another kind of peace

I recently wrote about a deeper feeling of peace when I was in the middle of a deep ugly cry. A couple Sunday's ago the Lord showed me another side of peace and the power of prayer.

There is another pregnant woman at church who just happened to sit down next to me. Last I knew, she was due at the end of September, just like me. So there in the middle of praise and worship I found myself fixated on the fact that this woman will get to take her baby home with her and I won't. I finally decided that I just needed to step out of service and deal with the emotions instead of wiping away the tears that I couldn't completely bottle up.

I stepped out to the restroom and just cried. I ended up in the sitting room before the bathroom trying to get a hold of myself. I felt bad for being distracted during worship. A wonderful woman from the church came into the restroom, following the Spirit's leading to come and pray with me. She began praying for me, mostly for peace and comfort. I did not explain what the struggle was, just sat and agreed with her prayers. Honestly I didn't believe that the prayers would be answered but within minutes I felt that inner calm and was able to return to the worship service and sit in my same seat.

I had another opportunity to use that experience last Thursday. I made a phone call to Wendy and felt courageous enough to finally ask for a funeral home suggestion. I know her husband is a pastor and has some experience with funeral homes in the area. It's one of the last details and makes me cry every time I think about it. Well, I made it through the conversation but as I returned to our training session at work, I again felt fixated on how unfair it is that I have to plan a funeral for my baby. The training session was on parent involvement...the presenter kept saying things like "parents do what they think is best for their children" and "parents want the best for their children" and it felt like a twisting knife that I can't do anything to fix this for Sammy.

I finally stepped out of the room and headed to find some tissues. Thanks to the answered prayer on Sunday I was able to talk myself away from hysteria. I focused on how planning a funeral is taking care of my baby in this instance and prayed for that complete peace that passes all understanding...it still hurt but it was enough to calm me down and let me return to the meeting.

Today I am in awe of the depths that the Lord will take me to in my understanding of His presence and provisions. Does that make sense? I'll be expounding on this as time goes by since it seems to be a theme...I mean, trust me, it's a weird co-mingling of toddler like tantrums and this "depth".

I don't even know if depth is the right word but I think I use it because I'm listening a lot to "How He Loves" by the David Crowder Band - "if His grace is an ocean we're all sinking" - I love the picture that paints, completely surrounded by grace, or whatever I need from the Lord, whenever I ask. Whether or not I feel it, whatever the it is (grace, love, peace), the Lord provides. I tend to believe that as I trust and hope for those things to become reality, I will feel them as well.

ahhh - tangents. Need to get some supper, Sammy is quick to let me know when it is time to eat.

Just wanted to send a quick update before I head to work today.

Looks like I will be sticking with the first hospital. *shrug* I talked with the midwife Friday and she was able to give me some information about the two different hospital systems that seemed to make it clear in my mind if I was gonna have to fight someone for what I want the 1st hospital would be that someone/something to fight. She felt I needed to stick with an OB/GYN because there is *some risk* and said that the doctor my current OB is referring me to is great.

So today I will NOT be meeting with a new doctor at the new hospital. I will be trying to get an appointment with Dr. B at my current OB's office. We will most likely be working with Wendy on some one-on-one birthing classes and possibly using her as a doula (natural birth coach, although we both agree natural isn't the top priority in this type of situation).

I can't wait to look back on all this and have figured out why I had to go in this enormous circle. SMH (shaking my head)

Prayer praise! We got our bill from the second opinion ultrasound in MN and it was covered by insurance!

Prayer request - please keep Dave in your prayers, he had a bunch of dental work done on Friday (bone graft, cutting, stitches, blood, ew). He is healing nicely but it hurts and he is still in a funk of sorts.

back to work...

I started work yesterday! Crazy. I know I can't really fuss or complain when most people have to work year round, but for teachers, July 6th is reaaalllly early. We had to start this early because we are a brand new school (not the building though) with brand new staff and administration. We are spending lots of time getting aligned to our leaders mission and ideals and eventually planning out what we expect our school to look like. So far it's been great. We have shorter days this week and are easing into the full day schedule.

It looks like I might have another option for a midwife. Wendy called me back today and left a message that her midwife friend was willing to take us but she wanted to check first with her back up doctor. So could you all pray with me for discernment on who to choose? If I can feel good about one or the other, I would hope it to be before Monday's appointment where we will be having another potentially-expensive-to-us ultrasound...I just don't know if insurance will pay for 3 expensive u/s in 8 weeks. I understand why the dr wants one, but I don't know if the insurance company will understand (or care).

