Tuesday, August 4, 2015

Drink of This Cup

I have all these different things rolling around in my head to post today - I have big things I need to figure out - and the baby remembrance ceremony and pictures I want to share... but only one thing keeps coming to mind that feels appropriate for this day... this hard, painful day in my life each year... the day I drank of the cup of preparing myself and my sweet child for death.

First, this is the hardest August 4th I have had since the first one without her.  I think 5 years tends to be a 'big' anniversary for most things... but also because I'm 19 weeks pregnant right now, just like I was at Rachel's diagnosis.  I'm experiencing all of the "happy and normal" parts of pregnancy that I ached for with Rachel this time of year.  I feel really good, similar to my pregnancy with Rachel... there is just way too much that is the same to not at times feel *right there*.  And that makes the pain - the reality of all I have been through and lost - so very real and unavoidable.

I woke up this morning with her blanket in my arms as I have for the last 4 years and 8 months.  I immediately felt the missing her - the feeling that used to consume me, but doesn't usually anymore.  I think of her every day and miss all I'm missing, but it doesn't *usually* hurt like that anymore... but today, it did.  I grabbed some coffee and sat down with the kids to watch the video I made for her funeral.  Within a few minutes, I was the only one still watching.... and that is so symbolic of this entire journey.  So much of it I had to do alone.  Just the way it is when you are Mama.

Watching it - first of all, I was blown away that there have been over 276,400 views!  - but I also was taken away in my memories.  I saw in one picture of me showing my Rachel belly, the dress I bought for her on my birthday the week before not knowing if she was a girl yet is hanging on the wall behind me.  That dress hung there for a long time.  And the nail is still there and will be left here even if we move.  That dress was symbolic of my refusal to believe she would die.

But she did.

The nail is the remembrance that I didn't lose hope or give up on her.

And I wouldn't.  Still don't.

All I wanted to do today was go to the cemetery with our race shirts on and my plan was to water as many flowers in the cemetery for others as we could in 43 minutes because it's been so hot out.  Of course, it stormed like crazy last night and nothing needed water.  So I decided we would go get hot chocolate and head over, but the morning disappeared while I attempted to blog and got nowhere and the babies peed and pooped on everything - and then it warmed up and hot chocolate didn't feel right anymore - and so I decided we would make cake while Ezra napped and plan to go after Matt got home and eat cake there together.  Isaiah did an amazing job making the cake.  I said I hoped to get over to visit Rachel and Matt asked me if *I* still planned to go... but I was so tired and going alone wasn't what I really wanted, so we stayed home and ate cake, which all of them called a 'celebration' and I felt like doing anything but celebrating this day.... her birthday, yes.  Because she lived.  But this is the hardest day of my life every year and always will be... so no, not a celebration in my book.

I thought the most appropriate way to share what August 4, 2010 brought into our lives is just simply to share the email I sent out (before Facebook times) to our friends, family and church family and then the video I made that journals my time with Rachel until we had to say goodbye for now.

Even as I read my words in this email, I am so certain that God was carrying me, I can't help but be thankful, but it still hurts so very much to realize and remember that this happened to me.  I actually went through this.  And it was the very hardest thing I have EVER done.... and remains the hardest thing I have ever done - and still do - to this day.  5 years is a long time for everyone else - maybe enough to assume that since I'm not crying every day that the trial is somehow over for me and my family - but it will never be over until the day I meet her in paradise.

Here is the email I sent out:


Where do I begin?
 
We had our 5 month ultrasound yesterday and went to Maine Medical today for a 2nd opinion that confirmed that our new baby girl has a rare condition and will not live long after birth.  I will be able to carry her to term, but unless God performs a miracle, she won't be able to live outside my womb.  Our hearts are broken, and yet we can see how God has prepared our hearts for this trial.  We believe wholeheartedly that He can heal her and are praying relentlessly for that truth to be ours.  But we know that might not be what He does.  As much as we don't want to drink of this cup, we are surrendering to whatever He wants to do through this.
Our desire during this time is that we can celebrate her life even in the midst of our sadness and cherish the time we have with her, however limited it may be, until we see her again in heaven.  Please do this with us. We do not want to act as if she is already gone, when she is not.  She is beautiful (pictures coming soon!) with a healthy beating heart and apparently loves to dance, just like her Mama.  We want to focus on these things.  Her name is Rachel Alice, which has a very special meaning to us, that I'm sure you'll hear someday hear about.
If you're wondering how you can help, these are things we need.

PRAYER
- ceaseless prayer for Rachel's miraculous healing
- that if she isn't healed, that she'll live through delivery and be able to come home from  the hospital with us
- strength for our family, and special prayer for Desirae who so desperately wanted a sister
- for God's provision in costs associated with preparing a funeral and strength to do that
- preparing my heart to be healing physically from childbirth, without a baby to hold.
- for timing with labor to make it possible for family to be with us, especially my mom & sister, and for wisdom on how to handle the baby's arrival with our kids
- that we will continue to see God moving and be able to praise Him in this storm
- protection from Satan's advances during this vulnerable time

SUPPORT
- lots of hugs - we favor these over talking details.  They are less draining and more helpful
- we may need some childcare for Dr. apts.
- no info from internet  (part of the reason we are not discussing the name of condition)
- any and all encouragement from God's Word that He gives you for us so that we can stay firmly planted in His truth.  The Word of God speaks...

Thank you so much and we love you all,
Matt, Stacy, Desirae, Isaiah, Samuel & baby Rachel


---Google can't satisfy every search...My soul finds rest in God alone; my salvation comes from him.He alone is my rock and my salvation. - Psalm 62:1-2

And here is the video.  Continued prayers are appreciated ♥  Even as I write this, Baby E2's kicks are reminding me of the unbelievably difficult balance of joy and sorrow I had to walk.  Last night this baby's kicks had me crying over how hard it was to feel Rachel's kicks as I waited for her to arrive and die.  It's just been a really hard and emotion filled time remembering Rachel and how much I miss her - and boy, do I miss her.... I thought I was over the 'hard days' but I should have known grief isn't that predictable.  But, I continue to surrender to whatever He wants to do through all of this - no matter how much I didn't - and don't - want to drink of this cup.... I surrender all.


Friday, July 31, 2015

Casting My Cares

5 years ago this week, I heard the word "Anencephaly" for the first time.  I heard the words "Incompatible with life".  I heard them say of my baby "These babies don't live."

I was told that "The testing you refused earlier in pregnancy would have shown this." and "You know there is nothing we are going to do for this baby." when I refused to abort my daughter.  As if knowing sooner would have spared me the tears I was shedding or as if fear of them refusing to help her would knock some of their text book "sense" into me and make me see how useless carrying her to term was.

