clothing isn’t optional, only difficult

I have not done any lap swimming or water aerobics since December… until last night.

I have used a myriad of excuses to keep me from my beloved chlorine, but all of them could have been wrapped up in one simple excuse; I am so tired. Fatigue has been my most debilitating symptom of grief since my daughter died last year. The debilitating fatigue has mainly manifested itself by making it impossible for me to get dressed. (I’m sure there is some psychological meaning behind it, such as, “If I get dressed I have to face going into the world alone, without my ever-present sidekick.”) I have learned tricks I will share for other grieving mothers so you don’t have to figure this out on your own.

*When you finally sit up in bed in the morning, lift one foot to put through the leg hole of your underwear

*put your sock and shoe on at that time

*proceed to the other leg…(that way you only have to lift each foot once)

* wear skirts

*don’t forget your shirt as I did during one of the very early days back to work. Standing on the back porch with the strap of my tote bag crossed over my bra just didn’t feel quite right. It wasn’t until after I had locked the house and turned to go to the car that I realized what was amiss.

My dear co-workers know that I don’t have the ability to both shower and dress in the same morning, they have told me clothing isn’t optional and have put up with a non-showered me all year.

Tonight I swam laps. When I reached half the number of laps I would normally accomplish, I could no longer propel myself forward another inch. I stopped and spent the rest of my paid time doing water exercises. Last night I returned to water aerobics. Mid-way through the class, the instructor noticed I was struggling and proclaimed, “You need to come more.”  I didn’t disagree. The chlorine smelled wonderful, the aches in my arms and belly suggested there might actually be muscles somewhere in my body, and my water friends are true. She is right. I need to come more.

I had to stop for gas on my home. I wished I was wearing a large sign that said, “Don’t judge.” My lovely water friends leave the locker room put together in fully appropriate attire, whereas I look like I just rolled out of bed and got hosed down on my way to Wal-mart.

~”When everything is moving and shifting, the only way to counteract chaos is stillness. When the surface is wavy, dive deeper for quieter waters.”
~Kristen Armstrong

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My children – my teachers.

cslewisgrief365 days from the death of my daughter and what do I know of grief?  I know there has been wailing and gnashing of teeth. I think that is supposed to reference what hell is like. Perhaps grief is hell? The gnashing of teeth has been so strong at times I thought my head would explode. Primordial wails erupt unexpectedly from the depths of my being ending in shudders and gasps. Tears have covered my cheeks until the skin was raw and cracked. There have been times when I could not stop rocking back and forth, as though the constant movement proved to myself that I was still alive. Sleepless nights are wound together with sleep-filled days. Energy is something I marvel at and envy in those who can actually shower and dress in the same morning.

I often hear in my mind, the second beatitude from the Sermon on the Mount – Blessed are those who mourn, for they shall be comforted. This is a truth I know about grief; comfort comes in many forms, from many places. When God says he will comfort me, his methods are limitless. I think every sense has been used to bring me comfort. Smell: whiffs of fresh shampoo upon being hugged, sweet or savory scents as food being brought to the house was uncovered, calming oils in a steamy bathtub, heady floral scents from bouquets, chlorine as a locker room door is opened, sweet baby smell while nuzzling a grand baby. Taste: piping hot coffee (decaf, of course) with an ample amount of cream shared over late night philosophical conversation, Chinese entrees from every section of the menu, Mexican meals filled with laughter and finished with empanadas, licorice handed to me while I am driving, an open-ended offer to pull out anything from the fridge to the kitchen island. Sight: loved ones packed en masse in a funeral home room, tears of others who loved my sweet girl, heartfelt writings on greeting cards, a smile, unique creations in Katie’s memory, Facetime or videos with my grandchildren. Sound: text beeps, phone rings, Facebook dings all representing someone thinking of me, songs bringing remembrance of concerts and car ride radio playing, laughter. Touch: the light touch of a hand on a back, a massage, a hug, an arm to lean on, a hand to grasp, a kiss on the top of a head, tiny fingers wrapping around one of mine, an arm to tickle, little lips on my cheek, being wrapped in a cozy blanket, more hugs. He has used you all to comfort me, who mourns.

