Capture Your Grief - Day 20

Day 20: Hope
(Do you have hope for the future? What do you hope for those who will join this club in the future)

I do have hope. I have lots of hope. I have to or I won't get out of bed to face another day. I have hope that my boys will grow up knowing how loved and precious they are. I have hope that the things we are going through now will be able to help give someone else hope. I have to believe that this isn't all for nothing and that good will come out of Carter's life. 

The hope I have for other parents who may be facing loss is that they are supported in even greater ways. I hope that their baby's life is validated. I hope they are giving the opportunity to spend time with their baby and to make as many memories as they can in a short amount of time. I hope that the healthcare system and those involved in it can be kinder in the words spoken and actions taken. I hope that people can be more aware of their words and how much they can affect grieving families. I hope families know that they are allowed to grieve their baby(ies). I hope that no one ever tells them to "get over it" or to "move on". I hope that families can find support and love to get them through the hardest time of their life. 

Capture Your Grief - Days 16 & 17

Day 16: Seasons

All of my babies have been born in the early summer. When I was pregnant with the twins I would always think about how huge I would be and wonder how I would possibly make it through the summer (I was due in Sept). Little did I know that I wouldn't get a chance to be miserable all summer. I ended up on bedrest in May, ended up in the hospital, and then delivered, all before summer even officially arrived.

There are also seasons of grief, some "harder" or "easier" than others. Seasons when the yearly anniversaries come up and I spend many of my days remembering the moments or tearing up a little more than usual or the holidays where I wish our whole family was here to celebrate. And then there are seasons where I am able to be so thankful for the changes Carter's life brought about in my own life and those around us.

Day 17: Time

Even though there are a set number of hours in the day, days in a month, and months in a year, time never seems to take up the same amount of space. A year seems so short and so long at the same time. Can it really have been two years since I last held Carter in my arms? And at the same time, has it only been two years? It seems like I have spent a lifetime without him. Somehow the days stretch into months and the months into years and life keeps moving whether I want it to or not.

Capture Your Grief - Day 18: Release

The prompt for the day was this: What do you want to let go of on this journey of grief? Is it fear? Guilt? Worry? Deep sadness? Regrets?

Death affects people in profound ways. Especially when it's someone who isn't supposed to die. It touches every part of my life, some for good and some that I wish I could let go of.

I worry about my babies. I know all parents do to some degree, but sometimes the fear of losing them is too much for me. I can't let Ezra sleep in our front room because I am genuinely afraid that something will happen to him and I will be too far away to protect him. I still go in to make sure Cohen is breathing at night. Ezra fell deep asleep one day and he wasn't moving. I made Danny go and try to rouse him because I couldn't bear the thought of having to find him no longer alive. It sounds morbid and paranoid, and sometimes, I am. Losing my child is a feeling that I never want to have to experience again.

I regret not spending more time with Carter, although I know no amount of time other than a lifetime would be enough. I want to let go of the irritation I feel for the people who didn't walk me through bathing Carter and holding him skin to skin and making molds of his hands and feet. Those are moments that I could have had that I will never get back. And I am sad that I didn't get those chances.

I do have deep sadness and while there are days that I just want to go back to not knowing that sadness, I also know that while it hurts, it reminds me how deeply I have loved someone. This whole grief journey wouldn't be so very painful if it wasn't about something that was so precious to me.

Capture Your Grief - Day 12 & 13

Day 12: Article

I've read lots of articles. The one that has stuck with the most is this one from the Center for Loss in Multiple Birth. Grieving the loss of a multiple is such a unique experience in that you are grieving for a lost baby and celebrating for a living baby. You are in anguish for the parent you don't get to be while trying to be the parent you do get to be. You are saying goodbye to "twins" and the life you thought you would have and getting used to words like "surviving twin" or "single twin".

From the CLIMB website:

"One twin" – it seems like a contradiction in terms...It was not something we ever would have imagined at the time of learning that we were expecting twin babies, and everything became "twos". Yet for so many of us, because of the high risks in pregnancy and birth, it is the way it turned out: we have one to care for and raise while missing and mourning for his or her twin. We experience all the realities of becoming a parent at the very same time as all the realities of becoming a bereaved parent, and all in one package. Not this year and next year, but all at once now, and "my twins". We grieve for our baby and for our twins being together, and we worry about the impacts on our survivor. It is often a deeply sad, confusing, and physically and emotionally exhausting time. We're the last ones who need to be told to be grateful when a baby lives – yet finding joy in our survivor can be a huge challenge, for so many reasons, even though we need and want to all the more, and want our child to be happy.

