sucking ruins cards...

Isaiah just said "I wanna make a cawd (card) for Wachel (Rachel)"  So I gave him a piece of paper, he drew on it, and I wrote "To Rachel.  Love, Isaiah".  He took it to show Daddy and he said "but what if she wuins (ruins) it?"  And Des said "Baby's usually do that...they suck on things"  I smiled and thought...yeah, she does suck now, so that could pose a problem :o)

8 out of 8 ain't bad

Week 32 is almost over...  Had my appointment at Maine Med today.  Feels like I go all the time.  Today was an awesome appt.  Well, all except for the fact that we didn't get good pictures of Rachel.  I have come to realize that there is definitely a technique to getting a good shot.  The sonographer we had today had an extremely hard time getting a clear picture at all.  I wasn't going to post one because I couldn't pick one I really liked, so I asked Des (she always helps me when I'm indecisive like this)  She looked and said "there aren't any good ones" and then picked the same one I had picked, so that's what we're going with. :o)  She is just like me.  That can be a scary thing! 

So...  Thank you to everyone who has been praying for my fluid, and specifically that Rachel would swallow like she should.  Today she had a full belly!!  This means she is swallowing!  I measured a week smaller than I did two weeks ago, which actually means I've made a lot more than 1 week progress... (I measured 36 at my 30 week and only 35 at my 32 week.)  That means I'm only measuring 3 weeks big instead of 6!  Oh, and that is with her gaining over a pound in the past 2 weeks.  She measured 3lbs. 9oz. today!   I can't tell you how good this was to hear.  We have gone to so many appointments that are filled with information that stinks and we have to accept.  It was good for my heart to hear something positive.  I got all emotional hearing good news...  She's swallowing.  Ahhh, music to my ears.  Something I've always taken for granted.

How many times do we usually think  "wow, today my baby's belly is full because she's swallowing" while we're pregnant?  It has never occurred to me in any of my previous pregnancies what a gift swallowing was.  I don't think I ever even considered it.  I looked at the ultrasound report today...

kidneys: normal
bladder: normal
movement: normal
stomach: normal. 
lungs: normal
heart: normal
cord: normal
placenta: normal...

"8 out of 8" they called it.

I have never appreciated these things like I should have.  I've always worried about stupid stuff.  Stuff that doesn't really make a difference... boy or girl, room decorations, how far apart the kids will be and if the due date is a "good" one, money, clothes, blah, blah, blah... 

Because then the report says...

Head: cranial vault abnormal
Brain: anencephaly

Who cares if it's a boy or girl, has a cute room, no room at all, or shares it with 5 siblings...who cares if the kids are too close or too far apart or if your due exactly when you never wanted to be... who cares how much diapers cost or what kind of clothes you buy your baby if she doesn't have "8 out of 8"??  I never even knew there was such a thing and today... it's all that matters.  Not just because she won't be here long enough to have her own room or be a little sister to Des and not another brother... because when you realize how fragile life is, you realize what's important.  Rachel has taught me to appreciate the 8 out of 8 - hoping that next time, we'll get 10 out of 10, but knowing we have NO control over that.  I am positive that I will never enter another ultrasound will a sense of entitlement, as if I will automatically get a healthy baby because I think this kind of stuff happens to other people.  And believe me, I never thought I did that.  I always thought I appreciated my healthy babies, that I understood the gift I was being given.  I see things more clearly now.  I appreciated them for sure, but not with a full understanding of how complex and detailed God created them and how powerless I am over it all.  When I had Desirae, I remember thinking how she was strong and healthy because I did everything "right" while I was pregnant with her.  No, she had 10 out of 10 because God gave her 10 out of 10.  It feels good to say we had something to do with it, but we don't.  If that was the case, I would have to feel really bad about Rachel's condition because if we take the credit for the good, we need to take it for the bad too.  Desirae doesn't have an incredibly advanced brain because of me any more than Rachel is missing hers because of me... It's all up to God.

Every time we get to peak at our precious baby, we are humbled by the wonder of God in her.  She dances around my womb with "8 out of 8", her heart is beating, she is swallowing, her belly is full...  At our first ultrasound 3 months ago, I couldn't stop focusing on what she was missing.  Now I don't see that at all.  I see all the things she does have... each one a miracle in and of itself - and we know for Rachel "8 out of 8" is perfect because God doesn't make mistakes.

I know that to be true, but I'm still trying to explain it to my heart.

Here's to Stretch Marks!

Well, I've made it through 3 huge baby bellies and 3 big babies with no stretch marks...  I don't think it's happening this time.  I'm about the size that I usually am when I give birth and with 4 weeks left to go and my fluid building up, it will look like I'm having twins if I make it to our scheduled c-section.  This morning I noticed some lines on my belly...not sure if they are stretch marks or not, but it wouldn't surprise me.  I was just looking at the map of all the places that people are reading my blog and saw my "she's leaving her mark!" title and thought yeah, in more ways than one! :o)  Maybe months from now when my stomach looks like a map, it will remind me of how many people her short life touched.  And although nobody really wants to have scars on their bodies, she is worth every one.  No scar on my body could ever compare to the one that will be left on my heart when I say goodbye - and she's worth that scar too!  I couldn't care less if I'm left with lines on my belly - not just because belly shirts and bikinis aren't my thing these days, but because anything that proves that she was here for 9 months is special to me.  So... here's to stretch marks!

Not Enough Time

Today was a very emotional day for me.  It started in the shower when I was talking to Rachel and as I heard myself say "there's so many things I want to tell you, and there's just not enough time" I started crying and couldn't stop.  I didn't bother putting on any makeup cause it would have been a waste of time.  Des & I went to vote and then to music lessons.  (and I stopped to buy some waterproof mascara cause it's obviously going to be needed)  It was a nice ride with my girl...  She's getting so big.  I love having conversations with her, she is so cool.  The rest of my day, I cried on and off... when we got home, I checked my email - one talking about headstones, another talking about funeral plans...a phone message from the cemetery and another from the organ bank.  It's all getting to close for comfort.  Is this real?  Organ donation, headstones, luncheon plans after my baby's funeral??  You've got to be kidding me.  Now, before any of my dear friends get the idea that they upset me with their emails...you didn't.  I am a planner and I want to plan this the best I can now.  You did not upset me, I need the help.  This situation, however, stinks.  The countdown has begun...4 weeks and 3 days.  I know how fast the last 4 weeks and 3 days went by.  That's scary to me.  I know the hardest part has not come yet. 

