We are Jedidiah.

April 29, 2011

The Lily Lesson
Today in science class the students were dissecting flowers, lilies specifically.  These lilies have 6 petals.  One
student called out that his did not have six petals; it only had four.  God whispered, “Isn’t it beautiful?  Just as it is.  Just as I created it.”  It held beauty and mystery and simplicity.

Just as Jedidiah did.  Jedidiah was completely, 100% beautiful.  He was amazing.  He had the look of a grumpy old man, a sweet smiling chunk, and a tiny newborn babe all rolled into one little 3 pound, 11 ounce body.  God PLANNED him. He formed him. He knew him. He ordained for Jedidiah’s life to be beautiful, mysterious, and simple.

God is sovereign, and He made NO mistake with my son.  He will use Jedidiah’s life to glorify His name AND to bring peace and love and comfort to all who hear his story.

April 25, 2011

“Normal”

Today we return to “normal.”  Jim has left for work.  The boys are waking in order to get ready for school to begin.  I have exercised, dressed, and paid some bills that got ignored during the past couple of weeks, and I am now wondering if I can get through this day.  What is “normal” now?  Will I ever be able to look at a baby at
church and not see Jedidiah?  Will I be able to sit anywhere in my own home and not think of a moment during our pregnancy or the short time we had him here?  Will I ever stop aching to hold him, especially when I see empty blankets?  Empty blankets, empty arms.  “Normal?”  What is normal?  

I need to focus on living, but my heart is chilled.  I need to focus on the boys, but my mind wanders.  I need to
focus on God, but my perspective is selfish.  What is normal?

April 19, 2011

I don’t know what to say, what to feel.  I would never want Jedidiah back to feel pain, but my arms ache to hold him, to feel his sweet chubby cheek against mine.

April 17, 2011

Guilt
I am overcome with guilt sometimes.  Guilt for thinking early when we first got the diagnosis that it would be better for everyone else, perhaps even myself, if I just lost Jedidiah early.  Guilt for wanting to keep him with me as long as possible.  Guilt for napping those 45 or so minutes in the hospital while he rested in someone else’s arms.  Guilt for not holding him more myself.  Guilt for not sharing him more with others.  Guilt for feeding him when maybe that made it harder on him (I know, but guilt isn’t rational).  Guilt for strapping him to that dreaded car seat. Guilt for forgetting moments of being with him.  Guilt for reliving his moment of death over and over again.  Guilt for not having the body donation run smoothly.  Guilt for not being more patient with the kids.
Guilt for getting angry with some folks.  Guilt for not playing with his hair more.  Guilt for not taking more pictures while we were here at home.  Guilt for disappointments in others when they really had done nothing wrong.  Guilt for hating the molds-making time because it made him cry but then being so thankful for the molds after he was gone.  Guilt, guilt, guilt.

Living on Adrenaline and Grief

Numerous shopping trips, multiple email invitations sent out, printing invitations, edits on the program and other
papers, obsession about colors of balloons and clothes, attempts to carry on coherent conversations… some of my final words to Jim on Friday evening were, “What do I do now?”

April 15, 2011

I am writing about the service, but just like the last two days, I can’t seem to keep from being too wordy.  Will post this day when I get the recap finished.

April 14, 2011
I awoke early to get some cleaning done.  Correction, picking up.  I didn’t clean.  The news crew was due at 8 to film us eating our breakfast—“a day in the life,” I guess.  Of course, Jim cooked.  He made French toast and bacon.  Yum!  The boys were well behaved, and we sat down to the first family meal that we had had since the night before Jedidiah was born.  Wow, had we missed that.  With food coming in at different times, folks here at various times, and the randomness of grief, everyone had been eating whenever they felt like it.  What
a gift God gave us by having the news crew ask us to have a “typical” breakfast.  They got a special breakfast,
but a typical family meal.  How wonderful it was to sit and pray together, to pass food and laugh together, to make a mess together.

We got through the interview with only having to stop once for the emotion of the situation.  Being able to revisit our pregnancy, our delivery, and our time with Jedidiah was quite healing.  Another blessing…  hearing Jim’s answers.  I loved being able to truly stop and listen to what he was saying without interruptions, including from me!

After the interview, the cameraman wanted to get some other images, so we began talking casually with the
reporter.  Without realizing it, I sat in the same spot where I was sitting when Jedidiah passed away.  I didn’t think I would ever be able to sit there again without monumental grief, so I had avoided it.  When I realized what I had done, I wasn’t sure if I wanted to cry for relief or cry because life had moved on, already.  Either way, I needed to accept what had happened right here in my own living room.

The kids were being picked up again by some folks from our co-op.  It had been so wonderful for them to have distractions throughout the week and so good for me to have quiet and time to get work done for the memorial service.  I was able to talk and not feel like running away.

We went to meet with Pastor Pat to work out the details of the memorial service.  After Jim asked him to do the message and shared with him what God had placed on his own heart about the message, Pastor Pat began to encourage Jim to do the message himself.  Jim agreed, and Pastor Pat was willing to read Jim’s words if he couldn’t make it through.

After more shopping, we rushed off to the church to run Darby’s DVD through to make sure that it would work on the church’s system.  Jim got a call.  A close friend of his had come in from Baltimore as a surprise and was standing in our driveway.  He met us at the church.  How amazing to be surrounded by the love of friends and family.

April 13, 2011

On Wednesday, I was struggling to speak.  I wanted the ministering that others were providing, but I couldn’t seem to find the right words to say, not that they cared, but I was struggling to put my thoughts together in a cohesive way.  I wasn’t sure if I was in the mood to laugh or cry.

Jim and I had some errands we needed to do to get ready for the memorial service, and we ended up eating out, meeting up with D.  At the restaurant, we saw a little one who was hold enough to hold up her own head but not enough to keep from wobbling a bit.  I looked away, reminding myself that all children are a blessing and reminding myself to focus on being thankful that that mama still had her little one.  At some point, the little one began to cry.  Although we were seated from far her, we could hear.

Again, we had folks coming to the house.  We love fellowship.  We have missed the fellowship during meals
greatly during this past week, so I didn’t want to miss the people, but at the same time, what should I say that wouldn’t overwhelm me or them?

Jim had to leave that afternoon for a short time.  I don’t take leaving well.  I try to realize that always making sure that a ‘last goodbye’ would be poignant if anything tragic ever happened is exhausting and, basically, keeps me in a constant state of worry about death as well as doing the right thing (so, yes, I have let that go, for the most part).  Also, when he leaves, sometimes I feel abandoned.  It will happen at random times, for some reason that I am sure psychologists and counselors would love to explore, but in this case, I knew why.  I felt he didn’t want to be with me, that he
didn’t care that I would have to face more people again, that he wanted to be away for a while.  The poor man deserves some time to himself, but in this case, it was something he had to do, not wanted to do.  He has ministered to me and the children as well as to others who have needed it, even while he needs it.  But, my perspective was only my own hurt and internal struggles.