Earlier I posed the question, “Perhaps grief is hell?”,the amount of comfort I have received due to the grieving proves that can’t be true. Perhaps grief is love? If grief is caused by missing someone, someone you loved, there would not be grief if there had not been love. Queen Elizabeth I said, “Grief is the price we pay for love.” Which begs me to wonder would I give up the love I experienced to not have to endure this grief? No way! In fact, the love I knew during Katie’s 29 years makes this grief seem insignificant in comparison to such great love received and given during her lifetime.

Katie taught me endlessly from the moment she was born, but what might not be as blatantly obvious is how much her older brother, Jacob taught me along the way, too. I could list various things I learned from both of them: things like patience, perseverance, graciousness, and humility, but none of it compares with the most important lesson I learned from them.  Katie, whose epitaph will describe her as “well loved & loved well”, and Jacob, who used those words to describe his sister, but they could just as easily describe him; these two children of mine taught me love. One would think a mother would simply, intrinsically know how to love. True, there is that mushy, loving feeling which happened right upon my first sight of my babies, but the love they have taught me is the love which sustains life. A love which gives purpose to life. A love meant to be spread to everyone you meet. The love they have taught me is love fresh from heaven. These two children of mine love in the way I imagine Jesus loves. On this day, the first anniversary of Katie’s death, Jacob made a project honoring her. It was filled with love. It taught me what grief is. Earlier I wondered if grief was hell. Then I pondered that it might be love. I now have the answer. Grief is love. Grief is most definitely love.

And you know what? I can live with love.

click on these words >   Jacob’s project on youtube, you’ll want to see this12809581_10156571907685693_3816945146187050730_n

the hope of candle glow

hope-candle-editA group of people with the worst commonality gathered to find something. What we were looking for might have been different for each person. Perhaps solace, peace, comfort, understanding, help, hope, advice, reassurance, or a place to express love. It didn’t matter what we were seeking, all we really wanted was to not know about this group. None of us asked for membership. In complete opposition of our desires we became bereaved parents. This status of being forever broken-hearted caused us to cleave together to honor the lives of our loved ones too soon gone from this earth.

Earlier this year, seasoned members of this club created a memorial garden shaped like the wings of an angel, and erected an Angel of Hope statue. If you circle the statue you will see these words carved into the base:

“Angel of Hope”

“Annual candlelight vigil December 6 7:00 pm”

“This memorial is dedicated to all those who are grieving the loss of a child”

“Our children  loved, missed, and remembered”

My heart was changed seeing those words so boldly proclaimed. My grief was not going to be a temporary or fleeting condition. The words carved in stone made my daughter’s death cuttingly real. She doesn’t have a headstone yet,  maybe that is why I was gripped by the engravings.

These parents who have learned the impossible tasks of breathing, standing, and getting dressed when falling through the floor feels more realistic, reached outside of their own personal grief to create a hope filled space of remembrance for all who mourn a child. This is how we happened to be gathered on a cold, windy December 6th to honor, to remember, to mourn our children.

I inhaled deeply as I pulled open the mausoleum door. I noted the bucket of white carnations and the table covered with white candles. While waiting for the ceremony to begin parents chatted with each other; there were hugs, tears, and even laughter as the candles were distributed and lit. A couple of poems were read, a song played burning words through my heart. “Tonight I hold this candle… lost in the glow, there are so many things I want you to know.” I concentrated on breathing until they began reading the children’s names which are engraved on the bricks in front of the garden. “Suzy Snowflake, Jack Frost, Hermy the Elf,” I was hearing names of children I knew from town. My hand gripped the candle cup so tightly it bent. Pressure was building up in my head, it felt like it was going to explode. My eyes were blurring when I realized I had been clenching my teeth as tightly as my jaw allowed, testing the strength of my newly installed crown, and I had not taken a breath since the name recitation had begun. I parted my lips and teeth, inhaled slowly and repeatedly until my jaw loosened and my blurriness cleared. I repeated “breathe” with every inhalation. The recitation ended. Now we called out the name of the child for whom we were lighting a candle. Because my head had not exploded, I was able to call out proudly and clearly, “Kathleen VandeMoortel”. Once we knew all the names of our children it was time to process, with lit candles in hand to the Angel garden.

