Showered with Love...

"A friend is one who strengthens you with prayers, blesses you with love, and encourages you with hope."

Over the last four months, Michael and I have been so encouraged by our Greenville friends! We have only lived here for two years but it feels like much longer. We have no immediate family in the area, and our church family, and my friends from several moms groups have really reached out and made us feel at home.

I came across the verse below one day and it dawned on me that we really are in the perfect place for us for this time in our life. By being separated from family, we have learned to lean on our church family and local friends much more.

Proverbs 27:10 (The Message)

¹⁰ Don't leave your friends or your parents' friends
and run home to your family when things get rough;
Better a nearby friend than a distant family.

Since sharing our journey, I personally have been showered with such an outpouring of unexpected support and love. Below is a handmade flower bouquet, "prayergrams" (something our church does where someone prays over your request and sends you an uplifting note on the request), cards (many handmade by a crafting group that doesn't even know me personally!), and some flower bouquets. And there are numerous emails and facebook posts I've received also sending prayers and encouragement our way.

As if that wasn't enough, several friends have asked on several occasions about throwing me a baby shower. I have, on those occasions, declined (knowing that Rebekah's future is questionable and not wanting to accumulate a bunch of girlie things that I might never get to use.) Well, they loved me enough to keep asking, and I finally relented to a 'Shower of Love'. This was different from a traditional baby shower. Gifts were focused more on things the family could use, or things that would help us make a memory box for Rebekah (if it comes to that). We received lots of gift cards. Words of encouragement were also written down for both Rebekah and me (which I will have to share in another post when I am not so emotional), and a scrapbook is being put together of the event. The wonderful women who arranged that party though did get some pink stuff for me, and was I ever excited!

So for the last few months, we have been totally showered with love!

Here was the cake that was made for the shower of love. The cross, baby & bear are all made out of fondant, but were removed from the cake to save as a keepsake.













This is the cards, notes, and a memory box for them. These notes were so encouraging!












REBEKAH...
-has touched the heart and souls of many.
-is strong, persistent, and loved!
-is precious, delicious, sweet... a bright star.
-has a family hand-picked by the creator for her.
-is an amazing blessing.
-has God's hand upon her.
-is prayed for.
-dwells peacefully in the shadow of the almighty.
-is a beautiful and amazing blessing.
-is loved.
This is a hand-drawn picture from a dear artist friend depicting the character traits and likes of each of our children - Elijah, Jeremiah, Isaiah, Josiah, and Rebekah.










The artist also had this to say about our baby girl:
Ray of sunshine
Energetic kicker
Beautiful
Encouraging
Kind-hearted
Awesome angel of God
Hope

Here's are some of things I was showered with...
New PJs, robe and slippers

A beautiful birth certificate holder, pink cross plaque, pink hair bows & pacifier clip, lovey...












Some beautiful preemie clothes, the cutest tiny shoes and princess socks, girlie receiving blankets and burp clothes (the two on the top left are funny - I Could Use a Spa Day, and Beware of Mood Swings).









Probably the most unique gift was this Celestial Registry of a star named after my Rebekah Budd! There is even a map with coordinates so if we ever have access to a telescope we can find it.










I really wanted some items for creating momentos and for Rebekah's memory box and pictures at the hospital. I now have several hand and foot plaster kits.










There were several very lovely pieces of jewelry which will look precious on her hands in a photo. And my neighbor (who makes jewelry) made a beautiful Rebekah bracelet which I have worn daily.









My mom has made cross stitch quilts for each of our 4 boys. She started on one for Rebekah earlier and, in December, when we found out she definitely had trisomy 18, she had already completed the design. It couldn't have been more fitting for our baby:



















Our biggest surprise was presented this past Wednesday at our church's choir/orchestra practice. Over 90 families gave money to an incredibly generous Rebekah Budd Fund meant to help us out with medical costs, or if it comes to it, funeral costs. We were truly left speechless, humbled, loved... did I mention speechless?

Along with the check came this beautiful framed and matted picture of Rebekah from one of her ultrasound pictures with the verses from Psalm 139:13-16. It couldn't be more fitting and perfect.










