Five

I cannot believe you will soon be five.

You should be turning five that is.

It hurts to re-live that night five years ago, when you were born and all there is, was silence.

No beautiful wail escaped your body.

I shook in my own tears as I was expecting this moment, as if I knew it was to happen.

Throughout my pregnancy I was terrified something was wrong. It just didn’t feel right. Then it happened, first with excitement at your arrival then with shock as you were backwards folded in half turning blue on exit. The doctor and nurses worked so hard to get you to breathe as your dad held your hand begging you to try.

I was in my own shock; all was silent. I heard nothing, I only assumed you were dead. when the doctor told me they inserted a tube finally helping you to breathe but you needed to go immediately to the NICU, that I couldn’t see you. My mind could not wrap around what was happening or why. That was the hard beginning to your short beautiful life that has changed me forever. As a mother, as a human being who vows to live empathetically and compassionately helping others. I thank you for your time in my life my beautiful child.

I wish you a happy fifth birthday this Dec 30th  wherever you are my sweet angel.

Love always and forever.

mom.

The Forever Dream

The Forever Dream

By Sheri Hall
Walking on a rainbow; she smiles
Floating on a cloud; she laughs
Whistling of the wind; are you ok? She asks
When my nose is cold; I think of you
Her eyes as dark as the moon is bright
Look into my heart; soothing the chills
Her stare holds me in an embrace
My eyes puddle; at a chance to see her face
As the sun comes
I reach out my hand; but she is gone again
Thank you for reading
Namaste,
Sheri

As I Drive

Where my mind goes as I drive, I think back to those long torturous drives that I had grown to detest, anticipating the anxiety that arose as I approached my destination. I have grown to hate the radio because of those long drives, angry at its insistence to play happy annoying songs, angry at its ignorance of my need to hear sad songs or silence because the music or talk it emits draws upon too many emotions that at the moment I cannot focus on. All I can focus on is my arrival at her side. I circle the building, over and over looking for free parking, I could park in cozy and safe underground parking but at fifteen dollars a day times forty two days so far is not realistic, so I circle, praying for someone to leave, desperate. Finally I find one a bit further away but I do not care. I need to get inside. I need to see her. I exit my car, often forgetting all that I will need for the day and eventually having to run back to get them. I run, my legs ache it feels as though I am not moving very fast, I push the doors open and begin my agonizingly painful walk down the long, white often empty corridor, trying to avoid the smells that surround me, wanting desperately to just magically appear at her side every morning; but having to endure this long routine of getting to her. I finally reach the room; I rush to scrub my hands, remove my rings, and sign my name on the visitor’s sheet although they should know who I am by now. I drop off the extra snacks I have brought for the kids of other families that visit in the adjoining family waiting room. I remember the first time I brought my other children here, in shock, not prepared for them to whine for food and having none. I did not want other new comers to have to feel that, I wanted to help. I wanted someone to help me. I felt so lost, so confused, so scared. Finally I get to her side, I see that they have been poking at her again; I hold back my tears as I stroke her beautiful little face, that is splattered with dried blood from their obvious failed attempts at finding useful arteries. Why. My mind so often wonders why. Why me, why her, why does this happen to anyone. I try to pick her up but it is so hard with all the tubes and IVs, so I lay my head on her tiny body, the body I grew inside my own, the body that grew unable to breathe on its own, the beautifully perfect on the outside but so broken on the inside body, that now has become mine as well. Broken; my heart is broken, my mind, now broken, unable to understand the jargon being spoken to me by doctors, specialists and surgeons. I am unable to function I just want to hold her and have everyone else shut their mouths. Stop talking to me; stop telling me to leave her so we can have a meeting about a future no one knows for sure. Stop making me drive all the way here every day, getting stuck in traffic wondering if when I get here will she be the same, will she still be there. The panic that has grown in me over these last few weeks is almost unbearable I say almost because I am still here. I just want to take her home; I just want her to be normal, to be able to breathe on her own, to not need multiple surgeries to fix the problems with her heart. I just want to stop feeling scared and sad. I often think back to all those times I knew something was wrong, all those appointments with my doctor where I could not stop crying nor could I explain why I was crying, I just knew something was wrong because of the morbid, guilty thought I often had was if I have a miscarriage that may be better. Then she came, it was traumatic to say the least. She was folded in half, I needed a caesarean but it was four in the morning and no anesthesiologist was on so I was supposed to wait till she got here, but I could not wait, not anymore, I was already two weeks late. I kept pushing, another thought that will leave me riddled with guilt, what if I just waited, what if I did this to you. So out she came, folded in half, not breathing and turning blue. The room went silent. Hours passed before someone came back to talk to us. I did not even know until months later that your dad was asked to hold your hand and talk to you as they tried to resuscitate you. A moment he is haunted by today. They told us you were being transferred to the neo natal intensive care unit at Children’s Hospital. They told us we should follow. They told us I would be admitted there. That they had to insert a tube so she could breathe but with an unknown amount of time without oxygen that she most likely had brain damage, there is even a name for it: asphyxiated birth- birth without oxygen. One of many new words I was forced to learn very unwillingly. That they would do what they could for her but that there were no guarantees. This was the first of many long, silent drives down to the hospital, to see my daughter that was born not breathing my daughter that we also later would find out was born with congenital heart disease: three holes in her heart, an abnormal trachea and needed a feeding tube. Her first surgery was when she was just 5 weeks old. But I knew none of this on that first drive. I was in shock, in denial, a part of me assumed that when we got down there, she`d be fine. The brain is funny that way. That was the first drive until 52 days later we made the last. We did not know it was the last of course, not until we got there and learned of the results from the latest scans, I did not know that was the beginning of my anxiety that surrounds driving now. We learn that the chance of you surviving, being so small and so fragile already, that the chance of surviving the surgery needed to fix you was slim if any chance of survival at all. We were told they would operate if we asked them to. But did we want to lose you on the operating table or in our arms. It is quite odd to have people speak to you this way, so matter of fact, about your child. That is going to die. They offered to move you to hospice but did not know if you would survive the transfer. So we held you, right there in the pediatric intensive care unit as they removed your tubes, always in the back of my mind was the thought -what if she breathes on her own, what if. A saying that will haunt me forever: what if. But you did not breathe on your own. Your dad and I held your amazing, precious little body until we could not. We walked silently back down that cold, white corridor for the last time and drove in silence for the last time that long treacherous drive home; never to see you again. Never able to drive again without thinking of the first, the last and the fifty lonely drives` in between trying desperately to see you.

