Capture your grief - Day 14. BELIEFS + SPIRITUALITY

14. BELIEFS + SPIRITUALITY | Has the death of your child strengthened or changed your beliefs? Share as much or as little as you like. Please be respectful to the beliefs of others today. We are all in this together and our differences are what make this project so beautifully interesting. Choose kindness.

The death of Charis strengthened my beliefs. I think it is natural for people to ponder, "why did this happen to me," "I don't deserve this," "my child deserved to live," "heaven doesn't need another angel because I need her here," etc. I quickly stopped questioning God why it happened to me. I don't think I will ever get a complete answer here on Earth. 

Firstly, Jesus mentioned that there will be suffering in the world, but fear not, for He has conquered the world because Jesus, holy and unblemished, died and rose again to atone for our Sin thereby restoring our relationship with God.  

Secondly, my Heavenly Father knows the sorrow that I have because in His case, He sent His son to die for us, who aren't deserving, who are rebellious, who are forgetful of His love, grace and faithfulness. So why then do I need to question God why He allowed me to experience conceiving Charis only to lose Charis?  

Thirdly, I learned to see that Charis, her genetic disorder, her short life on Earth, everything was all that I deserved. I saw how it was a privilege for God to have entrusted her and her limited precious time to me and Daryl. Charis allowed us to learn what it means to love and protect her in a way we've never done before, to learn to love and support each other more despite our differences, to experience the love from those around us, and now to use our experience to comfort those who encounter similar losses. 

I don't think I have lost her and I believe that she is just waiting for the day when I get to reunite with her in heaven and in God's embrace, for eternity. While I'm here on Earth, I'm simply struggling with the feelings of sadness stemming from her physical absence, my maternal instincts, etc.

In my sorrows and grief, I wrestled with God. I said to Him, "I know You don't give me more than what I can handle with Your power, but no more, no more... I know you want me to experience You, Your love, Your power, but I don't want to be so deeply hurt again. I can't handle it anymore." But God used my loss to experience Him so much more. 

- He showed me that He is the same God in life and in death - so I learned to accept that Charis is in the safest, loving place right now, and I don't need to be afraid of death because God will be there with me. 

- He showed me a glimpse of His Father heart for Jesus, His Father heart for us, and that he was willing to die for us. 

- He reminded me that suffering happens. That's just how it is as a human being, living on earth, where there is sin, natural disasters, political unrest and violence, pollution, etc. But the most important thing is that God never forsakes me, His hand always guides me... He KNOWS. 

- He constantly showed me His love, His faithfulness to those who follow Him and love Him. Just when I could barely hold on, He would sustain me immediately, always in my time of need.  that my momentary loss is worth my eternal gain of His companionship, of Charis' companionship. I just needed to be patient. 

When I started writing this blog a year and a half ago, I didn't know who it will reach. Recently, I heard from an old friend that she had just received a fatal diagnosis for her unborn baby when she first read my blog back in May. Reading my journey helped her feel less alone, helped her seek God's comfort as she carried her precious little fighter until he was born. Her baby is now with God and Charis. I suddenly felt so small in God's great plans for each and everyone of us. I didn't know how the blog could work, who it would reach, but God knew. God used my loss and the blog to bring comfort to others. Knowing this a year and half later, I am more encouraged than ever and more confident than ever in God's love, God's grace and God's sovereignty. 

Capture your grief - Day 11. CREATIVE HEARTWORK

11. CREATIVE HEARTWORK | Have you done anything special to memorialize your child? Maybe you got a tattoo or commissioned a piece of art to be created. Maybe you have a special piece of jewellery to remember them by or created a garden.

Some heartwork I have made to memorialize Charis include writing her name in the sand on beaches of faraway places that I visit, such as the one in my previous cover photo. It was challenging to try to write quick enough before her name got washed away by the waves. Her name in the sand was beautiful and fleeting, just like our Charis, but the memory of that scene lasts forever just like how Charis lives on in our hearts. It felt special to write her name, my love, in the sand. I never wrote Daryl's name in the sand, haha.

When it was our time research ways to conduct celebration of life/funeral/memorial for infants and children, we came across various beautiful child loss poems but none really quite described our story. Daryl thought we should write a poem just for Charis. Mind you we haven't written any poems since high school English class... but thank God the words just flowed out of our hearts. Below is the poem we wrote for Charis' celebration of life / memorial.