This is not a journey I have wished for, wanted, or would wish upon anyone else. It's also something that I honestly didn't mean to become such a big thing. I was led to share my experiences and, before I knew it, it was being shared with even more people. It has been somewhat disconcerting for everyone to know what is going on in our lives, but it is also a relief because I don't have hide the truth of what is going on or what I'm feeling. And having hundreds of prayer warriors... well who would NOT want that?!

I can say with complete honesty that we were brought to Greenville, SC for such a time as this. This kind of support and love is just an incredible gift to us and I am so greatful for God's glorious grace on us. And sometime, I will have to share our testimony of how God spoke to us when we were church hunting. It is amazing to see how the pieces fit in place and His hand was obviously upon us, guiding and teaching, leading us to develop the support network we would need in the future. But that is a story for another day...

Thank you, my friends - I love you all dearly!

3/20 and 3/27 Rebekah Update

Proverbs 19:21 (NIV)

²¹ Many are the plans in a man's heart,
but it is the LORD's purpose that prevails.

Psalm 112:7 (NIV)

⁷ He will have no fear of bad news;
his heart is steadfast, trusting in the LORD.

Just a quick post to give an update of my last two appts.

3/20/09 -
We went to our appt with high expectations of seeing repeat performance from Rebekah's 2/28 visit (she had gained almost a pound in 3 weeks and made lots of progress, from our viewpoint). Unfortunately, it was not nearly as good a report. Our first reaction was sadness, frustration, loss of hope. Looking back, it wasn't that it was a bad appt, it just wasn't as good. Instead of focusing on the blessings (like the fact that Rebekah is obviously a fighter), we were hard-hit by the roller coaster ride of carrying a trisomy 18 baby.

• Rebekah had gained about 5-6 ounces only and is now 3 lb even.
  
• My amniotic fluid level dropped from a 17 to a 9! Anything below 6 is too low and usually results in an emergency delivery. Dropping almost in half in 3 weeks made me pretty nervous. This also indicates that there is a problem - either with my placenta, or with Rebekah's kidney or brain function, or most likely with both. (Not that this was new news, it is expected with a trisomy baby.) She isn't getting the nourishment she needs to grow and, if my fluid levels drop much lower, we greatly increase the risk of her being stillborn.
• Just shy of 34 weeks, she is measuring like a 28 week old baby.
• Our doctor seemed more melancholy this appt and prepared me for a possible induction 3 weeks early (as opposed to the 1-2 weeks we were originally expecting). He even hugged me after we talked (since Michael and I were both going through the tissues pretty fast.)
  

I posted a much more detailed posting of this on my facebook account right after our doctor visit because I couldn't access blogspot to give an update. I received 56 comments on facebook of continued prayers being lifted up! Wow! What outpouring of support and love! And I know lots of people that are praying that didn't post anything. This is one blessed baby!

3/27/09 -
This appointment, thanks to all of the prayers and God's continued comfort, went much better. We didn't get to evaluate her weight again because they said one week's difference wouldn't really show on the stats, especially since the ultrasounds have a +/- 15-20% error rate. What we did get to find out...

• The cord flow was 2.1 - anything below 4 is good (it measures pressure, so higher is not good). This was awesome considering I have a 2 vessel cord (not the typical 3 vessel cord).
• My amniotic fluid level was back up to 12!!! God is soooo good!
• We got to see Rebekah practice her breathing! We could see her little chest going up and down as she mimicked breathing. Most people don't get to see this incredible show unless they are privileged to the multitude of ultrasounds that we get to have.
  
• Rebekah appeared stable, and we went back to a 2 week early induction outlook. The best part of this is that my specialist wants to deliver the baby! (He could only do this if we do schedule it, and we would be so happy to have him there over one of the regular OB's. This is a doctor who truly cares about us and our baby, and has done much to encourage and respect us in all of our decisions. We love Dr. Grieg and are thankful that God led us to this Christian specialist!)
• We finally got some good 4D ultrasound shots. I have more pictures on my facebook account.
  

Look at her hint of a smile!

God's Hand at Work

It's been a while since I gave an update on our baby Rebekah, so I wanted to make sure I shared the news from my last ultrasound. Since some of you reading my blog my not fully know/understand about trisomy 18, I am going to recap what we are going through so you can appreciate the significance of where we are today.