As if this weren't enough, many of us experience feeling like we don't fit in anywhere, and that no one understands what we are having to go through and cope with. We also usually receive comments by others who may mean well but aren't trying to "get it", urging us to downplay or even deny our loss. (Like we want to hurt so much – but it hurts more to act like this baby was the only one or that our other child didn't matter.) With all the attention paid to living multiples, and little shown of the risks and realities, it is also easy to feel that we truly are the only one and are much more unique than (sadly) we actually are.

Just when others think we are or should be doing fine, is often when we need the most support. Because of all the realities and pressures of caring for a newborn (and for many, having a tiny survivor who is in the NICU) none of us is in the position of being able to "only" grieve, as painful as that is. Many of us find that the grieving process really begins when we bring our survivor home, and for many of us that means after weeks or months in the NICU (and just when others might think everything would be "normal" now). Later also there are pressures from others and from within ourselves to be "fine", to be coping, to not expect to spend much time thinking about our baby who died or doing what we need to do in relation to him or her. Sometimes we get used to putting our grief to the side and then it can seem scary to get in touch with it when we do have the opportunity or the need.

But – we have the same amount of grief as anyone who loses a baby, plus the grief for "my twins" and the concern for our survivor, and so it gets stretched out over a fairly long period of time – longer, not shorter because of having a survivor, and complicated, not "easier". Besides our sheer feelings of losing our baby, we have a great deal to re-live and process emotionally, mentally, spiritually, and even physically about what happened, "why" it happened, and how to somehow integrate it all into our ongoing life. While all that is going on, we are dealing with a birthday which is also the birthday, and then the anniversary, of our twin who died...other landmarks and day-to-day reminders...issues about talking to our survivor and about what they may be feeling, and similar for any older children we may have...and often, issues about another pregnancy.

All of this is a big order, especially when we think we're supposed to do it without appearing to be, and without support. We don't recommend you try it alone! and hope that this section and others in this site will be helpful in some way. This section is focused on the loss of a twin during pregnancy, at birth, or in the days or weeks after birth. Also in this site are sections on the loss of a twin or multiple to SIDS (which is relevant to other sudden losses in infancy), and the loss of an "older" twin or multiple (after the age of 1). The section If You're Pregnant Now focuses on the needs of those who learn during pregnancy that one of their multiples has died ("going longer"), or will not survive past birth ("knowing ahead"), or who are pregnant after one twin has born born prematurely and died ("delayed interval delivery"). Also, we are in the process of constructing a section on raising and talking to surviving twins and multiples.

Day 13: Books

In their grief, some people go straight to books. I was trying to juggle the NICU and other things so I didn't have a ton of time to read. The two books I found most helpful were "Heaven is for Real" by Todd Burpo and "A Grace Disguised" by Jerry Sittser. I highly recommend both of these books. 

 

Capture Your Grief: Day 11 - Triggers

Day 11: Triggers

My major trigger is seeing twin boys. It's like a knife in my heart or a punch in the gut, or both at once. Every time. Part of me can't help but stare when I see them and the other part tells me to run and get as far away as I can. I can see twin girls, or boy/girl twins and it's still hard, but obviously the twin boys are a different story. It's a painful reminder of what our life should have been like. What should have been for our boys. They should have had each other and we should have both of them. As much as my grief has changed, this is one thing that still gets me each time.

My babies at 20 weeks. One of the last ultrasound pictures we have of them together. We never got to see them together after they were born. The ultrasounds I have of both of my boys are some of my greatest treasures.

Capture Your Grief - Day 10: Beliefs

I know this can be a touchy subject for some, and I also know that not everyone shares my beliefs, but I would still like to share them.

God is good, all of the time. This was hard for me, like, really hard. How can a good God allow people's children to die? I struggle greatly with this, and I don't have all the answers. Sometimes we wrestle with wanting to know why. I have come to the conclusion that on this earth, I may never know that answer and that I will drive myself crazy trying to find the answer. I have chosen to try to focus on the fact that it happened and now I can choose what I make of it.

God has never left me. I have walked away from him and then accused him of leaving me, but he has never left. He has always been there, waiting for me to come back to him. Even if I've yelled at him, cursed him, accused him, or ignored him. He always takes me back. As I struggle with those emotions, I have one of two choices. I choose to believe that everything I've said to be true is true, or I can call it all a bunch of lies and walk away. I've been in both places. But in those dark, hopeless moments, he has always been there. Whether it's through a Bible verse, a friend, or him speaking to me, I know he's there.