Capture your grief - Day 10. SYMBOLS + SIGNS

Do you have a symbol that represents your child? Maybe it is a butterfly, tree or bird etc. Share how you came to find that symbol and what it means to you. Do you believe your children send you signs at all? Have you had any? How did they help you?

. Bunnies

I always imagined my sweet Charis to be a cute little bunny. In fact, her flat nose (cartilage and bone formation was an issue for Charis' genetic condition), reminded me so much of a bunny's cute little wriggly nose. Bunnies are naturally prey animals, needing love and protection. I just wanted to protect my little bubbles, my little Charis all my life. When I take care of my pet bunnies, and hold my pet bunnies, I dream of how sweet and cute my Charis could have been. I also never go anywhere far without Charis' stuffed bunny.







. Bubbles

Bubbles always remind me of Charis, as it was her nickname. At her graveside memorial, our friends and families sent loving wishes to her and to their loved ones, as they blew bubbles and watched the bubbles rose to the sky. When I visit Charis, I bring a bubble stick with me and blow her bubbles, watching these bubbles float to other children's graves, down to the grass, and up to the sky. I think of her in heaven with the other little angels.






. Light

Whenever we miss Charis, we light a candle. We picked up this habit when we first learned of the International Wave of Light last October, when parents, grandparents and families across the entire globe would light a candle or create a candle-lit art to remember our babies in heaven. Whenever I miss her, I grab one of these mason jars, light a candle and place it on my bedside table as I read, talk to Daryl, or just simply lie in bed and think of her. She is my light. She reminds me that even during suffering and pain, that there is always God's grace and hope.

Capture your grief - Day 5. THE UNSPOKEN

Normalizing grief is so important and that I why today I am calling upon those who feel brave enough to speak about the nitty gritty side of grief. Share something about your grief journey that you might feel is strange or not common. It might be something you do to remember your children by or maybe it is something you fear about the future. Often while grieving we have feelings of isolation because we fear judgement that what we are feeling isn’t normal. But it is amazing to see just how many people feel the same way. When others stand up and express how they feel through sharing their experiences, it allows us to say “Hey, I feel that way too!” and the fear of feeling like we are crazy is lifted and in some cases embraced!

Grief at its darkest

Initially after Charis passed away, my strongest connection to Charis was the sadness, the emptiness that I felt. There were moments that I wished I could have died with her. The initial days and weeks were so dark and so incomplete without Charis. As we prepared for Charis' memorial logistics, slideshow, eulogy, song dedication, there was so much ache and sadness but the desire to create this last little piece of memory of Charis kept us powering through these preparations. On the day of Charis' memorial, I remember walking into church and setting up Charis' memorial table... and then seeing my mom walk in, then progressed to touch each little piece of item that reminded us of Charis, the bunny, the photo, the tiny single pink rose, and her knitted booties as she sobbed uncontrollably. I wanted to break down with her there and then, without caring about what was happening around me. I composed myself to hold my mom and lead her to sit down. Then came my dad and brother. My dad sat down at the pews at the front of church, staring at Charis' memorial program, with tears quietly rolling down his cheeks. Most of the memorial, I just felt numb. The flowers and the warm embrace from all those who attended helped us get through the day when I said my last goodbye to Charis. The grief didn't end there though of course.

I remember one evening, Daryl and I went to visit Charis' resting place because I missed her terribly that day but didn't have a car to go visit her. When we arrived, we learned that the cemetery was already closed with the changing seasons and earlier sunset times. I was so mad and tearful and bitter as we stood at the gate to the cemetery because I thought, "I miss MY daughter so much but I can't even visit MY daughter whenever I wanted or needed." I knew the cemetery had its own rules that I needed to follow and Daryl reiterate that this is merely Charis' body's resting place and that she lives in our hearts and in heaven, but not here. I just couldn't help but feel this way. Her body is hers; her now dead body was once a part of me; this is her right here and I can't reach her.

For a while, feeling sad was the only way I knew I could miss her, the only way to keep remembering her, even though I knew my memory of her should also be positive and happy because of all the great things she has brought to us. My feelings just weren't in sync with my mind. Initially such sadness almost consumed me, and controlled my day to day life. Although I promised God and Charis that I would treasure each day, I was too down to do anything besides talking to visitors, talking to Daryl, reading infant loss books, praying, listening to Charis' music playlist, and looking at Charis' photos over and over again.  Oftentimes, I just curled up in bed, holding on to her stuffed toy bunny and quilt that once wrapped her warm body... or I escaped the reality by watching hours and hours of Netflix/Shomi. There were often days and moments where I couldn't bear the sorrow, that I eventually unconsciously numbed any feelings. I switch between feeling absolutely suffocatingly sad to feeling absolutely nothing when looking at pictures of infants, hearing infants' cries, holding infants, looking through Charis' photos, talking about how I was doing... Just. Hollow. It was my body's way of protecting myself. I still have these days and sometimes they sneak up on me without my knowing until I suddenly realised my avoidance behaviours and lack of energy and motivation for anything at all. Thankfully, these days are not as often as before, now that I have been practicing to allow myself to feel the grief, face the grief, and integrate the grief into my life.