So, I fed Matt & the kids at 5:00 and Matt left for his 2nd job.  I forgot that I had to do a friend's hair color at 5:30, so I did.  In the meantime, Samuel wouldn't stay out of the toilet and Isaiah tried to make me forget that he hadn't eaten his dinner and asked me every 10 minutes for candy, while I kept telling him "after you eat your soup".  Come 7:30 I was finally getting Sam to bed.  He kept saying "book!" after each book I finished, he wanted another.  I came downstairs to my girl saying "do you notice something different about me?"  It took a minute, but then I realized she had put on my mascara.  I told her she's too young for makeup and then couldn't help but ask "how did you do that?"  She put it on right and it looked good. (just not on a 7 year old!)  She was quick to say "I know how to put on mascara, Mama.  I opened it, saw the brush and said Hey, this is mascara, and then went like this *wide open mouth & eyes* and put it on.  It's easy."  So then I had to show her how to get the mascara off.  Too bad it doesn't stay on me that well.  I also got an email from my sister that said that Desirae had been prank calling her... apparently she was calling repeatedly, pretending she was me, saying "this is Stacy and I was wondering if your daughter could come over and play with my daughter".   At 8:30, I was reading to Isaiah (he was very insulted that I said his bed wasn't comfortable) and tucking him in...at 9:00 listening to the 1st chapter of the Boxcar Children being read by my very own Desirae and at 9:30 sitting down with a hot rice sock on my back cause my it's killing me.  I told Des I had to get something to eat and she said "what? you haven't eaten yet, Rachel must be starving!"  Just call me the invisible Mama...  But I guess if I wasn't invisible, I wouldn't be doing my job.  And through all of this busyness, I couldn't help but think...

I will never get to bring Rachel with me to vote (except today!) or hear her play the piano.  I will never get to have serious conversations with her in the van about the game she played at Chuck E. Cheese.  I will never get to feed her dinner at our table or put on a movie for her while I color a friends hair. I won't be able to see her new dance routine practiced in the kitchen and hear of her hopes of doing a recital.  I won't be able to see her try makeup on for the first time or teach her how to wipe it off.  I won't ever find out she's been sneaking the phone to call someone.  I won't ever have to try to keep her away from the toilet or tell her 15 times that she can have candy when she's done her soup.  I won't ever sit on her bed and read to her as she snuggles into my arm or try to talk her into only reading 3 books cause Mama's tired.  I won't ever hear her read to me out of a chapter book.  I won't ever hear her tell me I should have already eaten dinner.

My night was crazy...I'm exhausted and in pain...but I have 3 beautiful, healthy children alive and sleeping in their beds upstairs.  Tomorrow morning, I am sure that Isaiah will wake us up way too early yelling "it's mornin' time!" at the top of his lungs from his bed and Sam will immediately start yelling for "Daddy!"  I will have to force Desirae out of bed, later than she should be,  to hear her grumble about being tired and then about not wanting to do schoolwork.  Isaiah will beg me for candy all day long and Sam will be trying to throw things in the toilet. My back will still ache, I will still be exhausted and I will still be invisible...minus the times that my family needs something...and the only thing that I would change is that my baby will still die.

I can't imagine a better or more meaningful way to spend my days than totally devoted to my children...  and I want to do that with Rachel too.  4 weeks and 3 days...it's just not enough time.

Equal in my eyes, Equal in His

We have decided to bury Rachel in a different cemetery...the one in Milton Mills is just too far from home.  Dover is about 10 mins closer, they bury in the winter (which also means that we'll have access to her grave every year at her birthday and the anniversary of her death) and a lot of my family is buried there or will be eventually.  My grandparents own a family lot there and have given us the 2 plots so that Matt & I will be able to be buried with Rachel down the road.  We have called Milton Mills to find out about getting a refund on the plots we bought there.  If so, we will be able to use that money towards the headstone, which will be a huge help. 

I have never thought about a cemetery being "pretty" but you tend to look at most things with a different set of eyes when you are planning your baby's birth and funeral at the same time, and this is one of those things.  I have been to every cemetery in Rochester, Dover and Somersworth and this is by far the prettiest.  I guess I've always taken that for granted when I've gone to visit my Nana's grave.  Having Rachel has shown me that I have taken a lot of things for granted in my life, this being one of the less meaningful, but still another thing she's taught me.

We had the burial service for my Uncle Dale today.  His urn is buried on top of my Nana's casket.  Pastor Dave from our church came and did a really nice service. The sun was warm, the air was cool and the leaves that were so beautiful on the trees when I went a couple of weeks ago to pick Rachel's spot were now on the ground...a perfect distraction for the kids.

From where I was standing at the top of the hill during the service,  I could see where Rachel will be not so long from now.  I wish it didn't have to be winter...I suppose there's always a chance she could live as long as Baby Faith Hope did (she lived for 3 months!) and maybe it could at least not be freezing, only God knows.  But winter or not, it's going to be a hard day.  As I listened to the amazing truths about death and eternal life in Christ that Pastor Dave was sharing, my heart was so grateful at the mercy of our God. 

Dale was very rough around the edges...he had a quick tongue and struggled his whole life with alcoholism.  (I guess I come by both honestly :o) )  He told me a year or so ago that when he was young, he had accepted Jesus and that he just drifted away.  This was the first time I had heard this and it came as a HUGE shock.  My Uncle Dale...couldn't be - you see, I guess I thought I knew what a believer looked like - and he was not it.  Now, I'm not claiming that he was saved then.  I understand that when people are really saved, there is a change in them and there is the fruit of the Spirit.  What I do know is that God was very patient with him and in the last year that he was alive, the Lord kept putting people in his life that would share God's love with him.  He talked with a girl on the phone regularly that he liked talking to because she prayed with him...he called an old co-worker who came once a week to do a bible study...and here and there, he would meet with Pastor Dave.  As death got closer, he called Pastor Dave more often and a couple weeks before he died, he told him that he believed in Jesus and believed that He died for his sins.  I will also say that during this time Pastor Dave was a huge blessing to me, walking me through many long phone calls and lots of tears while I struggled not knowing how to show Dale how much I love him and how much God loves him.

I had woken up one morning 2 days before he died and God had put him on my heart in a very heavy way.  I immediately knew I had to talk to him.  He was still struggling with the fact that he didn't think he was good enough to go to heaven.  I knew I had to tell him that none of us are.  It's by faith in Christ alone that we get that gift.  I got a babysitter that afternoon and headed over (I was so nervous to have this conversation) on the way I called, only to find out that they were throwing a big party for his son's birthday. 

With a room full of people and him going in and out of consciousness, I didn't know how I'd be able to talk to him, but God gave us 5 minutes uninterrupted when I was able to share that with him. We cried together as he told me that he knows he's going to heaven, he just has a "little bit of rockin' and rollin' left to do here". I asked him if he'd tell my baby hi when she gets there and he said he would. This was a bitter-sweet conversation that will be forever etched in my heart.  That was the last day that he was able to hold a conversation.  He spoke a little the day after, but not much and the next day, he was gone.  Gone to heaven.

Why am I telling you all of this...because I stood there today, knowing Dale's whole story...knowing that God welcomed him into Heaven after living a life that was not God-honoring, simply because he came to believe that Jesus was his savior.  God didn't say well you know, you should have decided that sooner.  He welcomed him home.  It wasn't about him being "good enough" for heaven.  You don't get to heaven by being good.  He got there by grace alone, through faith alone.

