365 days without your hand in mine. 365 days without a kiss from your lips, without an "I love you, mommy." 365 days without the joy of you in my life. 365 days ago you were lifted from my arms into the arms of the Christ; from earthly happiness to eternal joy. 365 days ago I felt the immense loss of you next to me; from earthly worry and fear at the thought of losing you, to deep depression, then anger and today, conviction and strength that even though you are gone, you have more happiness and peace then I could ever bring into your life here on Earth. I love you enough to let you go and to make the best of my life here, until we meet again. My life is not the same without you, I will never be the same without you. I am still trying to find my new life, a new kind of normal after having loved and lost. Most days I get up and get moving because I know that's what you would want, and some days, when I can, I just sit home and cry. The ocean of tears seems to help my heart heal somehow. I have shed so many heartfelt tears for you; tears on my pillow, tears on your pictures, tears on your blankets, your stuffed animals, your jammies, even stray socks that I find in the laundry. I miss the smell of you, your laughter, your bossiness, your jokes. I miss all manner of things about you; how you liked to use big words such as "definitely" and "actually", how you once asked me if I was leaving the house wearing a certain pair of shoes. I said yes and you said, with your arms folded and stance firm, "then I'm not going with you!" You hated those shoes. :) I haven't worn them since but I still have them because they remind me of you. I miss that you would tell me jokes every night before bed. I miss our "5 Little Monkeys Jumping on the Bed" and all 5 times you were the monkey who would fall down and then get back up and do it again. I miss you singing, all the time you were singing. Your aunt and I like to talk about you in heaven and how you're probably keeping everyone in stitches with your jokes and spreading sunshine all over the place with your beautiful voice, singing with all the emotion in your heart.
I went to visit you twice today, once by myself (with your aunt) and once with your sisters. Each time we placed flowers on your grave. I haven't been up to visit much this past year. Each time I go, I come home feeling as if I've died and sank to the bottom of the fish bowl. I just want to lie there and never get up. Most days I have to just move through the day without much reflection, or life gets too depressing. I always have you on my heart and in my mind and sometimes I can feel your presence. It warms me, usually around my ankles I get a sensation that something is sitting on me and sometimes I feel it at night too. I feel a peacefulness about you. This has helped me to heal. I don't know if I'm going crazy or if it's real but it's help me get through life. There are nights where I've had dreams about you and I wake up not knowing if you visited me or if it's just in my head, but always the dreams are peaceful and you are happy. Maryn, I miss you more than words can say. You are not just on my heart, not just in my heart, but you are my heart; somehow you live in me and it brings me peace.
Wednesday, January 25, 2012
Thursday, October 20, 2011
Happy 6th Birthday Maryn!
Today is your 6th birthday. I think about you always, every minute of every single day. I still wonder, every time I come across a natural ingredient or medicine of some sort, if this could have/would have saved you. I believe I will always carry this "terminal restlessness" with me, a part of life that lives in my heart from which I will never be free. I hope you are enjoying your birthday in heaven. We decorated your earthly home (Larkin Cemetery) with balloons and cards today. We will be visiting again tonight with flowers, glitter and all kinds of sparkly stuff. I hope that you are at peace and that you are loving every moment in heaven. I saw a golden butterfly today for the first time ever in my life, while visiting you. I know you sent it to me today. This thing I want to do to honor you feels right and it feels as though I have your blessing and encouragement. I love you Maryn, more than you will ever know. I am saving up all the hugs and kisses I have for you, for the day when we see each other again. Love, Mommy.
I have really been struggling with Maryn's death this past month. It occurred to me that it has been almost 9 months; it seems so long and yet so short. This week I am grateful that she passed on the 25th of the month and not the 24th. I used to tell her all the time that she was my birthday present and she was. Throughout all of her life she truly believed it. I wonder what it feels like to know that you are a gift to someone. I hope it made her feel so important and needed, because her life mattered and I did need her. I will blog more later tonight, I realized it's been 4 months since I have written anything. Before I go, I wanted to post an amazing article I read recently. The author has such a gift of writing, that speaks to the truth and the heart of parents who suffer unspeakable grief.
Notes From a Dragon Mom
Alexandra Huddleston for The New York Times
Emily Rapp and her son, Ronan, who has Tay-Sachs disease.