Today, I went for Baby E2's 'routine' ultrasound.  Ultrasounds will never feel 'routine' to me ever again.  I went alone because Matt started a new job and can't take time off yet.  And ironically, I was totally and completely fine with being there by myself.  I've never gone to a 'routine' ultrasound alone before.  I always bring someone with me.

I have told my mom and some friends that I had a feeling they would find something at this scan.  God has given me an amazing intuition... 

The ultrasound wasn't common in the sense that because I didn't want to know the gender and they know I'm good at reading ultrasounds, she was having trouble moving around and seeing what she needed to without me seeing the parts (baby's legs were wide open, she said!)... so she was asking me to cover my eyes and so her jumping around didn't quite fill me in on her concern until closer to the end of the 45 minutes... when she said "Baby's heart looks good structurally, but... see this...?" As she moved the cursor to a white spot on my baby's heart.

I felt that same sense of heavy air I felt at Rachel's ultrasound 5 years ago.  

"Yeahhhh" I said slowly.... waiting for the life or death conclusion.

And she went on to tell me that it's one of the markers of Downs Syndrome.  I could tell by the look on her face that she didn't want to tell me and she kept saying things like "Everything else looks great." and I just looked at her and said...

"I can handle Downs Syndrome." as I wiped the warm gel off my belly and sat up.  "As long as my baby is not going to die.   I'm not afraid of Downs Syndrome."

I told her how when we got out of Rachel's ultrasound, I was staring at her picture - they would only give me one of her foot - and saying "I hope it's Downs Syndrome... just as long as they don't say she will die."  

And I wasn't making it up.  I meant it.  I'll take my children in any form they come, even in a form that means they can't stay - but I desire nothing more than to be able to keep them and raise them.  And a baby with Down's Syndrome I could keep and love and watch grow and let God use to change me to be more like Him.  

I don't want my baby to have Downs Syndrome.  It's scary and a long term, horribly difficult task and they often have heart problems and other medical issues that would be hard on my heart and wearing on my body - but ANYTHING as long as I can keep my baby.  Anything as long as I don't leave the hospital without my baby again.  

As I waited for her to finish with the computer, I stared at my pictures of my 7th baby she had printed for me and I began humming the lyrics I had posted on Facebook just before I went in for the scan... "I will cast my cares on you... you're the anchor of my hope... the only One who's in control...."

I did cry a little when she left, trying to dry my eyes before she returned to keep her from feeling sorry for me.  But I'm ok and I know God has this.  The baby doesn't have any of the other markers - a major one being a shorter middle finger - making the way she searched for pictures of baby's hands and feet for so long more understandable.  I thought she just wanted me to have good pictures of them, but she was checking for another marker of Downs.  I looked at the picture she gave me of baby's hand and it was taken at 10:27. (Hi Rachel!)  Considering my appointment was at 9:30, I never expected to run into 10:27 like I did at the last scan... but this picture is one of the main reasons they aren't overly concerned, because baby's hand looks perfect.


I have mixed feelings about that since I have the most perfect little handprint tattooed on my wrist.  I put the most perfect little girl in a box in the ground just because of one thing standing out from the rest.  I held a perfect little body - all other parts just right - except that one.

I know one spot is enough to change my life....

But I also know God is big enough for anything I face - big or small...

We talked of the possibility of doing the AFP testing that I always skip because it would give us a more definite idea - but Dr Pinette said knowing me personally, he doesn't recommend that.  I have mentioned I love that doctor, right?  I am thankful to have someone who knows me and what I believe who also respects what I believe and guides me in that direction when fear could easily sway me.  So, the game plan is to wait and see what Christmas brings.  And honestly, I don't care what I get for Christmas, as long as I leave that hospital with a baby in my arms.  That's all I want for Christmas ♥








Tuesday, July 21, 2015

"I Can't Do Nothing"

A couple of months ago, I wrote about 7-8 blog posts, all around the same subject, that I couldn't get 'right' so I never posted.

Well, it's time.

Since I'm being told that this is apparently something some believe to be a "sentiment among other people", I'm going to tell you exactly what your 'sentiment' does to my heart.

I posted my original blog 2015 Race Announcement and was pretty clear on the why's of me making a decision to do a virtual race. (go ahead, read it so we're on the same page here!!)  I was pretty clear on the fact that this was a healthy decision for me and my family and that I was at total peace with not doing a big event because it's not WISE for me to do so at this point in my life. (you know, minor things like having our 7th CHILD on the way, a BRAIN ANEURYSM, Chronic pain, high blood pressure, homeschooling... ETC!!)  But, I still need to make an income that will support what we do for ministry throughout the year if I am to keep our 501c3 going.

I THOUGHT that people would think that was good.  I THOUGHT people would support that I was making a HEALTHY and GOD LED decision to do less - a decision that MY family was wanting for a long time.

And silly me, I actually THOUGHT that the participants I know at Rachel's Races actually came there because they wanted to support Rachel's Mama at remembering Rachel and doing things in HER memory.

I knew this event was not going to bring the strangers who usually come to run just because they want a road race.  But I believed that my long term supporters would support me in the ways I was changing things in order to be a better wife and mom to my living family and because of the ways in which Rachel has impacted their lives.  And in fact, when I posted it, I had DOZENS of comments on Facebook saying just that.

And I am not sure if I'm truly angry or not - but I guess I feel like if I step out of my being mad, I might start crying and never stop because what I am finding is more of the same - EVEN these people... even the regulars at Rachel's Races that I thought really loved me and her and were there to support US - were really only there for themselves because they like an event that makes them feel important and where they can attend a ceremony for their baby.  And these are not things I'm coming up with in my head, I have now been told this by 4 different people who are all people I have always seen in my mind and heart as "Rachel's Team" - and for as many times as I have said that some people only stuck around here long enough to get what THEY wanted or needed from Rachel, these people were not people I expected to do this and honestly, I'm OVERWHELMED with discouragement because of it.

I can handle people I don't know, or people who haven't felt like my "constants", not supporting me if they don't like what I've chosen to do because they'd rather do something else.  But this is too much for this mama's heart.

I have had a very small amount of people singing up for our virtual race - 17 to be exact.  I had around 50 shirts sold through the shirt fundraiser, but some of them came from the same person, meaning some people bought 4-7 shirts, so the number of actual people was not 50. (small in comparison to the number of people who claim Rachel changed their lives)

I wasn't worried about any of this as far as money goes because I don't have as much overhead as I do with the big event we usually do and we have money in the nonprofit bank account, so I was just figuring anything was better than nothing.  And virtual races are really successful online so I tried even sharing it on virtual runners facebook pages.

Normally, by this point I have over 100 people signed up. And last year by this point, I had 25 virtual runners registered.  But I also usually by now have $4000 in overhead.  So I know that, even with spending entirely way too much on the baby ceremony this year (which all of these people ARE signed up for by the way) I will still come out ahead.  If I get a few more of the corporate sponsorships I requested, I can make enough to run our basics throughout the year and be okay nonprofit wise.  So it's not really a matter of what I make on this.  It's not really a matter of being in trouble if I don't have the same number of people....

