a day, let Dad stay in his bed more, use the lift—because I was worried about both her and my dad.
The last week of November I changed my approach. I threw in the towel. I told her I wasn’t going to try to solve her problems, but told her that when she was ready to make a change all she had to do was tell me and I would help her make it happen. So when she seemed different, more at peace, calmer, on that last Friday in November, I attributed it to my stepping back. In fact, I have remembered that day fondly—my mom sitting in her chair watching me decorate her house, being agreeable about it all, which frankly surprised me at the time.
Last year when my sister called me a few days later, on the morning of that first Sunday in December, to say Mom was ready to get medical help and she wanted to go to the hospital, and I returned to their house, before we called 911 and started the sequence of events that led to her diagnosis of cancer, Mom told me something that came back to me this morning like a punch in the stomach. She had gotten cold feet about going to the hospital by the time I got there a half hour after the phone call. I was trying to convince her it was the right thing to do. I think she was afraid they would want to do tests and she wouldn’t want to be away from Dad that long. I think she was afraid she might find out something really bad was wrong with her. She was lying on the sofa and I was sitting on the edge beside her. I gave her the phone and was trying to convince her to dial 911. I was trying to reassure her by telling her it was probably nothing critical and that maybe she would finally be able to get some medicine that worked better than her pantry full of over-the-counter remedies she had been ingesting.
Mom responded to my assurances by saying, “But, you don’t know everything.”
“What don’t I know?”
“A couple of days ago, I found some lumps here in my stomach,” she said as she touched her hand to her belly.
That sealed her fate, as far as I was concerned. There was no way I was not going to take her to a doctor somehow with that knowledge. She had wanted to go to the hospital. She had wanted to go in an ambulance because she wanted them to help her get there and get in. I called 911.
What I realized this morning when I heard the words, “When someone finds a lump,” was that Mom had found a lump “a couple of days” before Sunday. She probably had already found those lumps when I was there on Friday playing Christmas music and putting up her Christmas tree. I think she knew. And I think she wanted to have a good day. No, even more, even harder to bear, is that I think she wanted me to have a good day.
So I had a moment this morning. And I’m having another one as I try to relay this to you.
Some days I really miss my mother.
I love you all for the support and kind words you always have to share. Have you ever found something out or understood something long after the fact?
I broke one of my cardinal rules today and played Christmas music before Thanksgiving. But I needed the music because I was going to decorate a Christmas tree. My mom’s little Christmas tree to be exact. The little tree traveled with us to Mom’s assisted living apartment, and then later I packed it up and moved it home with me where it has remained boxed up in the basement until today. I look forward to the year I can put it up without tears again. This post is copied from my one last year about Mom’s Christmas tree.
I spent most of the day at my parents’ yesterday. Holidays are so hard for people who are suffering in some way. I woke up thinking that I needed to hang the strand of blinking red bell lights along Mom’s living room mantle. My sister Annie loved watching the red blinking lights, and because of that my mother loved them too. Or because Mom loved them, Annie did. We never were quite sure which way that actually went. We hung the bells up the first two Christmases after Annie was gone, but I think it was too much trouble for Mom to do last year.
Armed with blank Christmas cards and a package of peppermints, I left for my parents house mid-morning. Life has been so hard for Mom over the past months, years really, that she is worn out and doesn’t want to do one thing extra. I suspected if I asked her if she wanted me to get out her Christmas decorations she would say “No.” So I didn’t ask. I went for the bells.
I went down the hall and into Annie’s room where Mom keeps the Christmas decorations in the large closet.
While I was looking for the bells, I found a wreath. I took it out and hung it on the front door.
“I usually put the wreath my sister gave me on the front door,” Mom said from her chair near the far corner of the living room where she sat and ate her toast and drank her tea. “It’s on the glass porch.” I moved the wreath I’d hung to the back door and went out on the porch for the wreath my aunt had made.
I decided we needed Christmas music so I sorted through their collection of vinyl albums for the Christmas ones and selected one I remembered from my youth, the album cover completely torn through on one side.
“I don’t want to get the tree out today,” Mom said as I worked.
In one box I found a Santa and Mrs. Claus that a good friend of hers had made years ago. I set them together on top of the china cabinet.
Back and forth to Annie’s room I went bringing out decorations one or two at a time.
