Tuesday, August 13, 2013

The Magnitude of our Loss

Sometimes I feel like my grief is too much. Not too much in the sense that it's more than I can deal with (sometimes, it is). Sometimes, I feel like it's over the top and over dramatic.

Sometimes, I feel like it makes me crazy. Like I should be over it, or at least it should be lessening.

But then I remember the magnitude of our loss.

It wasn't just that we lost a baby.

Our loss was so much more than that.

It was traumatic. 

It started with a hemorrhage. I bled throughout my entire pregnancy. In the ER, I was told that the baby died. That was the first loss. But then, they changed their mind, the baby was still there. It was alive and well and swimming around safely in my womb. In one moment, I went from grieving and in the next, celebrating. Trauma.

But then, I was told it was just a matter of time. My hemorrhage was large and eventually the baby would go to sleep and never wake up. It was just a matter of time before the blood supply was cut off. I waited and I waited. I spent every moment wondering if that was the moment that my baby died. I laid on the couch through a kitchen fire and remodel- watching my husband care for our 2 children, work full time, and repair the fire damage to our home. I was helpless, but determined to do anything I could to save the life growing inside me- as if his life was truly up to me to save. I was told that our goal was to get him to 23 weeks and then we would prepare for an early delivery. Trauma.

And then, just weeks after gushing ungodly amounts of blood, and spending 2 months bleeding, we were told that our baby had the most severe heart defect a person could have. Without multiple open heart interventions, and life long care, he would die. We were given the option to abort, pursue the surgeries, or provide palliative care. I was poked and prodded and given an amniocentesis to determine any chromosomal abnormalities. I was told that if our baby survived the pregnancy, he would need intervention immediately. I wouldn't be able to nurse him. I wouldn't even be able to hold him. Trauma.

And then he was born. We had to travel 2 hours away to deliver him. We had to find care for our other children. We had to find housing for ourselves while our son was cared for. We had to give up our firsts- the doctors fed him through a tube, the nurses changed his first diaper, he was whisked away to the NICU before I even got to smell his sweet head or hear his first cry. I didn't get to see him for 3 hours after he was born, and he wasn't brought to me- I had to go to him and lean awkwardly over his bassinet on wobbly post birth and post epidural legs. Trauma.

And then came handing him over to the surgeon. At that point in time, I had only held him for, at most, an hour. My children only got to spend literally minutes with him. He had a 40%-60% chance of surviving the surgery that lasted 6-8 hours. He was 3 days old. Trauma.

Shane's first time holding him.

My first time holding him.

Caleb and Hannah's first time seeing him.

We watched his heart beat inside his chest. Trauma.

We helplessly watched him code 3 times. Trauma.

We watched the nurses administer paralytic drugs and narcotics so powerful that he would shake and sweat when he came off of them. We watched our infant son withdraw from Methadone. Trauma.

We watched him choke and turn blue when he tried to eat. Trauma.

We watched him poked and prodded. Bruised from all the needle sticks.  Trauma.

Our family was seperated for 2 months. Over a hundred miles between us. Shane, working full time and caring for a 2 and 4 year old. Me, fighting with the social worker for meal tickets and a place to sleep to be near my baby, trying to convince her and others that I did not need to go home- I needed to stay there with my baby. I had to choose between time with my husband and older children, and time with my sick baby. Trauma. 

And then, finally, after watching him struggle, I watched my child die. Trauma.

Holding him just moments after he died, waiting for Shane to arrive at the hospital.

I watched him die. Not only did I watch him die, but I had to make the phone call to my husband who was at work two hours away and tell him that his son, that he had only seen a handful of times, was dead. Trauma.

I carried his lifeless and cold body in my lap, in the van, for 2 hours. We carried our dead baby into our living room to tell our unexpecting children that their baby brother was not home to stay- he was gone. He was never coming back. Trauma.

Carrying him in my lap on the way home.

I watched my husband carry his tiny 24 inch casket out to the hearse waiting for him. I watched my children try to comprehend what was going on. I begged the funeral director to allow us to have an open casket, even though his body was already showing signs of death.  I watched the line of people form in a room with gold plated birds hanging on the wall with ugly wallpaper, all there to see my lifeless child- the first and only time most ever got to see him. The last time we would ever get to see him. I hugged as many people as I could, despite the pain in my breasts from engorgement. Knowing that I would need to let my milk dry up because there was no baby to feed. I could not bring myself to pump again- I had done it for 2 months straight. I bound myself tightly with an ace bandage and some towels and cried for 3 days because of the pain of engorgement and the pain of our loss. Trauma.

I donated all of my frozen milk to the Indiana Mother's Milk Bank. 