My friend and I became bereaved mothers within weeks of each other earlier this year and tonight we found ourselves at the beginning of the procession, stumbling hand in hand, clutching plastic cups with little white candles lit for our dead children. I fear I might have crumbled to the ground if she had not been holding me up. By the time we reached the engraved bricks my candle had been snuffed out either from my deluge of tears or from the sobs which could not be contained. The blessed organizers were prepared and able to re-light Katie’s candle. The garden was aglow from luminaries lining the wings, our candles placed at the feet of the Angel of Hope burned brightly en masse, telling our children, “we remember you.” and “you will always light up our world.”

We placed white flowers for each child. White flowers signify remembrance and innocence. When laid in the garden, at the base of the statue, their purity reflected the candlelight. I unsuccessfully attempted to capture the enormity of the evening with photos snapped in the dark.  It was a difficult sight to walk away from. I’m not sure what the preferred symbolism is of the Angel of Hope. Maybe it is the hope that our children rest in peace. Or the hope that they will never be forgotten. Or the hope that their lives had meaning. I suppose any hope one conjures is the hope we are given. That night the hope I was given was the hope of a future without my girl, the day I might no longer feel like the poem I wrote this summer when I was attending an event which was completely out of my comfort zone. I knew I would be with people who had no idea what I was experiencing. I worried about how I would present  myself to others because at that time these words fit me best:

I am limp, lethargic muscles,

Wobbly, unstable bones,

Lungs filled with sighs,

And eyes drained of tears

The iron beams of grief lie heavy upon me,

Squashing all activity and dreams.

During moments when the sun shines through the iron beams,

Ideas emerge, Suggesting

a new and improved me will someday sneak Out of the dungeon of sorrow.

A world where I live without a daughter will exist.

I will grab hold of life with the tenacity she taught me.

Plans for that time are slowly forming,

The sun shines through,

My lungs inhale enough to give me a glimpse Of a day

when I will comprehend that I can survive,

and if I try,

Thrive,

as a bereaved mother.

Seeing the others who have walked in the dreaded bereaved parent shoes for many years and realizing they were breathing, standing, and dressed gave me great hope.

Desmond Tutu said, “Hope is being able to see that there is light despite all of the darkness.”

On the December 11, 2016, The Compassionate Friends Worldwide Candle Lighting will unite family and friends around the globe in lighting candles for one hour to honor the memories of the sons, daughters, brothers, sisters, and grandchildren who left too soon. As candles are lit at 7:00 p.m. local time, hundreds of thousands of persons commemorate and honor the memory of all children gone too soon. (taken from The Compassionate Friends)

The neat thing about the above candle lighting is that if somebody from every time zone around the world lights a candle at 7pm it means there will be memorial candlelight for an entire 24 hours.
I’ll be lighting a candle here. In fact it has Katie’s picture on it. Stick around, I’ll show you another time.

You can listen to the song, “Tonight I Hold This Candle”  here: https://www.youtube.com/watch?v=PFxM_sm9pqQ

 

 

To know me, is to know the real thing.

14725582_10157611300170693_6112392010538025485_n Due to a domino effect of used refrigerators trading places, we now have, in our kitchen, a refrigerator that has never had a lock. It sat empty for five days like an alien life form that was a complete mystery. I was unsure how to approach filling it. There aren’t Katie drawers. No insulin or Bydureon rattles around in the “butter” compartment.

275 days into this life of grief, I still buy too many fresh vegetables and yogurt nobody ends up eating. Trips to the grocery store find me standing in front of a shelf not having any idea what to put in my cart. More then once I have walked through the store, pushed my empty cart back into the rack and driven away with nothing in my trunk. One day the butcher found me in such a reverie he said he almost jumped over the case to see if I was alright when I was not responding to his inquiries.