By EMILY RAPP
Published: October 15, 2011
Emily Rapp is the author of “Poster Child: A Memoir,” and a professor of creative writing at the Santa Fe University of Art and Design.
Santa Fe, N.M.
MY son, Ronan, looks at me and raises one eyebrow. His eyes are bright and focused. Ronan means “little seal” in Irish and it suits him.
I want to stop here, before the dreadful hitch: my son is 18 months old and will likely die before his third birthday. Ronan was born with Tay-Sachs, a rare genetic disorder. He is slowly regressing into a vegetative state. He’ll become paralyzed, experience seizures, lose all of his senses before he dies. There is no treatment and no cure.
How do you parent without a net, without a future, knowing that you will lose your child, bit by torturous bit?
Depressing? Sure. But not without wisdom, not without a profound understanding of the human experience or without hard-won lessons, forged through grief and helplessness and deeply committed love about how to be not just a mother or a father but how to be human.
Parenting advice is, by its nature, future-directed. I know. I read all the parenting magazines. During my pregnancy, I devoured every parenting guide I could find. My husband and I thought about a lot of questions they raised: will breast-feeding enhance his brain function? Will music class improve his cognitive skills? Will the right preschool help him get into the right college? I made lists. I planned and plotted and hoped. Future, future, future.
We never thought about how we might parent a child for whom there is no future. The prenatal test I took for Tay-Sachs was negative; our genetic counselor didn’t think I needed the test, since I’m not Jewish and Tay-Sachs is thought to be a greater risk among Ashkenazi Jews. Being somewhat obsessive about such matters, I had it done anyway, twice. Both times the results were negative.
Our parenting plans, our lists, the advice I read before Ronan’s birth make little sense now. No matter what we do for Ronan — choose organic or non-organic food; cloth diapers or disposable; attachment parenting or sleep training — he will die. All the decisions that once mattered so much, don’t.
All parents want their children to prosper, to matter. We enroll our children in music class or take them to Mommy and Me swim class because we hope they will manifest some fabulous talent that will set them — and therefore us, the proud parents — apart. Traditional parenting naturally presumes a future where the child outlives the parent and ideally becomes successful, perhaps even achieves something spectacular. Amy Chua’s “Battle Hymn of the Tiger Mother” is only the latest handbook for parents hoping to guide their children along this path. It’s animated by the idea that good, careful investments in your children will pay off in the form of happy endings, rich futures.
But I have abandoned the future, and with it any visions of Ronan’s scoring a perfect SAT or sprinting across a stage with a Harvard diploma in his hand. We’re not waiting for Ronan to make us proud. We don’t expect future returns on our investment. We’ve chucked the graphs of developmental milestones and we avoid parenting magazines at the pediatrician’s office. Ronan has given us a terrible freedom from expectations, a magical world where there are no goals, no prizes to win, no outcomes to monitor, discuss, compare.
But the day-to-day is often peaceful, even blissful. This was my day with my son: cuddling, feedings, naps. He can watch television if he wants to; he can have pudding and cheesecake for every meal. We are a very permissive household. We do our best for our kid, feed him fresh food, brush his teeth, make sure he’s clean and warm and well rested and ... healthy? Well, no. The only task here is to love, and we tell him we love him, not caring that he doesn’t understand the words. We encourage him to do what he can, though unlike us he is without ego or ambition.
Ronan won’t prosper or succeed in the way we have come to understand this term in our culture; he will never walk or say “Mama,” and I will never be a tiger mom. The mothers and fathers of terminally ill children are something else entirely. Our goals are simple and terrible: to help our children live with minimal discomfort and maximum dignity. We will not launch our children into a bright and promising future, but see them into early graves. We will prepare to lose them and then, impossibly, to live on after that gutting loss. This requires a new ferocity, a new way of thinking, a new animal. We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice.
NOBODY asks dragon parents for advice; we’re too scary. Our grief is primal and unwieldy and embarrassing. The certainties that most parents face are irrelevant to us, and frankly, kind of silly. Our narratives are grisly, the stakes impossibly high. Conversations about which seizure medication is most effective or how to feed children who have trouble swallowing are tantamount to breathing fire at a dinner party or on the playground. Like Dr. Spock suddenly possessed by Al Gore, we offer inconvenient truths and foretell disaster.