I also stood there knowing that Rachel is going to be born and then die without a chance to decide she believes in Christ...so how does that work??  How does she get to go straight to God without deciding to follow him?  Some people say she'll go if she's baptized.  That would be a simple way to feel sure, but the bible says that we are not saved by works but by grace alone...baptism is a work of man that cannot save him from hell.  Besides, what if she was born still and we didn't get to baptize her before she passed?  Hell??  I don't think so, but I do not want to decide based mere sentimentality that Rachel will go to heaven...to "a better place" (as we hear so many unbelievers say when they lose a loved one)  I want to know for sure - and I want to know why I believe it. 

There are a lot of things that I still don't understand about the bible and I will never fully comprehend God, because I am human.  My mind isn't capable.  But what I do know to be true about God is that He is a God of mercy and grace.  I know that there is nothing in scripture that says that there will be judgement against those who never have a knowledge of right and wrong, or who never have the opportunity to choose whether they will love God.  I know how Jesus responded and felt towards infants and children.  There might not be a specific verse that says "your baby, although a sinner, will go to heaven" (which is what I would like to be honest)  But I know that the verses that talk about people being damned to hell all say that the people made a deliberate, willful rebellion against God.  I know that Rachel isn't capable of that.  She is being saved by His grace alone.  I am certain that His grace is enough. 

As I stood there, with Uncle Dale's ashes in front of me and Rachel's grave in the near distance, I pondered the truth of God's grace.  I thought about what a great example He is as a Father... A Father Who knows how to love each one of His children individually and perfectly.  I thought about how Rachel and Dale were at such different places as far as earth and life here goes, but yet, in God's eyes, they are the same and He loves them equally.

I have been coming to a great peace with the idea that my role as Rachel's mother is meant to be different than my role with my other children.  With them, I have to do all the daily tasks of raising children who will be ready and able to walk through a world of sin, without becoming friends with it.  I need to guide them to the One to Whom they ultimately belong and pray that they will choose to have faith in Him.  With Rachel, I just need be with her and to let God show His amazing grace through her as He carries her home.  On this earth and as far as life here goes, they will be in much different places, but in my eyes they are equal. 

Once again, God reminds me of His sufficiency.  He truly has been though anything we will go through, He understands perfectly, and He gently guides and teaches me as I walk the path He has set before me.

Trick, Treat or Chuck E. Cheese...

We don't celebrate Halloween, and usually we stay home and hand out candy and gospel tracts, but this year, on top of our conviction that Halloween doesn't honor God, my heart was hurting in another way.

People in our neighborhood get very excited about Halloween.  They take days preparing their house for trick-or-treat night and do some serious decorating.  I will admit that the fact that he was staying up on his stilts (part of his costume) was pretty cool, but I could totally have done without the scary cemetery in the yard.  I have been having such a hard time with the idea of burying my baby and the view out my window was skeletons coming out of the ground and caskets with crosses that look fit to hold a real body.  My children, who are about to have to bury their sister, were given a vision of death and darkness that I pray will not be what they associate Rachel's death with.  After Des went to visit their yard as they were preparing for the night, she came back and said "that reminds me of Rachel".  

We put everything we are into teaching our children about the Light...about Jesus.  We tell them that death is not a bad thing when you believe in the Lord. I've been preparing my kids for months for the day we will have to say goodbye to their sister and put her in the ground, telling them they have nothing to fear.  And in one night of "celebration", any picture of hope I have set in their minds was taken over by the darkness that so many celebrate without considering it's implications.

I understand that not everything that night would have been scary.  I know we would have seen some cute lady bugs and probably a few fairies, but none of us are in a position to have our minds and our imaginations jeopardized by the in-betweens.  We decided this year that we needed to just separate ourselves from it.  Maybe next year we'll go back to handing out tracts, but I have to say that even that idea sounded like a compromise to me last night.  I guess I'm in a place where I am relying on God so deeply that anything that is unpleasing to Him breaks my heart.  To be honest, I hope I never leave this place...regardless of how unpopular it is.

So, if anyone is still reading at this point... we decided to get out of the house and go to Chuck E. Cheese instead.  I think this might be our new tradition!  The place was practically empty and there was no death and darkness to avoid... Sam is getting to an age where he really liked it - He did scare me a little with his version of skeet ball (he was throwing the balls - and he has a good arm!)  Isaiah was all over the place - going from one game to another...he had run out of tokens and the next time I saw him he had a cup full.  I ask him where he got them & he said "the girl gave them to me".  It pays to be cute. :o)  Desirae was really stepping up as big sister and kept calling the boys one at a time to go see different things.  She was also really excited to see a friend from church there and go play with her for a while.  So, this was Rachel's first time to see the big mouse, we figured we should have it recorded...

  

We get one of these drawings at each
kids' 1st visit to Chuck E Cheese.



Des kept saying all she cared about was "getting all that candy"... today at the benefit (I'll share all those details tomorrow) Isaiah asked a lady if he could have this huge jar of candy. (that's my boy!) She said no because they were having people guess the amount and whoever was closest would win it.  She told him "if I win it, I'll give it to you"  and guess who won the candy?!  That's right...a TON of candy is all ours! :o)  And Who do you think was in control of that??  God gives us the desires of our hearts when we are willing to obey for the desire of His.

I love ice cream

Did you know that a 16oz jar of Hot Fudge and a can of whipped cream are the perfect amount of each for a 1/2 gallon of ice cream?  Don't worry, I didn't eat it all at once... although I could, for the right prize. :o)  Dare me? 
I just decided to have some ice cream while I wait for my benedryl to kick in so I can sleep...my back is KILLING me!  I actually had horrible pain in my rib earlier too...thought I was going to be on my way to the hospital and then it stopped.  Strange.  I've heard of people having rib pain with polyhydramnios (AKA, tons of fluid) but that was something else.  I really hope that doesn't become a daily thing.
Anyway, back to the ice cream... I got out all the ingredients for my favorite night time snack and realized there was only a little of each left..."oh well, I just use the container so I don't dirty a dish"... I poured  the rest of the hot fudge into the container and the last of the whipped cream and there you have it...a perfect hot fudge sunday...(minus the nuts, unfortunately, but Sam's allergic so we have a nut free zone here...what I give up for my children :o))  The best part??  No dishes and nothing to put away!  Love it.   It's not helping with my pain, but it's giving me something else to think about in the meantime.  I love ice cream.  And I think ice cream loves me.  And I am positive that Rachel loves ice cream too...she's jumping for joy right now - hopefully she'll stop when the benedyl starts working!  It's a tricky thing eating a sunday with benedyl while carrying a baby who loves ice cream and isn't phased by benedryl... Don't try this at home! :o) I'll let you know how it goes.... good night

SAT. MORNING UPDATE:  Last night went great...fell right to sleep, Rachel calmed down and snuggled in for the night and I slept well.  Woke up in pain, but hey, I can handle that.  I LOVE ICE CREAM!!  :o)

The top of the rollercoaster

Yesterday morning my phone rang at 6:30am... although my first thought was something was wrong, my back hurt too bad to move.  At 9:00 when my phone rang again, I remembered the phone call I ignored from earlier and got nervous someone died. (I know this sounds extreme, but just look at the last few months of my life...)  It was my sister calling...