But did anyone stop to consider that maybe, just maybe, the race I do in August isn't about what they like?  Did anyone really think that by throwing on a t-shirt and walking a loop through Dover that you are a huge part in the race?  Because not to sound mean, but you aren't.  The race takes a full time amount of work for MONTHS leading up to it.

I've been told that my reason for doing this as a virtual event comes across as "I don't have it in me to do a race, but can't stand the thought of doing nothing."

Well SO FREAKING WHAT if that was the reason I do this?!  Because I can't stand the thought of doing nothing??  Who would fault me for that?  Only someone who is judgmental because they never put their full term child in a box in the ground.  But besides that, that's NOT why I chose to do this because quite honestly, I DON'T WANT TO.  And with the exception of being judged and abandoned by people I considered close friends, I and my family are *relieved* that I am no longer in a place in my grief where I "can't stand to do nothing" and even more relieved that I'm not putting on a big event this year because I do all the pre-race day work ALONE and it takes way too much away from my living family and a serious toll on my health.

But HOW DARE YOU talk about my efforts to do things for other people in Rachel's memory as if they are some pathetic attempt at doing something because I'm too unhealthy do 'do nothing'.  How dare you.  Just for the record, I'M STILL DOING all of the same pre-race fundraising I always do and alone, as usual! - but you aren't aware of that because you apparently think race day actually brings in any money!  Last year, it cost $5,000 to put on race day.  That day, we brought in $3,800 - do the math - Race day isn't where the fundraising comes from and it certainly isn't where profit comes from - which means it isn't where ministry comes from and MINISTRY is my mission with Rachel's life and death.  We've all gotten so used to using the words "Baby Rachel's Legacy" as an organization that we forget that Rachel was a living person who I am leaving a legacy for and if one more person throws that name around like it is a place that sells burgers, I'm going to snap.  It's my dead child's memory people.  It's not a business and when you say you won't support it, you are saying you don't support HER and me in the ministry I do for her legacy.

This year, there is nothing I want more than to do nothing.  But guess what?  I don't get that luxury as the only one who keeps this all going.  If I want to continue to do things for others, I have to do footwork and I picked a way to do it that would still bring in money, but not short my family.  And I'm not allowed that privilege without being put down?  Without my motives being considered wrong?  Or without you deciding you'd rather do something else because you like an actual event to go to?  Because you want a 'community feel" - well here is a newsflash for you - a community feel comes from PEOPLE coming together and working for the same cause.  And that is still possible with the way I've set this up if you put what you like aside and remember what Rachel's Legacy is about - which is Rachel Alice Aube - not what you prefer an event to feel like... And if you are willing to help without being seen or feeling important.

A few months before this all came up yesterday, I was told by one of my biggest race helpers that she wasn't going to be involved this year because she wanted to do something that was on HER heart for Rachel, which meant donating somewhere else in her memory.  I asked her not to do that and she told me to never contact her again and threw in there that she would NEVER donate in Rachel's memory again and never visit her grave again (huh?  yeah cause that applies here... thanks for going out of your way to be hurtful, it worked) and now has turned it into I'm not appreciative of HER attempt to do something for Rachel.  I can't freaking win.  Somehow the other person always becomes the victim.  Rachel is my dead baby.  Have we forgotten that?  Is YOUR heart more important than mine where Rachel is concerned?  YOUR desires more important than mine in her memory??  Well, silly me, I didn't realize that all of these years, these people I thought were on "Team Rachel" were only there because they were getting their needs met and now that they aren't, they are not willing to be there for me....

I have hundreds of people who have told me how much Rachel impacted them - in their own losses, in their relationship with God - in how they view their own living children.  Just for the record, that wasn't Rachel.  You have been affected by me, my honesty, my vulnerability and MY willingness to put YOU first in so many ways. And this has not been easy for me.  It has caused me even more pain and more frustration and more tears in so many ways. And the first time you prefer I do something different, you ditch me?   Shame on you.

I'm coming up on the hardest anniversary of my life.  The day I found out my baby had no head and would die, but not after feeling her kick and delivering her and leaving the hospital after giving birth without a baby because she was already at a funeral home towns away and planning a funeral while I slept with her empty blanket.  I STILL sleep with her empty blanket.  This is STILL my reality.

And the weekend of her anniversary, I will be hosting a baby ceremony that I just spent half of our proceeds so far from this virtual event on (that others are supporting so YOU can have YOUR babies remembered) - for other mom's hearts - not mine.  Not for Rachel.  For others.  And people have no problem participating in that.  I'm struggling to not be offended that I can do as much for YOUR babies as possible while you show up for MINE when you LIKE it.  Guess what?  I haven't always liked making Rachel's anniversaries about YOUR babies.  But it's always been my heart to comfort others with what I have experienced, even when you still have no idea what I have been through, but somehow think you do.  I'm so upset that I wanted to cancel the entire thing - but I went to do it and I looked at the list of names and I know and love each of the babies and you, their Mamas - and I couldn't do it - I couldn't cancel it.  I couldn't not do something for YOUR babies, even when I feel like I'm being totally used for your own needs and mine don't matter to you.  Because I care more about your heart than you apparently care about mine.  So you are right, my supposed friend, "I can't stand the thought of doing nothing".  But it has NOTHING to do with what *I* want or need, because this isn't for ME - it's for YOU.  And you'll show up for that.

I'm just completely baffled, utterly disappointed, deeply grieved and overwhelmingly disgusted at what has been revealed in this event.  But I trust that God wanted me to see it because He led me to do it this way and so now I need to figure out what - besides cry - I'm supposed to do with the information.

I know one thing, God continues to show me that my true friends list is smaller than I've been led to believe and I'm glad about that.  Because I'd rather be alone then surrounded by false friends like this.  I haven't asked anyone who is physically unable, financially unable, mentally unable to do ANYTHING they are UNABLE to do.  Lest my words be twisted yet again, I want nothing from anyone that they can't give with a cheerful heart because THEY WANT TO AND ARE ABLE.  This isn't a post for the purpose of making people who want to support me, but can't, feel guilty.  This isn't a post to convince people to register for the virtual race because at this point, I don't care about the race at all.

This is simply a post to share with the people who have walked out on me that what you have turned into something you do because YOU like to actually affects my heart and in a very real and serious way.  This isn't about you and if you've made it about you, I don't want you in Rachel's Legacy anyway because her life and death is not about YOU.  I'm horrified to watch people make any of this about them.

This is about my daughter.  Rachel Alice Aube.  So you can save your pity parties and guilt trips on me because this isn't about you and if you've made it about you, just do us both a favor and quietly disappear on me like most everyone else.  Don't do me any favors by sticking around with a foot in and a foot out so you can get more of YOUR needs met through my baby.  Just go.