And there’s this: parents who, particularly in this country, are expected to be superhuman, to raise children who outpace all their peers, don’t want to see what we see. The long truth about their children, about themselves: that none of it is forever.
I would walk through a tunnel of fire if it would save my son. I would take my chances on a stripped battlefield with a sling and a rock à la David and Goliath if it would make a difference. But it won’t. I can roar all I want about the unfairness of this ridiculous disease, but the facts remain. What I can do is protect my son from as much pain as possible, and then finally do the hardest thing of all, a thing most parents will thankfully never have to do: I will love him to the end of his life, and then I will let him go.
But today Ronan is alive and his breath smells like sweet rice. I can see my reflection in his greenish-gold eyes. I am a reflection of him and not the other way around, and this is, I believe, as it should be. This is a love story, and like all great love stories, it is a story of loss. Parenting, I’ve come to understand, is about loving my child today. Now. In fact, for any parent, anywhere, that’s all there is.
I have really been struggling with Maryn's death this past month. It occurred to me that it has been almost 9 months; it seems so long and yet so short. This week I am grateful that she passed on the 25th of the month and not the 24th. I used to tell her all the time that she was my birthday present and she was. Throughout all of her life she truly believed it. I wonder what it feels like to know that you are a gift to someone. I hope it made her feel so important and needed, because her life mattered and I did need her. I will blog more later tonight, I realized it's been 4 months since I have written anything. Before I go, I wanted to post an amazing article I read recently. The author has such a gift of writing, that speaks to the truth and the heart of parents who suffer unspeakable grief.
Notes From a Dragon Mom
Alexandra Huddleston for The New York Times
Emily Rapp and her son, Ronan, who has Tay-Sachs disease.
By EMILY RAPP
Published: October 15, 2011
Emily Rapp is the author of “Poster Child: A Memoir,” and a professor of creative writing at the Santa Fe University of Art and Design.
Santa Fe, N.M.
MY son, Ronan, looks at me and raises one eyebrow. His eyes are bright and focused. Ronan means “little seal” in Irish and it suits him.
I want to stop here, before the dreadful hitch: my son is 18 months old and will likely die before his third birthday. Ronan was born with Tay-Sachs, a rare genetic disorder. He is slowly regressing into a vegetative state. He’ll become paralyzed, experience seizures, lose all of his senses before he dies. There is no treatment and no cure.
How do you parent without a net, without a future, knowing that you will lose your child, bit by torturous bit?
Depressing? Sure. But not without wisdom, not without a profound understanding of the human experience or without hard-won lessons, forged through grief and helplessness and deeply committed love about how to be not just a mother or a father but how to be human.
Parenting advice is, by its nature, future-directed. I know. I read all the parenting magazines. During my pregnancy, I devoured every parenting guide I could find. My husband and I thought about a lot of questions they raised: will breast-feeding enhance his brain function? Will music class improve his cognitive skills? Will the right preschool help him get into the right college? I made lists. I planned and plotted and hoped. Future, future, future.
We never thought about how we might parent a child for whom there is no future. The prenatal test I took for Tay-Sachs was negative; our genetic counselor didn’t think I needed the test, since I’m not Jewish and Tay-Sachs is thought to be a greater risk among Ashkenazi Jews. Being somewhat obsessive about such matters, I had it done anyway, twice. Both times the results were negative.
Our parenting plans, our lists, the advice I read before Ronan’s birth make little sense now. No matter what we do for Ronan — choose organic or non-organic food; cloth diapers or disposable; attachment parenting or sleep training — he will die. All the decisions that once mattered so much, don’t.
All parents want their children to prosper, to matter. We enroll our children in music class or take them to Mommy and Me swim class because we hope they will manifest some fabulous talent that will set them — and therefore us, the proud parents — apart. Traditional parenting naturally presumes a future where the child outlives the parent and ideally becomes successful, perhaps even achieves something spectacular. Amy Chua’s “Battle Hymn of the Tiger Mother” is only the latest handbook for parents hoping to guide their children along this path. It’s animated by the idea that good, careful investments in your children will pay off in the form of happy endings, rich futures.