I don’t tell you this looking for pity or sympathy. I tell you so you know the real thing, the real me. I have this firm belief that it is important to share with others the lows as well as the highs. I think it might help somebody else to know what I am experiencing; it might mirror something they are enduring and help them to know how another feels, or it might help somebody who in the future will be in my shoes, or it might simply help you to know me better. To know when my participation in a conversation is non-existent, or distracted at best, that my mind doesn’t always focus or concentrate on what is being said or what is happening around me. Also, I tell you this because you endured all of my griping about the damn locks. You listened and comforted me when I complained about Kathleen‘s stupid syndrome. You knew it was never the inconveniences to me I was bemoaning, but the tragedy of a girl always being hungry which was my cause to wish for a day  I could have a refrigerator without locks. I have one now, I wish it was due to a cure instead of a death. Even without locks, at my house, we are still hungry for a cure……

~~“What we hunger for perhaps more than anything else is to be known in our full humanness, and yet that is often just what we also fear more than anything else. It is important to tell at least from time to time the secret of who we truly and fully are . . . because otherwise we run the risk of losing track of who we truly and fully are and little by little come to accept instead the highly edited version which we put forth in hope that the world will find it more acceptable than the real thing. It is important to tell our secrets too because it makes it easier . . . for other people to tell us a secret or two of their own . . . ” buechner

Wish!

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For more than half of my life as I blew out my candles, I only had one wish. I wished for Katie to no longer be hungry.This was my constant wish, not just for candle-blowing time.  Now she isn’t. My wish came true, not quite how I had imagined it would, but it came true. Tonight, at age 57 I needed a new wish. It came to me quickly. I wish everyone would have the opportunity to fully understand how much they are loved. It is a humbling feeling, one which will have you thanking your lucky stars, Almighty God, or your deity of choice. Every day since Katie died earlier this year, I have experienced love, care, and generosity from family, friends, neighbors, and almost strangers. There are so many people I have not yet thanked, so if you are reading this and have heard nothing from me, please know I am eternally grateful for whatever you did or provided for me. The magnitude of the love is overwhelming and inconceivable. It is also completely palpable. Grief is the hardest thing I have ever done. I was completely unprepared for grief. I have often stated, and still believe I have been in mourning since Katie’s birth. I mourned the child I expected her to be, the child I had planned on having and raising. She wasn’t who I was anticipating. That form of mourning did not prepare me for the slap in the face, punch in the gut mourning in which I am currently engulfed. I vividly remember the lecture and book by Kubler-Ross, but I don’t remember ever once being told how physical the grieving would be. I know I was never told that somebody who loves me would do my laundry or dishes or carry my purse and open my doors because I simply have no strength. Often I feel like a pile of tar in the middle of a Disney World parking lot on a 110 degree day. The Disney World reference is intentional, because I often think the rest of the world is running on Disney happy place steroids…..while I am the tar. People have been able to temporarily love me out of the tar state. Love has been made visible to me. I don’t wish the death of your child or any other calamity which might be the opportunity for you to realize the depth of love others have for you, so instead I wish you would be open to love whenever it knocks on your heart. Watch for love. Recognize love. Accept love. This I know…wishes come true. Allow yourself to be loved. Allow others to love you. It is, after all, my birthday wish.

good enough.

Katie has always been difficult to buy for, for any holiday or gift giving occasion I would wrack my brain trying to come up with a decent idea of a gift for her. I always wanted to find something to make her happy, but my gifts were never food. Instead, my gifts were Uno cards, a new game, a movie, craft supplies, or music; all which she was happy about, but I never felt like I was able to give her what she really wanted. I never thought what I could give her was good enough.  Today, I think I chose good enough. Today, I understand I gave good enough.

One thing about me which was bothersome to Katie is the fact that I am a procrastinator. If taxes don’t have to be done until April 15th at midnight, I’ll turn them in at 11:55pm. When I think of something that needs to be done, I figure I’ll do it sometime this week. When Katie thought of something that needed to be done, she wanted to do it immediately.  Our sense of time, or rather our sense of the importance of time differed. Perhaps she knew tomorrow wasn’t promised, it should be done today.

