Delivering Dilen

My Path

2010-08-05T18:58:00.000-07:00

This was shared on my MISS board and describes our journey of loss so accurately.

This is my path. It was not a path of my choice, but it is a path I must walk mindfully with intention. It is a journey through grief that takes time. Every cell in my body aches and longs to be with my beloved child. I may be impatient, distracted, frustrating, and unfocused. I may get angry more easily, or I may seem hopeless. I will shed many, many, many tears. I won’t smile as often as my old self. Smiling hurts now. Most everything hurts some days, even breathing, but please, just sit beside me, say nothing. Do not offer a cure, or a pill, or a word, or a potion. Witness my suffering and don't turn away from me. Please be gentle with me. Please, self, be gentle with me, too. I will not ever "get over it" so please don’t urge me down that path. Even if it seems like I am having a good day, maybe I am even able to smile for a moment, the pain is just beneath the surface of my skin. Some days, I feel paralyzed. My chest has a nearly constant sinking pain and sometimes I feel as if I will explode from the grief. This is affecting me as a woman, a mother, a human being. It affects every aspect of me: spiritually, physically, mentally, and emotionally. I barely recognize myself in the mirror anymore. Remember that grief is as personal to each individual as a fingerprint. Don't tell me how I should or shouldn’t be doing it or that I should or shouldn’t “feel better by now.” Don't tell me what's right or wrong. I'm doing it my way, in my time. If I am to survive this, I must do what is best for me. Surviving this means seeing life’s meaning change and evolve. What I knew to be true or absolute or real or fair about the world has been challenged so I'm finding my way, moment-to-moment in this new place. Things that once seemed important to me are barely thoughts any longer. I notice life's suffering more- hungry children, the homeless and the destitute, a mother’s harsh voice toward her young child or by an elderly person struggling with the door. So many things I struggle to understand. Don’t tell me that “God has a plan” for me. This, my friend, is between me and my God. Those platitudes seem far too easy to slip from the mouths of those who tuck their own child into a safe, warm bed at night: Can you begin to imagine your own child, flesh of your flesh, lying lifeless in a casket, when “goodbye” means you’ll never see them on this Earth again? Grieving mothers- and fathers- and grandparents- and siblings won’t wake up one day with everything ’okay’ and life back to normal. I have a new normal now. Oh, perhaps as time passes, I will discover new meanings and insights about what my child’s death means to me. Perhaps, one day, when I am very very old, I will say that time has truly helped to heal my broken heart. But always remember that not a second of any minute of any hour of any day passes when I am not aware of the presence of her absence, no matter how many years lurk over my shoulder. Love never dies (Unknown)

A new name

2010-07-16T09:25:00.000-07:00

So the time has come. He deserves to have his name. The one we picked for him. Ronan Scott Long. Although, since we gave him our girls name in the beginning, we feel they both belong to him.

I know in my heart he was sick. The only results we have are the autopsy results. They couldn't do chromosome testing as his cells didn't grow. I've looked back over the pictures I have. I can see where the cystic hygroma is (why didn't the autopsy report mention it, it does mention he was 'poorly developed', is that part of it?) The cord strictures may have been the ultimate cause of his passing, but he wasn't healthy. He wouldn't have survived.

I had a dream on July 12. Gabriels birthday. I should have been preparing for the arrival of our newest son. But I do feel he came to me. I dreamt I was holding him. I could feel the weight of him in my arms. I was changing his diaper, caressing his head and saw his cystic hygroma. I was able to tell him how much I loved him and wanted him. I felt surrounded by his happiness.

I know he's happy and at peace. I know he knows he's loved and wanted.

I feel selfish that I still want him here with me, even knowing how happy he his.

It was hard to leave the happy, peacefullness of the dream and wake up.

It's all wrong

2010-05-24T07:34:00.000-07:00

It was all wrong. How can it all be wrong.
We got the final results of our babys autopsy results.
No cystic hygroma, no Turner Syndrom or Down Syndrome. And NOT a Girl. He was a BOY.

A healthy boy.

How could they not look at the hospital. Why were they okay just letting us think he was a girl?