Trisomy 18 - 101 I am currently 32 weeks pregnant with a baby girl who has been diagnosed with Trisomy 18 through amniocentesis (a 100% accurate diagnosis). Trisomy 18 is caused by an extra 18th chromosome. (Downs Syndrome is an extra 21st chromosome.) It is much more serious than Downs, in that 90-95% of the babies die in utero (stillborn). Of those that survive, only 10% of them make it to their first birthday (so like 1% of the trisomy 18 pregnancies) and the median lifespan is 14 days.

In most places in the country, abortion (based on AFP or quad test results only, or a single marker on an early ultrasound) is highly encouraged. This was never an option for us, so we choose to carry her and love her for as long as God will allow us to. The only reason we consented to the amniocentesis in the first place was because she was showing so many birth defect 'markers' on our 20 week ultrasound, that we needed to know what we were up against in order to prepare.

Her early markers included: choloroid plexis cysts on the brain, a 2 vessel umbilical cord (they are supposed to have 2 arteries and 1 vein, mine only has one of each), a VSD - hole in the bottom chamber of the heart, 1 kidney, and a 'rocker bottom foot' (club foot). There were also other things like retarded growth, head shape, etc. The only way to know for sure what chromosome abnormality we were dealing with was through an amniocentesis which looks at cells in the amniotic fluid. These are derived from the cells that also make up the baby. Based on all of the markers and the result of the amniocentesis test, our specialist is sure we are dealing with full trisomy 18 - labeled as incompatible with life. As you can imagine, this is a devastating diagnosis for any parent. Between this then learning the statistics of what a baby labeled as 'incompatible with life' means, we have been heart-broken for our baby girl.

In addition to these markers and things you can see on an ultrasound, there are a lot of other potential issues that just can't be detected from an ultrasound - how the brain is going to function, if it will tell the organs how to do their job, organ issues that can't be detected via ultrasound, etc. Many trisomy 18 babies die in their sleep because they simply stop breathing or the heart gives out. Many of them don't have an esophagus that attaches to their stomach, and even when they do, they cannot suck or swallow properly. All trisomy 18 babies have extremely retarded mental and growth patterns and, even if carried to term, will appear in size and development as a preemie. I was warned that due to her chromosome issues, I would have all kids of problems like gestational diabetes, preeclampsia, toxemia, polyhydraminous (too much amniotic fluid due to slow growth of baby of not processing the fluids correctly - which can lead to breathing problems in the mother, prolapsed cord, preterm labor, higher risk for additional birth defects, etc).

On top of all of the medical issues, we also have to deal with the cold-heartedness of people and medical staff that do not see a reason or purpose to carrying a baby like this to term. When asked early on what medical interventions we should think about, our geneticist stated that we should "save your money and send your older kids to college." I've heard comments like "that's what happens when you have a baby at 40." Many people have commented "At least you have 4 healthy boys!" (as if that would offset the pain and suffering of going through this experience.) An OB even tried to scare us into complying with their standard practices by making us feel that we would not have a say in how the birth experience would play out. Yes, we are asking for some out-of-the-ordinary care, but nothing that will cause the doctors or hospital extraordinary costs or change in process. This is a situation that is out of the box of normalcy. Some things got to give!

OK, now for the POSITIVES... I had an ultrasound on 2/27. In 3 weeks, Rebekah had gained 15 oz (almost a whole pound!) and was about 2lb 10 oz at 30 weeks. If she continues on that growth pattern - she'll be well over 5 pounds at birth! She actually was on the chart (even though it was at the 3% range)! In addition, we could NOT see the hole in her heart. Neither could the ultrasound tech. I am telling you, it was big enough 3 weeks prior that, even to Michael and me, it was evident. The doctor will not confirm this, of course. We could no longer see the cysts on the brain - although the tech did say that it becomes harder after 28-29 weeks to see into the brain because the skull starts to solidify more. We could see obvious fluid in the stomach and bladder - which indicates that she is most likely swallowing and her one kidney is working. She is very active and, since Dec, we have seen no new concerns show up. We do not see the constant clenched fists so typical of these babies. My amniotic fluid levels are NORMAL and I have had NO pregnancy complications/issues. My specialist actually thinks she will make it to term.