"Do you know you're on the front page of the paper?"  she asked.  Apparently she was working the overnight shift at the assisted living facility that she works at and was handing one of her clients her morning paper and there was our family on the front of it.  She had just been telling the woman about us when she made the discovery and she said "that's my sister!"  At which point she starting calling people at 6am, thinking that just cause she had been up all night meant we wanted to be too.  But, hey, she was excited.

My first response was "And it's not for selling drugs!"  in case this has you tilting your head in confusion...  10 years ago I was seriously addicted to drugs & alcohol and got arrested for selling drugs.  My mother showed up at my house at 7am (apparently where my sister gets her patience from) with the paper and on the front page it read: "Gonic woman faces 87 years in prison and a million dollars in fines" Yeah, my family was proud.  I was a disgrace to myself, my family and to God, although I didn't know Him at that point in my life.  So, obviously this response was slightly sarcastic, but in a hard-to-explain kind of way, I was serious.  My next statement was "please tell me that whatever he used for quotes glorifies God" - Her reply? "Stacy, I don't think anyone could quote anything on your blog that doesn't make it very obvious that you're a Christian"...

This is my entire purpose in life.  I NEVER want to have anyone spend time with me, in person or on my blog, and not be completely certain that I am in love with Jesus.  I NEVER want to be able to blend in with this world.   I'm not ashamed to tell people where I've come from because I believe that it makes the love of God all that more apparent.  I am not afraid to show my weaknesses because I believe that shows the strength of God.  My only fear is that I will do or say something that brings shame to the name of the Lord or that would turn people away from wanting to know   Him themselves, since I know how much better my life is with Him in it, I obviously want that gift, and the gift of eternity,  for everyone I know too.

I had no idea this was coming...My cousin Aaron, Uncle Dale's son, contacted the paper to get the info for the benefit put in and the reporter was interested in the story.  My mom had emailed me a letter from a reporter a couple weeks back who wanted to talk with me and I never responded.  I got another email last week saying that he wanted a hi-res photo and that he could connect with me through email or just get info off my blog if that was easier.  This was the day that we canceled our trip to Florida, and honestly, I just didn't want to deal with it.  So, I sent a quick email saying I didn't know how to get a hi-res photo, I could talk to him on Monday and that he was welcome to use info from my blog if he wanted.  I never heard anything back, so I just figured it wasn't going to happen.  Monday came and went...no email and I didn't really care.

I was on my way out the door to bring Isaiah to pre-school when Meg called me, so after I dropped him off, I stopped at the store to get a paper.  I walked in and my huge belly brought on the usual "Ah, when are you due?"  I said on Christmas day as I put the paper on the counter and she asked "Is that you?"  Yep.  that's my family... She said "I'll have to read it" and grabbed a copy to read as I left.  I sat in the van outside totally blown away.  I was crying as I was reading the article to Desirae and I watched person after person leave the store with a paper in their hands, very clearly with our picture on it!  It was like a slow motion scene in a movie... like every single person that came out had bought a paper.  A paper that I had no idea was going to happen...an article that I had no part of...an article that got the name of Jesus on the front page multiple times - on multiple papers!!   I came home I cried on and off all day in awe of what God had done.  I looked on the blog and by 9:30am, there had been over 380 people who viewed it. By the end of the day, there was over a thousand views.  People everywhere were listening to "Sing to the King"!   I have gotten emails and comments and facebook friend requests from lots of people I don't know, all touched by Rachel's story, and I pray they were also in awe of how the Lord is carrying us through this.

Minutes after we found out about Rachel, Matt & I made a very clear decision that we were going to honor God and let His name be glorified through our daughter, no matter how painful it may be.  My prayer is that I have done that and will continue to do that.  My hope is that the people who read this blog will walk away with a better understanding of how awesome our God is.  I did not start the blog to bring attention to us...it was to bring attention to our Lord.  I am not excited about the fact that WE are in the paper...I'm a thrilled with the fact that Jesus is! 

It is not very often that Jesus will be mentioned in the newspaper - never mind the front page, unless of course someone who claims to follow God does something horrible and then they are all over it.  But the fact that our baby girl and our journey through anencephaly gives glory to God's name on the front page of multiple papers, is yet another accomplishment that she has made in her short little life. 

I so wish I would have time with her to tell her all the amazing things that God has done through her.  I wish she could understand how special she is.  I wish she knew how meaningful her life has been.  I pray that when she gets to heaven and meets Jesus face to face, and He says "well done, my good and faithful servant" that she will fully know what He means.  I hope she knows how proud we are to be her parents and how we are not disappointed with who she is.  These amazing gifts would not have come if she was a healthy baby who was going to live.  I want her to know that she is perfect in our eyes, and in the eyes of God, just the way she is.  I want her to know that she changed the world.

I would never say that I wouldn't change this if I could, cause that would be a lie.  I would have never chosen this path, but I am so thankful to be part of it.  I am so humbled again and again that God is allowing me the opportunity of being this precious baby's mother.  I don't want to do this...not one bit.  It's so painful and it's scary.  I am a human with a mother's heart and that makes this the worst thing I could ever have to endure...but she is worth ever bit of it.

This was definitely a high point on the rollercoaster we're on.  I am so thankful for these times.  Times when we can clearly see our purpose in this pain.
Here's the link to the article: http://www.fosters.com/apps/pbcs.dll/article?AID=/20101028/GJNEWS_01/710289669

Blessing in Heartache...And the big day is picked!

My appointment went well today.  It was the quickest one yet...only gone from 9am to 2pm!  My sister went with me this time cause Matt had to work.  The sonographer did an awesome job and gave us some time to just watch Rachel move around...and boy, does she dance!  I'm so happy that I have it on video too so I can watch it later.  We also got some good pictures.  I'm falling more and more in love with her every day.  She is so cute.  I have to admit that, although it's a lot of work getting to Maine Med once a week, I am so glad to have all these high-tech ultrasounds.  It looks like she has Daddy's nose, like her sister and brothers do, and Mama's mouth.  I can't wait to see if she has any hair and if so, what color it will be. (if you're wondering, some times they have hair in the back)  So far, all of our kids looked identical at birth, so I imagine she will have a lot of the same features.  Here's our girl at week 32!



My big belly!

This is my favorite

 

You can see all her fingers



The sonographer thought that my placenta and cord were showing on the side... I think her ears are folded over, which is a common feature in anencephalic babies.