One thing I'm thankful for is that Rachel has no idea about any of this.

Monday, July 20, 2015

Complete Joy

Well, I'm about 8 days away from my big ultrasound with Baby E2.  I'm 17 weeks with #7 and feeling pretty good most of the time.  Just tired, but my life calls for that without pregnancy!

Lately, being on the same time frame as Rachel's pregnancy has been at the forefront of my mind and heart in so many ways.  Going for the ultrasound at Maine Med, the Wednesday after my birthday, just like I did for Rachel's 2nd opinion... Being in the 'easy' part of pregnancy at the most perfect time of the year... having two boys ages 3 and 1 - literally the same exact age difference as Rachel, Isaiah and Sam were - to the month with Isaiah and Asa and only off by just 3 months with Sam and Ezra... And a big girl who is aching for a little sister... having what feels like an easy pregnancy physically, mentally and emotionally (at least so far...)... Back to a place where Matt is working two jobs, which hasn't happened since he quit his 2nd job while I was pregnant with Rachel...  even the way my body and face look are similar to my pregnancy with Rachel, which is in part I'm sure to the time of year I'm in my 2nd trimester.

The list goes on and on and on.... I feel like I'm on repeat.  There are days where I almost feel like the last 5 years didn't happen and I'm still pregnant with her. :(  There are days when I think ahead to having this baby and all I can picture is Rachel.  There are days when that really excites me - the idea that God is giving me another chance to live her experience with only joy and no sorrow... and then there are days when it scares the crap out of me because lets face it, up until August 4, 2010, it was all just as it is for me right now - Minus the fact that I now know what it's like to lose a child that I carried, felt kick, delivered and buried after waiting on that for 4 months.  And minus the fact that I have not had my ultrasound yet and don't have any idea if I get to keep this baby or not.  And minus the fact that this isn't Rachel.... and will not bring her back.  Her story was not just joy.  It involved a lot of sorrow too.

I have been thinking about the possibility of having to have a c-section with this baby... what it would feel like to be in an operating room, possibly Rachel's OR room... in December to have a c-section.  The thought overwhelms me.  What overwhelms me even more is the thought that I have a long ways to go before it's safe to deliver and so much can happen between now and then... if my blood pressure doesn't stay down, I could find myself in another situation where I have to make a life and death decision for my baby and myself again.  These are not thoughts that are far fetched, but I often don't share them with people because I am ALWAYS, without fail, countered with some silver lining about it all or some correction about how I should only 'think positive' and not go there... well, let me just say that I am human and if it were you, you'd think all these things too - but even more importantly, I'm not a Joel Osteen follower and I don't believe I can think my way into the future I want.  I believe and trust that the Lord knows every detail, they are in His control, not mine, and they might not be what I want or like or pain free... but I know they will be for my good and His glory and that He will carry me through any trial I face - and that's enough for me.  That's not being negative, it's having faith and trust in God and being willing to be honest that while my faith is strong, I'm still only human.

I heard myself tell my friend Denise the other night over ice cream that a lot has gone wrong in this pregnancy, and yet I have had peace.... and hearing the words scared me... because I didn't know it was true until I said it - and I said the EXACT words in my pregnancy journal at around this stage in Rachel's pregnancy.  Everything was going 'wrong' in her pregnancy and I was convinced something was wrong with her, but I was told repeatedly that I was "just paranoid because I had a miscarriage before."  Well, turns out God was preparing me for my little girl's death - and while I'm so glad He does that, it makes me wonder if I'm being prepared for another trial.

With all this emotion... all these unknowns... all these similarities that bring up so much in memories I love and also in memories I wish were not real, I could easily allow fear to take over.  And while I have definitely had *moments* like that, it has not been my overall feeling or even one I sit in for long when it comes.  I can't take credit for that.  It's not like I'm some kind of specialist in taking thoughts captive or that I make a choice to focus only on truth.  It's just something God is doing for me.

I have no doubt that God knew that all of these details would line up.  He knew what my mind and heart would do with it all.  But the one amazing difference - since the first day I knew I was pregnant with Rachel, I couldn't shake that something was wrong.  I said it over and over.  I dreamed it 3 times.  I thought it was going to be Downs Syndrome and was okay with that as long as she didn't die like in my dreams.  I still had peace, but it seemed my peace was in spite of the reality so obvious, but not yet confirmed.  I was not surprised by it when something was wrong at the ultrasound.  I saw it coming.

This time, I have had a peace about this baby since BEFORE I ever even got a positive test!  And it doesn't feel like it's in spite of reality, but instead because of it...  Of course I could always be proven wrong with time, but I have just felt like everything is okay.  This doesn't mean that I don't still have all the fears and emotions that a woman who has buried a child has though or that it isn't really hard when I do.  They just don't take over in me.

This morning in church we sang the song "Sing to the King".

This is the song that I had playing on my blog's background music (back when they let us do that!) for a while early on.  It was playing the day that we saw an article about Rachel in the newspaper for the first time.  I remember going to pick up the paper and just being overwhelmed with emotion. I had no idea the article was coming.  It was a total surprise.  I was still pregnant with Rachel, it was October 2010.  I watched people come one after another out of the store carrying the paper with our photo on it and I couldn't get myself to stop crying long enough to get out of the car.  When I finally went in, I put it on the counter to pay and the girl recognized us.  It was the first time I experienced a "You're her Mama?" look.  And I was immediately hooked... I was Rachel's Mama and it was a reason to be proud... but I wasn't proud because of me or her - I was proud because her & I got the name of Jesus on the front page of the Foster's Daily Democrat!  A few times!  I came home and watched my blog count go up and up that day - 1000+ people read my blog and heard the song "Sing to the King!!"  They saw a 'sad story' with hands raised to the One True God.  And I just knew that people would be confused... how could she still praise her God at a time like this?  A God that would allow her baby to die??  And I just knew that He was going to use it for more than I ever imagined.  And He has.

Today as I sang, with my 2nd Christmas baby swaying within me to the music - thinking of when we sang this song on December 9, 2010 at Rachel's funeral -  I lifted my hands and had the biggest, dumbest smile on my face while tears just streamed down....  So thankful for what God did with Rachel's life - and hopefully will continue to do with her life.  I'm so honored to have been part of it and to continue to be part of it.  I've learned what it means to suffer for the Lord's sake and it is amazingly beautiful and completely worth it.  I would have never imagined it could ever feel so beautiful  to suffer in the countless ways I did and still do - and with all the added ways that being in the public eye for this journey has caused.  But He has rewarded me many times over as I have journeyed down this road and it has come in the form of a closer walk with Him.

On Rachel's pregnancy announcements, I wrote a little poem I made up.  I wrote the words "Boy or girl, either way we'll be blessed, we only wish to make just one request;  That this little gift from God above, be filled with His redeeming love."