He had a hypercoiled, elongated cord with 2 strictures. One close to the placenta, one where it attached to him.

We have pictures of him wrapped in pink. We have the pink blanket and hat he was pictured in as keepsakes. We named him wrong. I've been grieving a daughter that never was. I never even considered he could be a boy. I even wondered if it would hurt as much if it had been a boy. I got my answer to that one, it does.

It was so important to me to give our baby a name. Now, 6 wks later, after I gave him the girls name we picked out, I don't feel the need to give him the boys name. Why is that? I may in time.

I was looking at infant loss jewelry. I wanted to get a pendant in our babys memory. I'm glad I haven't gotten it yet, it would have the wrong name on it.

As many friends have said, I know in my heart I grieved my baby. He's not upset or think I love him any less because I grieved him as a girl instead of the boy he was.

Spiritual Guidance

2010-04-30T16:14:00.000-07:00

Fri, April 30, 2010
“Dilen was taken from us because God was trying to send us a message that we needed to start going to church.”
“Sometimes tragedies end up being the best things for us.”
No, I’m not saying these things. I don’t believe these things. A pastor who’s been trying to get us to attend his church came by the other day and bestowed these wonderful sentiments on us. He feels when we are born again and develop a relationship with God ….(I don’t know what he said, I tuned him out after that) I was relieved when my 3 yr old handed me trash, it gave me an excuse to leave my poor husband alone with him without being rude. This man , who obviously doesn’t have an ‘edit’ button, had no regard for our feelings and I’m worried about being rude to him.
How does he know I don’t have a relationship with God and that I need ‘saving’? Who is he to say that I’m required to attend a man-made building to prove it?
I admit it, I’ve been bargaining with God the past few weeks. “ Just give me a sign, what do You want me to do, I’ll do it. Do You want our family to start going to church? Just tell me which one.” This is the conversation I’ve been having, just had, the other night. This insensitive Pastor showing up showed me where I wasn’t supposed to go. My oldest was going to their Youth Night and attended Sunday School, now I don’t feel comfortable with him going. We need to find a place we all feel comfortable attending as a family, and I’ll never go there.

Healing

2010-04-26T12:28:00.001-07:00

"You will heal, and you will rebuild yourself around the loss you have suffered. You will be whole again, but you will never be the same. Nor should you be the same, nor would you want to be." Elizabeth Kubler Ross

The Memory

2010-04-24T13:21:00.000-07:00

Saturday April 24, 2010
Not a good day. Loving on Samantha and just taking in the joy she gives me has kept me going. Kept me grounded. Thinking , planning on trying again has given me something to cling to. Has given me hope. Today Scott put his foot down. He wants time. He wants more time to grieve Dilen. He thinks I’m just trying to replace her. Maybe he’s right. He wants more time to enjoy Samantha as a baby. Taking away my hope to try again soon has plunged me back into oblivion. I need something good to look forward to. I don’t know how long I can keep it together with Dilen’s delivery as my most recent memory. That’s what I’m trying to replace. The memory.

What's normal?

2010-04-22T09:53:00.000-07:00

Normal. What is normal? I don't think I'll ever be normal again. I'll be okay. I've survived. But I'm forever changed. How can I not be. I'm finding it very hard to have a 'normal' conversation with anyone. I don't have the emotional energy for it. Other peoples problems just sound so inconsequential to me, I don't have the patience for it.

I don't blame people for not knowing what to say. There's nothing to say. If I don't know what I need, how are they supposed to. I just honestly wish they could learn from my loss. Find the perspective in their lives without having to suffer first.

A lifetime

2010-04-20T09:42:00.000-07:00

Monday April 19, 2010
It’s been ten days. Ten days since Dilen was born. Nineteen since we found out we lost her. It feels like a lifetime.
Do you know what I can’t stand? When we announced we were expecting #6, so many people, family you’d hope would support you and want your happiness, asked if we were crazy. Nuts. “What is that? Six now?” Now those same people are offering their condolences. I don’t want to hear it from them. Do they honestly think they sound sincere at all?