They didn't measure her this time, so I am not sure what she gained for weight this week. They were mostly concerned with my fluid measurement. The medication they put me on last week seems to be helping with my fluid levels. They had a hard time getting an accurate reading because she moves so much, but it seems to have dropped a bit and I am definitely not in AS much pain, although I still have a very difficult time at night or if I sit for too long. My fluid levels coming down are a HUGE answered prayer. I was very nervous about taking the medication and really only can take it for another week since they don't recommend it after week 32. Please continue to pray that my fluid will decrease and that Rachel will not have any side effects from it. Dr's say that lots of meds are ok to take during pregnancy, that I just don't believe. I cried for an hour before I got myself to take it. I researched it and it seemed that there were definite risks,which the doctor had explained, but there were big risks for her in allowing my fluid to build up too...another double-edged sword. Have I mentioned how bad this stinks?

So, the big news is that I set a date for her birthday... December 3rd it is! That will put me at 37 weeks and a day. She will be considered full term and is able to donate her heart valves any time after 36 weeks, so now we're praying that she will meet the weight requirements. We would be so blessed to see up to 4 other babies live because of Rachel.

Let's see, how am I feeling about all this... well, I'm going with the flow. The flow of God's plan and not my own... trusting Him in spite of my fears. Letting go of my hopes for this pregnancy and my baby and holding on to my hope in Him.

Losing another baby was one of my fears...and it's coming true. A lot of fluid was one of my fears...and it has come true. An early delivery was one of my fears...and it's coming true. I have many fears about what all this will bring...most of which will come true. Yet, I am filled with peace. Filled with the hope of Jesus.

Do I still have specific things that I would like to see happen? Of course. I pray for them daily. I want my fluid levels to even out and stop building up and I want my back pain to stop.  I want Rachel to come on the scheduled date and not have my water break early. I want to hold her alive. I want her to live long enough that I don't have to let her leave the hospital with a stranger. I want her to spend time in our home with us. I want to nurse her and I want to hear her cry and change a poopy diaper. I want to take 1500 photos of her for her scrapbook. I want for her to prove the Doctors wrong.  I want to watch her grow and kiss her boo-boo's and tell her "no".  I want to see her walk down the isle and marry a strong Christian man like her Daddy someday.

But if I get none of those things...I'm ok with it. Will I be devastated? Absolutely. Will it change how I view life in this world? Probably. This whole journey already has. Will it change how I view God? Not a chance. It is only by His grace that I have been blessed to spend even one minute carrying Rachel - and it is a blessing!...and only by His mercy and love that I will get through the pain of losing her - and it will be painful.   None of it would have come to be without Him. I couldn't get through any of it without Him and I am thankful for it all. He allowed it, I trust His reasons - and I trust that He will carry me through it.

Being Rachel's Mama, has forever changed who I am. I would never give that up...not even for a promise of a pain-free life on earth where everything goes as I have planned. I've found so much blessing right in the middle of my heartache.

In 5 weeks and 1 day, (unless God has other plans!) we will meet our 4th child.  Oh, how I wish she could stay with us.

Benefit Concert this Weekend

My family and friends are doing a benefit concert to raise money to pay for my Uncle Dale's funeral expenses and to help pay for the upcoming burial expenses for our baby.  It's on the 31st, my Uncle Dale's birthday, at the Elks in Dover NH (I believe it will be outside) from noon-6pm.  Kids are welcome and there will be music, food & raffles.  Please come out and join us! 

If you can't make it, but would like to donate, put your email address or phone number in a comment and I'll contact you and tell you how you can do that.  I can delete comments before they are seen so I will delete contact info and not post it on the blog.  If you want to leave a comment as well, do it separately and I will post those.  Thank you for your support!

Sing to the King

Another night of extreme back pain... wish I had a recliner.  If it wasn't for the benedryl, I probably wouldn't sleep at all.  I got up in the middle of the night to pee and could hardly walk.  It must have been an interesting scene.  I was thinking that if someone recorded me, it could work well for abstinence training in teenagers.  The title of the film could be "this is your body while pregnant"  I think I might get me some depends and just stay in bed.  Kidding...sort of.

I sounded like I was 90 years old trying to get out of bed when Matt had to leave this morning.  I thought for sure it was going to be an awful day.  I had guitar lessons today and last week I had to stop early cause I was in too much pain to finish. I thought it would be a repeat of that and I'm getting discouraged with how little I can get through these days.

I came downstairs and was listening to the CD that we gave as favors at Rachel's party - and before I knew it, I was having the sweetest time of worship in my kitchen.  The song that really got me today was "Sing to the King" - It says "come let us sing a song, a song declaring we belong to Jesus and He is all we need...lift up a heart of praise, sing now with voices raised to Jesus, sing to the King... for His returning we watch and we pray, we will be ready the dawn of that day, we'll join in singing with all the redeemed, cause Satan is vanquished and Jesus is King!"

In my kitchen, in my PJ's, horrible back pain, carrying a baby that can't live outside my womb and I was singing to my King.  Praising Him for what He's done for me - Believing that He is all I need - and praying in a more sincere way then I've ever prayed before that He will come back soon, knowing that when He does, Satan will no longer have a hold on this world and all those who believe in Jesus will spend the rest of eternity without tears, pain or sorrow.  I've had times where I've (I know, this doesn't sound very faithful) actually wondered if I really want Jesus to return.  I love my life and in my humanness it's hard to imagine that I would rather be anywhere else than here or with anyone else than my amazing husband & kids.  But this morning, it dawned on me that as of right now, we would all be going to a better place...a place where Rachel will also be.  Here on earth, a piece of me will always be missing... Here on earth, I will have to lose them one by one or they will have to lose me.  If Jesus came back today, we'd get to forfeit all that pain and loss and be together with our Father...pain free, completely whole.  A few years from now, when my kids are faced with their decision to follow God or not, that might not be the case.  Our children are not born into our belief, no matter how much we want them to be.  They might not all choose to believe in Christ's sacrifice and they might not go to heaven.  The thought of that breaks my heart.  So, this morning, I was given a new found desire to see Christ return.  A new found hope in what that means for our family.  Another gift from God given to me through my precious baby girl. 

I am also really thankful that I can approach God in such an ugly state and sing totally off key, looking like I should be one of those fillers on American Idol (you know. the ones who are obviously there for entertainment purposes and not because they think they can sing)  and He is ever so happy to hear my voice being lifted to Him. He meets me there every time.  He welcomes me and washes over me with His love and mercy until He's all I can see. 

my last appointment

Some things I forgot to include in post about last Dr's apt...

• Rachel is approx. 2lbs 9oz now...that's 7oz in 2 weeks! 
• My iron level is where it should be - I knew I felt better...thank you Floradix!
• I have to go every week now so they can monitor my fluid levels.  It should be between 18-22 and it is 46, whatever that means...I know it's not good and it's painful.

Please pray that my fluid levels would not continue to go up at this pace and for my pain and discomfort.  Also, that the details of the weekly visits, which end up being all day events, will fall into place.  My next apt is Wednesday...  