I put the snowman and woman on the window sill beside the card table, Dad’s “office,” where he sits and “works” or plays ball with a family member or a home health aide.
I found a centerpiece for Mom’s coffee table, four miniature nutcrackers for the kitchen window sill, and a snow globe that I think Dad might enjoy.
At the bottom of a big box, in a bag, I found the red bells that Annie loved.
I hung them along the mantle, securing them with tape. Then I cleared the nick nacks off the mantle and set out the manger scene that used to be my grandmother’s.
Christmas carols playing in the background, I stood still for a minute and looked around the room. Mom used to put a small tree on a table in front of the picture window in the living room, but Dad sits there now and the table is full of pencils, blocks of wood, books, cups of coins, and other things we use to try to entertain or occupy him.
“You know, you could put the little tree on that table beside you, Mom,” I said. “It wouldn’t have to be in front of the window.”
“I could put it on that table,” Mom said and pointed across the room to the end table beside the lift recliner that we got for Dad, but that he rarely sits in anymore. It is simply too hard to get him in it, and he slides out of position if he sits there too long.
I shifted the recliner away from the sofa and moved the small table between the two so that it would be closer to the electrical outlet. Then I got the little white tree from a box on the shelf in Annie’s closet, and I set it up on the table.
“I don’t want to do the ornaments today,” Mom said.
I went back into Annie’s old bedroom and found a crocheted tree skirt.
“My sister made that for me, too” Mom said.
I arranged the skirt around the bottom and plugged the tree in. It’s tiny colored lights added a warm glow to the room.
Annie’s blinking bells strung along the mantle lent a cheerful twinkle to the room.
I left the ornaments in the three small boxes on the bed in Annie’s room.
Mom can decorate the tree later.
When I walk around the lake at the Voice of America Park with Arthur, as I often do, I get about to the opposite end of the lake before my thoughts inevitably turn to Mom or Dad or both. Something about walking, or driving in a car, does that to me.
I never anticipated how difficult and painful it would be to lose my parents.
It’s been nearly nine months since they died and the pain of loss, when it hits, nearly knocks me off my feet. I had hoped to be better by now. And I suppose I am better if you consider that a lot of the time, most of the time, I am fine with no apparent pain and no tears. But the tears do still come, and often with surprise. I’m learning a lot about grief and loss.
The permanency of it all is starting to sink in and may be the reason I’ve backslid some on my grieving.
“I don’t know what I’m going to do when I can’t talk to you anymore,” I told my mom leaning over her Hospice bed with tears streaming down my face. “I’ll have to find another way to talk to you.”
“Yes. You will,” she answered.
December and the beginning of January were a blur of activities. Hospitalizations, legal paperwork, nursing home visits. Camping out on the hard hospital lobby sofa. Speech therapists telling me Dad wasn’t swallowing well enough to take anything orally. Questions. What now? Small notebooks with phone numbers. Larger notebooks with pertinent information that expanded daily. A couple baskets of Dad’s meager possessions labelled with his name. Dad’s first visit to the nursing home dining room. My parents’ bedroom with piles of clothes on the floor from frantic searches and chaotic packing. A cloth patch I hand-sewed on an afghan to label with Mom’s name. Dad’s visit to see Mom at Hospice. Wheeling my overnight suitcase through an icy parking lot.
By the time there was time to talk, Mom was under heavy medication for pain and nausea. And there wasn’t time.
So I don’t know what she thought about everything that was happening.
“I don’t know how you girls are doing all of this,” she said in one lucid moment.
“I’m going to be in that group of people who beat this,” she said shortly after her bleak diagnosis of pancreatic cancer, her indomitable spirit rising again.
“Sometimes you’re better off just getting through things quickly,” she told me as I drove her home from a doctor’s visit when her blood pressure was uncontrollably high.
We got through it quickly. But somehow I don’t feel better off.
I miss my mom.
I have several things I could post about: our trip to Buffalo for our son’s wedding, Lumenocity photos and video. I have a lot of photographs I could share from my 365 project and scenes from Buffalo. And I’ve been debating back and forth for a while now whether or not to share what has really been on my mind first thing in the mornings the past two days. I think I will.
On April 10th I received a message on my Facebook author page from someone named Karen. She wrote, “I just finished reading your book last night and I cried and cried….All through the book I kept thinking, ‘I wish I could talk to her”. I have a few things in common with you. I have a daughter who is 14 and has severe Cerebral Palsy.'”