Poems

2010-04-19T10:14:00.000-07:00

poem that I love by Kaye DesOrmeaux that I would like to share with you.

My mom is a survivor
Or so I've heard it said.
But I hear her crying at night
when all others are in bed.

I watch her lie awake at
night and go and hold her hand.
She doesn't know I am with her
To help her understand.

But like the sands on the beach
that never wash away.
I watch over my surviving mom
who thinks of me each day.

She wears a smile for others
a smile of disguise.
But through Heaven's door
I see tears flowing from her eyes.

My Mom tries to cope with death
to keep my memory alive.
But anyone who knows her
knows it is her way to survive.

As I watch over my surviving mom
Through Heaven's open door.
I try to tell her
that angels protect me forevermore.

I know that doesn't help her
or ease the burden she bears.
So, if you get a chance, go visit her.
And show her that you care.

For no matter what she says
no matter what she feels.
My surviving Mom has a broken heart
that time won't ever heal.

Another one I like:

Daddy please don`t look so sad,
Mommy please don`t cry.
I am in the arms of Jesus
and He sings me lullabies.
Please do not try to question God,
don`t think He is unkind.
Don`t think He sent me to you and that
He changed His mind.
You see, I am special
and I`m needed up above.
I`m the special child you gave Him,
the product of your love.
I`ll always be there with you.
So watch the sky at night.
Find the brightest star that`s gleaming.
That`s my halo`s brilliant light.
So Daddy please don`t look so sad.
Mommy please don`t cry.
I am in the arms of Jesus.
And He sings me lullabies.

Perspective

2010-04-19T10:11:00.000-07:00

Sunday April 18- PERSPECTIVE. There is always someone, somewhere who has it worse. It could always be worse. (Of course there has to be someone on the top, someone who actually does have it worse than anyone, but I’m not that person) I know I’ve just started this journey of healing and the relief I yearn for so desperately is a long way off. I just wish I could fast-forward the process…skip to the end.

A new day

2010-04-17T09:48:00.000-07:00

I have been reading on the grief board. Some mothers are 3,4,6 months past their loss and are still grieving as if it happened yesterday. They have lost themselves in grief. That’s not who I want to be. I don’t want to be defined by my loss and grief. It will always be a part of me, but I don’t want it to be who I am.

Sat April 17, 2010
Feeling better today. I’ve felt this peace before so it makes me wonder if it’s real. Am I really ok? I had a miscarriage in 2002 and I remember mourning the loss. I know I did. But I can’t remember how I felt anymore. The pain of losing Dilen has so overshadowed everything. I do remember feeling this grief when we thought we were losing Nicholas. Scott and I sobbed in the waiting room at 3am when he was in emergency surgery. But that was replaced by relief as he not only survived, but later recovered.
Now there is no relief. Just acceptance. I pray for continued peace. I know now that finding peace after her loss in no way diminishes my love for her. My heart still aches from her loss. Will always ache in remembering her.

Reality

2010-04-16T08:25:00.000-07:00

Friday, April 16, 2010- 2:40 am
Thought I was doing better..I’m not. Thought I had found peace..I haven’t. I’ve been keeping myself distracted so I didn’t have to think about it. I haven’t been facing the truth, I didn’t want to deal with it. Scott said we can have another baby. I don’t want another baby, I want my daughter back.
It’s Samantha’s birthday today and I’m a wreck. I keep thinking “Dilen” , I keep saying her name, sometimes where Samantha’s name should be. (My first thought was ‘it’s Dilen’s birthday’ I had to correct myself and write ‘Samantha’)
I wanted to hold her. I did. I wanted pictures. I have them. I wanted momentoes and it upsets me that I have no ultrasound pictures of her. I wanted to make sure I had memories of her so I’d never forgot her. How could I think I’d EVER forget her?
9:00am
Early this morning I cried…I sobbed. (Why does your nose get clogged up when you cry?) I couldn’t get to sleep until after 3:30am. (when I had a drink to quiet my mind, bad habit, I know) I woke at 7 after less than 4 hrs of sleep. But I felt better. With each new day comes a new sense of peace. Nighttime is not my friend. Exhaustion brings despair. For my own health and sanity I need to get to sleep at a decent hour.