I really wish there was a "doctor game" game show...you know, like the dating game? Based on their answers I could choose my doctor from a panel of qualified doctors. *sigh*

where to begin...

Tomorrow I start a new job, 27 weeks and 4 days pregnant with a baby boy who has been diagnosed with severe anencephaly (much of his brain and skull did not develop). Anencephaly is a fatal open neural tube defect (ONTD).

I am super thankful for this new job. I am a teacher and although it will be awkward to start the year 6+ months pregnant knowing my baby won't live long after he's born, my new administration has been amazing and I am not even nervous or stressed about tomorrow. We'll see how I feel in the morning though...

My husband, D baby as he is known in my phone, and I decided to name our baby Samuel David "Sammy". We talk to him daily, read him books nightly, and strive to enjoy every moment we can with him.

Seven weeks into this journey I have found help in all corners of the United States. Old friends, new friends, and family with experiences similar to ours have been a tremendous help and encouragement. But here in New Orleans, I struggle to find these people or resources to help us through this. So I am starting this blog. Hoping that should someone else in New Orleans area walk the path we have chosen, we can be a resource and source of encouragement.

It's also a blog for me. I have found solace reading baby loss blogs and blogs of mother's carrying a baby with a fatal diagnosis to term. I have also thought of starting a journal or letters for Sammy...here's to some cheap therapy.

I'm going to back date and post the emails I have sent out over the last couple of months. I send them to my prayer and support team, prayer is the best support we can get from everyone around the country.

P&S #11

Tuesday ended much better than it started. Thanks for keeping us surrounded with prayers!

Old hospital system - I've always liked one of the nurses in my doctors office and she really pulled through once again. I gotta figure out a meaningful way to thank her. She called me a couple times Monday and then again Tuesday to reassure me there is in fact a doctor in their office that will take over my and Sammy's care. This was after she asked why I was having records sent to the *other* hospital system and I think I responded rationally, obviously a bit emotionally too though, with my overall frustrations about my experiences.

I feel like there was some miscommunication between the staff that resulted in miscommunication with me and led to all this craziness. I don't know why it had to go like this. But it was good to know someone would take care of me and Sammy.

New hospital system - As I sat in the middle of a pedicure yesterday I found myself explaining my understanding of the situation to a nurse at the new doctor's office. "I will mostly likely carry to term, but my baby will...die...soon after birth. Or he won't make it to term." Unreal. I guess there was confusion about why I was sending records (interoffice miscommunication at the new office) and what I was expecting to gain from meeting with a new doctor. So I tried to nicely explain why I had a second opinion in Minnesota and why I was trying to switch doctors at this point. I guess I didn't sound too crazy so we have an appointment on July 12th with a new doctor.

This office has 4 doctors and 2 nurses. Nurse Connie said I would probably see all 4 doctors at some point so that I would be familiar with whomever was working when I go into labor. Sounds good to me if they can all handle this situation. We're going to this appointment with a list of questions that should give us a good idea if they will be any better prepared for us.

Specific prayer requests:

- always for a miracle healing for Sammy

- that the new doctors will be prepared for and sensitive to us and our baby

- I really do want a vaginal birth if at all possible (it'll depend on Sammy's position at that time) so let's start praying that he's breech - the best position for anencephalic babies.

- let's pray that if the new doctors don't have a system set in place for birth's like ours, that they will be open to our *demands* :-) I have a birth plan in the works, which seems high maintenance to me (I don't like feeling high maintenance), but also feels needed.

- I often thank the Lord for His help this far, let's make sure to bless and praise His name for His caring and attention to all the details

Thank you, thank you, thank you

P&S #9

The weeks are really flying by! I was just looking at when to plan my first appointment with my new OB and it would be the end of July the week I turn 30 weeks. Jeez...it's going fast I'm gearing up to start work next week, feeling the heat of finding a new doctor (none yet), and feeling the general heat of New Orleans. I finally broke down and bought a maternity swim suit last week so I could get in a pool with out scaring the other swimmers and it was totally worth it.