And then, we endured the attacks. The attacks of strangers who accused us of killing our child. The attacks of strangers who told us we deserved for our baby to die. The attacks of strangers who called the coroner "on our behalf"requesting an autopsy. The attacks of strangers who called our local newspapers, which in turn called for an interview about what happened, literally moments after we came home from planning his funeral. Our son's pictures were stolen, and his name, along with my name became forever "Google-able," for a cause that we didn't and continue to not want any part of. Trauma.

So when I talk about my grief, I'm not just talking about Joshua's death. I'm talking about trauma. Unimaginable trauma and loss.

When I'm in church and sobbing so hard that my body is convulsing, or when I share that I feel like I'm drowning in anxiety and grief, this is why.

The magnitude of our loss is sometimes incomprehensible to me.


Anonymous said...

Thank you for sharing, Jill. Thank you for the graphic pictures. I am a firm believer in staring things down that are upsetting, instead of turning away. The cyberbullying you went through was terrible. I have a friend right now going through some extreme cyber bullying, but she did not loose a child. I grieve for my friend (boyfriend?) but he was not my child. You have a lot of strength. Sometimes, I worry about your church family telling you "if you just had enough faith", you would... xyz. Don't let them tell you that. You have a lot of faith, more than me! I just worry about this because it was my experience in the church. I hope they are there for you. Have a great day today. Is it nice out where you live? Probably not if it's anything like 10000 degree Texas. Take your kids to a beautiful park maybe. I'll be thinking of you.

The Real Life of a Red Head said...

Our new church has been wonderful about accepting our grief and struggles. This new church has never told us that we needed to have more faith or "get over it". They have actually been very good about reminding us that it's ok to grieve and it's ok to question.

I appreciate your support and your love, Danielle. You have always been so kind to me. <3

Beverley said...

You are right this is huge...perhaps one day I can give you a real hug! {{{Jill}}}

The Price Family! said...

Such a beautiful post. The pictures are so real and show your raw grief. Grief that no mother should ever have to face. My heart broke looking at the picture of you holding your precious son on the ride home. I too held my son for over a hour drive home. To me that was some how the longest yet shortest hour of my life. I have been reading your blog for a while and though I don't always comment for not having the words. I do pray and wonder about your family a lot.

Christine said...

*HUG* Very well written, I think of you often.

Auntie M said...

Oh Jill! I'm weeping with you/for you!!!! How did I not know about your hemorrhage? How scary that must have been! And then a house fire in the midst of it all? And the "Happy Holidays" card from the milk donation place???? I want to call them ask them why they would do that? Don't they know why mothers donate? It's not typically out of an overabundance of milk due to joy! And don't get me started on those bleepidy-bleeps...
I wish I could just wrap my arms around you and weep with you for all your trauma, all your loss, all your sorrows, all your grief. I may not be there with you, but I do grieve with you.
I also wish I could sit with you and just look at pictures of Joshie--it seems each time you write about him, there are new pictures I've not seen. I love the 3D image (or is that 4D?. He looks like he has his arms wrapped around you and even there, I can see how much he looks like his big sister!
The pictures of his little heart beating in his open chest never fail to amaze me: 56 of the most courageous days lived were fulfilled by your child...
And by your family, too, really. Having to be separated, watching Joshie go through all he went through. That picture of Caleb holding Joshua--breaks my heart Jill, it truly does.
And now your courage in the face of loss and trauma--because simply carrying on is courageous, but you don't just do that, your family carries on and then some: your children's lives are filled with joy & love & comfort & a feeling of safety, despite having lost a sibling. That's because their parents are unbelievable.
I know sometimes you feel you are drowning tossed around in this sea of grief without a lifeboat or life-vest in sight, but honey, to those of us looking in, we see a family and a woman constantly preserved by the God of mercy who understands the intensity of grief. Who knows what it is like to be mocked and made to suffer and to lose a son. And despite the waves thrashing at you and trying to keep your head under water, those waves cannot tear you from His grip.
I love you and am here for you if you need anything!!! I don't sleep much at night lately--you can always call, text, email, FB/pm, send smoke signals, whatever. I wish I could just reach through this screen and be there with you....

Ambra Montoya said...

I cant even imagine how it really feels to live past this horrible trauma. I lost my best friend to suicide,and had a miscarriage at 4 months which i knew about since the baby was not alive.. but your experience is much different. I began to have PTSD attacks after my best friend died.. I still get them even though he is no longer the only thought in my mind 16 years later. Sometimes if I think about losing one of my kids,I feel panicked and even have to take Ativan for such panic attacks as the ones that make it impossible to breathe,fainting and shaking and grabbing my chest because it feels like a heart attack. Please believe time can make things a lot easier to cope with.. because it will. Dont turn to drugs or drinking mainly because the come down makes it feel even worse. Travel, do speeches, volunteer, exercise.. that's the treatment. And remember so many others have been in your shoes basically... stay peaceful and loving and live your life with beauty and care... sending love from a stranger in Colorado..

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