Refiner's Fire

Wow....my previous posts were so optimistic. It almost makes me feel bad for attempting this next post. Let's just say that nothing bursts my "faith bubble" like a good 'ol visit to the OBGYN's office. Maybe it's too strong to say my bubble was burst, but it kinda brings things back to the reality of what is currenlty going on inside my belly.

We started our visit with an ultrasound (u/s). This is one that Lewis and I requested because we wanted another chance to see Joy. Our OB, Amanda (yes, we are on a first name basis), was so kind as to allow us to do this although it is not really needed. Joy continues to have a good strong heart beat despite the fluid that is surrounding her heart. She continues to have a build up of fluid around her brain, and her organs are still floating around in the amniotic fluid, which by the way....the fluid levels are good. This has been an apparent concern given the limb body wall diagnosis, however it seems to be a non issue here. Joy is in a breach position....head up, feet down....with the likelihood of her turning head down very very slim. She does not have a normal umbilical cord to allow her the freedom of movement like other babies. In fact, as the u/s tech was showing us the side profile of Joy's face you could not help but see this mass right in front of her face, which is believed to be her liver. The coolest thing we saw outside of her heart beating away was her swallowing. All the signs of life are there. On the flip side of that it breaks my heart to think of the numerous abnormalities that Joy is dealing with.

In light of the unlikely event that she turns head down you can imagine I will no doubt have to have a C section. Being a woman who has had two successful vaginal births and relatively easy birth expereinces at that, it pains me to think of the idea of being cut open to deliver Joy. Initially upon hearing this possibilty several weeks ago my first thought was....oh great....so on top of all the emotional pain I'm going to be dealing with I have to have physical pain to go along with it. Nice! I think I am slowly getting over it. I'm not really worried so much about the physical part of it all. To try and spin a positive out of the C-section I can look at it like this. At least I'll have a scar to remind me of where Joy was. To some that may sound sarcastic, but I assure you there is no sarcasm in that at all. For me, I am wanting to hold on to everything I can of her. As it is I will have limited things to remember her by considering the likelihood of her short life. The scar will be permanent.

Both scars will be permanent, the physical and the emotional. I thought it might be helpful to look up the word scar....this is what I found a top the google search.

Scars (also called cicatrices) are areas of fibrous tissue that replace normal skin (or other tissue) after injury. A scar results from the biologic process of wound repair in the skin and other tissues of the body. Thus, scarring is a natural part of the healing process. With the exception of very minor lesions, every wound (e.g. after accident, disease, or surgery) results in some degree of scarring.
Scar tissue is not identical to the tissue that it replaces and is usually of inferior functional quality. For example, scars in the skin are less resistant to ultraviolet radiation, and sweat glands and hair follicles do not grow back within scar tissue. A myocardial infarction, commonly known as a heart attack, causes scar formation in the heart muscle, which leads to loss of muscular power and possibly heart failure. However, there are some tissues (e.g. bone) that can heal without any structural or functional deterioration.
The word scar was derived from the Greek word eschara, meaning place of fire (fireplace).

Take what you will from that, but the last sentence had the biggest impact on me...place of fire. It is funny how reading one thing leads you to think of another. So I'm just going to go with it....bear with me. When I read that last sentence I thought of the song I haven't sung in church in many years...Refiner's Fire. This got me flipping through my Bible and googling. In Malachi 3:2 it talks about the refiner's fire. He will sit as a refiner and purifier of silver; he will purify. Off to the side of the scripture it explains what a refiner's fire is....The process by which precious metals are shaped. The goldsmith stokes up the fire until it's hot enough to burn away all impurities.

In my google search I found something very interesting. Read below;
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The Refiner's Fire


This is for anyone passing through tough times.



There was a group of women in a Bible study on the book of Malachi. As they were studying chapter three, they came across verse three, which says: "He will sit as a refiner and purifier of silver. "

This verse puzzled the women and they wondered what this statement meant about the character and nature of God.

One of the women offered to find out the process of refining silver and get back to the group at their next Bible Study. That week, this woman called up a silversmith and made an appointment to watch him at work.

She didn't mention anything about the reason for her interest beyond her curiosity about the process of refining silver. As she watched the silversmith, he held a piece of silver over the fire and let it heat up. He explained that in refining silver, one needed to hold the silver in the middle of the fire where the flames were hottest, so as to burn away all the impurities.