That is what I think of as I drive.

Thanks for reading

Namaste,

Sheri

I see you’re sad

I see you’re sad. You are trying to hide it but I can see it. Others won’t, you are functioning as you should, but I see the slight differences. You used to laugh so freely now it’s forced; you dressed always over the occasion and easily looked the best, now you wear my favorite attire in time of raw grief, comfy clothes that are always ready to nap with you. I sense the change in you; you are quieter staying inside yourself protecting your heart. I see it because I know, I have been there. Your mind is reeling from the loss that it feels fuzzy sometimes confused or hard to make pointless conversation, not sure what to say so it stays silent. You become an observer. Watching life move on when you can’t. You don’t find things funny or silly it is too hard when you experience the certainty of life -that is death. Your appearance seems unnecessary, we hide behind hats; literally to cover our face; hide our sad. We assume people do not notice because we are out, we are functioning, we attempt to smile when need be. They don’t know we sleep more, eat less or less healthy because who cares right. But I see you’re sad. I feel your grief when I look in your eyes. I know your pain when you force a smile or conversation or simply walk away because you can’t take it. I know, I see it and I am sorry.

Thanks for reading,

Namaste,

Sheri

 

Written for my close friend because I see her pain but oddly enough do not know what to say or do knowing she needs to walk her own path through her grief.

 

Faucets of the heart

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As I lay awake with the demons of the night my mind wanders in and out of morbid thoughts. Ones I can shake some I cannot.

We are all born with a fairly similarly functioning heart, thought not my daughter Lily who died needing many heart surgeries from congenital heart disease. Anyways, as I was thinking while wishing I was sleeping; we are all born with a tiny faucet on our heart that helps us to feel, to empathize, to show and have compassion; to hurt.

As we grow, as we get disappointed, let down, break,our faucets leak more, causing us to feel more, cry more. Maybe with trauma grows a new faucet, maybe with death of those close to our hearts grows multiple. At times in grief, especially the raw stage of grief we feel actual pain, in our chest because of our sadness or hurt or loss; crying hurts- literally, our faucets are overflowing.