The lyrics today spoke to my heart yet again... my one request with Rachel was met - long before she ever felt the sting of this world, she was filled with His redeeming love.  She knows it fully.  Amazing.

This verse... this verse is the one that makes me smile....  In Christ, death has no victory!  One day I will join all the redeemed, including my Rachel, and I will celebrate the victory of Jesus.  I'm ready... so ready... any day now Lord, come!!  Until then, I celebrate in hopeful expectation that this world is not my home and You are coming back for us.  I celebrate and sing with all the redeemed now - here and in heaven.  I imagine the day that Satan is vanquished and EVERY knee will bow to the Lord - and between that and the fact that I KNOW that day will come, I can't help but sing with joy - even through the sorrow.

"For His returning we watch and we prayWe will be ready the dawn of that dayWe'll join in singing with all the redeemed'Cause Satan is vanquished and my Jesus is King!"

So far, this Christmas baby has only come with joy.  Like with Rachel, I will willingly take any sorrow that may follow, but for now, I'm thankful for two things... that it has only been joy - and that I've had enough sorrow to recognize that so fully and completely while knowing that this joy pales in comparison to how completely Rachel knows joy now and I the joy I will know when I get see the Lord face to face with her.

1Cor. 15:51-57
When the perishable has been clothed with the imperishable, and the mortal with immortality, then the saying that is written will come true: “Death has been swallowed up in victory.”

“Where, O death, is your victory?
 Where, O death, is your sting?”
The sting of death is sin, and the power of sin is the law. But thanks be to God! He gives us the victory through our Lord Jesus Christ.

John 15:10-11
If you keep my commandments, you will abide in my love, just as I have kept my Father's commandments and abide in his love.  These things I have spoken to you, that my joy may be in you, and that your joy may be complete.


Monday, July 13, 2015

No Regrets

While I was pregnant with Ezra, I had a really hard time with hormones.  I felt slightly crazy - OK, completely crazy - all the time.  It was a horrible place to be in and it was't easy for anyone around me.  I could feel it then, but I honestly just couldn't get out of it.  It was also the hardest part of my grief journey - year 2-3 were by far the worst for me as far as anencephaly and losing Rachel goes - and then I compounded it all with pregnancy.

I expected that this would continue to get harder with each pregnancy for me, which is one of the major reasons I wasn't ready to be pregnant again when I got pregnant this time.  I'm thankful and relieved to say that this is not happening to me this time!  I feel almost like a normal person!  (I'll never be completely 'normal'!) I'm not sure if it has to do with being on the right vitamins and diet for the first pregnancy ever - or the fact that by the time I got to Ezra, I had been on 4 mg of folic acid a day for YEARS, (per the wonderful doctor's orders based on having a baby with Anencephaly) which I now know is really bad for me with the MTHFR gene mutations... maybe part of it is because I've come to a better place in my grief and healing, but whatever it is, I feel great this time around - minus all the other real life trials I've had to walk through with sickness and death - my hormones aren't making me any more crazy than I am by birth.  Thank You Lord!

One of the things that we did back in my time in AA, was what is called the 9th step... it's where you make amends for your side in any and every relationship you have, and expect nothing in return when you do, even if that person has also wronged you. AA is smart in a few ways and this is one of them.  See, they understand that in order to heal, in order to be healthy inside, you can't hold onto crap from the past - and they understand that apologizing isn't only for the person you have harmed.  Now, don't get me wrong, this IS a Biblical principle and even a command from the Lord to have a humble heart before people you have offended or hurt.  Unfortunately though, a lot of people who grew up without ever needing AA - which *seems* like a good thing - never learn the desperate nature of being clean before people as well as God.  It seems they can run through life oblivious of the damage that does to their heart and their relationship with God. Back when I did my 9th step, it was literally a matter of life and death...and more importantly, which I didn't know back then, a matter of a right relationship with Jesus Christ.  It was shortly after I finished my 9th step that I began going to church and a few months later that I was saved.  I don't think it's a coincidence.  Making my side of things right before everyone (and this involved a formal, sit down conversation that I called to schedule and then went through a list of everything I ever did to hurt them, even if it wasn't something they really cared about and it took me MONTHS of constant work to complete)  was what got my heart ready to meet Jesus.

I stopped going to AA years ago, not long after I became a Christian, but some of the things I learned there shape who I am.  Like it being a good thing to be open and vulnerable and share my story in hopes of helping others... but also in being up front with how I feel about things so that no roots of bitterness grow in me.  And I think people either love that or hate that about me.  I think there are a lot of people who prefer to go through life without being bothered by how someone else feels about something.  I've seen this in my journey with Rachel for sure - people who wanted me to shut up and smile 6 months later - some that let me 'go on about her' for a year or even two, but now?  Over 4 years later?  Isn't it about time I focus on something else?  I've never cared too much about that because honestly, anyone who thinks that way is just clueless and lacking compassion and I feel bad for them.

But, where I find myself now.... I find myself in this place where for the last 8 months, I've been trying to do a '10th step"- not in the AA kind of way, but in the Biblical, this is what I need to be close to Jesus, kind of way.  It's where you continue to take personal inventory of your life and when God shows you that you are wrong, admit it - and I like to add actually CARE about it.  I can't stand insincere apologies (which I don't consider an apology to begin with because those two words can't go together).  I don't accept them and will never give one.

So, I've reached out to a few different people who hurt me over the last 4 years - some that I in return wasn't nice to verbally.... and some that I wasn't in the wrong, but just cared about the fact that they were hurt and that in their minds, had a reason to believe I caused the pain.  Sometimes you hurt people without meaning to, just like kids might run past and knock down another kid without meaning to... but we still expect the child to say "sorry, I didn't mean to" and help them up.  Somehow children are held to higher standards than adults hold themselves most of the time.  Adults will say of themselves, that their intentions were all that matter... but if our kids say "I didn't mean to" we without fail will say "Right, but you hurt them so you should say you're sorry."

So far, every person I have contacted to try to make things right, has either straight up ignored me or refused to continue a friendship - all the while with a smile and a "don't take it personal" and apparently forgetting that I had real and valid reasons for being upset with them to begin with!  Well, it is personal.  That's obvious.  It's about me.  I'm not sure how much personal something could get for *me*??  But what do I do with that now?  I felt like God was leading in every one of those attempts.  One was from year one without Rachel, one from Ezra's pregnancy, and one was someone who was a very close friend, or so I thought, who was very involved in Rachel's Legacy and then just pulled away.  I hadn't been able to get much of a response for a couple of years, so I unfriended her on facebook and all heck broke lose and I became the bad guy. I guess Facebook friend status matters more to people than real life friend status. And one just recently got upset with me unjustly and honestly, I didn't owe her an apology, but I gave one anyway for the fact that she feels hurt by me. And I wouldn't say it if I didn't mean it, I'm really sorry I hurt any of these people in the midst of whatever emotions I had going on.  It's not what I want to do.  Ever.