Plan B

Well, we decided to come up with a "Plan B" after having to cancel our trip to Florida. It was very obvious that Florida would have been too much for me this week.  I look and feel like I could go into labor at any moment and I have 10 weeks left to go! I am at the point in my pregnancy where most women start counting down because you start to get unbearably uncomfortable.  Usually the last 2 weeks I'm pregnant are torture on my back (I always carry like a big basketball and get huge) and I have had all my kids 1-2 weeks early and they've all been big babies...the difference is I'm not 2 weeks away, even though it feels it,  and the countdown that we're doing is for the most painful thing I'll ever have to endure - and it's not childbirth... 

 Today when Desirae said she wanted to go to Disney World and I told her we still would, just in a few months when I am not pregnant anymore, it was a reminder of the fact that Rachel will be gone soon.   I will catch myself thinking "I can't wait until this is over" and then realize that "over" means something different this time.  Everywhere we went, someone asked me if I was due any day...and although this is a question I got frequently in my other pregnancies... it says something different this time.  I know the reason I am measuring at 36 weeks, when I'm only 30 is not just because I get a nice round belly when I'm pregnant - although I do and I love that part! - it's because something is wrong with my baby and she is going to die.  It's hard to smile through those conversations, although God somehow gives me the joy and strength to do it every time.  I am so grateful that even when my heart is breaking, I can smile sincerely at the thought of my little girl and the blessing that she is - even if in the next breath I want to cry, and sometimes do. 

 

I think I understand why so many people don't choose to walk this path...it's hard.  It's more than hard.  I never imagined I would be planning a funeral for a baby I can feel kicking inside me while I'm standing on the grave she'll eventually be in.  I never imagined that I would be picking songs for a funeral that will soon have my baby's casket sitting at the front of a room full of people, all while still suffering from heartburn and backaches.  I never thought I'd be picking out a going home outfit that would also be a burial outfit. 

But you know what else I can't imagine?  I can't imagine that there would be any blessing or healing in doing it any other way.  I can't imagine I would feel any better or hurt any less if I decided back in August to end her life before God had done everything He wanted to do with her.  I can't imagine how much that would hurt.  I understand that in the moment of fear and uncertainty, it can seem like the easier route, but I honestly don't believe it is.  This is not any fun at all, but I am making the most of it knowing that this is not the hardest part.  I've had people ask why "they are making me carry her", "when will they just induce me", and "can't they just take her out?"  and my answer is always the same... nobody is making me carry her, I want to because she is my daughter and I would do anything for her.  It's bad enough that she has anencephaly, but my daughter is not going to die from anything but anencephaly if I have anything to say about it.  If God decides she should come before she is full term, then that's His choice... but as far as I'm concerned, this is out of my hands.  And I am glad it is to be honest because this journey would be a lot more painful if I tried to fight God's plan in it. 

So anyway, we decided to get out of here for the weekend.  My Dad got us 2 nights at a Hilton in Portland so that we could get away and still be close to the hospital.  It was a relaxing weekend...with my 5 favorite people, Rachel included. The kids got to swim in the pool, we went to the train museum and for a train ride. Then Des, Rachel & I went for pedicures! They had a special kids chair in a Disney Princess room...not quite Disney World, but a nice alternative.  Desirae's eyes lit up when she saw it and she got to hang with the princesses, while Rachel & I got to relax.  I haven't been able to reach my toes for weeks, so they needed it and it sure beat walking around Magic Kingdom! :o)  Not to mention the joy I got watching Des giggle her way through her foot rub! 

If there is one thing I've been learning through this entire journey, it's how to go with the flow.  I tend to be a planner by nature and not one plan I've made has since I found out I was pregnant has come to be.  I used to fight that, but am finding great peace in letting go.  I'm also becoming painfully aware of how little control we actually have over things...and how what I consider to be my "plan B" was really God's "plan A" all along.

Double-Edged Swords

Did I say I wanted choices??  I must have been out of my mind.  I'm not a decisive person to begin with and now it seems like there's choices all over the place that I have to make that are all double-edged swords.  I can't win either way. 

Had my appointment yesterday at Maine Med to check my fluid and meet with the neonatologist. My appointment was at 10:00 and we didn't leave there until 3:30, minus a lunch run to subway.  It was an informative, yet very long day - and not all the information was information that I wanted to hear. 

First, we had an ultrasound...always my favorite part - Rachel is growing good and is ever so cute.  The bad news is that my fluid is building up at a very rapid pace.  It's over twice the amount it should be, but since my belly hasn't expanded that fast, it's being carried towards my back.  This would be the reason I didn't get any sleep the night before.  It's very painful.  By the time we got done with the ultrasound, I was in so much pain from laying down I was crying.  The nurse checked me to make sure I wasn't in labor, which I wasn't...thank God.  Having this much fluid makes me high risk for early labor, so we had to cancel our Florida trip, which was a huge bummer.  We were supposed to leave on Saturday :o(  I'm trusting that God's timing will be perfect and that the trip will be better for us in a few months from now. 

Our appt. with the neonatologist went well.  She cried with us a few times, especially after reading my birthplan.  She said that they do it like Burger King - we have it our way... Music to my ears! She did say a couple of things on our plan she wouldn't recommend, like giving her oxygen and a feeding tube.  We're going to pray about it and make sure we're comfortable with that.  They'll do it if we want them to, but it doesn't make a difference in the end result.  We will still try to nurse her and if that doesn't work, try giving her my milk with a dropper though.  These are those choices I'm talking about.  I hate every single one of them. 

 These are a few of the pictures that they gave us... Her toes are my favorite part.  I've always been a baby foot lover. :o)  I know as you look at these pictures, you're going to wonder how I feel looking at them, since she is obviously not "perfect"...  I'm going to be very honest.  It's extremely hard to look at my baby and see an imperfect body.  It's hard to have all my hopes and plans for her very obviously shattered.  I actually debated  putting them

on here in fear of what others might think of her.  But I am not ashamed of my daughter.  I am actually quite the opposite.  The fact that she is imperfect in body (aren't we all?)  only makes it that much more clear how beautiful her soul is.  I have a verse on my mirror in the bathroom that has been hanging there for years that says "Beauty should be that of the inner self, the unfading beauty of a gentle and quiet spirit, which is of great worth in God's sight" (1Peter 3:4)  To God, she is perfect.  To God, she is beautiful.  She has a gentle and quiet spirit.  She is of great worth

 in God's sight.  And she is of great worth in mine.  I've always wanted to love like God and this is the closest I've ever come and probably will ever come in my entire life.  I love her just as much as I love my other children.  I love her and would do anything for her.  She blesses my heart every day for just being her.  The painful part of this is that it is going to hurt just as much losing her as it would losing any of my children.  But I will never regret loving her without reservation.  I will never regret showing her off, just the same as I would with a child who was "perfect" in our eyes.  So, here she is... my beautiful, perfect baby girl.  We are so looking forward to holding her in our arms and telling her how much we love her, how much God loves her and how

we'll miss her.  We pray we'll get lots of time with her so that we can tell her all the things we want to tell her.  No matter how much time we get, it will never be enough to show her how much we love her, but we sure will try.  Because of the amount of pain I'm in and the fact that my body might not hold out till the end of December, we've decided to meet her around 37 weeks, which is considered full term.  We are praying about what day will be best and will let you know when we decide.  It's a very hard decision.  Looking at the calendar yesterday, I kept coming up with a day that sounded like a good birthday, but then realizing it will probably be the same day we say goodbye.  Not an easy choice.  Another double edged sword.  This is the hardest thing I have ever done in my life.  But I'd do it all over again.