Do answers really help?

2010-04-16T08:21:00.000-07:00

Mon 4-12-10
OB called today with the results of the preliminary report. LOOKS like nothing was wrong with Dilen! There’s a possibility the Ultrasound was wrong! Her cord developed with a natural ‘kink’ in it that restricted the blood flow from the placenta. As she grew she wasn’t getting enough. (We’re still waiting for the results of the chromosome testing and autopsy, so we’ll see) When she was born, we did notice how thin the cord was (like a piece of yarn) and the dr’s mentioned how small the placenta was. I don’t know if that’s how it always was or if it starts to shrink once the baby passes. But Scott and I SAW her, we noticed the extra skin that made up her Hygroma. Maybe the ‘kink’ was a blessing, maybe without it she would have survived a little longer. We still would have lost her.
I want to try again. I need to learn how to let go of Dilen first so I know I’m not just trying to get her back.
During the day I feel like I’m coping better. I’m able to smile, laugh, love…. Once evening comes, I start to break down. Just tired maybe?
Joined the MISS board. Thought it would help me cope with losing her. I think it just keeps the loss fresh with each new post I read. I don’t think that’s a good thing for me.

Delivery

2010-04-16T08:17:00.000-07:00

Easter Sunday, 4 days after our ultrasound, I woke up at peace. I knew Dilen was at peace. I concentrated on making plans to deliver her still body. A week after our ultrasound, I was admitted to the hospital to try to induce labor. With my 3 c-sections, one being a vertical cut, my OB was being very careful to do things slowly. It was slow. (Before they started anything, they performed another ultrasound. Still no heartbeat. But Dilen had dropped from her place at the side, to right above my cervix. Given another week, my body would have delivered her without induction…did I want to wait another week, um, no. ) The first day Laminaria was inserted, 15 hrs didn’t work the way they were expecting. Pitocin did nothing. 18 hrs of a bulb catheter putting pressure on my cervix got me to 2 cm. Then they added Cervadil which finally worked to start contractions. Six hours later I was at 3 cm. I finally asked for an epidural. Five minutes later, Right before the anesthesiologist came in, the bulb catheter fell out, which meant I was at 4cm. I decided to skip the epidural, 3 contractions later little Dilen was born still on 4-9-10. She was 3.5 oz and 8 in long. It only took 20 min to deliver her placenta.
The staff was very compassionate and helpful. They cleaned her up and took pictures. They brought her to us so we could say our goodbyes. I had hoped that seeing her would bring some closure. I didn’t. It felt wrong. She was so cold and dark. We knew her spirit had been gone from her tiny body for a long time. It wasn’t her anymore.
That night Scott and I both agreed we couldn’t do this again.
I didn’t want to see the inside of a hospital again for ANY reason.
The next day I wanted to want to try again, but I was scared to death.
Today, I want to try again, but I know it’s just to try to get her back.

The day my world crashed

2010-04-16T07:30:00.000-07:00

You hear about horrible tragedies. They’re what happen to ‘other’ people. You can’t even imagine what they’re going through. You never think it could happen to you, but it happens to someone. I was 'someone'.
I can’t say she was a surprise. She was conceived when our youngest, our first daughter, was 7 mos old. We weren’t doing much to prevent a pregnancy. I figured at 35, it wouldn’t be that easy to get pregnant. I was wrong. I admit, I was happy about it. I love being pregnant. My only concern was Samantha. Would a new baby make her grow up too fast. Steal her time at being the baby.
On April 1, 2010 At our 2nd level ultrasound at 19 wks our world stopped. We were excited to confirm we were expecting another girl I was sure she was. She was a girl. She had passed the week before. No heartbeat. She was diagnosed with Cystic Hygroma with Turner Syndrome or Down Syndrome.
In the following week I did a lot of research and I cried. Cystic Hyrgroma’s and Turner Syndrome are usually fatal. I pray she went peacefully as she slept. I didn't have to make the decision to end or prevent her suffering. I don't think I could have recovered from that decision. God made the decision for me, for that I am thankful.