My Path

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

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

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

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

"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

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?

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.