I think I am ready, my vision is not so blurred, my wound not so fresh.
I realize in my grief that I have hurt many people, not purposely, not intentionally, also at the time not really caring. I didn’t care how my words affected people, it didn’t matter to me; nothing did.
But I did hurt people, I did lose friends. And I am coming to see that I was to blame not them as I had chosen to once believe. The ones closest to you disappoint us the most when they don’t know what to say- but really no one did and nothing said was ever right, but we expect more from certain people and when I felt they didn’t deliver I was cruel. Yes, I was hurt and did not care, to quote the movie ‘Home’ I was ‘sad-mad’. I also wanted them and others to hurt, to lose someone, to lose me even. Grief blurs our reality and for a while it is helpful but when the haze clears sometimes there are regrets and this time it is not about the loss or if I could have done something differently.
It is realizing that in my pain, I caused pain to those closest to me and for that I am sorry.
“Because even the smallest of words can be the ones to hurt you, or save you.”
― Natsuki Takaya
Would you call me crazy if I told you the truth?
Would you think I am weird for the tiny rituals I do to remember my lost little girl?
If you knew I wondered if every butterfly I saw was my daughter,
If you saw me cuddling the stuffed elephant I bought her 4 days before she died, that sleeps beside my bed so if I wake up and want to hold it I can.
Do you wonder why I have so many stone Angels’ in and around my house?
Would you call me crazy if I told you I wake up in a frantic panic at times confusingly wondering where my baby is?
Would you think I am weird for gently touching the dried blood stains that I cannot wash off her blanket and hat?
If you knew I prayed for people to ask about her would you?
If you saw me talking, kissing, holding her picture, would you call me crazy?
Some might but I am ok with being a little crazy.
I am crazy for my living children, for my husband, why can’t I be crazy for my little girl whose life was so short but has touched me so hugely.
Call me crazy.
Away on a family trip, a beautiful butterfly just like this one, landed on my 2 year old daughter Hope, who we had after Lily died. She freaked out a little because the butterfly didn’t seem to want to leave her shoulder, all I kept thinking was – It’s ok Hope its your sister.
Thanks for reading,
My daughter Lily was born still.
That’s what would have been my statement had we waited any longer. She was born blue and was resuscitated; because of her beginning without oxygen she suffered brain stem damage, she was frozen for 3 days to help heal her brain damage, the first time I held my baby girl she was 4 days old. But she was alive so I was grateful.
Weeks passed with so many tests, all with a negative conclusion and after having a feeding tube surgically placed into her gastro intestine we were able to take her home. What gets me is that even though they did 3 MRI’s and multiple other scans, they missed what would eventually kill her. That was her trachea. They were so close too, they found the holes in her heart, they found the valve that pumped the wrong way, all of these would need surgeries to be fixed but she needed to be bigger and stronger to endure them, had they looked an inch higher they would have seen her abnormal trachea.
The night Lily stopped breathing and I performed CPR on her plays out as a nightmare in my memory, for the longest time I wanted to move because every time I looked at that spot on the floor where she lay, my heart stopped, but then we replaced the carpets with hardwood and I was sad that that was now gone too, so I knew I couldn’t leave the one place she had been. When they found out about Lilys trachea, the doctor phoned and told me she would need a tracheotomy to live- that’s a hole in her throat to breathe, he said she would never have a good life, would never speak, would never taste anything and would have a shortened lifespan because of it. That surgery was on top of the other 4 heart surgeries she needed. This one would now be 1rst though. He said I will do it if you tell me to but even on a healthy baby the chance of survival is slim. What the fuck do you say to that!? We had company downstairs that day, I didn’t go back down.
We went back to the hospital 1rst thing the next day probably our 100th drive then. I suffered from ptsd every time I got into the car after she died. 4 days later we signed a do not resuscitate order, they took out her breathing tube and we held her until she died 30 minutes later at 4:55 pm on February 18 2012. I am forever haunted by this. What if we did the surgeries? Most likely she wouldn’t have died in our arms but on a table. What if we accepted the transfer to Canuck Place? We probably would have had a nicer end of her life together as a family. What if she was born still? None of these traumatizing experiences would have happened, we would have still grieved but differently I imagine. The hardest, what if she continued to breathe, what if she was that 5% that survived.