The woman thought about God holding us in such a hot spot -- then she thought again about the verse that says, "He sits as a refiner and purifier of silver."

She asked the silversmith if it was true that he had to sit there in front of the fire the whole time the silver was being refined. The man answered that yes, he not only had to sit there holding the silver, but he also had to keep his eyes on the silver the entire time it was in the fire. If the silver was left a moment too long in the flames, it would be destroyed.

The woman was silent for a moment. Then she asked the silversmith, how do you know when the silver is fully refined?

He smiled at her and answered, "Oh that's easy -- when I see my image in it."

If today you are feeling the heat of the fire, remember that God has His eye on you and will keep watching you until He sees His image -- in you.

Be blessed!
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I don't know if all of this pertains to my situation, but I certainly know that through Joy God is shaping me....and it is all a part of my journey to become the person I am meant to be. I've known this for a while, it certinaly is no epiphany. The question I can't help but ask may be obvious....why does God have to use Joy to get me, to get Lewis, to get our family where we need to be. This is where I have a difficult time. I don't understand, at least not yet. Surley He could have gotten our attention another way that would not cost us the life of our unborn baby? Like I've said before...He has His reasons.

Isaiah 55:8-12 For my thoughts are not your thoughts, neither are your ways my ways, declares the Lord. As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts. As the rain and the snow come down from heaven, and do not return to it without watering the earth and making it bud and flourish, so that it yeilds seed for the sower and bread for the eater. So is my word that goes out from my mouth; It will not return to me empty, but will accomplish what I desire and achieve the purpose for which I sent it. You will go out in joy and be lead forth in peace; the mountains and hills will burst into song before you, and the trees of the feild will clap their hands.

Wow, I think I just I got a word from God. How awesome is His timing!

You've got questions...we've got answers....ummm maybe?

Lately I've had the feeling that Joy is going to surprise everyone. I've never had so much hope as I have had this week. I can't quite explain it. I just keep thinking what if "they" are wrong about her and her diagnosis. If you know me well enough you probably know that I always question doctors...for some reason it's in my nature. Not out of disrespect or not valuing their position, but in the mere fact that they are human. They can make mistakes too. Quite frankly, they just don't always have all the answers.

Not having all the answers seems to be a common theme here lately. I've learned to accept that there are not always answers to the hard questions, but then again I always seem to question the answers that I am given. This certainly is nothing new. I hate this saying, but it's the best way to describe my position on a lot of topics. I tend to play "devil's advocate." I tend to argue and debate traditional thinking on a wide variety of topics. Certainly now when it comes to Joy you can expect that will not change. Even when it is something I don't agree with I always like to try and understand the other position. I am rarely swayed by such understanding, but I think it helps me to feel secure about the stance I take.

Wow, where did all that come from? I'm thinking I have become to complaisant in accepting Joy's fate and diagnosis. Me, the one who always questions authority and doctors even more has become status quo? I just accepted that they are correct in her diagnosis. As I think about this more it just seems so unlike me, but then I have never been in a position like this in my life. I just have never ever felt so completely not in control in my life.

At times like this I find it so easy to give the control to God. HA! That sounds funny...I'm giving Him the control? Wait a minute...He's always had it. I guess what I meant to say is it's easier to be okay with letting Him have control. There is a peace that comes with surrendering it to God. Given the present situation I really see no other alternative, at least for me. I've had to surrender Joy to Him and accept that she is His child first and foremost. I truely believe that God gives us our children as a gift. They do not belong to us, they belong to Him. It is our responsibily to raise them in a Godly manner etc.

I typically never questioned God. Maybe because up until now I never have been rocked to my core and felt the need to question? Kinda intersting how in this situation I have stopped questioning the doctors and started questioning God. Maybe because I feel I won't get any "real" answers from the doctors? Again, they just don't know everything. This seems to particulary ring true in this situation. I can't tell you how many questions I have asked that they just don't know or they are giving me answers based on the one experience they've had with limb body wall complex. It's not their fault. In their defense it's an extremely rare condition, which by the way there also seems to be no answer as to why this happened. I really can't find anything conclusive online either. I have been assured that it was nothing I did or didn't do. Again, no answers!