I got through, barely, speaking with the folks that brought the boys back home.  We needed to pick out a picture for Jedidiah’s memorial frame, and with Jim gone, but the computer briefly available, I had to look through more than 700 photos of our time with Jedidiah without his papa.  I hadn’t looked at the photos in detail since the day after his death.  But, now, I had to focus on each one, evaluating its quality, its angle, its lighting, and its
portrayal to the world (service attenders) of my son.  There were others around me, but I only wanted Jim.

When he returned, I behaved badly.  He had no idea what was going on inside me.  He had had a bad hour and a
half himself, and he got attacked the moment he came him—he got the look, a cold shoulder, and a wife unwilling to speak without venom in her voice.

I ran away, unwisely driving myself to a store to get some items for the memorial service.  After a productive trip and a “blow off steam” phone call with a friend, I realized that I had allowed thoughts that were untrue and past-hurts-driven to invade instead of facing the pain of losing Jedidiah and, momentarily, Jim.  I tried to make amends by being nice and acting as if nothing had happened, but I had inflicted hurt and pain, and I knew I needed to apologize.  That’s what I should have done, but I didn’t right away.  Oh, that I could take those
hours, those words away.  After a bit of arguing, I knew if I didn’t eat some humble pie and admit how wrong I was, my guilt alone would continue to drive a wedge between us.

After the emotion of the afternoon, Jim said he didn’t think that he could do the message at the service.  I wondered how much our difficult evening played into that comment.

We both admitted that we were spent, and we just couldn’t do anymore the following day, no planning, no running, no people.  Well, God had other plans.  The news crew texted around 9:30 that night that they needed to do our interview, if at all possible, in the next two days, or the story would have to be put on hold for a time.  We agreed.  I was really surprised Jim agreed.

April 11, 2011 (evening)

I had to take some medicine and use ice packs all of this afternoon and evening due to the pain of engorgement.  Then, as I was reading with Johnny before bed, all of a sudden I had the thought, “I need to finish up so that I can go downstairs, snuggle with Jim on the couch, and nurse my baby.” 

April 11, 2011 (afternoon)

72 hours after Jedidiah was born…

My milk is coming in.  When I awakened in the night, I purposefully did not look at the clock.  I don’t care
to pay attention to the exact time, not after awakening exactly 24-hours after Jedidiah’s birth.  Not when this is the third night in more than 30 weeks in which I am awakening without my son growing inside me and my arms are without him to hold.  Yet, the evidence of his life is still part of me, not emotionally like
everyone else, but physically.

My milk is coming in, and yet I have no baby to nourish, I have no baby to comfort, I have nothing to do but to feel the pain, physically, of losing him, all over again.  I had hoped to pump for some mama who can’t, but I am so sorry.  I can’t.  It isn’t that I can’t physically.  I can’t emotionally.  I hope the mamas whose babies need the
nourishment will forgive me.

April 11, 2011 (morning)

One of the ways God is watching over me…
Yesterday was Sunday.  Two short mornings after I had given birth to our beloved Jedidiah.  Jim had expressed
his desire to go to church, and since I have been do so amazing well physically after a birth, he really wanted me to go with him.  We needed to speak with the church’s liaison about scheduling Jedidiah’s memorial, so I agreed to go.  Yet, I had awakened at 2:30 that morning.  Had spent many hours grieving, crying, writing, crying, reliving my son’s moment of death, crying, crying, crying.  We went to the second service.  Many folks didn’t know what to say.  Some knew, some did not.

After dealing with condolences and unknowing smiles for almost an hour and a half, being disappointed that the area of the church in which I had wanted Jedidiah’s memorial service to be held could not be used by us at a time good for us, finding out that Jim was having such a blessed time with witnessing a man coming to know the LORD, bleeding more than I had in a day and a half, and simply being exhausted, I walked into the sanctuary, angry and unsure of who I am and my purpose in life.  Am I really a believer?  Do I really think my little man is in heaven dancing right now or is he simply dead and gone forever?  Is God really listening?  Is this something we have all made up to make ourselves feel better when reality sucks this badly?

I sat there, unable to sing, well, ok, unwilling to sing.  Since I didn’t know if I thought the words were true, why would I be a hypocrite and sing them?  Just so I would look like I was still so strong and so faithful. Yeah, right.
Thoughts of the memorial service and how things were still so completely outside of my control kept tumbling through my head.  I couldn’t choose when I wanted it; I had to think of other’s scheduling needs.  I couldn’t choose where I wanted it; it was already booked.  I couldn’t choose how I wanted it ordered; I needed to let his papa have some say in that (that one didn’t bother me all that much).  So, in anger and frustration, I sat there.  My husband’s arm securely around me or rubbing my back the whole time.  I kept looking away from the stage.
I couldn’t bring myself to watch other’s worship and other’s praise.  The baptism was wasted on me.  Jim had another idea for the stained glass frame.  A good idea yet another change from how I had wanted it to be.

I figured some decision just had to be made.  This weekend had seemed best for many reasons that I couldn’t think of at the moment (I even spaced that my close friend was coming to town, even though I had desperately wanted her at the memorial).  So, I decided it would be Friday evening.  I told God that He needed to find a venue.  I didn’t pray and ask.  I told Him that He would have to do it cuz I obviously had no control.

I figured we had to have a back-up plan though.  So, I called the church liaison, during her child’s birthday party, no less, how selfless am I?  I asked her to put us down for some place in the church so that I could move forward with the rest of our plans.  A windowless, no-natural-light place.  I just knew that was where we would end up.

God is faithful, even when I am not.

My sister has become leery of sharing her ideas with me because I haven’t been the nicest person when I don’t want to hear anyone else’s suggestion on a matter.  Yet, thankfully, she suggested a church that she had attended a concert at a few months earlier.  So, the five of us piled in the van and went that way.

Oh, my.  We all felt from the moment we saw the sanctuary that it was the place. More than that, we felt that it was of God.  From the stained glass panels on the doors to the stained glass chandeliers to the wall and chair colors of the reception area, we could not have been happier with the look of the place.  However, it was the heart of His people that truly mattered.  With minimal information (why we were looking at the building), the administrator agreed to let us use the building and offered whatever help he could provide to make the service run smoothly.

I am still amazed at the sense of calm and peace that surrounded me in that moment when God whispered, “Yes, I do care.”