So as life goes on, as we try to understand the why’s of it all, we want to grow, we hope to learn, we try to accept, we continue to live. We chose to remember.
When tragedy or loss strike; grief comes full force after the shock fades, it turns the world upside down, a new universe in which you are scared and alone, one where lies are revealed, truths are sought, feelings broken, hearts shattered, lives and friendships torn by reality.
Grief now makes it appearance at every birthday, every anniversary every holiday, every season ending or beginning.
Your life is now grief, grief for the kids that are no longer little or there, you grieve them growing, you grieve the little moments that once were so tiresome but are now gone, forever. You grieve your past, your failures, your regrets, your wants that went untold or unfound. You grieve what you had but lost and also what you never had but desperately wanted. Life is grief.
Why I hate September;Fall and Winter….
Sept 2011– My nightmare begins. I was 6.5mths pregnant with my 3rd child. I started having terrible thoughts, feelings of anxiety and despair I didn’t know what was wrong with me- just that something was wrong. Terribly wrong.
Sept 2012– My daughter has been dead for 7 mths. I should be planning her 1rst bday instead I am hiding my tears from strangers.
Sept 2013– My 2nd daughter was born 5 mths ago. My 1rst daughter died 1yr 7mths ago. I hate the Fall and Winter months. It will soon be my 2nds daughters 1rst Christmas…. my 1rst daughters 2nd b-day would be right after Christmas… her 2anniversary of her death 2 months after that.
Sept 2014 – I feel the dark clouds hovering in the back of my mind. So resumes my grief, rolling back into view. My anxiety returns full force. My nightmares make a nightly appearance. My 4am crying time return. Lily should be starting preschool this Sept. That is hard. Then follows my 3rd birthday without her. Her 3rd birthday without us. Halloween, Thanksgiving, Remembrance day is even hard, but Christmas, her b-day right after that and New Years are the worst. If I didn’t have other children I imagine I’d run away from Sept to March every year to live in a hut in Tahiti or anywhere far far away to escape. Escape the voices of guilt, regret, loss and loneliness. I hate September.
I cannot believe another year has come and gone. I cannot believe how fast life is moving, how far away you are getting. How the memories begin to fade, the pain has faded as well, but I wish some would stay to remind me more. I bought the most beautiful star-gazer lilies for your birthday; we also dropped white ones into the ocean for you. I remember someone saying to me once while at my house-“you always have fresh lilies around” I didn’t respond, but that comment haunts me, I was bothered that they didn’t acknowledge that they were always lilies I kept but said flowers instead. I think well yes because I always want the flower that remind me of my beautiful angel, then I think, why don’t you know that? Are you really surprised? She then asked me where I find them – I say everywhere! When I am at a store and they have lily flowers I buy them. They could ask why I named her Lily and discover it was the very first flower my now husband and father of our children including lily had brought me on our first date and then following anniversaries. In hindsight maybe she was trying to mention my daughter but at the time I was still angry and could not understand why it was so hard for others to bring up. I then thought about how after this past Christmas having had a bouquet of lilies on every surface and having double digit family members visit, I realized they to never comment on my flowers, I think that is odd, I remember having roses or tulips when people come into the house and say ‘wow -nice flowers’ but no, not for my lilies, is it because they think I may be reminded of my angel? well then they are foolish, she is never forgotten even for a second, even if I am smiling she is on my mind and in my heart. Is it because it makes them uncomfortable to acknowledge them? That is probably more likely. Would it be a big deal to just say nice lilies and leave it at that. I have Lilies planted in front and back of my house, I find the fragrance welcoming, I find the sight of them heart wrenching-ly peaceful. I love watching them grow from nothing. Its weird I see a bunch of lilies at the store and feel like I really have no choice, I buy them I feel somehow like I am betraying my lost daughter if I don’t- that may seem obsessive but it hurts no one and you will not hurt me by commenting on my lily flowers in my home- they are not there by accident nor to make you uncomfortable. They are there to comfort me.