I know that God has all the answers though, and again that gives me peace. Even if I'm not made privy to those answers right now I guess I'm okay with that. Did I really just say that? Am I okay with being ignorant? I believe I am, because quite frankly I don't have a choice. I've accepted that. I suppose it can be equated to having faith like a child. I recall being younger having complete trust in my parents and believed some pretty crazy things they told me. My mom liked to tell me that the ear wax in my ears was carrots...and I believed that nonsense. Ironically enough I tell my son the same thing now. I'm not saying that God makes up these crazy stories, but it seemed as a child it was okay not to have all the answers and I don't think it even mattered. I just know that I trusted my parents knew what they were doing and that they had my best interest at heart...even if that was the case or not I believed it to be the case. Maybe that was a bad example, but with God it's so much more on a grander scale. It seems hard as an adult to have that kind of faith or trust, but given my current situation God is teaching me how. Sometimes whether I like it or not. ;)

A Dream

This is a record...two posts in one day? You'd think I had nothing else to do eh? Well...you'd be wrong. At leat this is my last day with Lewis gone. He will be back tomorrow and my 9 day streak of going solo will come to an end. Thank God!

Anyway...I had such an awesome dream last night. I'm so glad because I seemed to have a hard time getting comfortable last night. At least I know I entered R.E.M. sleep since I had a dream. LOL Okay on with it already. I dreamt that Joy was born alive!! The doctors told me that her condition was not as extensive as they had first thought. She was still missing a right leg and had some of her organs exposed, but they were going to do surgeries to repair that. In my dream I kept thinking how I could not wait to tell everyone the good news. I know it was a dream, but it gave me peace. It is the second dream of it's kind where everything turned out to be alright.

Oh I pray for more of those dreams. Just thought I'd share. ;)

Joy's Story

It's probably way over due for me to explain what exactly is going on with my sweet baby Joy.

Let me start from the beginning. I found out right before Easter of this year that we were expecting baby #3. Lewis and I barely had agreed on trying for a third and I don't know that I fully agreed with the idea because when I found out I was a little scared at the thought of a third child. Ironically enough the day before I had registered for school. I am wanting to take some prerequiste classes to get into the R.N. program at the local community college. I had decided I needed a career change and nurses seem to be always in demand so I figured it to be a wise choice. I digress....anyway, things went along like my other two pregnancies. Morning sickness reared her ugly head on que at about 6 weeks. I went in for a normal prenatal visit on April 28 and my OB could not find the heartbeart, which is not unusual at just about 10 weeks. I also questioned the due date they set for me, I knew I was not as far along as they put me. The OB thought it might be a good idea to get an u/s just to check on the heartbeat and also date the pregnancy accurately. See, I had been through this before....I lost a baby between Elijah and Phoebe, and at a 10 week u/s there was no heartbeat to be found. For some reason this time around I wasn't really thinking the worst and wasn't really nervous about the u/s.

I decided to bring Elijah with me that day to the u/s and it just so happened to be his 4th birthday. That's not why I brought him, but Lewis and I has a scheduling conflict and Lewis was unable to attend. So we go in for the u/s. To me things looked pretty noraml. I zeroed in on what I knew to be the heartbeat. I know I say I wasn't nervous, but seeing the heartbeat was still a relief. I figured as long as that heart was beating away everything was going to be okay.

I guess I was pretty naive looking back. The u/s tech pointed out two abnormailites that she had concerns about and was going to have the OB talk with me. She pointed out some excess fluid on the back of the baby's head, neck, and back, which she referred to as a cycstic hygroma. She also pointed out how the baby's abdominal organs were developing on the outside of her body called an omphalocele. At this point I did not freak out or anything. Maybe I was in shcok or didn't really take it all in. Thankfully Elijah seemed oblivious and more concerned with his toy car at the time. We went into another room where my OB came in with such a pitiful look and told me she was sorry. She explained that a baby with the 2 of these conditions would most likely have a chromosomal disorder and that they were wanting me to so see a specialist at a hospital in Detroit where she suggested I have CVS testing done and get further ultra sounds. Again, I think I was in shock...I was very calm. All I knew was I wanted to get the heck out of there.