April 10, 2011

His Eyes

I was holding him while my mom held his oxygen, then my sister.  He was calm.  He was sleeping.  He was pink.
It had been a while since we tried to give him a drop or two of food, so I thought I would try.  I gave him one.  He stayed calm and peaceful.  I waited about 3 minutes and gave him another.  He opened both eyes wide with
terror, stiffened his arms down and straight (for the first time), lost his color, and I knew he was gone.  Jim came
to try to do what he had done before to stimulate him back to breathing but I knew he would never take a breath again.  His tiny heart continued to beat slower and slower until it could no longer go on.  Hearing his heart beat
confused me.  I thought for the briefest of moments that I was wrong, that I hadn’t seen his life end with that moment of last breath.  We always hear that a life ends with the last beat of its heart, but that isn’t true, and although I had been told what would happen and thought I understand, I really didn’t, not until that moment.  My son was gone from me in the instant that his brain no longer sent the message for breath.  The apnea episodes weren’t the same as this moment, not even close.  With those, there were gasping and fighting for life to continue, the fight was within himself.  With his final breath, there was only release, but the terror in his eyes is something I so wish I could have taken away for him.

Upon birth, he opened his eyes.  He looked at most of us.  His eyes were clear and sweet and precious.  He began to keep them closed, only trying every once in a while to open them.  When the apnea episodes began, he opened them again, but each time, they seemed frightened.  Only once after we got home, did he open them with calm and peace settled in them.  Jim, Jedidiah, and I went upstairs for some peace and quiet.  Jim grabbed a baby
washcloth and washed his little right eye that had become crusty.  Jim prepared the lights, I prepared the
breast pump, and Jedidiah rested.  Once Jim lay down and I began pumping on my left side, I placed Jedidiah to my right chest, and he moved his tongue and chin as if to nurse and grew relaxed.  As the minutes went by, the lights flashing and the sounds pulsing, he opened his eyes.  His just sat there, blinking some, looking out, so peaceful.  We were too soon called downstairs to begin the process of paperwork for hospice.  I never saw a look of peace in his eyes again.

I am so very grateful that my sister had some of his pictures printed off early the next morning.  Most of the pictures were taken soon after his birth.  What a gift from her and the LORD that I could see and remember that he had had many, many minutes of peace in his eyes.  If the images of fear had kept surrounding me, I would still be sinking.

April 8, 2011 (written 4/10/11)

His Birth

I was beginning to wonder if I truly am insane like so many people have told me.  I had had three unmedicated childbirths, so, of course, Jedidiah’s would not be any different.  But, I gotta tell ya, the last two hours leading up to his birth, I was rethinking that idea.  Of course, it wouldn’t have mattered.  During those last two hours, I was finishing cleaning up James from a dinner that hadn’t settled well, preparing the last-minute-take-to-the-hospital items, getting phone calls made, riding—uncomfortably—to the hospital for 30-plus minutes, trying to “help” Jim
find a parking spot, walking from the middle of the parking garage basement to the end of the hospital’s fourth floor labor and delivery unit, walking—again—to the OB triage area, stopping on the skywalk to realize how very close my contractions were becoming and how very far apart they had placed L&D and OB triage, signing in—yes, they had me fill out some stupid paperwork and get a copy of my insurance card (don’t they already have that on file somewhere!), walking to my room, getting monitored (for about half a second before I removed the stupid thing), waiting for the doctor to come to examine me—which occurred at 1:15 a.m.

During the exam, my water broke.  I tried to warn them that things would go fast.  Jedidiah had moved down and
engaged just before the exam.  I knew it.  I felt him.  The contraction pressure was no longer just above in the bottom of my “belly” anymore.  When she said he was 0 station, I had to ask what that meant because I
truly could not remember.  When they said he had to go to +5, I thought, “Are you serious?  This child has had me in labor for almost 23 hours (not to count the days of contractions prior to), and you are telling me I am only 7-8 cm, 90 % and 0 station!”  By the time they had my stuff picked up and everything prepared for us to move, I
tried to warn them again that they should move fast.  I started vomiting.

I remember the nurse asking Jim to take his hand off the gurney (she will push it) and her repeatedly telling me to please take my hands off the sides (I think she is the only Vandy staff member that, even from the first, I felt really didn’t get it, but I don’t think she really “got” labor at all, not just our situation).  I remember Kennedy’s sweet face, everyone stopping when the nurse told them they were going down the wrong hallway and Johnny turning while holding my green purse and something else (which was probably a good thing since that put everyone behind me instead of in front of me).  I remember thinking, “Man, that’s a long hallway.” It was the skywalk I had crossed a little while ago.  I remember screaming as he came out.  No one really seemed to pay any attention to that fact.  A door opened, and the same clueless nurse said, “Now, don’t push.” That’s when I realized that a sheet was over my legs and that they were all clueless!  I pulled back the sheet and said, “He’s out!”  I think they finally believed me then.  1:29 a.m.

April 5, 2011

Sunday morning I had some spotting, so I got off my feet.  I was 34 weeks and 5 days.  They won’t stop labor at this point for us, but I was really hoping my call Monday morning wouldn’t mean a trip to Vanderbilt.  Yep, they
wanted me to come in but were ok if I chose not to.  It was the constant, dull pain on my left side coupled with some fluid that made me think that something might be up.  Jim had to take 6 hours of leave (ugh) to come and be with me.  Well, my water is not broken, so home we came.  The pain finally subsided around 3, and I decided to nap.  Contractions, light but noticeable, finally stopped around 8.

Now, here at 2:30 a.m., I am contracting again.  This time, the contractions have awakened me.  After yesterday’s difficult exam, I am not surprised at the blood, but I really wish the contractions would stop.  You know, the “stop-and-breathe-thru” type of contractions.  The ones that you cannot deny.  Anywho, here we are wondering again if today will be today.  UGH!

I know that God’s timing is always perfect, but since it isn’t my timing, I have to pray and let go of my own agenda.  It was so much easier having a baby at home without a 40-minute drive to worry about and a team to
assemble.  I shouldn’t worry; I know that all things will work out.  I hope I can remember that as things progress, whether today is the day or not.

UPDATE:  Contractions eased around 6 this morning after growing consistent and intense for an hour.  I know,
labor can be many hours, but since my last was so short and our time with Jedidiah is expected to be short, I am too on edge for my own good!  Please increase my trust in You, Oh LORD!

MEDICAL UPDATE

March 30, 2011
FB post:   Jedi is gaining and growing; he’s only 3 weeks behind now. They think he might be 3 lbs, 9 oz given his measurements. The hole in his heart was visible today. He was completely uncooperative in moving his hands from his face, so we only caught a glimpse of his cleft lip and palate. We did get a “chubby cheek” side shot, though. Heart was beating along at 139.

It is so interesting to me that the brain and tissue donation that we requested information for is located at
the University of Maryland.  It is actually the “bank” of these donations for developmental disorders.  I have to contact them myself (the federal government’s law), so please pray that I am able to hold it together during that
call and correspondence.

Also, I am supposed to be receiving information about the closest milk bank.  I’ve gone back and forth on it so often, but I’m not sure that I can do it, not just because of the physical limitations as those of you have had pumped are aware of.  As much as I want to in theory, I am not sure that emotionally I can put myself through that, even while knowing it would be helping a little one who so needs the nourishment.