Hmm. I don't feel like I have a ton of news. I haven't heard back from Wendy, tomorrow it will be a week so I may try her tomorrow. A member of a support group (more on that later) I joined online suggested a website to me that led me to a pro-life doctor who I found it is no longer delivering babies, but through my new principal (more on that later) I was referred to *another* doctor in that same office who is supposed to be amazing. I worked up the courage to call Dr. R's office this afternoon and leave a message with her nurse explaining my situation and that I was looking for a doctor that would be comfortable with it. Either the doctor or the nurse will call me back tomorrow. I've kind of unofficially called this my current hospital systems' last chance, all the doctors I've been in touch with or tried to work with have been within this hospital system. If Dr. R chooses to pass on me and Sammy I am going to try the other big hospital system in town and see if they will step up.

The group I joined is an anencephaly support group and it's been great. I introduced us at just the right time to get a picture of Sammy's name drawn in the sand by one of the parents from the group. I didn't know she had offered to do it and was pleasantly surprised when I found his name in the pictures. The people in the group are wonderful - lotsa recent stories but also a few parents who lost their babies in the 70's and 80's. One family got to spend 6 days with their little girl before she passed. I'm not super active with comments but I read a lot of other people's stories.

I finally caught up with my principal today and she was wonderful! I was happy to get through the explanation with only a hint of tears in my voice. She seems to be understanding and laid out a plan with an associate teacher that should I need any days off before Sammy's born "just because", it will be covered by this teacher. The associate teacher will also be the one taking over when I have maternity leave. The principal even offered to send out an email to the entire staff ahead of time so that next week I don't get too many "Oh - how exciting! When are you due?" comments. I hadn't even thought of a pre-emtpive email. I think I'll be thanking God a lot for this job even if it seems to have come at an awkward time...

I remember a time (kindergarten) when I didn't like reading. And I don't know how, or when, but the rest of my elementary years and going forward I know I have loved reading. I have a style that I like, but will read anything if it will occupy my mind or is the least bit entertaining. All that to say, I love blogs. I don't know when I discovered them, but somehow I did and often refer to a story from "this blog I read". There are 2 recent finds that I want to share with you before I get back on track about reading...

1. Dear Stevie: http://dearbabycook.blogspot.com/ - this blog started as letters to her baby, who was stillborn at 26 weeks...I can relate to much (not all) of her grief and she writes really well. I can't read her blog without ending up a crying mess.

2. Molly Piper: http://mollypiper.com/2008/03/how-to-help-your-grieving-friend/ - she lost her baby at 8 months..went in for a check up and there was no heartbeat. Through this experience she wrote some short blogs about how to help a grieving friend. Read it - I promise they are good.

Ok-back to reading...I shouldn't have been surprised when early one morning I woke up, startled, because I realized at some point in my sleep that we have not read to Sammy. I have bought so many books over the years, knowing they could be used in my class and at some point with my children. I'm not sure why it took so long for me to think of it and then I received an email from someone encouraging me to enjoy all the small things with Sammy, including reading him a book. So we did. I had Dave choose the books and they were books I would not have chosen but we have plenty of time to read others, so I didn't sweat it.

I read a book that I bought for my Rainbow's (church) class a few years ago. It's called "A Heart for Jesus" and explains what it means to give Jesus your heart. I was choking back tears as I read the words of a mother describing to her daughter what it means to give Jesus your heart.

"I didn't give Him the heart that beats in my chest. I gave Jesus my feelings, my thoughts, my ideas, and my wishes...He never runs out of joy, courage, patience, or strength...You give Him your feelings - He feels with you. You give Him your thoughts - He thinks with you. You give Him your ideas and wishes - He helps you make those wishes come true."

We read Sammy his first book and it could not have been a more perfect reminder for me. Whether I know it or accept it, Jesus is always there feeling with me, holding the answers and solutions out for me. I think the answers right now are peace, strength, and humility. At least that's what I feel he's offered, I'm sure there are a few more if I slow down and listen. I think the next morning I woke up knowing we had to go to the fireworks on the 4th - I love fireworks and Sammy needs to experience it. :-)

Whew. Guess I found some stuff to write about after all. Please continue praying with us as I search for a doctor. The task often feels overwhelming and unfair...Of course keep praying for a miracle and that we will be prepared no matter what the outcome. I figure sometime soon we will need to figure out how to find a funeral home to use...that's a to-do list check off I never wanna make though.

Please feel free to email us or ask any questions...I promise Sammy is never far from my mind, I'd be surprised if you could ask something I haven't already thought about.

Thank you for all the prayers! I can't say it enough.