But the stonewalling had been driving me crazy.  I was feeling like I wanted a response... ANYTHING.  Tell me I suck and why.  I just can't stand the dishonesty.  Don't tell me everything is fine when I'm not stupid, I can clearly see it isn't.  And although I have definitely done my share of being self-focused - or focused on Rachel, which for some reason everyone considers focused on myself - I guess dead babies aren't acceptable children to focus on.  We do it every day for our living children and that is considered good and unselfish.  But I put the same loyalty or protection into Rachel and it's looked at as selfish and wrong.  I still find it very hard to believe that anything I have done, especially given the circumstances around all of it, which happens to be Rachel's death and legacy, calls for shunning me completely, especially if I am sincerely asking for forgiveness.  At least not from a believer.  But that is between them and God.

Because of how I'm made up, I start to feel like everyone hates me... like I'm just not a person that people like to be around... I start to feel like a kid in grade school wondering why nobody likes me.  I'm not making excuses for any of my actions when I say this, but if I've made it through the last 5 years, given the amount of attention my life has had and the amount of people who have been in and out of it, with only a handful of people who don't want to be my friend, I don't think I'm doing as bad as I feel some days.  Because I'm not sure if people think I actually LIKE this aspect of my life, but there seem to be lots of people who don't understand that I didn't WANT to do ANY of this.  I didn't want to blog and often wanted to stop because of the extra pain caused to me by people who read my words.  I didn't want to allow all these new people into my life at the absolute most difficult and vulnerable time EVER - and then watch them leave one by one as their needs were met here and they moved on.  I didn't want to make new friends or lose my old ones because I'm now a dead baby mom.  I didn't want a legacy to keep for my baby.  I didn't want a nonprofit, races, or to help buy headstones.  I didn't want to minister to thousands of others while my own heart was left breaking, all the while under criticism and abandonment.  This is NOT the life I wanted.  But it's the life I got and I'm doing my best to allow God his way in it all.  I fail.  Often.  And I hate that more than you do, I can assure you of that.

I think when all is said and done... what these last 10 months (and 5 years, really) have really shown me is that people we love die - and much too soon.  And people we love won't get enough of our time before we die.  Because we could die much too soon. Watching both my Papa and Grandpa die in these past 6 months, and having regrets over how much I wished I had done, how many times I ignored my desire to visit with a "I'll go tomorrow" or how many questions I wish I had asked them, just to know them better...

And then finding out about my aneurysm and knowing that at any moment, my life could suddenly end (which honestly scares me less than slowly dying from cancer after what I've seen) - that all my future plans might never come to be... that what my kids, husband, family and friends get from me TODAY might be the last they get and I want it to be good... to know that when you die, people will either come to your funeral - or not.  And they will either have great memories of you - or not.  And your eulogy will be read and people will either cry over the void you will leave - or not.  You know how long people miss you when you leave facebook?  Maybe never. They might not even notice, unless you unfriend them and they are offended.  But the people who you interact with in real life, they will feel your absence.  And not that I'm looking for people to be sad should my brain explode, but I'd be lying if I said I don't want to be missed when I'm gone.  And not because I want it for me... but because if you are missed, it means you were loved and also that you loved well.

This all has me in a place where I just want to love and be loved.  It's all I ever wanted before, but before I needed everyone to like me too and agree with what I do or don't do - or at least validate my feelings.  I'm sure there will still be times I ache for that.  And I might just have to go without and trust God with my heart in it.

But, I don't need hundreds or thousands of facebook friends - I just need a few true real life ones.   I need real.  I need honest.  I need true.  I need love.  I need to be able to give all these things in return...  I can't do fake anymore.  I can't do drama anymore.  I can't do hidden agendas and dishonest motives.  I can't do lies.  I can't handle having to wonder where I stand with people. And I promise, if you are a friend of mine, you will get honest, true, real, straight forward friendship.  I am far from perfect, but I will never pretend to be.  Some people find that refreshing... others would prefer a fake perfect person who just goes out for a drink and smiles.  I have had to smile through some very hard times - and I will, but I will never be fake.

And so over these past few months of doing my unofficial '10th step', I'm realizing that sometimes it's okay to let people go.  Sometimes God removes them for reasons bigger than the ones that *seem* to be at hand.  And really, I don't want friends I can't be honest with - or ones that won't be honest with me.  I have no desire to waste what little time I have in my days and in my short time on earth with the wrong people.  God has shown me over these past few weeks that I did what I can, what He asks us to do, and it's okay to move on...  I'd also be totally open to it if any or all of them changed their minds.  I'm not angry or bitter, just finally at peace with it all.

My life is too heavy for some, I've realized this.  But if you know me, you know my heavy is smushed between a lot of laughs and joy...  If you don't know that, then you don't know me.  And I'm tired of having "friends" who don't even know who I am.... and clearly having a lot who I don't know either...  But I am so, SO thankful for the ones that I have that are constant and TRUE, even if behind the scenes where I don't always see them but know with all I am that they are THERE and will be if I need them.... and that if I call them for a shoulder, I can also be that shoulder for them - maybe, and hopefully even, in the same conversation!  Friends that I never share my heart with and am either left hanging or wishing I wouldn't have told them what I did.  Friends who are trustworthy and loyal. Friends who will be honest with me about hard stuff that I can also be honest with - minus all the 'christian-ease' talk that is not only insincere, but annoying. (sorry, but it is!) Friends who can go out to have fun and cry together while there if a conversation finds necessary.

I have them... and I didn't have them before Rachel, obviously, since the group of girls I was always with before her are not people I see or talk to now.  I thought they were true, but when I got hard to be around, they were gone.  I have friends now that have loved me at my absolute worst and have chosen to stay.  Thank you.  You are all gifts to me that God gave me one by one through my hardest days and I thank Him for YOU!

Now, my deepest desire is to take these days we are given and use them to invest in the people who God gave me.  None of us know the number of our days and I pray mine are longer than I think they will be - but it's a constant thought I have that most go through life without considering... I could literally not be here tomorrow... what can I do with TODAY?  Life has a way of getting in the way... appointments, responsibilities, etc... but I'm blessed to have a life that has freedom in my schedule to spend time with others and although it's hard with all my littles right now, I want to do that more.

I don't want to attend another funeral that I find myself thinking "I wish I would have...."

I remember telling Matt I loved him for the first time.  He didn't say it back and I felt really dumb.  Figuring I would scare him away, when I saw him next, I said I was sorry I said that, it just came out - and he still didn't say it back!!  He just responded "No regrets".