Normalising grief

One of the most stinging comments that some people, who knew about my loss, have made was one of those, "when you have kids, you'd appreciate the hour long train ride home from work all to yourself." First of all, I do have a kid, but I didn't get to bring my kid home like you could; and second of all, I don't understand how you feel because all I wish is to have more time with my baby. Although I have accepted that Charis' life on earth would be short, and that she is resting in peace in a better place, that doesn't mean I don't crave for her presence, or yearn for more time with her. Parenthood doesn't only pertain to those who have kids to show, who have kids at home. So don't say to me, "when you have kids.." as though this is how I ought to feel if I have a kid at home because there are many - PLENTY visible and silent "lossmoms" and "lossdads" out there who have miscarried, who have a stillborn, who have lost a child, or whose child is fighting a serious illness that keeps them in a hospital or that may take away their lives. Parenthood is different for everyone. 

So don't say if we have kids, we would like some alone time from them because all we would want is time. More time.

I noticed that I usually give socially acceptable responses to insensitive comments because I don't want my grief to inconvenience others. I am always concerned that my grief, my new life journey, makes others uncomfortable because they don't understand how I feel, they don't know how to respond, or they aren't prepared to hear something many grief-stricken people suffer silently. This then silenced me - it silenced my ability to voice my own opinion, just like anyone else who are free to voice their opinion based on their own personality, values, experiences, etc. Despite knowing the importance and the difference that I could make by breaking the silence surrounding infant loss, I chose to not voice my opinion, which may not flow with the social norm, for fear of others' reactions. 

I am learning to break this silence, educating others of how grief can affect one's life, values, and decisions, starting with my own grief journey.

Capture your grief - Day 4. SUPPORT CIRCLES

Have you felt supported in this journey of grief and healing? Maybe it is a friend, family member or organisation that has been there for you. Share how they have helped you and let them know how grateful you are. Please feel welcome to post links if you would like to share about a charity or support group.

Daryl:

I can't thank Daryl enough for his support. As we learned of Charis' diagnosis, he didn't even have time to stop and grieve because he was so focused on making sure I was okay.  He did more chores around the house without any grumbling, without making me feel guilty.  He took time off to see my grief counsellor with me, or when I was feeling really down.  He reminded me of God's love, grace, and purpose when I have lost sight of hope at times. He led our household with Christ's love. I can't imagine doing this without him.

My parents: My parents prayed for Charis and my family, and it touches me that they remember Charis with me by visiting her every Sunday after church, and singing her a new hymn each time. I honestly don't dare to find out how often my mom and dad cried behind closed doors for me, for Daryl, and for Charis. Many people remember to ask the bereaved mothers how they are doing but tend to forget that the dads and grandparents are grieving too. They too have intense longing, they too may have regrets, they too may feel guilt, they too have lost the dreams they had for their grandchild.

My church fellowship: My fellowship has heard me talk about my struggles countless of times and watched my growth through this entire journey from the very beginning. When I couldn't support Daryl, they were his support.  Our fellowship is really young, in terms of life stage, we are mostly working, only a few of us are married, and only one couple have kids other than me and Daryl. Although they may not understand how we are feeling,  they showed us their love through actions. Almost every prayer meeting before fellowship they prayed for us. Every time I see the handmade rainbow baby mobile or the "Charis" picture frame they made, I think of how they acknowledged Charis' importantance, how they stood by us through our joy and pain.

My friends:  My other friends supported me when they asked me how I was doing, because they genuinely wanted to know how I was really doing and were prepared listen, prepared for my tears, and prepared for anything that I would tell them.. Some friends who were only acquaintances approached me to let me know that they, too, have endured childloss and made themselves available to talk. Some also encouraged me to keep facing my grief. I think the most helpful thing  that these friends did was to not expect me to get over my grief by now (because you can't possibly get over grief, ever. I'll leave that for another time), to not expect me to return to who I used to be but accept who I am today, "Cindy with Charis."

