A truth has been revealed to me. I AM KATIE’S MOM!
I became Katie’s mom 32 years ago today. I was her mom then and I am her mom now. When she died two years ago I didn’t realize I could still be her mom even though she is not here. At that time I felt I had lost much of who I am. I lost my identity when I lost my daughter. My mother once described it as losing even more, she said, “losing Katie is like losing a big chunk of our own bodies, bigger than if we had lost an entire arm”.
It was recently pointed out to me that I am able to mother her still, not only while she was alive, but also in death. That is earth-shattering to me. I am not sure what that will look like, but I think since her death I have been mothering her by sharing her story. Her story did not die with her, it is up to me to share her life, her death; her effect on me and on you.
She taught us so much while she was living, and has taught us even more with her death. The lessons are the same. I learned about grace, perseverance, patience, and courage by watching her struggle with delayed milestones, bullies, ever-present hunger, and frustration. I am learning how to live with my new struggles. An example is how I have called upon her lessons to get me out of bed every morning. Once I decide that I must get out of bed, I put one foot on the floor, then attempt to get my other foot close to the floor. I’m still supine with my head on my pillow but bent at the waist to a near ninety degree angle (much like a broken Barbie doll chucked aside for a newer version) waiting for the strength to hoist my body upright, which I know I can do because I am a warrior! I am finding my new identity. I am a broken Barbie doll warrior. I am the teller of Katie’s story. I am Katie’s mom. I was her mom and I will be her mom until the day I die.
Today, I celebrate Katie’s birthday by becoming her mom once again. I’ve missed her.
written: April 26, 2018. 32 years after Katie’s birth.
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.”
How does one celebrate life? In 1986, while I was pregnant I had ideas in my head of what my new baby’s life would be like. I had the fear of bringing a child into a world where the new ice age was still being predicted and the Russians could attack us at any moment, but pregnancy in and of itself proclaims optimism. Every time a person is pregnant the possibilities for potential are mind boggling. What will this life inside me do? Will great scientific discoveries be made? Medical advancements? Compassion to all one encounters? Will this baby know joy and laughter? As a mother, I wanted a grandiose life for this new baby. I wanted him or her to follow in the big footsteps of the older brother, Jacob and make us a perfect little family of four with a goldfish in a bowl and the hope of a dog in the future.
April 26 brought us a beautiful, silent bundle of pink whose life was not going to follow my grandiose agenda. During the days following her birth we were told we would possibly never be taking her home. And then told, she would go home, but we should expect quick deterioration ending in death within eighteen months. When the final diagnosis of PWS was given we were told she will live in constant hunger resulting in probable death in her teens. My world was shattered. I went from producing a child who would change the world to producing a child for whom I could not even satisfy all of her basic needs. I could clothe her: golly we did that!! the amount of pink in our house was like a cotton candy machine at the fair. I could shelter her: cozy and snug in a room with her brother in a house containing a nest of seventeen baby mice hidden in the bowels of the sofa. But the final of one’s three basic needs would never be attainable for this mother, I would never be able to keep her from being hungry.
I am using what would have been her 31st birthday to celebrate her life. I find that although I never, ever squelched her hunger, she had the grandiose life I had once dreamed would be hers. Scroll up and re-read what my hopes for that unborn child had been. She accomplished all of that and so much more. Her life exceeded my plans.
Great scientific discoveries? You know it! New methods of stretching and staining the bands of chromosomes. By age two she had already reached one of my dreams.
Medical advancements? Rock it, Katie-girl! Years of rigorous physical testing and daily injections by my brave girl helped to make growth hormone a common treatment for certain symptoms of Prader-Willi Syndrome.
Compassion to all one encounters? It isn’t often you meet somebody who never speaks ill of anyone. Of anyone. At her funeral a school mate of hers told me a story about how Katie had stood in front of one of the boys who had bullied her for years and told him she forgave him.
Joy and laughter? Abundant joy and laughter. Catching the biggest trout, getting a wild-draw four card in Uno, Cohen’s sweet baby face, Sophie splashing in her arms in the pool, Ellie patting her belly, Jacob dressed in a suit serving tea at her dress-up party, teasing about her social life from Coach, being able to recite all the things which made each of her students happy, just a few examples of all her joy and laughter. Planning her birthdays with Grandpa Jake was a huge source of delight. This year they get to celebrate together again.
Her life shattered my world. I hope you have someone who shatters yours. Someone who shows you how precious every moment is.
Happy birthday, Dad and Katie.
“Celebration is only possible through the deep realization that life and death are never completely separate. Celebration can only really come about where fear and love, joy and sorrow, tears and smiles can exist together. Celebration is the acceptance of life in a constantly increasing awareness of its preciousness. And life is precious not only because it can be seen, touched, and tasted but also because it will be gone one day.” ~ Nouwen
Katie’s gravelights were a birthday gift from somebody who still loves her. Pink and purple solar powered fairy lights.
In the entire history of the universe, let alone in your own history, there has never been another day just like today, and there will never be another just like it again. Today is the point to which all your yesterdays have been leading since the hour of your birth. It is the point from which all your tomorrows will proceed until the hour of your death. If you were aware of how precious today is, you could hardly live through it. Unless you are aware of how precious it is, you can hardly be said to be living at all.” ~Buechner
365 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 this
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.