I had to go home and tell Lewis the news. I do remember crying etc. I think I was really trying to reserve my judgement until after we went in a couple days to see the specialist. Jump to that appointment. We first go to meet with a genetics counselor who goes over different scenarios with us. We get more ultrasounds...they are seeing the same thing. One doctor makes mention that he can't locate the right leg, but it may be hiding amongst the organs. Another doctor mentions something called a limb body wall complex as it looked like some of the organs may be attached to the placenta, but he wasn't sure if that was just an illusion he was seeing with the u/s. I get the CVS testing done. It stands for chorionic villus sampling and what it does is diagnose chromosomal disorders with a 98% accuracy. Basically what is involved is they biopsy a small part of the placenta. CVS testing is usually done sooner in a pregnancy than an amnio.

Okay, so after that appointment I realy felt like I had more questions than answers and did not feel any farther ahead. They wanted to see us back in two weeks for more u/s to get a better look at the baby and he/she would be bigger and they might be able to determine what exactly was going on. Plus, the CVS testing should be back by that time.

Two weeks later we go back. We had yet to hear back regarding the CVS testing. We literally got a call from the genetics counselor a couple miles from the hospital and she gave us the good news on the phone. Our baby's chromosomes all came back normal!!! I also asked her if she was able to tell me the sex of the baby......she said it was a GIRL!!! I could not even get off the phone with her and Lewis was literally bawling from the good news. We were thanking Jesus the rest of the way there. I did know that was only part of the battle and tried not to get too carried a way with the good news as great as the news was. Our happiness soon turned to sadness when after repeated u/s's the specialist confirmed that a previous doctor's specualtion about whether the baby had a limb body wall complex was in fact true. Our baby was also missing a right leg. I had already known from doing research prior to this visit that it was "uniformly fatal," at least that is what the websites would say. So our baby has no chromosomal disorders, but she is not going to survive anyway. We went on our way.....I'm sure we were both in shock. I don't even think we spoke most of the ride home.

I guess I need to explain what a limb body wall complex is. Like an omphalocele, the abdominal organs are developing outside of the body, but they are attached to the placenta. Needless to say this somewhat resticts the baby as she does not have a long umbilical cord in which to move about the amniotic sac. Apparenlty there is no way to detach the organs from the placenta successfully. Joy also did not develop a right abdominal wall, so my understanding is there would be no place to put the organs even if they could.

As you can imagine the reality of the news did eventually settle in and it was not pretty. Let's just say there were lots of tears and a little bit of arguing. There was nothing anyone could do for our baby. Termination of course was mentioned as an option and most couples in our situation apparenlty terminate. That was never an option for me. How could we terminate our baby? She had a strong heartbeat. We could see her moving around in there. I have to admit my mind did go there and I thought it would be so much easier. I just knew I would NEVER have peace with a decision like that. Plus, I knew it was wrong...my whole life I believed it to be wrong. I never did pray for this, but part of me was secretly hoping that God would just allow me to miscarry. Well if you've read any other posts you'll know that is certainly not how I feel now.

Faith

Ironically enough...or not ironically at all (depending on your point of view) the sermons at church have been focusing on faith the last several weeks. God has pretty amazing timing doesn't He? He knows just what we need to hear and when we need it.

I've always liked to think that I've had pretty good faith. It's funny how much you start to question somethings when you are placed in a situation that stretches your faith farther than you ever thought you would have to. It kinda goes without saying that I am praying for a miracle, but do I have faith to belive that it will happen...that my baby will be whole? I believe He can do the impossible and this would be one of those impossible situations. Why does it seem so much harder to believe for the miracle when you are the one faced with the mountain that needs moving?

For many weeks now I've been foolishly asking the questions...Do my prayers make any difference? I mean....God already knows what is going to happen and how the situation will play out.....so what are my meager prayers going to do? Are they going to make Him change His mind, will they urge Him to act, will they help facilitate the miracle I'm praying for? To say this and question does not mean that I have given up hope or praying for that matter. But perhaps in doing so I have lacked the faith that God will come through?

I was reading my Bible the other day and came across one of those helpful littel indexes where they delve a little deeper. The title was "Can our prayers cause God to change his mind?
Bingo...this is the very thing I've been questioning. Again, God has great timing! It read as follows: "God's will is dynamic. As with any interpersonal relationship, God's relationship with humanity involves give and take. God accomodates his responses to ours; we adjust our responses to God's. So it can be said on this level, God sometimes changes his mind in response to our prayers. We might compare the relationship between God, his will and his people to a chess match between a novice player and a master. The novice can make any move he chooses and the master will respond accordingly. But the master will always be in control of the game. There was also examples given in the Bible where God did change his mind.