March 29, 2011

I have no desire to do anything.  No more memorial planning, no more hoping for a miracle, no more sitting under the lights, no interactions with others, no more wondering about saying the right thing or responding the right way, no reading.  Sleeping holds no sort of escape.  Rearranging the boxes scattered throughout the house is tedious and pointless.  People try to encourage me, but I don’t feel encouraged today.  Don’t get me wrong; I know their hearts are in the right place.  Mine is not.  I know they are trying; I am not.  I realize it is an evening’s melancholy, but it is where I am at this moment.  We will see the doctor tomorrow.  Probably see another ultrasound.  I should be excited.  I don’t know what I feel.  34 weeks.  16 of them I have had to grapple with the reality of imperfection, not just Jedidiah’s physical ones, my own.  Did my age cause this?  Did my desire for more children?  Did I make a mistake asking Jim not to make any permanent decisions about the size of our family?  Will I ever feel like being around people again?  I am so selfish, yet, yet… yet what? I do not know.

Man, rereading  that 1.5 days later makes me disappointed in myself yet at the same time so glad that I have the
technology to be able to get it down and out of my head for the moment as well as thankful for a husband who, the next morning, realized that I needed to get some stuff off my heart.  He asked, more than once, and when I could finally speak, I realized that I had let despair and my lack of control take over my thoughts.  He just listened, shared but a few words, and then kept loving me anyway.  We pray for those who feel they have no one to talk to—that God would bring along someone with whom they could share their dark thoughts, not being overwhelmed or discouraged by them, but finding a safe place to vent them so that despair cannot get a stronghold.  Or, as was first in my case, allowing them to journal (possibly not for the world to see) in order not to allow the thoughts of a few moments to become a belief system that will eat away at them.  We have been so blessed by being able to ‘be real’ here, and I pray that my willingness to post will lead someone else into
the knowledge that they have a voice.  God always has an ear for us, and I am so thankful that He has never left
me alone in my despair, even when I could not feel or hear Him.

What would I do without all of ya’ll’s prayers, support, and encouragement?  I might have sounded so ungrateful in that evening’s moment, but please know that is not my heart of hearts.

March 28, 2011
While trying to get the computer set up for the children for school, I got distracted with some of the files I had
been working on the day before—namely, the one for memorial plans for Jedidiah.  Jacob came up from behind me, gave me a quick hug, and then just looked at me a moment.  I wondered if he was annoyed that I had made
him wait longer than I had said, so I said, “Sorry, just something I have to do.”  He replied, lovingly and kindly
without a hint of any annoyance, “I know but I wish you didn’t have to.”  What an amazing young man!

March 28, 2011

Stained Glass Windows by Daniel Doss Band

Last week I walked on water
Today I’m sinking low
Can Your hand reach down to me
Pull me up once more

The dreams I had are shattered
All scattered on the floor
The last time You picked up the pieces
And helped me dream some more

CHORUS:
‘Cause we’re making stained glass windows
Every piece a different shade
Broken and then put together
Like a big mistake
Oh, but when the light shines through
The colors form a tapestry
A hundred different images of how
You keep loving me

Oh, each moment You are with me
Each word I hear You say
Helps me understand and trust
In Your higher ways

Oh, the roads that go through valleys
Oh, they help me cling to You
And when we find a mountaintop
We’ll dance the whole day through

CHORUS

March 24, 2011

Here are three of the images we have of Jedidiah.  Sorry it has taken so long to get them on here.

The first is from December.  The next two are from the beginning of February.  The second shows how his nose and lip are actually separated, even though the third makes it look like they are connected.  The lip is bilaterally clefted as well as the palate.  We have an adorable image of his little nose, but the rest of the image is so
distorted because of his position, so I didn’t put it on here.  Also, the second image shows something on his forehead.  That is the only time we have seen that, so I have no idea what it is.  We have an appointment next week, so, hopefully, we will have more images then.

March 23, 2011
Ok. Well, yesterday, I was obviously wrong.  The last hour of waiting to feel Jedidiah move proved (or is it ‘has proven’?) that I am scared beyond all measure of losing him and haven’t come to terms with it at all.  After waking numerous times in the night and not feeling him and then being completely awake and waiting for an hour, Little Man finally moved and my heart leapt inside of me.

Yet, I have never known that type of fear, and as those of you who know me well know, I have struggled with fear my whole life.  I have held onto His words about fear and they have brought me all measure of comfort and peace, and it was again His word that brought me comfort as I fought the fear of losing Jedidiah.  Ecclesiastes 12:13 states, “The conclusion, when all has been heard, is: fear God and keep His commandments.”

Why the end of Ecclesiastes?  My thoughts had jumped all over the place and settled on “Why bother?  If I am going to be in pain and suffer,
whether through someone else’s actions or the death and destruction of this world or my own actions, then why bother with being nice, doing the right things, trying to honor and respect others, attempting to bring God glory?  Why bother with any of it?”  That’s when God reminded me of Solomon (named Jedidiah by the LORD) and his words after falling away from the LORD’s teachings and ways.  After struggling with
fulfilling his life with so many distractions and pleasures, Solomon ultimately came back to the God of his youth and declared that He is the only reason for living.

March 22, 2011
How do I admit that I am scared?  Not to lose Jedidiah because I have now had 15 weeks to come to some sort of terms with the fear aspect of
that.  Not that I am ready for it, by any means.  However, how do I admit that I am afraid of his survival?  Of not being the mother who can handle having a child with special needs—a child who will take extra patience and extra knowledge, knowledge I do not have?  What if I do something wrong?  What if I can’t be all that he needs me to be? What if in his needs and my desire to spend every possible moment with him, I ignore or neglect my other precious boys and fail them somehow?  Please, I want him to live.  I want to see him grow and change and laugh and love, but I am afraid, afraid that I will fail him if he does survive.

March 20, 2011
     Ahhh, church today.  I told Jim yesterday that I wasn’t going to go.  I have so much I want to get done before Jedidiah arrives, and sometimes it is just so hard to see and hear strangers smile and congratulate me on my pregnancy.  Jim asked if I was sure but then neither said nor did anything else to relate what his feelings might be on the matter.  Anywho, I wasn’t going to go, but since Jim was leading the discussion in his class, I needed to be up and helping getting the kids ready.

     I realized that I really should go, not because God demands it, but because I knew in my heart that He has had a blessing for me each time I have gone, even when I really didn’t want to.  When I showed up at the top of the stairs dressed and ready to go, Jim gave me the most amazing smile.  I felt like the belle of the ball at her
coming out party.  That man has a way of making me feel treasured… Blessing #1.

     While going to the bathroom at church (pregnant women do that A LOT), I overhead a mama speaking to her young daughter about holding her dress up.  I realized that there is a whole world of parenting of which I know nothing about.  😉  While washing our hands, the little girl was awed by my big belly, and her mother was so sweet in her comments about the baby that I just couldn’t help but smile and laugh at their recognition of Jedidiah’s life… Blessing #2.