Perhaps over time they slow, maybe even stop leaking in moments of bliss or happiness, but they are always there. Those of us that have more faucets feel more in times of tragedy because we have been drained before. we cry more easily because our taps turn on faster. We hurt when others hurt. But I think that is okay. If we do not feel we do not live.

Thanks for reading,

Namaste

Sheri

 

My Heartbeat Songs

“I think of you, and I’m not afraid”

poor baby

This first song, is a song  I listened to over and over on my drives to and from Children’s hospital  it gave me hope. That we’d be together through distance and time. Countless times after you left, I still do hope to see you again.

 

lb

 

hayd lily

The 1rst time I heard this song was after you died February 18 2012 17:05pm. The lyrics really struck me. Especially – “Mid February shouldn’t seem so scary it was only December, I still remember the presents, the tree, you and me”… I Miss you lily Bean.

 

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home

We heard this song often while you were here on earth but most noticeably at your bedside on the day you died. You told us you wanted to go home, and it was the hardest thing I’ve ever had to do.

 

ballon

Happy 4th Birthday my little angel xooxoxoxoxoxo

forever & always your mom

It is ok to be sad

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I feel you rolling your eyes, as I hit post. Another grief post you think! Your pain is no longer because it wasn’t your child you lost, it was mine, so you did feel sad for a bit after, you don’t understand how or why I am still grieving or posting sad stuff about grief. I get it its not your loss, you don’t feel it every day like I do and you don’t want to remember it  as much as I do. You might think I am bitter or want sympathy, I don’t. Just know that my heart hurts when I glance at the spot on the floor where she stopped breathing, that I have trouble thinking of moving because this is where she lived for 2 short weeks. Every time I hear a story of tragedy or a life lost I cry for her. Am I stuck? no I am human. I am a mother that gave birth to a beautiful baby that struggled to live, to breathe, that spent 5 weeks in the NICU, not sleeping, not feeling and slowly breaking. That was almost four years ago I know, you think I must have moved past this pain, I have another little girl right. She is my savior, yes. but also my daily reminder of my first little girl that is not here. Would they be best friends? or Would they fight a lot?  I wonder. And yes that too makes me sad. Immediate grief after a tragedy is overwhelming, its consuming and then time takes it away, little by little the intense memories fade and it is easier to ‘pretend’ life is what it is.

Today is October 15th- International Awareness of Stillbirth, miscarriage and infant loss

A day that makes me sad but grateful to have met and to be a part of a community of women, amazing women, that too have suffered a loss, something that is not openly spoken about but should be, something that people are uncomfortable to bring up, leaving the person(s) that suffered the loss alone. Why are we told not to share a pregnancy until 3 months? in case you lose the baby right, we don’t need to upset people like that! but then we suffer alone with our loss. Not right. After I lost my daughter, after she was born at full term, after she was given a birth certificate because she lived past 21 days (the time the government thinks your baby needs to live to be considered a human!) even though we all know as soon as we see that pink or blue line we have a child in our life, whether they live past 21 days or not, to be deemed a person! Different issue, I move on. The stigma that surrounds uncomfortable feelings needs to stop. People need compassion not shame. I don’t know how to change the world into thinking its ok to be sad, we do not need to ‘pretend’ to be happy all the time. As Buddha says ‘Life is suffering’ I believe we have pockets of happy moments or happy feelings but if you truly look at the world and live true, you see that it is about surviving, surviving tragedy around us, surviving, genocide, rape, famine , disease, homelessness, joblessness, then death. Acknowledging life’s struggles does not make us ‘negative’ it makes us real and if you let yourself feel the sad you will better be able to appreciate the happy.

After I lost my daughter, so many women came up to me and told me about their losses, a women lost her son when he was 21, another suffered multiple miscarriages’ but never told anyone, so many stories, so many women that suffered alone because society made them feel like they had to hide their shame because it wasn’t ‘happy news’ I call bollocks! I will continue to share my grief and encourage others to share because we are here for such a short time, all we have is each other. To help, to love, to pick each other up and hug.

Namaste

Thanks for reading.

Sheri

3 years.

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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.