So today, three months from the day my daughter died,  I filled my car with ribbon, wire, trinkets, a potted plant in a basket and a giant glittery, lavender shepherd’s hook. I drove to her grave site, well, I drove to the vicinity of her grave site. I thought it would be easy to find. I thought it would be the plot with the fresh, new, baby grass growing on it. Nope. They laid sod! I found a metal circle in the ground that read 221 abcd, I knew she was at 221 b. What I didn’t know is where those plots were located in relation to the metal number circle. There was a wooden stake tipped with red paint sticking out of the ground to the far right of the number circle. I looked carefully at the stake to see if there was any other marking on it. Nope. I carefully walked in all directions away from the stake until I found a faint sod line in the ground. I walked the perimeter of the sod line and was astounded how small it looked compared to how eternally huge and gaping it looked when her casket had hovered over it three months prior. I backed up to look at it from a different angle, I heel to toe walked the length and decided that yes, she is probably right there. Now to figure out where the headstone would be located. I suppose it would be located at the head, but if it is to line up with the others in the row, it seemed like I was standing at the foot. I decided I would put her stuff there whether I was right or wrong. I put the bottom of the shepherd’s hook in the sod line and pushed it into the soil by standing on it with my good foot while trying to not damage my injured foot. I reached up to fasten the sparkly fuchsia tulle bow to the center with pipe cleaners. The sun sent sparkles all around my head as it shone through the bow. The bright blue sky made me happy as I saw it peeking through the white rattan of the basket I was hanging. I stuck “stars on sticks” from her students in the plants’ soil, affixed various trinkets, a crown, a cross, and an angel, then I hung up the zip bag of craft supplies. Inside was yarn, scissors, and pipe cleaners with a note to friends of Katie to feel free to use those items to attach anything they might wish to the shepherd’s hook. I walked a few feet away to take a few pictures. It sparkled and shone pink and purple and was noticeable from a great distance. It was up before her birthday. She would be proud. She would be pleased.

For my daughter’s thirtieth birthday I decorated her grave and it was good enough.

For my daughter’s thirtieth birthday she helped me understand that I always gave good enough.

grave decor

Chronic Sorrow~ insight into me

This is a look at a term that lives within me. The first time I heard it was when Katie was a baby and I read the book ANGEL UNAWARE by Dale Evans . The way she described it made relief wash over me. I realized that my feelings were not irrational. That the sadness and grief could co-exist with thankfulness and gratitude. Knowing that the sorrow was chronic and could surface at any time, but especially at times that would usually be times when major milestones would have occurred has helped me to put my devastation into perspective when it happens. I’ve always said there are times that feel like I’ve been hit by a Mack truck, well those times are usually when the chronic sorrow rises up and shows it’s ugly head. I just wanted to share this with you so that you will now have an explanation of all those times you have needed to comfort me and for all of the times that you will in the future. Thanks. lots of love~~~~~~~it truly is my dominant force.Image
I borrowed this description from a newsletter from the Hydrocephalus group…..I liked the way they explained it…….so if you are interested :
“Chronic Sorrow is a term coined by sociologist Simon Olshanshy to describe the long-term reaction of parents who have a child with a disability. This pervasive reaction is often not recognized or understood by those around the parents–professionals, family and friends. These feelings of chronic sorrow are normal and to be expected and accepted, given the life-long implications for the family and child.
Many factors can affect the intensity and exhibition of chronic sorrow: the parent’s personalities, the severity of the disability, the nature of the disability and the adequacy of support and services provided.
Chronic sorrow does not mean that the parents don’t love or feel pride in their child. These feelings, and many other feelings, exist alongside the sadness. It is as if many threads are woven side by side, bright and dark, in the fabric of the parent’s lives. They co-exist; they do not blend into one color, or feeling. Because ours is such a “can do” society, there is pressure on parents to quickly put their feelings of sadness away or deny them. Parents are told to “think positively” and “to get on with your lives.” They are told that God has “selected” them to receive this special child because they are such strong people. These kinds of comments, while well meant, deny the validity or parental long-term grieving. The discomfort of observing pain in those we care about can be part of the reason for such comments from others.
Grieving, however, is a process that takes time, often years. It’s a prickly bush that one must go through, not jump over. However, there are ways to support the process of grieving. Most parents found support in a community of people who understand because they, too have lived the experience. It is lonely to be the only family on the block with a child with a disability. Being part of a support group or organization helps to combat feelings of isolation. Engaging in personal activities that do not center on the family member with a disability can help increase feelings of competency and self-worth. Counseling, especially at times of significant stressful milestones, can be useful.
Chronic sorrow becomes a permanent part of the personality structure of most parents who have a child with a disability. It’s a normal response. It’s thread narrows and widens depending on life situations; most often it is accepted with courage. And, although permanent, if is not the dominant force in interactions with our children. The dominant forces are love and feelings of connectedness to them.”