My work family: I am so blessed to work with some of the most empathetic people at work. Some knew the details of my pregnancy from the very beginning, while others learned of my situation around the time I went on sick EI or around the time of Charis' memorial. Throughout this time, my co-workers shared my worries, provided affirmation, and shed tears for me. As I returned to work, they supported me by reminding me that they haven't forgotten my loss, making sure I was okay whenever I tried to perform nursing tasks with infants, and taking on another infant assignment when I haven't able to do so yet. I wanted to recover faster to do more, but my colleagues and case manager reassured me to not rush through my recovery. They gave me my Charis heart-shaped necklace, which I wear and keep close to my heart everyday. I really can't ask for a better employer, a better work family. #pedsnurselove #lovesickkids


At the hospital, the social worker provided a list of support groups in the community. Honestly, I didn't find it suitable for me. Instead I found support from blogs of other bereaved parents, facebook support groups. Reading their stories made me feel like I wasn't alone, gave me hope that healing is possible, prepared me for certain awkward circumstances, and gave me moments of "I feel that way too." 

Some blogs and Facebook groups that helped me were: 
About Stillbirthdays
http://stillbirthday.com/about-stillbirthday/

Now I lay me down to sleep: non-profit organization that sends amazing, empathetic and professional volunteer photographers who are simply there to help you capture the precious short moments with your baby. You may not want to photograph your baby in your sadness right now, but many parents have never regretted having these photographs.
https://www.nowilaymedowntosleep.org/

Lexi Berndt - Scribbles and crumbs: photographer and blogger who writes beautiful entries about her journey with childloss. Beautiful quotes and pictures that really just hit home. Also a community of bereaved parents on the facebook group
http://www.scribblesandcrumbs.com/ or her https://www.facebook.com/scribblesandcrumbs/

All that love can do: for parents who decide to carry on with pregnancy despite poor prognosis. 
https://www.facebook.com/AllThatLoveCanDo/

Project Heal: community of bereaved parents gather, share stories and momentos done for their babies
https://www.facebook.com/CarlyMarieProjectHeal/

Perinatal Hospice
https://www.facebook.com/PerinatalHospice/

We are Stillmothers: community of mothers who do not have living children
https://www.facebook.com/wearestillmothers/

Capture your grief - Day 3 WHAT IT FELT LIKE

In honour of this month of awareness today we give the outside world some insight into what it is like to be a bereaved parent by sharing what a certain experience that you had during your grief journey. This can be a positive or negative (or both) experience. Some experiences that you could share about are what it felt like to hear the words “There is no heartbeat” or maybe you had an experience where someone did something very special in memory of your children. Pick a moment and share how it made you feel.

I read over today's topic many times, and I still don't know how I could pick one moment and share how it made me feel. Throughout this entire journey and up to this day, my emotions fluctuated from feeling absolutely nothing and numb, to feeling everything - feeling an ache so strong as though my heart was being torn out of my chest, my knees so weak and heavy till I kneel on the ground and at times a peace that I could only find in the promise of God's love...  that God's love for Bubbles or any human being, is not measured by the number of days one has lived and breathed on this Earth, not measured by how able or talented one is, but simply because one was created.

I started to grieve as I learned of Charis' diagnosis and prognosis. In general, people usually congratulate you and are excited for you when they find out you are pregnant. For me, I had a difficult time telling people I was pregnant - I didn't know how to face their elated happy expressions upon hearing the news, then shattering their excitement by explaining that we were also anticipating the death of our baby.  So, I didn't post any photos during my pregnancy on Facebook because 1) I didn't want to endure such conflicting emotions in overwhelming numbers on social media; 2)  I didn't know how to be completely honest on social media, since people feel uncomfortable talking about infant death, seeing photos of infants with congenital abnormalities (some parents' posts of these photos have been removed by FB before), etc.  This isolated myself from some friends and overseas relatives, who didn't know I was carrying Charis until I saw them in person, or until it was Charis' birth announcement.

Opening up about our decision to carry Charis despite her poor prognosis and dealing with different reactions were emotionally draining, but inviting others into our lives made us feel like we weren't going through such challenging circumstances alone. Our friends and family didn't really know how to respond, or how to fix things, because we couldn't possibly fix anything. However, we felt so much love and support because of this. And when you can talk to such friends about such important, heavy-laden circumstances, and such friends stick by you, listen to you and comfort you, these friends are treasure.