But I have abandoned the future, and with it any visions of Ronan’s scoring a perfect SAT or sprinting across a stage with a Harvard diploma in his hand. We’re not waiting for Ronan to make us proud. We don’t expect future returns on our investment. We’ve chucked the graphs of developmental milestones and we avoid parenting magazines at the pediatrician’s office. Ronan has given us a terrible freedom from expectations, a magical world where there are no goals, no prizes to win, no outcomes to monitor, discuss, compare.
But the day-to-day is often peaceful, even blissful. This was my day with my son: cuddling, feedings, naps. He can watch television if he wants to; he can have pudding and cheesecake for every meal. We are a very permissive household. We do our best for our kid, feed him fresh food, brush his teeth, make sure he’s clean and warm and well rested and ... healthy? Well, no. The only task here is to love, and we tell him we love him, not caring that he doesn’t understand the words. We encourage him to do what he can, though unlike us he is without ego or ambition.
Ronan won’t prosper or succeed in the way we have come to understand this term in our culture; he will never walk or say “Mama,” and I will never be a tiger mom. The mothers and fathers of terminally ill children are something else entirely. Our goals are simple and terrible: to help our children live with minimal discomfort and maximum dignity. We will not launch our children into a bright and promising future, but see them into early graves. We will prepare to lose them and then, impossibly, to live on after that gutting loss. This requires a new ferocity, a new way of thinking, a new animal. We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice.
NOBODY asks dragon parents for advice; we’re too scary. Our grief is primal and unwieldy and embarrassing. The certainties that most parents face are irrelevant to us, and frankly, kind of silly. Our narratives are grisly, the stakes impossibly high. Conversations about which seizure medication is most effective or how to feed children who have trouble swallowing are tantamount to breathing fire at a dinner party or on the playground. Like Dr. Spock suddenly possessed by Al Gore, we offer inconvenient truths and foretell disaster.
And there’s this: parents who, particularly in this country, are expected to be superhuman, to raise children who outpace all their peers, don’t want to see what we see. The long truth about their children, about themselves: that none of it is forever.
I would walk through a tunnel of fire if it would save my son. I would take my chances on a stripped battlefield with a sling and a rock à la David and Goliath if it would make a difference. But it won’t. I can roar all I want about the unfairness of this ridiculous disease, but the facts remain. What I can do is protect my son from as much pain as possible, and then finally do the hardest thing of all, a thing most parents will thankfully never have to do: I will love him to the end of his life, and then I will let him go.
But today Ronan is alive and his breath smells like sweet rice. I can see my reflection in his greenish-gold eyes. I am a reflection of him and not the other way around, and this is, I believe, as it should be. This is a love story, and like all great love stories, it is a story of loss. Parenting, I’ve come to understand, is about loving my child today. Now. In fact, for any parent, anywhere, that’s all there is.
Thursday, August 4, 2011
Thoughts
Today has been a difficult one. While I know this isn't true, I can't help but feel guilty that something I did or said, someplace we lived or something I exposed her to, caused Maryn's brain tumor. I have apologized to her for this, just in case, only she knows. I also can't seem to let go of the hurt I am feeling at the loss of her. I am trying to move forward with my life, but am finding it very difficult to do so. I'm finding that I don't know "how" to let go of the hurt. I also feel so much guilt for the life I have created for my other two daughters. They don't deserve the unstable life they have had. They've lived through divorce, childhood cancer and death. This is not how I imagined their lives would be. They are so strong, much stronger than I am. I feel very blessed to be their mother.
I am returning to school in 2 weeks, so I am looking forward to having something to occupy my mind. It's been a long summer of grieving. I am bracing myself for a difficult year, my ex-husband just lost his job, so I'm in for another storm. I only have a little more than a year left of school, I'm praying for some peace and calmness in my life. My children definitely deserve that much.
I am returning to school in 2 weeks, so I am looking forward to having something to occupy my mind. It's been a long summer of grieving. I am bracing myself for a difficult year, my ex-husband just lost his job, so I'm in for another storm. I only have a little more than a year left of school, I'm praying for some peace and calmness in my life. My children definitely deserve that much.