All this has lead me to a place where as the pastor would say "taking our faith to the next level." He mentions different types of faith and one of them was courageous faith. The kind of faith that people will look at you and think you are crazy. To believe the impossible and speak it! I've been starting to thank God for Joy's healing...not just praying for it, but speaking it. Am I crazy? Maybe so, but I think it's worth the risk. Even if things do not turn out the way I am believing will I be let down? Perhaps on some level, but in reality no. I'll grieve...obvioulsy...God is who He is and I've never doubted His control. Ultimately He knows the plans He has for Joy. Romans 8:18 I consider that our present sufferings are not worth comparing with the glory that will be revealed in us. One way or another my Joy will be complete.

On that last note ...when reading scripture I was looking up every verse that had the word Joy in it. I came across a verse that spoke to my heart and grabbed me. John 15:11 I have told you this so that my joy may be in you and that your joy may be complete. Intially, I looked at that verse only one way. In my grief I completely took it out of context wanting my Joy, my baby to be complete. That could have been part of what I was supposed to get out of that word, but now to me it has dual meaning. The bigger picture is about my joy being complete. Have I lost you yet?

I know I sought to figure out what it meant to choose joy, but I guess one needs to question what exactly is joy? Again, those helpful Bible indexes are great tools. Mine says "Joy includes a condition of genuine well-being, marked by confidence, hope and trust that extends far beyond our own infinite perceptions. Happiness is often temporary; joy is more of a process, often developed most profoundly during periods of chaos and suffering. The deep, sustaining joy of the Lord comes from an assurance that he is with us and will deliver us--from present difficulties as well as from this scarred and stained world. Such joy is able to express its hope, even in the middle of legitimate sadness.

Still choosing joy over here despite my grief...maybe now in light of the last paragraph that doesn't sound as double-minded as I first thought?

Long Days...or Daze?

I feel like I'm in a little bit of a daze. Lewis has been gone 3 days so far and still 6 more to go. Ugh! Weeks like this just drag by so slow. They seem like endless days of breakfast, lunch and dinner making....diaper changing, bath giving, disciplining, working, phone calls, running up and down the stairs, story reading and pure exhaustion. Okay so that is how my days usually are, but without Lewis here it all just feel so much more intensified, not to mention lonely.

I look and feel like an absolute bum and I'm lucky to muster up enough motivation to bathe. I think I need a good nap. Oh wait...I can't do that because by the time I finish work it's time for the kids to be getting up from their own naps. I need a vacation! Better yet, I need a weekly vacation. One can always dream. Maybe it's the 6 days a week I work...granted they are not 8 hour days, but just the fact that I have to work 6 days is emotionally draining even if my job isn't very demanding.

Now what am I going to make for dinner?

Hobby Lobby

By the title you've probably guess already that I went to the Hobby Lobby today. I went looking for somethings for Joy. I spent and hour and a half wandering the aisles in search for memorabilia type things. I ended up purchasing a plaster kit to be able to get a little hand and foot print mold when she is born. I also got a pink gingham keepsake box...very girly looking. The box I had at home wasn't cutting it and wanted something that was purchased exclusively for her, not just something I had laying around the house. Plus, it was 50% off...score! Lastly I saw insprational wood words that were painted.....words like Love, Laugh, Peace, Faith, Gourmet & Paris. Okay, maybe the last two words listed were not so inspirational. LOL I found Joy. I found one that was painted in black and another that was painted in silver. Silver it was! I purchased it and now it is proudly displayed on our mantel.

After I picked up Elijah from preschool he spotted it pretty quickly and asked about it. I said "Do you know what this says?" He confidently spelled the letters........J.............O..............Y. He's so smart! I told him that it spelled Joy and that I was going to put it up on the mantel to remind us to pray for baby Joy and not to touch it.

Okay, it's not really a reminder to pray for her I guess, because it's certainly not like we need reminding, but maybe it will serve as a reminder for us to trust God and choose joy in this situation as hard as it is. Plus, I find it really comforting to me to have her name displayed in our home. What a great name!!!