I am humbled and thankful for all of the friends and even strangers that are keeping her in constant prayer. I cannot tell you how bathed in prayer this baby is - and we do really feel the hand of God at work in her. She will make an impact on this world whether she is with us for minutes, days, or years, and for the first time in this pregnancy, I have truly allowed myself the HOPE of being able to hold my baby girl alive and spend time with her.

Thank you to each and every one of you sharing this journey with us, encouraging us, grieving with us, praying with us. I feel very blessed and loved. Please continue to pray for a miracle, that we will be surrounded by godly and compassionate medical staff that have a respect for life and our choices as the parent of this baby, and for me to actually be able to breastfeed Rebekah (I don't think this has ever been done with a trisomy 18 baby!).

Susan

Numbers 6:24-26
The Lord bless you and keep you; the Lord make His face shine upon you and be gracious to you; the Lord turn His face toward you and give you peace.

Psalm 139:13-18
You made all the delicate, inner parts of my body and knit me together in my mother's womb. Thank you for making me so wonderfully complex! Your workmanship is marvelous - how well I know it. You watched me as I was being formed in utter seclusion, as I was woven together in the dark of the womb. You saw me before I was born. Every day of my life was recorded in your book. Every moment was laid out before a single day had passed. How precious are your thoughts about me, O God. They cannot be numbered! I can't even count them; they outnumber the grains of sand! And when I wake up, you are still with me!

Butt Naked...

I am such a planner....
When we went on our honeymoon or any vacation (at least prior to kids), I had the whole day planned out with extra events to fill in the holes (if there were any). We plan monthly camping trips through the warm weather months, annual trips to see family, weekly activities with the kids...

This journey that we are on with our Baby Rebekah is a really tough one. One of the hardest things at the moment is my inability to plan. I have absolutely no idea what lies in front of us so I can't even plan simple weekend plans past March... no trips to family, no weekend camping trips, no family vacations, no scheduled playdates at my house, no organized ongoing activities for the kids... Even people who don't like to plan would find this completely disconcerting! I cannot even commit to things I NEED/OUGHT to do. This makes me feel extremely naked and blind.

I see my inadequacies...
I find myself at times falling into the trap of comparing myself to others, or analyzing others' motives, or pridefully seeing something better in myself than other people. Pride is an area I have struggled with my whole life, and one that I pray about frequently. Well, God is stripping me of that sin and many many others. I am having to open up to people in a whole new way that is very uncomfortable, I am having to seek forgiveness in my thoughts and actions regarding those around me, and I am becoming blatantly aware that I cannot make it through the unknown future by myself. I am seeing my personal weaknesses in a whole new light and it is like a guady, flashy hotel sign blinking at me. It is exhausting and lonely at times.


I am angry...
I am trying so hard to trust God and to believe His promises, but I am constantly slapped in the face by a pessimistic and cold-hearted world.

Says my OB... "So Dr. Greig (my specialist) says that if the baby goes into distress during labor, you want to consider an emergency c-section. You know, that's highly unusual."

"Why is that?," I ask innocently.

"Because we don't usually do c-sections for babies that are not expected to live."

"Ummm... You do elective c-sections, don't you?," I countered.

"Well, yes."

"What's the difference?" (At this point, I am disgusted that we are even having this conversation.)

Separate conversation Michael has with a prominant neonatal doctor at Greenville Memorial Hospital...
Michael says, "We are expecting a daughter with trisomy 18 and we're trying to figure out the best place to have her. So I wanted to ask you about Greenville Hospital." (We are trying to determine whether to have Rebekah at a hospital with full NICU available, or at a smaller hospital that has a lower level of NICU available but would not do extensive resussitation measures.)

Doctor: "Have you talked to a geneticist?"

"Yes, and we're looking at this realistically."

"That's how you have to look at it." Thus ending the conversation and implying that it doesn't really matter where because doing what we can to give her a chance is not worth his time, the hospital's time, our time, or society's time. OUCH!

These are just two of many conversations we have had over the last month with a variety of people that doesn't just scream 'forget it, there is no hope!' but it leaves us with with a very bitter taste in our mouths that the world does not recognize the significance of this life God has placed inside of me.


Psalm 139:13-16
13 For you created my inmost being; you knit me together in my mother's womb.
14 I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.
15 My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth,
16 your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.