Friday, July 15, 2011
Can't Sleep
I can't sleep right now because Olivia is at a Harry Potter movie marathon. I always like to think I can sleep while she is out of the house but I can't. So I've been laying here thinking of Maryn and washing my pillow with tears. I decided to get up and do something useful - write. It's been very hard for me to write these past months. It was very painful to think my reason for writing was gone. I wasn't sure if I would ever write again, but I was surprised to see that people are still reading my blog and leaving comments, so I might as well fill in the pieces of Maryn's life that have been left out for one reason or another.Tonight, I will start with pictures. Pictures of Maryn before her funeral, the night I went to the funeral home to dress her and do her hair. My mom, aunt and sisters were there with me. As I walked into the room, there she was, laying on a table in her pink footie pajamas. She appeared to be sleeping, she was still that beautiful. My family let me have time alone with her at first, and I guess my mind was playing tricks on me because I swear I could see her chest rising and falling as if she was taking breath after breath. I stood there in disbelief, blinked my eyes, then rubbed them, and still I saw the same thing. I walked over to where she lay, placed my hand on her chest and then my ear...nothing. She was still. I saw this several times over the course of the night. It's weird how the mind plays tricks when an unspeakable loss has occurred. I guess when we want something so much the mind will try to believe it to be true, even though it isn't.
I asked the funeral director if I could hold Maryn before we got her ready. She said, of course. I picked up her stiff, lifeless body off the table, walked over to the couch and sat down with her head in my arms. I turned her in towards my chest and again, after a few minutes, I swear I could feel her skin becoming soft and warm. I asked my mother to feel her, trying to be careful with my feelings, she said she could feel her softening up "a little". Immediately, my mind went crazy, was she coming back to me? Even though the logical side of me knew this could never be true, my mind couldn't help the little breaks from reality. I believe it was my way of surviving the situation. I wanted
her back so badly. I held her for what felt like 5 minutes, but turned out to be 2 hours. I had kept my family waiting, it was no 10 o'clock and we still had alot of work to do. I didn't care though, I needed to hold her one last time.I laid her back down on the table and kissed her forehead, cheeks and lips and told her how much I loved her. We then took her jammies off and began to remove various colors of nail polish on her fingers and toes. If there was anything Maryn loved to do, it was paint her own nails. :) We then painted her nails and beautiful pink since that was her favorite color. We then curled her hair and put butterflies in it. Then we put on her tights and the dress she picked out a month before that her aunt bought her. It was supposed to be for pictures and
a dress that she could be buried in, unfortunately the funeral came before we had the chance to get pictures. I purposely did not put shoes on her feet as they really began to itch and bug her toward the end of her life. She hated them anyway to begin with, so we left her barefoot.By the time we finished with her, she was even more beautiful than one could have imagined. She looked like she was sleeping. She looked so peaceful.
Even now when I look at her I am amazed at the power of God's creation. He created her with so much beauty, it remains with her even after her death. I know that she has filled heaven with her light and love, and that she is happy. I do wish that God would part the sky and open a little window into heaven just so I could have a peek.Missing you so much tonight. You'll always be my baby girl. Love, mom
Wednesday, July 13, 2011
Almost 6 months
I can't believe it's been almost six months since my sweet Maryn passed away. I was hoping that this would get easier with time but it seems lately the grief has gotten worse. Lately, every time I do something, whether it's cooking dinner, doing laundry and other mundane stuff, her presence is glaringly absent. I miss her face sitting across the counter from me (or on it) while I make dinner. I miss burying her with the warm laundry, I miss making her breakfast and getting her dressed in the morning. Mostly, I miss her at bedtime, all of her silliness and tricks to avoid going to sleep; telling me stories and jokes and then asking me to tell her stories and jokes. Every night we'd read Angelina Ballerina, her favorite book. I came across it the other day and all the memories came flooding back. I miss her singing along with Selena Gomez songs, she was quite good and had a natural talent for being a star (my little star). My life will never be the same without her and I will never be the same.