     We spoke with a former co-worker of Jim’s and I found out about the possibility of a very cool field trip…
Blessing #3.

     Worship.  Wow.  We had a guest worship band—the Daniel Doss Band, and they had put the old hymn “Just as I Am” to a new arrangement with their own chorus.  I was really taken with how God accepts us just as we are, warts and sins and all.  But, I was reminded again of how perfectly and uniquely Jedidiah has been formed, just as he is… Blessing #4.

     More worship.  Bigger wow!  Daniel, the lead singer, shared how he and his wife hoped to have a child of their own, but God continually said, “No.”  They felt lead to adopt, and God said, “Wait.” When He finally placed a
little one in their hearts, He allowed the birth mother to change her mind, and after six days of loving their precious baby boy, they had to give him up.  The hardest day of their lives.  After a short time, He then placed their second baby boy in their arms; this time to stay.  Daniel wrote “Stained Glass” after that… Blessing #5.  (When I can get the words, I will put them on here for you guys.)

    Thank You, God, for Your blessings, even in the midst of difficulties.

March 17, 2011
     We had our maternity photo shoot this evening.  It went well.  The news crew from Channel 5 (who is doing a
story on the nonprofit organization Now I Lay Me Down to Sleep) was there for a part of it.  It was interesting to be mic’ed and all that.

     The boys looked so handsome in their white button downs, and Allen got some great shots of them looking at
Jedidiah.  Lots of great shots, actually.

     I was much more nervous than I expected to be.  I am not sure why.  I guess some of it has to do with knowing how badly I have misrepresented the LORD in my past, and I really want to make sure that even through a story about another organization, our actions bring God glory through Jedidiah’s life.  Does that make sense?  Plus, who wants to look bad on TV?  See, my motives aren’t totally pure, I realize. 🙂

MEDICAL UPDATE

March 16, 2011

We had an appointment today with my OB/GYN.  She is great; I really enjoy seeing her.  PRAISE: Jedidiah is measuring well considering how small he has been measuring.  He is still small, of course, but he not only grew ‘4 wks’ since I last saw her which would be normal, he actually grew ‘5’ (uterine measurement in centimeters).  Often, when measurements are taken by different doctors at different offices, I don’t pay much attention, but since she is the one who took the last one, and she was happy with this growth, I will take that as a positive.  His heart was beating along at 143 beats per minute; I love hearing that sound.

March 15, 2011

The Lights and Sounds of My Life
Husband:  He lights up my world.  He tells jokes and makes faces and has great comebacks, just to make me laugh.  He snores, sometimes, but not too badly.  He prays with me every night before bed and engages me in conversations about the LORD.  He listens, A LOT, to my carryings-on, and he always makes appropriate and well-timed comments; thus, I know he isn’t faking his listening.  He turns on jazz and Christian music for me at various times.  And, he always makes sure I have silence when I truly need it.

Boys:  They run, they jump, they play, they hit, they Wii, they fight, they talk LOUDLY.  Need I say more?

Dogs: Anakin whines.  He barks if anyone is outside on the street, no matter how far from the house.  He barks to come in.  Otherwise, he’s sleeping.  Cocoa snorts and sounds more like a hog than a dog.  And, she snores—all night long!

Nieces:  They create, they chat, they sing, they play piano.  Precious!

American Idol:  My family began enjoying American Idol this season.  We have never watched it before, and although there are some things I would change (the non-family-friendly commercials!), we have been impressed by the talent and judging.  Of course, I still take issue with the concept of ‘idol’, but this is one of the lights and sounds that has become a routine in my life.

Ceiling Lights and Ample Sunshine:  I want some better lights in the house.  Sometimes in the evenings and
at night, it seems so dark and dreary.  Yet, during the day, with the one corner of the living room being the
exception, light streams in from our windows, brightening our time and our hearts.

Phone:  It went out a few weeks ago.  Wow!  I never realized how much those you-just-got-a-message sounds really enhance the day, keeping me connected to loved ones.

Beam Ray:  A light tube flashing blue light in my room for 3-4.5 hours a day (not all at the same time) and a speaker that beeps at various output and pulse frequencies.  You were wondering what the lights and sounds of my life had to do with Jedidiah, right?  Well, this is it. 

Back in December after a truly difficult day of digesting all that the pediatric cardiologist had to say, we saw a friend and sister in Christ.  She shared with us about the use of light and sound technology in other medical
areas, something I have been interested in for a while.  She has a machine that she uses for her family and offered to have me come and sit under the lights.  There is no harm to a human to be under the lights, so I knew that I would not be “experimenting” with possibly harming myself or Jedidiah.  After praying about it and investigating information from multiple sources, I spoke with the owner of the company, a compassionate man who made no promises and was willing to let us use the technology if we felt led to do so.  Through an amazing blessing of generosity, not only am I able to try the lights, we have a Beam Ray machine in our home for the reminder of my pregnancy to investigate if it could make a difference for Jedidiah.

    I had read years ago about deep ultrasound being used to help regenerate tooth enamel (in Canada, I think).
I know light therapy is used for seasonal affective disorder.  Newborns with jaundice are put under “bili-lights.”  We know that microbes do react and die under certain light and sound pulses, and we have seen how lights
and sounds can be used effectively to change a human’s body signals, even to be used as effective weapons (immobilizing but not harmful). 

     All that said, I have no idea if the light and sound frequencies will make a difference for our beloved Jedidiah,
but I do not want to be sitting at my kitchen table 30 years from now reading a magazine (or a tablet if mags are obsolete by then) and read that technology has advanced to the point that light and sound frequencies are being used to aid in other medical applications such as heart healing, brain stimulation, and cellular reprogramming (my made-up words).  Whether it makes a difference for us personally or not, if Jedi’s life can help to further impact alternative research as well as orthodox medical research (body donation), then that is what I want to do.

March 12, 2011

I love silence; I crave it.  Today, for the first time that I can ever remember, I needed to fill the silence.  I couldn’t cry, again.  It just hurts too much, and the headache that follows is excruciating.

March 10, 2011
Yesterday morning before 4 a.m., Jedidiah began moving more than he had in the three previous mornings combined.  He was all over the
place.  Soon thereafter, I began having waves of nausea.  Now, nausea and I are old friends during all of my pregnancies, mostly James’ and Jedi’s, but, still, Jacob’s was the one in which labor began with four hours of waves of nausea every four minutes apart.  With waves of nausea coming on, about every ten minutes, I had a contraction.  I tried to calm down and remind myself that nausea had been visiting again for many nights of the past few weeks, and then I had the second contraction.  I lay down and asked God for now not to be the time to lose him.  After two hours of waves of nausea, now coming about every 7 minutes and contractions coming at varying times, I knew I had to tell someone.  Jim awoke and a friend had sent me a fb message, so I asked them both to pray for us.  I knew I was beginning to be really scared and letting fear and stress control me.
I decided to take the morning very slowly, staying in bed as long as possible.  The waves of nausea began to subside soon after that, and by 8:30 I was sure that I probably wasn’t in labor.  Three or four more (milder) contractions (and some pressure that I really don’t want to experience again
‘til labor) occurred, so I got back into bed until around 10.  By then, everything was calm, including my heart, and I could face the day.