It touched my heart that she reached out to me. Meeting people like Karen has been the greatest reward of publishing Dancing in Heaven. We corresponded a few times. I explored her Facebook page where she often posted updates about and photos of her daughter Jessica.
On Sunday night or Monday, I read a post from Karen that came across my news feed. She wrote, “I don’t know how to go on without her. She was my life. Please, Jessica, help me.” I feared the worst and my fears were confirmed when I read through Karen’s news feed and saw message after message of condolence.
Jessie died Sunday morning. I read her obituary that Karen had posted.
I struggle with the message I’m trying to give you. But it’s something along the lines of what I believe to be a vast difference when a special needs child dies. There is a bond there that has been strengthened and tested in fire. There are so many aspects to it that most people never have to think about. And sadly, I am not finding the words to adequately explain.
I always feared that others would only see Annie’s disabilities and not her value. That’s why I wrote Dancing in Heaven. I always wondered if others would focus on the care giving my parents gave Annie, and perhaps even think in some corner of their mind, ill-illuminated or not, that perhaps there was a sense of relief that the care giving was no longer required.
I don’t believe you will find this to be true for any parent who loves their special child.
My heart goes out to Karen and her family. And the primal anguish in her words reminds me of what my parents must have felt when Annie died, four years ago now, on Friday.
Dance in heaven, precious ones.
Dear friends, acquaintances, readers, and unconcerned passers-by,
I am sending out this request for guest bloggers who would like to share a memory and write on the topic of mother’s wisdom. Now that Mom is gone, when her little pieces of wisdom come to mind I greet them like a precious jewel. I am planning on sharing those little jewels with you as they drop into my hands. But I realized that we all have pieces of wisdom from our mothers. I invite you to share one here on my blog. I hope to hear from you, whenever, at email@example.com.
“Things don’t always turn out like you think they’re going to.”
Mom said that to me at some point during our journey through her last six weeks. I don’t remember what comment I made that provoked it, but I’m sure it was one of my attempts at being upbeat and optimistic about her move to the assisted living facility. Or maybe it was a fore-shadowing of her dip in the whirlpool at the new facility that I thought would be heaven after all the years she wasn’t able to get in or out of the bathtub at home. That turned out to be incredibly uncomfortable, a test of fortitude and endurance actually, when Mom had to sit (for a very long time according to her) on a straight-backed metal seat that got lowered into the tub. “I’m not going to do that again,” she said,” unless they can get some kind of a cushion for me.”
Some things just don’t turn out as good as you think they’re going to.
I don’t know what experiences in her life drove that thought home but I imagine the day-to-day care of Annie; Mom’s attempts to improve the quality of life for her mother who had dementia; or Mom’s constant battle to take care of Dad at home as he continued to decline with Alzheimer’s provided many opportunities for failed attempts and things that didn’t turn out as good as Mom had hoped.
It’s not a profound statement really, or likely even one that we haven’t already learned on our own. But sometimes, some of us, need to be reminded, I guess.
Mark was playing golf this morning. He doesn’t get out that often. We used to play occasionally with his parents. I rode in the cart with his mother and he with his father. I enjoyed that well enough. His mom wasn’t considerably better than I was and it wasn’t overly taxing for me. I can’t say the same for later attempts to play in a foursome with our sons or other people who didn’t mind devoting hours to the game week-after-week and year-after-year in order to improve their skills.
I really like the idea of playing golf with Mark and some friends. I imagine it might be a life-style I could enjoy—a weekly outing on the golf course on 70 degree, blue-sky, breezy days. Laughter, camaraderie, the challenge and the feeling that comes when the ball soars off the tee and flies out over the green straight ahead dropping into an excellent chipping or putting position (I really have to stretch my imagination on that one.)
In my weaker moments I sometimes forget the frustration and utter humiliation of some of my later attempts at golfing. My mind conveniently refuses to recall that the last time I played nine holes I quit after only three, picking up my ball, jamming my 5-iron into the bag, and parking myself in the cart while uttering all kinds of best-forgotten comments. I think maybe golfing would be a fun thing that Mark and I could enjoy. Sometimes I think, maybe I’ll try again.
At times like those when my imagination threatens to delude me it is good to remember the wise words of my mother, “Things don’t always turn out like you think they’re going to.”
Undoubtedly so. Thanks, Mom.