Psalms 127:3
"Behold, children are a gift of the Lord; the fruit of the womb is His reward."

I am butt naked...
I am in a place where I feel completely stripped to the bone. There is probably nothing more unnerving than imagining yourself butt naked in a house of mirrors. The thought sends chills up and down my spine. But here I am, butt naked in a maze of mirrors, with no immediate way out and forced to truly see all angles of myself and my life as I have never seen them before. It's very disconcerting, uncomfortable and how I would love to throw on all those layers of 'clothing' to 'hide' what's in front of (and behind) me.

Job 1:21
"Naked I came from my mother's womb, and naked I will depart. The LORD gave and the LORD has taken away; may the name of the LORD be praised."

A Heartfelt Apology

It is 2:30am and I have woken up from a splitting headache and a heartache. This is my blog, so I can cry if I want to, right?!

I have, on occassion during this adventure in mothering, taken antidepressants for post partum depression. I have not had to take them since before child #4 was conceived. One of my big 'signs' that I need 'help' is not utter despair, suicidal thoughts, or threat that I'm going to hurt my kids (the typical things you see in a depression medicine commercial - because, you know, depression hurts!). It's anxiety attacks and paranoia... thinking everyone is talking about me or that they have something negative to say about me... a total drop in self-esteem. This results in a very inward-looking attitude and focus on 'me' that I know is totally ungodly and totally against what God's word has to say. So I have been reading more, praying more, trying to not 'care' so much about what I 'think' others are saying/thinking. But my paranoia is getting the best of me and waking me up in the middle of the night.

So do I take the dive into medication? No one would blame me with the things going on in my life. But I have to be honest, I don't want to go there just now. Medication also means numbness, a more even-keeled posture on life. And frankly, I don't think that applying numbness to my life is in my best interest right now.

So how do I battle through this? I know recently I must've irritated a friend I deeply care about because she is (my interpretation) 'attacking me left and right' on a number of issues. Because these may be perceptions and not reality, I don't need to go there. It wouldn't be beneficial to anyone. Is this just my twisted interpretation of events? Hard to say, but honestly, that is why I am up at now 3:00am blogging. Because THIS is what my heart aches over at the moment. I would honestly apologize if I knew exactly what I had done. But I hate confrontation enough that I am too chicken to go to her and bring this issue up. Honestly, what I am afraid of is that I will get to into 'me' end of the conversation and forget the intent or purpose for bringing up the issues in the first place. It's not about me, I don't want it to be about me. But I will turn it into that... (well, you did this that and the other to ME, you made ME feel this way, blah blah blah). You know, typical self-justification behavior... I don't even want to hear myself think it.

I've never claimed I was perfect...far from it. I will humbly submit that I am a sinner and am nothing without the redeeming blood of Jesus. Thank God he sees the potential in me that I and others cannot see. Thank God he forgives me even when others can't. Thank God he models unconditional love in the hopes that we can even catch a glimpse of it and model it to others.

These are the verses I am meditating on to work through this:

• Ephesians 4:26 And "don't sin by letting anger gain control over you." Don't let the sun go down while you are still angry. (How true! How many times do we wake up in the middle of the night or suffer from insomnia because or our anger?)
• Proverbs 14:29 Those who control their anger have great understanding; those with a hasty temper will make mistakes.
• Proverbs 17:14 Beginning a quarrel is like opening a floodgate, so drop the matter before a dispute breaks out. (This is one of the reasons I am afraid to go and discuss my issues, I am so afraid that MY floodgate will open and I will say ugly things that I totally don't mean and will regret.)
• Romans 12:19 Don't quarrel with anyone. Be at peace with everyone, just as much h as possible. (Although it may not seem like it, I'd actually love to live at peace...)
• 1 Thessalonians 5:11 So encourage each other and build each other up, just as you are already doing.
• Romans 12:17 Never pay back evil for evil to anyone. Do things in such a way that everyone can see you are honorable.
• Psalm 19:14 May the words of my mouth and the thoughts of my heart be pleasing to you, O Lord, my rock and my redeemer. (Lord, I pray that this would be the case with me. Help me get rid of my foolish pride and insecurities and focus on what you would have me do.)
• Proverbs 17:27 A truly wise person uses few words; a person with understanding is even-tempered. (Okay, I admit, I have a LOOOONG way to go on this one!)
• Proverbs 12:18 Some people make cutting remarks, but the words of the wise bring healing. (Lord, give me wisdom because I am just way too good at the cutting remarks part. Blech!)
• Matthew 7:3 And why worry about a speck in the eye of a brother when you have a board in your own? (Ain't it the truth? I recite this to my children all the time. I need to remind myself of this.)
• James 1:19 My dear brothers and sisters, be quick to listen, slow to speak and slow to get angry.
• Proverbs 18:13 What a shame, what folly, to give advice before listening to the facts!