That has always stuck in my mind.  It's okay to love and not be loved back.  It feels dangerous, but love is a beautiful thing.  And sometimes the less you get in return, the more beautiful it is.  Like a mother for her newborn baby...

With Rachel, my only goal was to avoid regrets.  Whatever I needed to do... not do... say... not say in order to avoid regrets is what I did.  And it still is.  So, I took care of my part with these people.  If they died tomorrow, I wouldn't regret leaving that undone.  Now, moving forward, I just want to pour love into people in a way that leaves me with no regrets.  Preferably to live in a way that doesn't require me to go back and apologize in the first place!  But ultimately, I just want to truly trust God in each and every circumstance that if He wanted these people in my life, they would be.  And that the ones in my life are here for a reason and to love them well for as long as they are, always aware that they might not be here tomorrow and today might be all we have.

Tuesday, July 7, 2015

Bye, Baby

It's been a hard month.

You know they say that there is one thing that all cancer stories have in common... all stories really...

Everyone has a 'last good day'.  The problem is, you don't know it when it's here.

Shortly after I found out I was pregnant this time, I also got the news that my Grandpa was given 6-12 months to live.  They found colon cancer, just like what took Uncle Dale from us and it had spread already.  He had been in the hospital at Christmas (around the same time Papa was dying) because his heart was weak and they found a mass in his colon.  Shortly after, they saw it was in his lymph nodes.

I went over to see him that April afternoon and walked in to find him sitting in his favorite chair.  He greeted me with his usual "Hello, bewtiful" with his slight accent.  I walked over, fell to my knees and gave him the biggest, strongest hug I think I've ever given him short of when Uncle Dale died 5 years ago.  As I let go he asked me a question I never expected.  He asked "Are you mad?"  I didn't know I was until I answered "I'm pissed."  and we laughed together... because that is what you did with my Grandpa, you always laughed with him.

He sat in the chair for a few minutes and then moved to the couch where he tried to lay down while still making me feel like he wanted me there.  As he struggled to get comfortable, he said "So, what's new with you baby?"

"What's new with me??" I almost didn't even feel right answering that question with the news he was just given... me?  who cares about me??....  he did.  So, I thought for a second... what could I even say that wouldn't feel completely ridiculous to say at a time like this?  And so although I hadn't told many people yet, including most of our family, I told him..."Well, I'm pregnant." and smiled as I waited for his response.

"Are you really?" he asked with an excited voice and a huge smile.  "Do you know what you are having yet?"  I said no, it's too early and he said "Well, I hope it's a big fat girl."  "Me too" I said, "But it's probably another BOY!" and we laughed some more.

My Grandpa is one of 13 - and only 2 of them are girls.  Both the girls died at young ages, 1 and 3 in the same year from the influenza and so his mom was left with a huge bunch of really cute, crazy Italian boys to chase after.  She had come over on the boat from Italy and didn't speak a word of English.  I look at pictures of her with the boys and am in awe of her, black mustache and all.

Within a few minutes, he started to apologize saying he really needed to lay down.  His head was feeling dizzy and he couldn't hang out anymore.  I helped him to his bed, gave him a hug and kiss and said I'd be praying and he looked up and said "Bye, baby" as he always did when I left and then added "Good luck with your baby."

I felt it, like it was the last good day... it sounded like he was saying goodbye... like he knew he would never meet this baby... but I didn't want to believe it.  I left counting out months and thinking it's still possible he'll meet this baby... I just want him to meet this baby....

As the days past, we watched him go down quicker than we ever saw coming.  His head was spinning all the time and I never saw him sit up comfortably again.  That moment when I walked in to see him in his chair will always be in my mind.... He loved his chair...  but I never saw him in it again.  Eventually, the doctor said the cancer had likely gone to his brain, causing the spinning and headaches.  And the rest of the next 6 weeks was torture for him.

He was in excruciating pain and needed more care than he was getting at home, but he didn't want to leave his cats... and the more he hurt and the more he endured all alone, I realized I couldn't wish another day on him... no matter how much I wanted him to meet this baby.  This is a man who had been through the Korean War... and every time I saw him, he said over and over "I've never felt this horrible in my entire life."

On top of all of these emotions, I managed to pick up yet another stomach bug and was violently ill for 10 days.  I was at home, held up on my couch.  I lost 4 pounds because I couldn't keep anything in and ended up in the hospital for fluids and nausea medicine in hopes of just a minute of relief.  The days went by and I worried about him... worried I might miss his last good day, not realizing it had already come and gone.

And then I got the message... he was now 'actively dying'.  6-12 months had turned into 2.

Have you ever watched someone 'actively die"?  Because unless you are there for those last 2-3 days, hearing someone died is just that - hearing.  I have heard all sorts of people have died.  Even heard stories of close friends being with parents as they actively died... but until you watch someone actively die, it's not anything you can fathom.  Even with Rachel it was different because her body and mind weren't fighting for another day.  And in just 6 short months, my family sat by two of our most loved family members, my Papa and Grandpa, and watched them die... watched cancer eat them from the inside out and much before they were truly ready to go.

So on Wednesday, June 24, I went over to see him... He was in a hospital bed in the living room... placed in the same place that Uncle Dale's was less than 5 years earlier.  I sat in the chair next to him and heard him call me "Bewtiful" for the last time.  Except this time, he prefaced it with "Goodbye" instead of "Hello".  I am so thankful for those moments because I got to tell him how much I love him, how thankful I am for him, and how much I am going to miss him.  He looked up when I was done and said "Why won't you let me go...?"  I said "I will, you can go any time you want to, you have been through enough.  You are the bravest man I know." He asked if I wanted to go with him and I said I would love to...  He sat up.  I asked where he was going because he wasn't supposed to get out of bed and he said "I'm just sitting up to kiss you goodbye."  I hugged him, he kissed my forehead and said "Bye, baby." and laid back down.

And the rest was a slow nightmare to what I hope is heaven for him, but won't truly know until I get there.  Sometimes I hate being aware of the fact that not everybody goes to this "better place" that even people who don't believe in Jesus somehow know exists.  The scary part is that it's as if they don't also believe that hell exists and it does.  Everyone's souls live on forever when we leave this earth - but not all go to heaven... some go to hell.  Having people I love so against Jesus makes death so freaking heavy for me I can't even put words to it.  Sometimes so much so that I hate knowing the truth.  I find hope in this only in knowing that God can work out whatever He pleases in a soul before someone dies and that anyone predestined to spend eternity in heaven with him, will, regardless of what we think they believed here on earth.  We never know what happens between God and a person in those last days. (if they get those last days)   I will say that 3 times in that last 24 hours, I heard my Grandpa call out for Jesus to come get him.  I can't imagine he would do that if he didn't believe in Him.  But it sure would be nice to know for sure...  I also know that there are many who claim they believe, who sit in church every week lying to themselves,  who will stand before Jesus when they die and the Bible says He will say "I never knew you."   You can't fool God.  In the end, He knows all.  Unfortunately, going to heaven has nothing to do with being a good person.  All I can say to all of this is please make sure you are right with God and have a true, living relationship with Jesus Christ.  You never know when your last good day will be.