On an unrelated topic but still having to do with acknowledging grief or someone’s loss or maybe in my case remembering the person with us. Start by mentioning the beautiful lilies in my house or how it must be hard to experience Christmas without her when just two years ago I was anxiously, nervously awaiting her (late) arrival all throughout Christmas. My Christmas’s will forever be about Lily and how she came and went Christmas to Valentine’s day with New years in between. Huge “celebrations” that are not celebrations for me, but remembrance days of what was supposed to be. She may have lived only two months in the “real world”, but she lived inside me for fortyone weeks (ten months) she lived a thousand days in my mind; how I imagined her first trip to the beach- her and I in matching bathing suits, how I thought of her first or tenth birthdays imagining what she’d look like, how we’d celebrate. – She has lived- in me, in my mind and now in my consciousness, in my heart.
******So I share this-(Written by Megan Devine) on how to deal with others grief because the more aware people are the better the grievers can cope, with their new life, their new guilt, their new loss that will never be healed.
I especially agree with #5, # 6 and #3……and#4 okay I agree all with all of this!
“ #1 Grief belongs to the griever.
You have a supporting role, not the central role, in your friend’s grief. This may seem like a strange thing to say. So many of the suggestions, advice and “help” given to the griever tells them they should be doing this differently, or feeling differently than they do. Grief is a very personal experience, and belongs entirely to the person experiencing it. You may believe you would do things differently if it had happened to you. We hope you do not get the chance to find out. This grief belongs to your friend: follow his or her lead.
#2 Stay present and state the truth.
It’s tempting to make statements about the past or the future when your friend’s present life holds so much pain. You cannot know what the future will be, for yourself or your friend — it may or may not be better “later.” That your friend’s life was good in the past is not a fair trade for the pain of now. Stay present with your friend, even when the present is full of pain.
It’s also tempting to make generalized statements about the situation in an attempt to soothe your friend. You cannot know that your friend’s loved one “finished their work here,” or that they are in a “better place.” These future-based, omniscient, generalized platitudes aren’t helpful. Stick with the truth: this hurts. I love you. I’m here.
#3 Do not try to fix the unfixable.
Your friend’s loss cannot be fixed or repaired or solved. The pain itself cannot be made better. Please see #2. Do not say anything that tries to fix the unfixable, and you will do just fine. It is an unfathomable relief to have a friend who does not try to take the pain away.
#4 Be willing to witness searing, unbearable pain.
To do #4 while also practicing #3 is very, very hard.
#5 This is not about you.
Being with someone in pain is not easy. You will have things come up — stresses, questions, anger, fear, guilt. Your feelings will likely be hurt. You may feel ignored and unappreciated. Your friend cannot show up for their part of the relationship very well. Please don’t take it personally, and please don’t take it out on them. Please find your own people to lean on at this time — it’s important that you be supported while you support your friend. When in doubt, refer to #1.
#6 Anticipate, don’t ask.
Do not say “Call me if you need anything,” because your friend will not call. Not because they do not need, but because identifying a need, figuring out who might fill that need, and then making a phone call to ask is light years beyond their energy levels, capacity or interest. Instead, make concrete offers: “I will be there at 4 p.m. on Thursday to bring your recycling to the curb,” or “I will stop by each morning on my way to work and give the dog a quick walk.” Be reliable.
#7 Do the recurring things.
The actual, heavy, real work of grieving is not something you can do (see #1), but you can lessen the burden of “normal” life requirements for your friend. Are there recurring tasks or chores that you might do? Things like walking the dog, refilling prescriptions, shoveling snow and bringing in the mail are all good choices. Support your friend in small, ordinary ways — these things are tangible evidence of love.
Please try not to do anything that is irreversible — like doing laundry or cleaning up the house — unless you check with your friend first. That empty soda bottle beside the couch may look like trash, but may have been left there by their husband just the other day. The dirty laundry may be the last thing that smells like her. Do you see where I’m going here? Tiny little normal things become precious. Ask first.