MEDICAL UPDATE
March 2, 2011

Jedidiah is 30 weeks and 1 day today.  His measurements put him into the less than 3^rd percentile in size (anything less than 10% is considered intrauterine growth retardation).  His forebrain appears normal, and his cerebellum is measuring large because of the gap.  The Dandy Walker malformation of his brain was obvious to us today—it looks like two cerebellums instead of one and the space between the back of the brain and the skull is too large and has too much spinal fluid.  I asked the OB what the survival rate of children without trisomy 13 but with Dandy Walker is; she didn’t give an exact number/statistic, but she did say that Dandy Walker itself is not what would necessarily cause his death.

His heart was the most troubling to me.   We could see the hypoplastic left ventricle, but we could not see the double outlet due to his positioning.  Also, we could not see the hole between the right and left ventricles.  I realize that a hole in the heart should not be desired, but I guess I had counted on that hole to give us more time with him because he would then have some oxygenated blood.  Of course, the hole may still be there and we just didn’t see it.  Or, it has healed.  Or, it was never there in the first place.  Medically speaking, I don’t know if the hole even matters.

On any account, I realize what little things I hold onto and do not realize how they have affected my views until that hope or thought is gone.  There are so many unknowns.  I don’t know how to prepare.  I am a control-freak, and this just drives home over and over and over again how little control I have.

March 2, 2011

Preparing for His Arrival… and Departure

I sent an email yesterday to the Area Coordinator for Now I Lay Me Down to Sleep, a nonprofit organization of
photographers who volunteer their time and talents to help capture the fleeting moments of the lives of little ones when the families have to say goodbye. www.nowilaymedowntosleep.org I sent an email not sure of what to expect or what to say but received a call soon after because “this is such a personal time, I wanted to contact you personally.” Allen Manus has heart!  He was comforting and respectful while also being informative and professional.

Their organization is simple.  When I go into labor, I (or someone for me) will call him.  If the timing works for his schedule (remember, this is volunteer work outside of a fulltime schedule), then he will come to the hospital and do a photo-shoot right there. If he is unavailable, he will try to find another photographer that is near that hospital to come.  The photographer will then retouch the photos and give us a disc of them.  All of this is done as a gift to the family.

Oh man!  Can you even imagine such a gift?!  I remember my mom taking a million pictures of the boys and how it drove me crazy, but, how I love those pictures now!  I am so grateful she put up with my, “Aww, Mom, not again” and kept shooting anyway.  Now, to know that there is a possibility that someone will allow our whole family time with Jedidiah without worrying about those memories being captured… what a blessing.

As I tried to compose that email, my emotions of taking this step to prepare for Jedidiah’s arrival and departure
were on my sleeve.  The children had no idea what I was doing, why I snapped at them for their constant interruptions, or why I then began sobbing at the computer.  Yet, all of a sudden, I had four sets of arms encircling me—holding me, crying with me.  Ahh, the sweetness of that moment.

February 26, 2011

Thursday was a a highly emotional day for me.  I don’t know about the rest of you, but when I am dealing with many emotions that I want to run from, it comes out as anger (and lots of chocolate eating).  I received a sweet text from a friend in the afternoon and tried to respond appropriately, not with all the anger that my poor family had been dealing with.  That night, we watched a bit of TV with my head hurting so badly.  When I awakened the next morning after being up much of the night due to major storms in the area, I begged God to please give me a better day–to wrap His loving arms around me and show me how to get over myself and love the people around
me.  The God of the universe whispered, “My dear child, didn’t I do that yesterday?  Yet, you chose not to see and hear.  I sent you your husband to simply keep loving you despite your unloveable-ness.  I allowed you time to
spend in the ladies’ Bible study that you have missed so much.  I gave you your four precious ones to hug you and need you and want you throughout the day.  I gave you time with your earthly father who only wants to see a smile on your face.  And, I sent a friend out of the blue to send you a text message from Me–a message of hope and a message of encouragement, no matter My will.”  And, I had to stop and realize that I had missed the gentle whispers, so the storm had to get my attention.  He didn’t condemn me for missing it the day before; He
simply wrapped His comforting voice around me and reminded me that each day is new and full of hope.  That I could make a different choice for Friday–to watch for the love, for the hugs, for the encouragement, for the blessings that surround me.

MEDICAL UPDATE

February 23, 2011

Here is an image that Jim found that helps describe Jedidiah’s heart condition.  He has a double outlet right ventricle with a hypoplastic (small) left ventricle.  The doctors have warned us that he will be some shade of blue, probably within a few minutes of birth as the ductus arterious closes off.  This is not likely the condition that will end his life, though.  With trisomy 13, babies’ brains simply get to a point where they do not send the message to take a breath.  When that happens, the heart will simply slow down until it stops.  Babies with full trisomy 13 are the ones where this usually happens much sooner; whereas, babies with partial and mosiac trisomy 13 have a tendency to survive longer.

February 23, 2011

     Thanks to so many of you who gave me encouraging words yesterday!  With the posting of all these journal entries onto this website, I felt very exposed to the world.  I realize that many folks have blogged for years, but I have not, and to begin by sharing this journey has been quite intimidating.  Please note that I will not get it all right, theologically or intellectually, but I will be honest and open.  If you have questions or insight, please email me or talk with me.  I want this journey to be one that glorifies the LORD, not myself.

     Mercy Me’s song “This Life” has come to mean so much to me these last 11 weeks.  I have cried and I have danced while it plays.  Here are the words…

“This is not my home.  This is not my space.  Simply not
my style.  This is not my place.  Can’t get comfortable. Can’t get settled in.
I simply don’t belong.  Can’t get used to this.  But I’m here right now.  I can
hear You say “Make the most of me.” This won’t go to waste.  If I’m out of my
mind yeah.  It’s all for Christ.  If I’m making sense then get in line.  Every
moment is a chance to let your light break through.  This life, this life was
meant to shine.  This life, this life was meant to shine.  I don’t have to
stall.  I don’t have to wait.  Don’t have to bide my time.  Till I make my
escape.  ‘Cause heaven’s in my heart.  I won’t settle for less.  I will lift
Your name by the life I live.  Every moment is a chance to let your light break
through.  This life, this life was meant to shine.  This life, this life was
meant to shine.  It’s in my heart.  It’s in my soul.  I’ll live every day just
to make You known.  This life, this life was meant to shine.  Hold your heads up
high.  This is our moment to rise.  We were meant to shine.  Not just
survive.”