So, my friend, I am sorry for what I have done to cause you to stumble or struggle. Know that I am working daily on being a better person and friend. I hope you will continue that journey with me and forgive me...

And, surprisingly, my headache is now gone and I can almost hear Jesus saying, "You've come a long way baby..." Okay, how wrong is that? Isn't that from a cigarette commercial?!

Deliberation to the Extreme!

I deliberate too much on everything! It's become quite a problem for me. It's almost as if my analyst skills have gone amuck - I cannot make a decision on anything without weighing all the options to the 100th degree. And this is paralyzing at times! And I'm not really sure when this neurotic behavior begun!

I also think this behavior is why I've come to abhor shopping so much. I won't do it! Too many chances to make a wrong choice, pay too much, get something that won't meet my expectations and requires a return trip to the store...

An example of deliberation to the extreme: I have approximately a little less than $300 to go buy myself a new and much needed camera. I don't have time to wait for funds for the 'ultimate' and 'best' one out there, so basically I need to find the best one <$300 to meet my immediate needs since my camera has not been working well for months now. Features I'd like - decent enough video for a little camera, low next-shot delay, some zoom capability, preferably an optical viewer included for those sunny days you can't see the screen, and most important, decent picture taking! Its amazing that you can buy 10 megapixel cameras that have lousy ratings for image quality!

I've been thinking about this decision for over a month now. I've looked at epinions, consumer reports, various online sources... there are too many choices! I need to put a stake in the ground and get something soon so I can start taking some decent pictures to add to my blog. So my husband, thinking he'd be helpful, bought me a camera for Christmas. I didn't even get to review it first. It went right back to the store without opening the box. How sad is that? So its not even as easy as letting someone ELSE make the decision.

So why is this such a hard decision to make?! What would your choice/recommendation be on any of the following (and, of course, there are many choices within each style)?

• Canon PowerShot
• Casio Exilim
• Sony Cyber-shot
• Pentax Optio
• Fujifilm Finepix
• Kodak EasyShare
• Nikon Coolpix
• Panosonic Lumix
• Reader Choice - what is your choice?!

Please help me put this issue to rest and focus on the next important decision...
What am I going to serve for dinner?!

What Makes a Life Worth Living?

I met last Monday with a geneticist and hospice nurse...lots of fun, NOT! Tammy (the nurse) operates Carolina Perinatal Support Network - Compassionate Care, Practical Guidance and Emotional Support for Families Experiencing an Adverse Prenatal Diagnosis. She basically helps support families in honoring the life of their baby, regardless of the length of their baby's life. There are 65+ similar organizations across the country in various cities. Most of these support maybe 2-4 families per year. Yet Tammy, here in the upstate area, supports 25+ families per year. We aren't even a big city, so why is that? Well, the answer might shock you!

I guess I've forgotten that I live in the buckle of the 'Bible Belt'. Apparently sanctity of life is taken more seriously here and abortion rates for fetal abnormalities is not as high in other parts of the country. Tammy told us that for DOWN'S SYNDROME, 95% of babies are aborted! That is an incredibly high and extremely sad statistic! I know several Down's syndrome children, and they are a delight to others and their parents. They often teach us much about unconditional love and they don't get caught up in the supid things of the world (like money, power, beauty, etc.) And I tell you what, I would be ECSTATIC for a diagnosis of Down's right now! What is scary and sad about this statistic is that all of these lives are being terminated because doctors and/or parents don't think these are lives worth being given a chance at life.