#8 Tackle projects together.
Depending on the circumstance, there may be difficult tasks that need tending — things like casket shopping, mortuary visits, the packing and sorting of rooms or houses. Offer your assistance and follow through with your offers. Follow your friend’s lead in these tasks. Your presence alongside them is powerful and important; words are often unnecessary. Remember #4: bear witness and be there.
#9 Run interference.
To the new griever, the influx of people who want to show their support can be seriously overwhelming. What is an intensely personal and private time can begin to feel like living in a fish bowl. There might be ways you can shield and shelter your friend by setting yourself up as the designated point person — the one who relays information to the outside world, or organizes well-wishers. Gatekeepers are really helpful.
#10 Educate and advocate.
You may find that other friends, family members and casual acquaintances ask for information about your friend. You can, in this capacity, be a great educator, albeit subtly. You can normalize grief with responses like,”She has better moments and worse moments and will for quite some time. An intense loss changes every detail of your life.” If someone asks you about your friend a little further down the road, you might say things like, “Grief never really stops. It is something you carry with you in different ways.”
Above all, show your love. Show up. Say something. Do something. Be willing to stand beside the gaping hole that has opened in your friend’s life, without flinching or turning away. Be willing to not have any answers. Listen. Be there. Be present. Be a friend. Be love. Love is the thing that lasts.”
Megan Devine is the author of Everything is Not Okay: an audio program for grief. She is a licensed clinical counselor, writer and grief advocate.
You can find her at www.refugeingrief.com
January 5th 2013
Fall has come and gone, Christmas has come and gone, my Lily’s 1rst birthday (December 30th) has come and gone. 2012 is now gone.
It is now a new year, a new hope for the future, a new light to seek. I made a colage of photos for Lily’s birthday, I can look at it, I love to stare, I get sad but now only a few moments after I am okay again and not grief-stricken. I have hope.
I heard once that hope is what you have left when reality has taken everything else from you. I have hope. She is in fact a twenty-seven week old fetus –female fetus- we have named Hope that is in my womb.
This new journey has been incredibly hard, exhausting, painful wondering would it happen again? What can I do different? Our loss has been intensified by not knowing why, how or maybe knowing that it was just a rare five percent chance that all have but that we have already lost a child it is more likely to happen again because it is possible it is something in my body. People that have miscarriages don’t miscarry once it’s usually multiple times because of something not functioning properly in their body, similarly with stillborn babies, is it me? Will she be safe? I have to hope she will be okay.
I am cautiously happy.
I had a thought this is my fifth pregnancy thought I have two living children maybe I will have three. Her due date is April, as it approaches I am filled with terror in reliving Lily’s birth.
January 14th 2013
As I drive home, I listen to your song – the one I played for you at your funeral. I listened to this song every day on the way to the hospital to see you last year, I cry every time I hear it.
It snowed today and the beauty of it surrounding me made me think of you, you are in everything around me. As I drove home listening to our song, crying, thinking of you. In my rear view there is an ambulance, I pull over immediately I would never hesitate anymore I don’t know if I did before but that one horrible winter night last year February 11 to be exact I screamed for one, I breathed into your little face, I pushed fearfully onto your tiny chest and I waited for the ambulance. Today whenever I see one I think of that night, I worry about where it may be going, who it could be rescuing this time I would never hesitate to pull over, they need to get where they are going somewhere there might be a mother waiting, scared because their child is dying. I love you, I love you, I love you.
I don’t believe in God, in the sense that my child is sitting with some “God” I believe in continuation, in spirit, in love. But this song was played often during my hardest months and I found comfort in its words…. Heaven has a different meaning to us all so I thought it’s a great line….. “Moments of heaven mixed with moments of hurt” that is what I felt, feel about life today.
- 5 months after my girl died these were my thoughts…. (dealingwithmygrief.wordpress.com)
- 6 months after Lily’s Death & I was pregnant?! (dealingwithmygrief.wordpress.com)