Everything happens for a reason? I don't believe that God caused my child to die. I do believe that he allowed it, but I don't think he was sitting in heaven thinking that I looked like a mom who needed to lose her child to learn a lesson. This may be debatable among some of you, but in this moment, I don't believe that. I do believe that I can learn many lessons from my situation and find new purpose in my life. I believe that God uses these hard times to draw us closer to him and to reveal his truths to us if we are willing to see them. Good things can come out of hardship. But I don't think he was sitting around twiddling his thumbs and taking babies because "heaven needed another angel". My God is kind and compassionate and caring. He knows what it's like to watch his son suffer and die and he is there with me in my pain.

God can handle it. I have been angry (so, so angry). And God can handle that. He knows that we aren't perfect, and I don't think he has called us to blindly accept things as "the way they are". He has given us thoughts and emotions and choice and the freedom to explore those things. I have gone to those dark places, with thoughts and emotions that overtake me and threaten to upset everything I've ever known. And I always come back to God. And he can handle anything I can throw at him. 

This isn't it. I don't believe that this life is all there is. I find it sad to know that there are people that believe this life is all there is. If it is, then what's the point? We die and it's just...over? We struggle and grow and change and affect others, all for nothing? I know that when I die, I will go to heaven. I will be reunited with my loved ones, I will be free from hurt and pain, and mostly importantly, I will get to see God. I can't wait. I also know that Carter is in heaven. And some days, that is the only thing that brings me comfort. He is there not because of anything I did or he did, but because of Jesus. Because he has taken away all of our sins, my baby can be with him forever. And that's pretty much the best thing I've ever heard.

So there you have it. I'm not perfect, I don't have all the answers, but I do know that God exists and that he has a plan for my life.

Also, this article has been circulating that I found very interesting about the ole "God won't give you more than you can handle" issue.

Capture Your Grief - Day 9: Music

Rascal Flatts - Won't Let Go

Favorite Lyrics:

I will stand by you
I will help you through
When you've done all you can do
If you can't cope
I will dry your eyes
I will fight your fight
I will hold you tight
And I won't let go

I love this song for not only Carter, but for Cohen as well. I will never let go of any of my babies for as long as I live. I cry every time I hear this song.

Mercy Me - The Hurt and the Healer

Favorite Lyrics:

So here I am
What's left of me
Where glory meets my suffering

I'm alive
Even though a part of me has died
You take my heart and breathe it back to life
I fall into Your arms open wide
When the hurt and the healer collide

Breathe
Sometimes I feel it's all that I can do
Pain so deep that I can hardly move
Just keep my eyes completely fixed on You
Lord take hold and pull me through

So here I am
What's left of me
Where glory meets my suffering

This song. Everything about it, the lyrics describe this journey so well. This impossible journey that I could never walk without my Healer. 

Selah - I will Carry You

 Lyrics: 

There were photographs I wanted to take
Things I wanted to show you
Sing sweet lullabies, wipe your teary eyes
Who could love you like this?People say that I am brave but I’m not
Truth is I’m barely hanging on
But there’s a greater story
Written long before me
Because He loves you like this

So I will carry you
While your heart beats here
Long beyond the empty cradle
Through the coming years
I will carry you
All my life
And I will praise the One Who’s chosen me
To carry you

Such a short time
Such a long road
All this madness
But I know
That the silence
Has brought me to His voice
And He says…

I’ve shown her photographs of time beginning
Walked her through the parted seas
Angel lullabies, no more teary eyes
Who could love her like this?

I will carry you
While your heart beats here
Long beyond the empty cradle
Through the coming years
I will carry you
All your life
And I will praise the One Who’s chosen Me
To carry you

This song makes me cry every time. EVERY time. Written by a mom pregnant with a child that was not expected to live. Written by a mom who knows the pain of burying her baby. A mom that knows that Jesus is now carrying her child when she can't.

Capture Your Grief: Day 7 - You Now

I first saw the topic for this day and just thought Oh boy. How do I explain where I'm at? It's been two years but sometimes feels just like yesterday. I have come a long, long ways. I have been through the anger, the devastation, and the disbelief. I've wandered around in a daze, not knowing or caring what day it was. I've wondered how this could happen to us and why. I've questioned why people aren't more understanding and sometimes so insensitive. I feel like I've come so far sometimes, and not so far other times.