From the Inside Out

No shower again today...my hair is probably much happier (hairdresser tip: don't shampoo every day!), although you'd never know it by how it looks right now.  School went really well with Desirae this morning and I had the house picked up and was feeling pretty on top of things - and next thing I know, the day is almost over, everything's a mess again, I'm still in my PJ's and I never got any of the things done that I needed to...well, that's not true, I managed to remember 2 phone calls I needed to make and get paperwork filled out for the Duke University Study.  Matt is out getting some groceries right now because I've literally only gone shopping 2 times since we found out about Rachel...that's in 10 weeks if you're trying to do the math.  If it wasn't for my family and our church family bringing us meals and picking stuff up for us, we'd be one hungry family!  We have been so blessed by the dinners you all have provided...I wouldn't be able to pull it together at that time of day to get dinner on the table, so you're probably really helping my marriage too! :o)  Matt is very grateful...and not only because he still gets his hot meal at the end of every day, but because he knows how greatly you're blessing me as well.

I'm not telling you all this stuff so you can worry about me or decide that I need help or something.  I'm actually writing all this more for the other Mamas who are walking this journey and need to hear that it's not easy for me either.  I find it very difficult to relate to people who don't struggle because... well, they are lying - and I don't like liars.  Life is hard.  People struggle.  It's the way it is, but most people don't like to admit it at risk of sounding like they don't have it all together.  So, I'll let you in on it...I don't have it all together.  I didn't before Rachel and I certainly don't now.  If you're glad that I just said that, I hope it is because you can relate and not because you're happy to hear it...but here's some more dirt for you...

I ignore most phone calls that come in and a lot of knocks at the door.  This is not because I want people to be more persistent and try harder to pull me out of my "depression" - it's because that's just how I feel right now.  I want to be alone and I have little energy so I can't be using it on the wrong things, including what other people think is good for me.  Today I actually pulled my shades and told the kids to stay away from the door when I saw the group of people dressed up get out of their car and start knocking on doors...I just don't have it in me.

I've been staying up WAY too late every night and usually eat ice cream too. (I've actually heard someone be criticized for that before!)  I'm sleeping ok, but always in a lot of pain (for some reason my back is killing me at night) and because of the nightly bathroom runs, and the fact that there is no bathroom upstairs, by the time I get back to bed my mind is going again and I don't get much sleep...  Let's see, last night it went something like this:

I came downstairs and noticed that the heat had clicked on, I thought "it must be getting cold out", then I thought "it would be good to have a separate thermostat on the 2nd floor so that all this heat doesn't get wasted down here", then I had a debate in my mind over that thought, because we all know that heat rises...so I wasn't quite sure if that made sense.  "Would it make more sense to keep the heat on only downstairs?" I wondered.  "or just put it on really low upstairs and not use it at all downstairs"... (good thing I can multi-task or I probably would have peed on myself with how distracted I was by this dilemma - as if I even have 2 thermostats!)  Then I thought "it's nice having a basement so we don't have to worry about pipes freezing like when we had the trailer"  Then I wondered why basements stay warm if they're not heated...and then I thought "hey, maybe it's not going to get as cold in the casket in the ground as I thought"

Now, before anyone gets the urge to write me and let me know that's not possible, I need to say that I already know it's not.  I also know that only women's minds think in such a complex, all over the map kind of way, so most men won't understand how the heck I got to that point all from the heat being on.  But the truth is that most women won't get it either cause I know it sounds crazy.  But no matter what I am doing or what I am thinking about, it ALWAYS comes back to Rachel.  There's no distraction big enough, no pill strong enough, no reasoning good enough to make this easy for me. God put this uncontrollable need to nurture babies in me because He made women that way.  How in the world do I reconcile that with putting her in the ground?  How am I not supposed to think about what it's like down there?  Again, before you fill me in on the facts...I know it's "pointless" to think about and not helpful...I know she's not going in the ground.  I know it's just her body...I know her soul is going to live on... Does that really make a mother feel better about putting her baby in a box in the ground?  I mean, think about it.  Oh, I know it should...and I wouldn't want to put her there without the knowledge of the truth of heaven, but does it really make it any easier...  My educated guess is no.  No, I don't think it does.  I'll let you know come January, but I doubt I'll be eating my words on this one.

So, now you know the truth - I hardly shower, cook or clean anymore...I eat past 8:00 every night because I want to, not because I'm hungry and I don't care if I gain weight...I don't get enough sleep and it's all my fault...I feel like being alone most of the time and although usually a talker, finding that I have less and less to say to most people...I think random and sometimes morbid thoughts and could easily cry at any moment.  Oh, and I even yell at my kids sometimes.

The gift that all this has brought about is that my perspective on a lot of things has changed.  I never thought there would be a time that I would not fret over keeping my house in tip top shape or what people would think about the dust bunnies on my stairs.  I never thought I would not worry about the number on the scale AT ALL at my prenatal visits...I have much more important things to think about at my visits. (technically we all do, but we all tend to forget how fragile life is and worry about vanity instead)  I have realized who my real friends are and have gained some new friendships that are straight from God.  I spend much more time with God in prayer and in His Word than I could when I was cooking, cleaning, showering, going places and talking on the phone more.  And for every time I fail my kids and have to ask forgiveness and they grant it, we're all learning more and more what it means to be a sinner in need of a savior - and how amazing His grace is. 

Some people would look at me and think I'm falling apart...  and honestly, I have my days, but it's worth the trade off for me.  God is taking from me the ability to keep up with the worries of this life and things that are temporal and in it's place, He's giving me something that can never be taken away.

So, if you're walking this journey carrying a baby with anencephaly, just know that it's ok if you don't have it all together.  It's ok to fall apart.  God will pick up the pieces and make you even more beautiful than you already are!  From the inside out.  

If you're watching someone you know or love walk this journey, try to walk beside them at their pace and not tell them what their pace "should" be, keeping in mind that God knows what each one of us needs.  Here is a link that is very helpful when it comes to supporting someone during this time. http://www.anencephalie-info.org/e/whattodo.php


But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. - 2 Corinthians 12:9

Dearest Rachel,

My sweet baby girl,

We had a party today to celebrate your life and the gift that you are to us.  You had over 85 people who came to shower you with love!  You got some really cute clothes, a couple blankies, a jewelry box (and some jewelry!), a beautiful Christmas ornament, a poem written by Nana along with lots of cards with words of hope and encouragement...and $1,410.00 towards your playground!  