I haven't been very social over these last 6 months and I am so grateful for my friends who don't take my absence personally, who still show up at my door with a smile and a helping hand. I came across a poem the other day that struck close to home for me:
I haven't been very social over these last 6 months and I am so grateful for my friends who don't take my absence personally, who still show up at my door with a smile and a helping hand. I came across a poem the other day that struck close to home for me:
Please don't tell me you know how I feel,
Unless you have lost your child too,
Please don't tell me my broken heart will heal,
Because that is just not true,
Please don't tell me my daughter is in a better place,
Though it is true, I want her here with me,
Don't tell me someday I'll hear her voice, see her face,
Beyond today I cannot see,
Don't tell me it is time to move on,
Because I cannot,
Don't tell me to face the fact she is gone,
Because denial is something I can't stop,
Don't tell me to be thankful for the time I had,
Because I wanted more,
Don't tell me when I am my old self you will be glad,
I'll never be as I was before,
What you can tell me is you will be here for me,
That you will listen when I talk of my child,
You can share with me my precious memories,
You can even cry with me for a while,
And please don't hesitate to say her name,
Because it is something I long to hear everyday,
Friend please realize that I can never be the same,
But if you stand by me, you may like the new person I become someday.
Unless you have lost your child too,
Please don't tell me my broken heart will heal,
Because that is just not true,
Please don't tell me my daughter is in a better place,
Though it is true, I want her here with me,
Don't tell me someday I'll hear her voice, see her face,
Beyond today I cannot see,
Don't tell me it is time to move on,
Because I cannot,
Don't tell me to face the fact she is gone,
Because denial is something I can't stop,
Don't tell me to be thankful for the time I had,
Because I wanted more,
Don't tell me when I am my old self you will be glad,
I'll never be as I was before,
What you can tell me is you will be here for me,
That you will listen when I talk of my child,
You can share with me my precious memories,
You can even cry with me for a while,
And please don't hesitate to say her name,
Because it is something I long to hear everyday,
Friend please realize that I can never be the same,
But if you stand by me, you may like the new person I become someday.
Tuesday, March 8, 2011
Obituary
Maryn Nicole Cella 2005 ~ 2011 Maryn Nicole Cella, Age 5 - From the heartbroken, loving arms of her mother into the loving arms of her Lord and Savior, our sweet, beautiful and beloved daughter, sister, granddaughter, niece, cousin, student and friend, Maryn Nicole Cella passed away January 25, 2011 peacefully surrounded by her family and friends, following a courageous 19 month battle with a rare and terminal form of brain cancer (DIPG). Born on October 20, 2005 in Sandy, Utah. She was a pillar of light and love, and touched the lives of many people all over the world. She was a beacon of inspiration and happiness, though her days were numbered. Maryn came into the world like a lamb, quiet, peaceful and happy. She grew into a playful, happy child who loved to play with her friends and sisters, dance ballet, read books, play piano and play outside. She loved to paint and draw and most of all loved her dollies and her stuffed animals. She brought happiness to so many people and fulfillment and meaning to her mother's life. She and her mother were inseparable from the day she was born. They loved each other deeply and together bravely fought the disease that eventually took her life. Maryn also loved her daddy very much. They spent many days making special memories together. She will be deeply missed. Maryn is survived by her mother, Annette Cella; father, Travis Cella (Wannisa); sisters, Olivia (14) Moriah (10), half-brother, Alex and step-sister Sara; grandparents, Gerald and Margaret Bowen, Ron and Judy Cella, as well as many aunts, uncles and extended family. A funeral mass will be celebrated Monday, January 31, 2011 at 11:00 a.m. All services will be held at St. John the Baptist Catholic Church, 11800 South 300 East, Draper. Friends may visit Sunday night, January 30, 2011 from 4:30-7:00 p.m. Holy Rosary will be recited at 5:30 p.m. Interment Larkin Sunset Gardens, 10600 South 1700 East, Sandy. Arrangements entrusted to Starks Funeral Parlor. Online condolences may be offered to the family at www.starksfuneral.com. In lieu of flowers donations may be made to Mountain America Credit Union under the name Maryn N. Cella. Maryn's story may be read at www.marynshope.blogspot.com My sweet baby girl, I love you to the moon, the sun, around the planets and back again, forever and ever. Save a place for me. I'll be there soon. May Jesus hold you in his loving arms until we are reunited. I miss you saying "mommy, holdie me." Love, Mommy.
Published in Salt Lake Tribune from January 29 to January 30, 2011
Saturday, March 5, 2011
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