When I post about Carter or my grief, I hesitate. My head tells me that people are tired of hearing about it, but sometimes it just needs to come out. And I have always believed in being honest with people about what it's like to be a babyloss parent. The pain has definitely changed. It's still here and always will be, I will always feel the loss of my baby. Now instead of constant rip your heart out aching and longing, it comes in waves. A lot of times when I don't expect it, it sneaks up and washes over me, threatening to take me under. When it comes, I try to let myself "go there" and not just stuff it down. I think that has been a huge part of my healing is allowing myself to feel and be present in the pain which then allows me to continue moving forward. I have been so blessed in having family and friends that make a safe place for me to do that.

Carter will always be my child and I will always be living without him. I will always be wondering what he would be doing at which stage. Some days it makes me smile, other days it makes me cry. There are times I can think about Carter with joy that he is my child, and other times all I feel is the pain of his absence in my life.

That's where I am not. Still grieving, but living. Feeling the pain that means that I have lost something so special
in a big way. Trying to make the most of what we've been through and enjoying our life and my boys the best that I can.

Capture Your Grief: Days 4 & 5

Day 4: Legacy
When our babies aren't given the chance to leave their own legacy, we as their parents, want to leave one for them. We have donated many, many diapers in Carter's name and I love the idea that his name is written down and it's "out there" travelling the world.

However, I think the bigger legacy is us. Our family. We are forever changed because of Carter. He has made us slow down, be kinder, and love more. I think that is his legacy for us, to make the most of our lives that we have been given.

Day 5: Memory
I hate that I don't have more memories of Carter. Some of my favorite memories are how excited we were to be having twins. I loved getting to tell people that we were pregnant with two babies and watching their faces. And, of course, I will always treasure the memories I have of holding my son and studying his sweet face, trying to remember every detail of him, so tiny and perfect.

Capture Your Grief: Day 3 - Myths

"Time Heals All Wounds"

Nope. It doesn't. Time does heal wounds, but only to a certain extent. These are wounds that will never go away. Will they heal? Yes. Will I always be deeply scarred? Yes. This is one of my least favorite "meant to be comforting" statements. It is basically telling a grieving mom that someday, she will not feel pain about losing her child.

Think about it (even though it's hard). 

If your infant, toddler, teenager or grown child died, would you not be completely devastated? Would you want someone to tell you that eventually you'll get over it? I don't ever want to be over my son. Just like loving my living children, I will always love Carter as well. And I will always wish that he could be here with us. Time does change wounds, but it will never make them go away.

If you are interested, here's another post I wrote awhile back about words and their impact on a grieving family.

Capture Your Grief: Day 2 - Identity

2. Identity: What is your child’s name? Why did you chose that name? What is the meaning of their name? If they were born, what were their birth details. What were their features? Who are they?

Our Carter Garen was born on June 5, 2011, along with his twin brother Cohen. The boys were born at 25 weeks. Carter weighed 2 lbs and was 13 1/4 inches long.

He had the tiniest, longest fingers and toes. He had a perfect little nose and a mostly bald little head.  He was perfect in every way, except that his little body was too sick. When I look back at his pictures, he looks sick, but I don't remember him that way. I remember him as perfect and beautiful.

Who is he? He is our son. He is a twin and a brother. He is a grandson and nephew. He is our little boy. I don't know his personality, I don't know what he would look like today. I don't know what toys he would like. That is one of wounds that cut the deepest in my heart, is not knowing who he would be if he were here physically. I do know that in heaven, he is whole. He can run and jump and play and smile and laugh. I know that when I see him again, I will hold onto him for as long as he will let me.

Capture Your Grief 2013

October is Pregnancy and Infant Loss Awareness month. Last year I did the "Capture Your Grief" project and found it a very healing process. I will be doing my best to keep up with it this year. I found it interesting to look back at my posts from last year. Some things have changed and some things are still very similar.

Day 1: Sunrise
I wasn't up to see the sunrise today (or hardly any days). It's been so rainy the last week I'm not sure I would have seen one anyway. So I'll take a different perspective on the sunrise. These boys are my sunrise.

They are what get me out of bed every day and give me the strength and courage to keep moving. The sunrise brings a new day, which can sometimes seem so daunting in the midst of grief, but it can also be a chance to start new. To throw off whatever happened yesterday and have a fresh beginning and to make the most of the time I have with the ones that I love.