So this whole thing got Michael and me thinking... what makes a life worth living? Is it the health of your body or mind that determines worthiness to life? What about the Unibomber? He was brilliant and talented, but what did he contribute to society? What about Hitler? What about the MILLIONS who live their lives daily making lots of money but not caring for anyone in society but themselves? Yet there are people who might only live a short-time on this earth that can have profound affect on everyone they meet. You might not find them through an internet search, but I bet you know at least one of these people, or have seen the direct affect of one of them.

So what makes a life worth living? And who should decide if the life is worthy or not of existence? Well, I can only think of one person who has this authority, and he and his Father had a lot to say on the topic of sanctity of life.

For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be (Psalm 139:13-16).

My heart grieves for all of the lives considered not worth not living...

To Hope or Not to Hope...

Background:

I am 25 weeks pregnant with little baby Rebekah Faith Budd...the girl I have prayed for for almost 9 years. Unfortunately, Rebekah has trisomy 18 (confirmed through amnicentesis - an extra 18th chromosome), also called Edward's Syndrome. About 95% die in utero, and of those that live, the median lifespan is 5-15 days. Life is a roller coaster ride right now, with many thoughts and decisions I'd rather not deal with...



Today's Random Thought:

I've been doing good today, I've conversed about Rebekah without bawling, I've managed to accomplish more than I set out to do, I've been productive and I am accomplishing a lot by setting up the Good News Club at our local elementary school. Great day!


So what does it mean when two separate doctors call you on the same day to say they are thinking about and praying for you? OK, that just makes me cry. Don't get me wrong, I am grateful for all the prayers. They strengthen me and make me feel loved and cared for by my body of fellow believers. But to have your two doctors call... well, doesn't that make you feel like there's no hope or something?

But I am hanging on to hope because that is all I have for the moment:

• But the needy will not always be forgotten, nor the hope of the afflicted ever perish.
  Psalm 9:18
• Be strong and take heart, all you who hope in the LORD.
  Psalm 1:24
• But the eyes of the LORD are on those who fear him, on those whose hope is in his unfailing love,
  Psalm 33:18
• May your unfailing love rest upon us, O LORD, even as we put our hope in you.
  Psalm 33:22
• "But now, Lord, what do I look for? My hope is in you."
  Psalm 39:7
• May those who fear you rejoice when they see me, for I have put my hope in your word.
  Psalm 119:74
• Blessed is he whose help is the God of Jacob, whose hope is in the LORD his God,
  Psalm 146:5
• There is surely a future hope for you, and your hope will not be cut off.
  Psalm 23:18
• Know also that wisdom is sweet to your soul; if you find it, there is a future hope for you, and your hope will not be cut off.
  Psalm 24:14
• "But blessed is the man who trusts in the LORD, whose confidence is in him."
  Jeremiah 17:7

So to hope or not to hope... that is the question!

If I pray for a miracle and believe in it with all my heart, and don't get it, I will be devastated.

If I believe God can perform a miracle (which I do!), but don't have the hope/faith to claim this for myself, am I giving up the opportunity for a miracle?

If I 'protect' myself by having no hope at all, well, maybe I won't be so miserable with the inevitable statistical outcome.

So I ask again - to hope or to not hope?

I know no matter what, God will be with me (us), and the prayers of friends and fellow believers will sustain me. But I just feel like I don't even know what to pray or hope for!

Random Thoughts

I swore I would never be a blogger. I don't have the time to write down my thoughts or read other people's thoughts. But life changes, and I have so much on my brain. I need a release. And thus, I am stepping into the world of blogging. It doesn't matter much if anyone reads this but me. I just feel a need to get my words out, in the hopes that I can sleep at night. And if you need to sleep, maybe they will help you. :-)



Why Unhinged and Unfeigned? Well, quite frankly, I couldn't think of anything catchy, cool, or unused. I might change it if I come up with something better. But right now, it is an 'un-' kind of life.



Unhinged:

Definition: demented
Synonyms: bananas, batty*, berserk, bonkers*, confused, crazed, crazy*, deranged, disturbed, insane, loopy, lunatic, mad, maniac, manic, mental*, out of one’s mind, out to lunch, touched*, unbalanced



Unfeigned:
Definition: Genuine, Devoid of any hypocrisy or pretense.
Synonyms: heartfelt, hearty, honest, natural, real, sincere, true, unaffected, unmannered



So I am hoping this blog will be an honest look at the crazed life of the Budd Family (or more accurately, me).