Choose Joy?

What does that mean? I took the easy way out and googled it...well I came across a blog that seemed to sum it up better than I ever could. Read it and I think it will open your eyes like it did mine. Basically, joy is a choice and requires faith. What a challenge for all of us no matter what you are going through.

http://www.boundless.org/2005/articles/a0001069.cfm

I guess for me....to choose joy wasn't just about a name choice for our daughter, which neither me nor my husband can take the credit for. It was really my Mom. I can't recount her exact story, but basically she had fallen asleep with a christian radio station on and caught part of a Charles Stanley sermon. Intermixed with praying and sleeping those were the words that kept going through her mind as a word from God.....choose joy! Perhaps a name? Maybe, but the bigger meaning was to choose joy in this situation despite there being nothing joyful about being told that the unborn baby you are carrying has no chance at life outside of you womb.

I wish I could say it was as easy as that to choose joy. Joy's name is a reminder to me to just trust in God and choose joy no matter the circumstance. It is a daily struggle...I must admit. It's so easy to succomb to self-pity and get in the "why me God, why my baby?" mode, which I do quite often. I find it is just a vicious circle of which there is no escapse. It is at times like this where I have to stop myself and say...."Hold on a minute, let's refocus this."

God chose Lewis and I to be Joy's parents. For whatever reason. As difficult as eveything about this is I could not imagine my life without Joy in it. I have to type through my tears right now for as painful as it is to think of our life and family without her in it the way we would want. I couldn't imagine not being her Mommy. To realize what I am saying in this is truly God, because to me that is to say that I would choose to go through all of this pain again if the other option was not to know her at all. That just boggles my mind because it almost doesn't sound normal.

Earlier in this journey I just thought that it would be so much easier to deal with everything if I just miscarried and lost the baby. Now, I consider each day Joy is still with us and alive as a gift from God. I guess you could say this is how I am deciding to choose joy in this situation.

Preparing for the worst

Today was Lewis' 35th birthday. He decided that today he was going to begin calling some of the funeral homes etc. in the area that I had written down about 6 weeks ago to start preparing for Joy's arrival.

No parent should ever have to plan for the arrival of a new born baby by planning their funeral and burial. What else is there to say about that? Although I did not go with him to the funeral home it has all brought a lot of emotion to the surface. Like it had far to go? It's always there. I've been crying a lot today. As much as I hate planning for this I get to feel panicked if I feel this are being left to the last moment. Yes, I am normally a pro at procrastination, but not when it comes to this. I want Joy to be taken care of in everyway I possibly can.

I don't know this road so well ....so I try to manuver all the sharp turns and stops. All the while God is the one carrying me through. I don't really know where I am going, how far the journey is, or what is going to take place when I get there. All I know is that He knows and I trust that He has a plan greater than mine. In that I have peace. That doesn't mean I don't hurt, cry, scream, question....I do, I'm human. A dream of mine is shattered. My little girl is not supposed to live. How can I live with that?

I'm 24 weeks now and we had another OB visit. They don't anticipate me carrying her much longer, maybe 4-6 weeks?? Her heart is still beating strong! 145 beats per minute! Such a sweet sound it is. We get another ultra sound next visit at our request. Not because it is medically necessary, but because we want to see our little girl again while she is still alive inside of me. We are hopefully going to get in on a recordable disc that we can keep.

How do I make the most of the next few weeks? I don't want this time to slip past me. I guess this is one way to do it. I chersish every movement of hers...although it is few, which is pretty normal for a baby with her condition. I mean she is ALIVE inside of me! Sometimes I get so grief stricken that I can hardly breathe...maybe it's something like a panic attack. I had one last week just thinking of telling our 4 year old son, Elijah, about his baby sister, which we have yet to do. I kept thinking it would be like taking part of his innocence away. This is something we are going to be faced with doing within the next few days. I don't want to put it off any longer.

He asked me the other day when Joy was going to come out of my belly because he wanted to play with her. It just broke my heart. He already loves her so much. Phoebe, bless her little heart, is just too young at 18 months to really understand. She does know where baby Joy is when asked. She'll lift my shirt and pat my tummy and occasionally will try and kiss her, which seems more like she is blowing on her. It's so darn cute! I love these moments....they are bitter sweet.