I once saw some memes of babies and rude comments that some people on Facebook made about a picture of a baby and I became saddened to think of what others would say about Charis, how they may judge her appearance because of her syndrome. I thought that no one would call her beautiful, cute and maybe others couldn't bear to look at her. Daryl comforted me and reminded me, maybe we need to learn and remind ourselves to determine beauty, not through the eyes of the world, but through the eyes of our God.

On the day of her birth, which was also the day of her death, I wished that she could just stay inside me, stay alive with her heart beating inside me a little longer.  I wished her heart and lungs weren't failing from hydrops. I wished time would stop. My labour was complicated, and long story short, after 24 hours of labour, two failed epidurals, I underwent a C-section under general anesthesics and Charis was born. Daryl was the first to hold her. I remember waking up from the anesthetics in my own L&D room, two nurses by my side, I was still on oxygen, very sedated, and asked for Charis. Daryl passed her to me, and I was so in love when I saw her. Note: I am a pediatric nurse, I am trained to naturally look for signs of abnormality. When I saw her, I didn't care for the defects of her skull, her nose or ears, her limbs... in fact, they all seem so normal to me, it was a part of her and she made me love all of her.  I was just so excited to meet her. While the NILMDTS photographer took pictures for us, I settled down, starred into Charis' peaceful face, and felt a sudden pang of sadness and yearning. Hoping that she would wake up in my arms. Afterwards, friends poured into my room and we passed Charis around. Moments later I could hear another infant's cries in another room. It didn't hit me that my baby wasn't crying, wasn't breathing, wasn't alive. I was just so in love and happy that I could actually hold my own baby in my arms.

Capture your grief - Day 2 WHO THEY ARE

Share about your beautiful children today. Who are they? When were they born? How long did you have them for? What is their name? Share as much or as little as you feel comfortable with.

My beautiful baby girl was born on May 28, 2015. 

We nicknamed her Bubbles when her first ultrasound revealed something called cystic hygroma, which looked like clusters of grapes, from the back of her head down to her bum. We later learned that she had a rare form of lethal skeletal dysplasia.

We waited 31 weeks to meet her. She fought to stay with us for an additional 19 weeks that her condition would not have permitted. I got know that her favourite things were cherries, daddy's belly rubs, daddy's unrefined tunes on the harmonica (haha), and worship songs (Chris Tomlin's Army of Angels and Jesus loves me, and Crowder's Come as you are). She then chose to enter this world asleep, so, so peacefully. I couldn't believe that I could actually meet our little warrior face to face, hold her, stroke her thick tuff of jet black hair, caress her little hands and feet, see which of her features came from me or Daryl... much more than what we could hope for. 

We held and kissed her still, small, delicate body for short periods of time for 48 hours before we said our final goodbyes, took our last family photo together, then wistfully let go of her into the hands of a nurse.

Of course anyone of sound mind would wish for a healthy baby, but if I were given the chance to do over, I honestly wouldn't have changed anything about her. Some people expressed that she was blessed to be loved by me and Daryl, but I truly, honestly, felt that I didn't deserve her, and that I was the blessed one because she gave me so much more than what I could give to her.

We ended up naming her "Charis" (pronounced as "care"-"riss"), a Greek Biblical word meaning grace, gift from God. She was truly a special gift. Not everyone would understand how she could be, but God knows, we know.

#Charisyiu #whathealsyou #captureyourgrief #captureyourgrief2016#bereavedparents #whatlovecando #Heknowsmyname #loveconquersall#achondrogenesis #achondrogenesistype2

Capture your grief 2016

October is pregnancy and infant loss month, raising awareness of how common such loss is and supporting grieving parents and families. It's been a long 19 months since I first began my grief story... anticipating the future loss of my Charis, to surviving my short hello-goodbye moment with Charis, to learning to breathe through my loss of Charis. 

I have mentioned grief and peri-natal loss on social media and sometimes I feel as though I have to keep holding back on such post because I feel like it's too "morbid" or "uncomfortable" for my FB friends to bare. 

This month, this year, I'm trying something challenging and different by participating in "Capture Your Grief" project that inspires a month of mindful approach to facing grief and healing. I hope to use it as a way for me to explore hidden areas in my heart, that I have been fearful to tread to, afraid of what I might find, afraid of my own reaction. And as I post some of my thoughts, I hope I may reach out to others who are also grieving, or become the voice for those who are silenced and share the similar thoughts and experiences. 

#captureyourgrief #whathealsyou 
http://carlymarieprojectheal.com/capture-your-grief-2016