Sunday, October 12, 2008


When I started writing about my feeling when I first found out about Jonathan's condition I realized I was sharing with whoever happened to stumble on my blog. And something about that was comforting. It made me feel so much less alone.

I had tried to find anyone else going through this at the same time and came up short. I am sure they are out there but being as rare as it is I guess its just harder. I have made one friend in this whole thing who has been in this situation and she has been amazing. I know after a year and a half of losing her angel she still struggles.

I was doing ok. I was feeling good about how things went. I have been trying to tell myself that losing Jonathan was a privilege. That we were given this amazing gift to have had almost 3 hours with Jonathan. But the truth is I want my baby. I want him still in my belly. I want to feel him kick and wiggle and know that he is safe. I want to know that he will live. I want the whole fat pregnancy. I want to watch him grow up and play like I watch Grayson play. I want Grayson to be a big brother to a brother who can play with him.
I want to be the mommy of two little boys. I want to be happy.

I don't want to day dream about a child who won't have a happy long life. I don't want empty arms. I don't want to get looks of pity from people who know. I don't want to look pregnant anymore. I don't want to have to tell Grayson his brother is an angel anymore. I don't want it, any of it. I don't want to cry anymore.

(written last night but not published until today- I am feeling a little better now)


Anonymous said...

I am so sorry that you are feeling sad! I wish that I knew what to say. If you want to read about another mommy who lost her baby in June(she also talks and e mails with others in the same boat) go to
She kept an online journal of her feelings and maybe it could help you. Maybe not.

Heidi said...

Sweetie, you are sooooo entitled to those feelings! You have been amazingly strong through this, but you are human. You will go through a huge spectrum of feelings, but not alone. You are very loved and cared for!

Geneva said...

As you go through all the zillions of feelings, I'm glad you're able to talk about it and get it "out" (though it's never gone). Those who love you (myself included)are terribly sad that Jonathan couldn't stay and that you have to have this inexplicable experience, but that pity (or whatever a person wants to call it)doesn't take away from WHO YOU ARE. All anyone has to do is see the beautiful photos you've posted of your sweet little boy, nestled in your arms with that precious look of, "Aaaahhh...home" to know that you ARE the mother of two sons. Nothing I can say changes anything, but...I do love you, my friend.

Heather said...

Thinking about you!! {{{{{{HUGS}}}}}}

Anonymous said...

You are not alone in this journey. My angel Abigail was born into heaven on July 24, 2008. She also had anencephaly. You and your family have been in my thoughts and prayers. If you want to contact me you can find me through My member name is Janice. There is also a group online that is just for moms with babies that have anencephaly. Hope it helps to know that there are other moms out there that has walked this road. Hang in there, there are many ups and downs in the grieving process.

Nurse Heidi said...

You don't know me, but we have friends in common. I met Krista recently, and am privileged to have Candace's story on my Angel Babies site.

Jonathan is a sweet, beautiful little boy. How wonderful to have nearly three hours with him. That is how long we had with Elizabeth.

Your feelings are so very normal. Painful, but normal. Many times for months after I had her, I'd feel phantom baby movement in my belly. When my milk came in, it was like my whole body was crying. I felt like I would never be happy again. Getting through the first year was rough, but it has now been 3 years since that first ultrasound, and life is better. Our rainbow baby, Katie, was born 14 months ago, and she is loved fiercely and wholeheartedly.

Hang in there. Know that you are not alone. I'm glad that you found Krista - she is a wonderful woman.

Shari Ashwell said...

Situations out of your control are always the worst to deal with. I have not lost a baby but I have felt the hopeless out of control feeling before. I am not sure if you read all of these or just skim through, but know that people are praying that you continue to find the strength in yourself to help buffer and deal with the situation. (if that is possible) There is no more anticipation, no more waiting, wondering... everything that kept you going. While you are on your jounry of celebrating and mourning Jonathan, I know you wont forget the living, the little face that looks up at you as if to say, everything will be ok mommy, and the husband who may not know how to deal with such a loss. (even if he says he does) I am not sure what helps the most, words of encouragement or dealing with the reality but which ever I am here. I am here a couple times a day reading your blogs, crying and bonding with your beautiful family.

Karen said...

I wish I had some comforting words. I think your feelings are totally natural and you are among the strongest people I have ever met. I have kept your family in my prayers and I will continue to send you good vibes.

Anonymous said...

Under no circumstances am I comparing my loss to yours, but the following 2 songs comforted me after the loss of my best friend, my sweet Dad. I hope you find some solace in these words.

You don't know me, but I have followed your story after reading your post on the nilmdts forum. Please know that I do not look at you with pity, only admiration and respect.

Your baby was beautiful!!

I wish you peace.


So familiar and overwhelmingly warm
This one, this form I hold now.
Embracing you, this reality here,
This one, this form I hold now, so
Wide eyed and hopeful.
Wide eyed and hopefully wild.

We barely remember what came before this precious moment,
Choosing to be here right now. Hold on, stay inside...
This body holding me, reminding me that I am not alone in
This body makes me feel eternal. All this pain is an illusion.


We barely remember who or what came before this precious moment,
We are choosing to be here right now. Hold on, stay inside
This holy reality, this holy experience.
Choosing to be here in

This body. This body holding me. Be my reminder here that I am not alone in
This body, this body holding me, feeling eternal
All this pain is an illusion.


In this holy reality, in this holy experience. Choosing to be here in

This body. This body holding me. Be my reminder here that I am not alone in
This body, this body holding me, feeling eternal
All this pain is an illusion.

Twirling round with this familiar parable.
Spinning, weaving round each new experience.
Recognize this as a holy gift and celebrate this chance to be alive and breathing.

This body holding me reminds me of my own mortality.
Embrace this moment. Remember. we are eternal.
all this pain is an illusion.

Nic said...

I pray you find some peace.

Lynnette Kraft said...

Hello. First of all I want to thank you for introducing your sweet baby and sharing those beautiful pictures. Jonathan is absolutely precious.

I'm so sorry for the emotions that are inevitable. I've been there, and even with a baby with anencephaly. My Samuel that died was also my second baby, second son...My first born, Jared was not quite 2 when Samuel was born and I had all those same emotions you are having. I wished that Jared had his brother as much as I wished I could have my son.

Jared didn't get another brother fro 11 years! But, looking back, I can see God's hand on everything. I didn't understand at the time, but I can see that God had a unique purpose in everything the way he designed it.

I know that those words don't take away the hurt, but I thought perhaps it would relieve the burden in some way, at least related to Grayson.

I have a website called It is loaded with articles and such that might help you cope in the days ahead. It was created for people just like you - hurting...(the first page is a trailer my kids did for my book - but you can just skip that and enter the site).

I also have a blog if you'd like to come and say hello. I'd love to get to know you better, if only in cyberspace. :)

I just prayed for you this morning.

Kira said...

Hi there. I came across your blog through your post on the audreycaroline blog. I just thought I'd say hi and I know how you feel. We lost our second son this past July. He had hydrocephalus and some other issues that we didn't know about until after he was born. Our first son is 18 months and I sooo wish that he and his brother could've grown up together. It's interesting reading some of the different blogs b/c it seems like the cyle of emotions is pretty similar. Well, I know this journey is hard and that we'll forever be changed by the short time we had with our little ones. If you want to check out our blog, it is Oh and I just read the blog where your little boy is breastfeeding his stuffed animal..that is so hilarious and cute!