February 21, 2011

This past weekend was hard.  As you may know, we lost a little one due to a tubal pregnancy on February 19th of last year.  While I am faithful to the LORD and His ways, I must admit that my heart has ached due to our loss and facing the truth about Jedidiah’s future.  I am hard on myself, thinking that others have been able to move on so much better than I, that maybe I am not as strong in the LORD as I should be–blah, blah blah!  The LORD is faithful; He is strong; He will never leave me or forsake me, and I am reminded of that in tiny ways each time I go down the “Blah, blah” trail.  I still sometimes start onto it.  And, yes, I do understand that grieving and sadness are not weaknesses but a part of life and totally acceptable in His sight.  However, I find that I can’t play the “poor little me” game, even all by myself.  He has sent His people (and those who I pray one day will be His) to be His hands and His heart–loving me, holding me, and surrounding me with their presence so that I can get through the dark times.

February 19 

Frustrations…
the older I get, the less I like roller coasters.  I enjoyed them as a child (after I puked the first time), but I never understood the need of so many people for the constant adrenalin rush.  Emotionally, however, I have NEVER enjoyed roller coasters.  I know people who live life going from (or creating) one drama after the next, interjecting with major highs.  I prefer a much more even trip.  However, you will see from day to day, even moment to moment, I journey from extreme anger to joy at feeling little man move to disappointment that I am not a better mom through my pain to overwhelming sadness to straight-pan matter-of-factness to… well, you name it.

February 18
An assistant at my doctor’s office means well, but I really think she doesn’t have a clue.  Just this past Monday as she read our birth plan for Jedidiah, her one question was specifically about our choice not to have him subjected to the eye ointment, shots, etc. that well-meaning (albeit sometimes misguided) medical professionals have come up with as routine for every and all babies.  “So, you are not going to give him the {medical term for the vaccinations}?” “Umm, no.”  What I wanted to say was, “Excuse me, my son is going to die, and you are concerned whether he will receive a vaccine shot?!”

February 17
Some people want to touch my belly—a lot.  Some people barely want to acknowledge that I am pregnant.  I get
it.  They have to get their minds and hearts around what is happening, but I gotta wonder… how do I politely tell
someone that they are overwhelming me with their constant touch when with others, I want to grab their hand and keep it on my abdomen until they feel one his big kicks and can’t ignore him anymore?  I guess it is the roller coaster thing again.

February 17
Not sure if I should be posting my random thoughts.  I thought about just posting the warm, fuzzy ones.  The ones when I am best focused on the Lord and all the many blessings—yes, Jedidiah is included in those.  Yet, that isn’t my reality.  My reality isn’t warm and fuzzy.  I don’t always stay focused on the Lord the way I have seen so many others do through hard times.  So, I hope you will not judge my difficult moments, but instead, will pray with me and for me to get me through to the other side of the questions, pain, and frustrations.  The Lord is faithful even when I am not, and I am awed by His goodness and mercy when I am so very aware of how much I do not deserve them.

February 15
I have a neighbor who just lost her husband after a long, painful illness.  I want to reach out and I want to comfort and just listen, yet I find that I sometimes can’t face her for fear of knowing what I have to face.  Other times, I find such comfort in speaking with someone who knows grief and hasn’t come out yet on the other side to give me all the platitudes.  Of course, I am thankful (most times) for those who continue to say God’s Truth despite my hurt.

All over the place!

MEDICAL UPDATE:
February 14
My abdomen should measure close to 28 cm at this time, but little Jedi is only causing it to measure at 23 cm.  I guess I could look at the bright side… labor and delivery should be easier, right?  Never having had a large baby, I really wouldn’t know.

February 14—fb post
remembering my little one from a year ago and writing Jedidah’s birth plan… it’s gonna be a difficult week. *sigh*

February 13—fb post
I am sitting under the lights feeling sweet Jedidiah move around. “I will sing of the lovingkindness of the LORD
forever.” May you have a blessed and glorious day!

February ??
Funeral Planning
I think the lady from church must think I am nuts.  I realize that many people have no warning whatsoever that they are about to say their earthly
goodbyes to a loved one, and the funeral can be planned in the matter of hours.  However, I cannot see that in my grief I will want to do that.  So, I took the advice of the Vandy team packet information and began the process of planning Jedidiah’s funeral.  Thankfully, the packet of information was very detailed and forced me to look at some things that I had not even considered.  Music, where in the church to hold the service, DVD of his pictures, whether we will even have his body or ashes, what I should wear or the children should wear, who and how many will actually come (I don’t want to choose a place in the church where we will have room for 200 and have 50, nor do I want to assume 30 if we end up with 100—how exactly does one go about figuring out that number???).

February 7—fb post
“Life is not measured by the number of breaths we take, but by the moments that take our breath away.”

MEDICAL UPDATE
February 2
His cerebellum is measuring 2.1 when it should be 2.6.  It is five weeks behind in growth.  Of course, with all
the other malformations, I don’t know if that is a good or bad thing.

February 2—fb post
WOW! Vanderbilt is amazing. The team is supportive and open to our desires and birth plan. What a blessing!

February 2—fb post
4 appointments back to back at Vanderbilt Children’s Hospital. Pray we get our questions answered.

January 14—fb post
so glad to have distracting library books this night!

Early January, 2011
Waiting to Say Goodbye

I was speaking with a close friend, explaining what we had recently learned about our precious little one, when she asked what we will do now.  I told her, “We wait.”  I didn’t know what else to say.  She asked, “What are you waiting for?”  That’s when it hit me… “We wait to say goodbye.”

We know that we will be earthly separated from each and every one some day.  We hold to the hope that there is more after this life, that we will be reunited in heaven.  That is what got me through the loss of our baby #5, one too little to even know if she was a boy or girl, but who in my heart has been known to me as Savannah Grace.  Knowing that someday I would have the chance to hold her, as I never got the chance down here.

But, with Jedidiah, it is different.  So far, no one can experience the moments and the pleasure, the hope and the happiness, that he brings to this earthly life.  No one but me.  Waiting to say goodbye to someone whose heart
beat I have seen, whose very life depends on me…  I wait.

Everyday, the chance increases that I may see him take a breath.   Yet, if that breath would cause him to suffer…  But, my arms, my breasts, my heart, long to hold him, to suckle him, to look into his open and alive eyes.  I am waiting to say goodbye in God’s perfect timing.