In the short and cold days of January I drive to Hospice where spots of packed down and slippery snow coat the parking lot. I pull my loaded overnight case with wheels out of the trunk and settle my tote bag on top. It contains my iPad, a book to read, Werther’s original candy, some Dove chocolates, and important papers that include the Healthcare Power of Attorney documents for both my Mom and my Dad that I have been informed I need to have with me always. The tote bag also holds a small purse that I am never ever without. It contains my cell phone and a small notebook I created with all the information that I need at my fingertips including phone numbers, social security numbers, doctors numbers, medicine lists, insurance card numbers, and other pertinent information.
I turn around, pulling my bag through an inch or two of snow, and move towards the door with care not to slip and fall. The man with the silver hair in the enclosed golf cart pulls up beside me and offers me a ride. Although I accepted one the last time, today I decide it is just as easy to keep walking than to lug my suitcase into the cart and back out again for such a short distance.
I sign in at the Hospice front desk and make my way down the halls to my mom’s room with my suitcase in tow. My sister K. has packed her things back in her bag and is getting ready to go home. The air mattress she brought, after we determined the chair that pulled out into a hard bed was beyond hope even with the addition of a foam pad, is leaned on its end against the wall in the corner behind the recliner. K. was right that it fits on the floor between the two chairs in the room, but just barely.
I remove my wet boots and place them behind the door where they will make a small puddle that I will clean up later. Mom is awake and we all talk for a few minutes while I remove my hat and coat and get my slippers out of my suitcase. K. and I keep our spirits up for Mom and our tone has an element of celebration to it. We are all here together chatting. We are family and we need each other.
K. goes over the highlights of her 24 hours with Mom and hands me the stenographer’s notebook with green lined pages that we keep a running journal in. She puts her coat on and leaves, pulling her overnight bag behind her.
Mom dozes off.
I settle into the recliner and read K.’s notes from yesterday:
Lunch: 1/4 C of tea
3 small pieces of turkey
3 small bites of sweet potatoes
1 sip of milk
3 oz of vanilla milkshake
Supper: 3 spoons of chicken and noodle soup with crackers
10:00 p.m. We had to wake her up for her meds. She was very groggy. We used applesauce to make it easier for her to swallow.
4:30 a.m. Mom woke up and went to the bathroom alone. She was in pain when she got back to bed. We got an I.V. for the pain.
8:30 a.m. Breakfast. Very groggy—couldn’t focus on eating. She took 1 bite of eggs by herself. I gave her a few sips of tea. I gave her one small bite of eggs, a tiny bite of bacon, and tiny bite of toast. I put the tray to the side—
*Meds are being given with vanilla pudding now (or apple sauce).
*She can have more pain medicine at 2:10
*Ask about the IV. How does it affect grogginess?
I try to rest with my feet elevated. If tonight goes like the previous ones, I will be up a lot helping Mom to the bathroom and trekking down the hall and through the sprawling building to the snack area where I can warm up Mom’s heating pads that seem to bring her comfort.
I go through the routine of watching Mom not eat, and recording it, watching the clock and asking for her medicines on time even if she is sleeping through it. We have learned from experience that we don’t want to delay the meds. I have a few short conversations with Mom when she rouses, primarily about the minutiae of her daily life here.
“I have busy days here,” she tells me from her hospital bed from which she only rises to use the bathroom.
I do the best I can to keep her comfortable and anticipate her needs. I sleep when I can. I talk to the doctor and nurses when they come and tell me again that Mom is on a steady decline. They don’t tell me anything I can’t see for myself.
I keep detailed notes for my sisters all the while.
Sometime before noon my sister comes to replace me. I have returned the air mattress, that I wrestled into place on the floor last night, back to its spot against the wall behind the chair. I have returned my things to my bags. I pull on my hat, coat, and boots; kiss Mom good-bye and leave with my suitcase in tow.
Five months later I watch for my sister K. to arrive for an overnight visit. I’ll show her how I arranged Mom and Dad’s china in the cabinet, and the display I created with Dad’s flag and army badges and metals. I’ll show her the shadow box where I arranged my share of Mom’s costume jewelry pins that Dad always gave her. I’ll show her the scrapbooks I’ve finished and the photos I’ve still to scan.
She arrives, parks her car, pulls out her overnight bag and enters our house, suitcase in tow.
We are family.
We need each other.