One of your gifts is a little plaque that has a picture of a footprint and says "Sometimes the smallest gifts leave the biggest impressions."  You, my precious one, have touched so many hearts.  I am so proud to be your Mama.  The card that came with it said that she would never be able to see a footprint in the sand and not think of you...

I won't either... and my next thought will be about the picture that we are given in the footprints poem where the person asks the Lord, "Where were you when I needed you most?" and He replies.."When there is one set of footprints, it was then that I carried you"  There may only be one set of footprints, my girl, but there are three of us...me, you and Jesus - the prints in the sand are His, the ones on my heart are yours... Mine are nowhere to be found because this is all about you and Jesus - and I am so honored to be chosen to carry you to Him, as much as I don't want to let you go.  I will never ever be the same and I wouldn't have it any other way.  I love you with all that I am and I will never ever regret your story.  It's amazing and you are beautiful. 

All my love,
Mama

He is carrying me while I'm carrying you.. 

Some people come into our lives and quickly go

Some people move our souls to dance...

Some people make the sky more beautiful to gaze upon

They stay in our lives awhile, leave footprints on our hearts, and we are never, ever the same 

Light your candles!

Today is pregnancy and infant loss awareness day.  Although I am sad that a day need exist, I am glad it does.  I had become more aware of how common miscarriages were after we lost our 3rd baby at 8 weeks, however, I was still very unaware of how often moms and dads had to bury their new bundles of joy until  I now find myself preparing to do the same.  I spent some time looking at the numbers and found that:

• 500,000 babies are lost to miscarriage each year
• Approximately 25,000 babies are stillborn each year in the U.S., according to the March of Dimes and 19,000 babies die within the 1st month of life.
• SIDS claims the lives over over 7,000 babies each year nationally

There are so many affected by the loss of their baby.  If you are one of these people, I encourage you to share your story in a comment below - and I invite the people reading to take a moment and pray for the ones who have courageously shared their stories.

Also, as the http://www.october15th.com/ site has announced, you are invited to light a candle on October 15th at 7pm in your time zone to create a wave of light in remembrance of the child/children you have lost. or in honor of someone else who has lost a child through miscarriage, stillbirth or infant death.

Thank you for your stories, prayers and for participating in this event to bring hope to healing hearts. 

Rachel's Birth Plan

I made a page with our plan for Rachel's birth.  You can click on it to the left.  I found it extremely helpful to me as I was preparing this to be able to read other people's plans.  I have been working on this here and there since we found out she has anencephaly and it has weighed on me significantly.  The real heart breaker was when I went to save it on my computer and realized that I had already saved our plans for her funeral service...  you'll never understand what it does to a mother's heart to be planning your baby's funeral before you even get to plan her birth, until you've been there.  There are no words to explain the sadness.  My hope is that putting this on my blog will help other Mamas in this situation as they work their way through this daunting and painful step of this journey.  Of course knowing all the while, that we can plan anything we want, but we ultimately have no control.  That's difficult in most things, but when it comes to my sweet baby, difficult is not the word.  I am not positive that this will be our final draft.  We meet with the neonatologist on Wednesday and some things may change depending on how that goes, but I feel pretty confident that it is what I would like to see happen.  So...one more thing checked off my list... getting more real every day and I don't like it one bit.

Just call me Pigeon

Went to look at a cemetery in Rochester today...  would love to have one close to home.  The one that we liked I had decided against because last summer there was a homeless guy living in the back of it that we used to leave food for.  I drove through today and decided that I liked it too much to let a homeless guy scare me out of it, until I saw a guy sitting in a car at the back corner suspiciously looking down and licking his "cigarette" until he lit it and drove away...  OK, so maybe I'm paranoid because I started my drinking days in the back of cemeteries and did other not-so-legal things in them, but I know I want to be safe and comfortable when I go to visit my daughter's grave.  I found a space closer to the road that looked like it would be open for purchase and figured there wouldn't be anyone sleeping in the woods or getting high there, so I felt ok about it and decided I'd call and see if that was possible.

I drove out and was looking at the cemetery as I went passed, and I'll admit, I was driving slow...20 in a 30...and then I noticed the lady behind me was all bent out of shape, waving her arms and yelling at me cause I was slowing her down.  (only to get to the end of the road and have a red light anyway!)  But my first thought was "you'll be ok, Lady" and then my next one was that I wanted to get out at the light and apologize for delaying her busy life with my concern over where I would bury my baby's casket.  Sarcasm...never a good thing, but that's how I felt. 

But then I remembered the day I was rushing Sam to the hospital with one of his breathing attacks.  He was turning gray on me in the back seat and had stopped responding when I said his name.  I got stuck behind this woman going 20 in a 30... I beeped my horn in my terror and tried to get her to pull over so I could get by.  She waved at me with the "you'll be ok, Lady" kind of wave and kept on going 20.  Then she pulled into the parking lot...and surprise!  She worked in Frisbie's ER.  That would be why she was so slow...  there I go with that sarcasm again.  sorry.

My point in this is that I've been on both sides of the coin.  The one going 20 and the one wanting to go faster.  And what it comes down to is that you never know what someone else is dealing with.  I doubt that lady swearing at me today was bringing her baby to the hospital, but who knows what she has going on... can't be good with a response like that.  Just the same as the ER nurse had no idea my 15 month old son was in such bad shape in the backseat, she just thought I was impatient. (I was on the road to the ER, but hey, who would think you'd be in a rush there?)  ergh, sarcasm. 

Some days your the pigeon and other days your the statue...that's just the way it is.  I kind of wish that pigeons would find a better place to poop.

I got home and called another cemetery in Dover and the woman was very nice.  As we talked about the details, I had another moment where reality struck me.  She put me on hold so that she could look up where my Nana was buried so she could describe to me where the graves they are selling are, in comparison to where my Nana is.  I started to cry and I looked out the sliding glass door - the sky had turned gray and there were leaves falling down from the trees by the dozen.  I felt God speak to my heart... bend with me, Stacy, I'm with you through the seasons....

A note from Desirae

Here is a letter Desirae asked me to put on the blog... She wanted me to let her type it, but since I showed her how to write an email, she has been sending them constantly without me knowing, giving people her Christmas lists and inviting people over for her birthday (in January!) She even figured out how to find people's email addresses. She's too smart for her own good - and I don't necessarily want her writing on the blog all the time...so anyway, here it is - typed by me, with her typos :o)

From Desirae
(Daughter)

I realy love Rachel and it's hard for me to do school and stuff like that, because I don't want her to dye. It's "realy" hard. So anybody that reads this please please please pray for her, and believe God can heal her. - Desirae   PS. Have hope. Thank you.