January 11, 2011

Incompatible with Life
     Jedidiah is moving and shaking!  He has incredibly active days, days when I am so tired but he keeps me awake with his wiggles.  Incompatible with life?  He brings a smile to my face; is that incompatible with life?
     Jedidiah’s medical condition teaches me how to look at my other children differently.  Instead of seeing their imperfections, I only see their beauty.  Instead of seeing their mistakes, I can better see their triumphs.  Incompatible with life? He teaches me to focus on the positive; is that incompatible with life?
     Jedidiah allows strangers to reach out and express their emotions and their stories—to bring me comfort, joy,
and peace in the midst of their own sorrows.  We are brought together by a baby not yet outside the womb.  Is that incompatible with life?
     Jedidiah makes me rethink my entire purpose for living on this earth.  I realize that I am not here for my own pleasure and enjoyment.  I am here to bring God glory and invest in the relationships He has given me.
Incompatible with life?
     He shows me how to accept God’s gifts—no matter what the package, no matter what the time frame; is that incompatible with life?
     Jedidiah’s life will be short.  No matter how I look at the situation, I know that I will have to say goodbye to him.  I could have taken control of when that will be, or I can cherish every moment of every day.  He instills in me a desire to treasure even the tiniest of moments; is that incompatible with life?

January 11—fb post
“But I’m here right now. I can hear you say-make the most of me. This won’t go to waste… This life was meant to
shine. It’s in my heart. It’s in my soul. Live every day just to make it known.”
–MercyMe

January 8—fb post
Up… and Jedidiah is wiggly!

January 2—fb post
How wonderful to feel Jedidiah moving around!

January 1, 2011—fb post
A new year… a new hope. May you be joyful this year, come what may.

December 24, 2010
Born to Die
  The Bible explains to us how EVERYONE has a purpose on this earth.  God created even the wicked for their
day.
  Jedidiah was conceived; he was molded and shaped with his seemingly
imperfect body; he was born to die.
     In the case of Christ, I understand. But, in Jedidiah’s case, I don’t.  I was overwhelmed at the church’s Christmas Eve service when I heard the expression, and it opened the floodgates in my heart and mind.  Indeed, if God is in control, then Jedidiah, too, is born to die–an early and uneasy death.  Why?  Why would the God of the universe need to create a seemingly imperfect child in order to bring Himself glory?  Why?  Why would He need to use our family’s pain to reveal Himself?  Maybe I think too much of myself that I believe that God would use me—in my selfish, adulteress, idol ways—to bring Him glory.    But, believe it I do.    

     Yet, still, my mother’s heart cries out… why must Jedidiah be born to die?

Odd sort of poem: “It cannot last.”
It cannot last. That which we do not treasure.
That which we do.
It cannot last. That to which we hold on tightly.
That to which we loose.
It cannot last. That which we do not understand.
That which we know.
It cannot last. That to which we try to escape. 

That which we run to.
It cannot last. That which we gain.
That which we lose.
It cannot last.

December 23, 2010—fb post
Yesterday, the peds cardiologist confirmed last week’s echo results and shared that even under the best of
circumstances (ie no trisomy 13) that he would not do an operation until around 4 months, at the earliest. He did say that a cesarean would not be any easier on Jedidiah’s heart, so we do not have to go through such a major event. Lots of tears today, but your mgs, thoughts, and prayers have helped so much!

December 20, 2010
Jedidiah is moving so much more.  It is wonderful to feel him inside me.  Yesterday at church “God’s Girls”
prayed for us.  It felt so good to share with Anita that I have a goal… to ask as many questions as possible, making sure that the medical community understands that no matter how short his life, Jedidiah matters, even if healthcare funds would be better allotted if I had just aborted (how do I hate that slideshow!).  I have to point out that our medical team has never even suggested that we should have had the screening in order to end the pregnancy; however, much of the “research” and many testimonials that I found show that our experience was
not the norm.

Looking into fetal surgery centers around the country, I realize that Vanderbilt has lots of experience, although
Boston has done more work on the heart.  I do not yet know the risk to my life, and I will not knowingly leave the
boys motherless, but I must try to see what can be done.  There are many more full trisomy 13 babies out there living than I realized.  These babies used to live a month (47% in the 80s), but that has dropped significantly
(down to 17% in the 90s) as the medical community has written them off as gonna-die-anyways.  I realize that in
some cases it is that the pain and medical interventions seem more cruel than necessary, but I am distressed to think about the lack of energy and research that seems to go into a middle ground possibility for these babies.

From
http://trisomy13-patausyndrome.blogspot.com/2010/01/4-things-youd-like-to-tell-your.html:
“One thing another parent told me which I found particularly insightful was T13 is a diagnosis not a prognosis.  I think it would be helpful if more doctors understood and acknowledged this.  Just as a simple diagnosis of cancer does not give you any idea of your prognosis without looking at the specific details and symptoms you are personally facing.  Neither does the broad description of T13 without looking at the individual symptoms.  Even when looking at the symptoms, the doctors are not God and they are not omnipotent. Thankfully most of the doctors we have encountered readily admit this.”

“Another thing I might tell an unsupportive doctor is that while I certainly appreciate statistics and they do
have their place, children are not statistics and should not be treated as such.”

December 16, 2010—fb post
upstairs toilet overflowed this morning. my boys were awesome helpers! since jim’s at work, we got uncle scottie
to help move the downstairs furniture. i had a bit of a meltdown. thankfully, my boys just let me cry and understood i wasnt upset with them.

December 12, 2010—fb post
Today is another day that I get to have Jedidiah growing inside me. I praise the Lord for each moment, each tiny
movement, each chance to whisper his name.

December 8-18, 2010
The Beginning

“What is the best case scenario and what is the worst case scenario?” I asked.

“Best case is a cleft palate and we simply aren’t seeing the heart well enough.  Worst case is trisomy 13 which
is incompatible with life.”

I was numb.  I was sad.  I grieved and said goodbye.  Until three days later.

Then, I got mad, really mad.  I have spent the last 7 days mad at just about everyone around me, including
God.

Today, day 10 of knowing that I will say goodbye too soon to one of my precious blessings, I feel that a burden has been lifted.  The Lord must be hearing others’ prayers because I have hardly prayed, except for when it came out as a second nature/habit sort of thing, and then I would just stop.

A close friend just listened as the floodgates opened, and my sister allowed me to communicate my heart—my jumbled, confused, hurting heart.  Then, my husband—ever-solid and ever-loving—provided his support to my need to research, question, and explore the possibilities.  Do I want aggressive, active care? I don’t know; give me more information.  Do I want to end things early? Not an option in my heart and mind.  Do I consider a
home birth and quiet, private death for our baby?  Do not tell me that all options have been explored in 10 days when we live in the 21st century and have so much medical technology and innovations to explore.  Most likely, will my son die within hours of his birth if he makes it till then?  Yes.  Do I want the chance for his life and our
suffering to matter for medical advances to be made?  Possibly.  Am I willing to risk my own life and leave my four healthy, growing, changing children behind? Yes and No.

MEDICAL UPDATE

December 10, 2010—fb post
Test results show full trisomy 13, which has a bad prognosis. Baby is a boy–Jedidiah, Beloved of God.

MEDICAL UPDATE

December 8, 2010—fb post
How to say this… the ultrasound revealed that Baby has a bilateral cleft palate, heart and brain defects, and an
extra digit on each hand. The combo doesn’t look good, but we get more results on Friday. *sigh* Please pray.