He died that Friday... just like Papa... just like Rachel... a hard Friday.

The day of his funeral it stormed.  And that evening, the sky was full of rainbows.  Amazing double rainbows like I've never seen.  My Facebook page was being covered with them as people saw them and thought of Rachel.  And suddenly, just like that - in the middle of horrible pain, I was given a symbol of hope.  And while I never base my beliefs on feelings, because feelings so often fail us, I have to say that I will always feel like the double rainbows were God letting me know that two of my loves had found each other and were dancing together with the angels.


Wednesday, June 10, 2015

His Love Song

Since I haven't written in a while, this will be hard to keep short.  I'm sorry.

I haven't shared much about it, but the last 6 weeks have been a nightmare for me.  In 2013, after being told by my long time OBGYN after Ezra was born that if I wasn't going to do "professional" counseling (I have The Great Counselor, I hardly think some lady is better than He) and go on antidepressants, then I needed to find another provider.  I did.  And that was all fine until I got pregnant again because my PCP doesn't do prenatal care.

I decided I would just go to Maine for all my appointments, only to find out after my first visit that my insurance wouldn't allow me to go out of state without a referral.  So I signed up at Goodwin Community Health  (I normally keep names private, but I'm all done with that.  If they are ok treating me like they do, then it must be ok to share) in hopes that I could do the majority of my prenatal care there and then transfer to Maine at the end, like I have with the last 3 babies.

I started having a lot of heavy bleeding.  Not spotting, BLEEDING. And it was going on for a couple of weeks.  I called the office before I even had my first appointment and when I asked that she order a scan to check on the baby, the midwife Lucy (from Garrison) told me "I'm not trying to be annoying, but it's either going well or it isn't and an ultrasound won't change that."  I said fine, I would wait until the scan at 13 weeks where we check the baby for anencephaly at which point she brought up genetic counseling and testing.  I told her I don't do those things and don't want to and she said I would have to in order to get the scan to check the baby's head.  I said "Well, I'M not trying to be annoying, but I'm not going to." and that's when she said "How did you end up at Goodwin? I told her and she followed with  "I'm not sure this is the best place for you... we can't even refer you to Maine bc we are affiliated with Dartmouth..."  I told her it didn't make sense since I've now had THREE babies in Maine that I would go somewhere else and she said she would look into it and call me back and then never did....

That led to me setting up an appointment at Rochester OB who does send patients to Maine and my first appointment there has had me in tears repeatedly.  First they drug tested me saying "Everyone in Rochester is on heroin"  and then forced me, completely against my will, to have a test for sexually transmitted diseases because "People get embarrassed about their life styles and don't tell us the whole truth and we need to be able to care for the baby"  And even though I begged her not to put that tool inside of me because I never do paps in early pregnancy and had been bleeding a LOT, she still did.  I cried for HOURS when I left.

Then, she repeatedly referred to Rachel as my "anencephaly pregnancy" instead of my "daughter" while going through the history of my children.

I told her I can't take folic acid and explained why. (because of my MTHFR mutations)  She argued with me that I needed to be on 4 mg of folic acid a day "because of my history of anencephaly" - I told her I need active folate, that it's different, that folic acid had almost destroyed my body because I can't process it, and that I had what I needed.  She said ok and I thought we were on the same page.  Until I went to the pharmacy and they tried to give me a prescription for folic acid she had called in anyway.

I told her I didn't want to follow her plan of a scan at 11 weeks and again at 13 weeks bc it's too far to go to Maine every other week - she insisted I need the 11 week apt so they could do genetic testing before I was 13 weeks.  I told her I'm not interested in that and the trip is hard for me to make with 5 kids at home.  She scheduled me for 11 weeks anyway and said I could tell them that when I get there.  I called the office when I got home and told them I wouldn't be going to the 11 week one, to please move it to just 13 weeks - they said they would.  Then I got the call from Maine and it was scheduled for 11 weeks anyway.

All this to say, I have been COMPLETELY ignored and degraded by every medical 'professional' since this pregnancy started.  I have been violated, bullied, argued with over everything.  Not only was I not getting the CARE I needed, I have actually been WORSE off because of them.

After a few very lonely and sad weeks, I decided I was going to do a couple of things.... first, I am not ever going back to Rochester OB again.  Second, I am going to file a complaint for what "Dr." Macvetti did to me.  I need prayer for how to go about that please - but I do believe it needs to be done.  I can't be the only one she is treating like that.  It needs to stop.  And third, at my appointment today in Maine - which I made sure before I went would be with Dr, Pinette because I trust him - I would lay it all out for him and just prayed God would direct me from there.

I did... and He answered.  And I haven't been able to stop crying all day, I'm just so relieved...

First of all, I went alone.  I never do things like this alone, but I just wanted to be alone.  I wanted to be able to feel whatever I felt - say whatever I needed without an audience.  I've been really sick, so the drive had me nervous - it's a long way....

I got there and I had a tech call me in who I had never seen before.  I asked her name a few times and can't remember it so I need to find out because she was AMAZING.  I was late, but she didn't short me... in fact, since baby E was moving around so much, she just sat there and let me watch... for 8 minutes... It was such a gift.  I fell apart a few minutes in and started blubbering about how complicated and difficult pregnancy is.  Often, even at dr's offices, I get left with silence when I do that, but this woman looked at me and said "You have been through something that most women can't even comprehend... even if they want to... and it's going to impact how you feel even still."

I cried more.

She finished with the scan and we stood there talking for another 10 minutes. She gave me her TIME and her EAR and didn't blow me off or pass me along to the Dr so she could move on to the next.  I went on and on like she was an old friend... and honestly, I've needed that because I'm at a serious shortage of 'friends' right now.  Even people I try to reach out to about where I'm at, either don't have time or don't know what to say and I'm left feeling worse...  I thanked her for listening.  She was a gift from God to me today.

She brought me to a conference room where I waited for Dr. Pinette to come in as I stared at the pictures of my little baby and his/her round head.  I got a text from Matt that he got a start date for the job he's been waiting on.... I looked at my clock 10:27am. ♥   So nervous and excited for this change - it's going to be a major faith walk as it is a big cut in pay to begin with, but it holds much more potential for our future.  He starts on July 13!

Dr. Pinette came in with a huge smile... "Baby's head looks good!" he said. He speaks my language!  We talked about my aneurysm... we talked about my heart issues... we talked about my blood pressure... we talked about how my other kids were doing... how I am doing... how I'm feeling... you know, like actual PRENATAL care!   He said I can go for my third VBAC and that the aneurysm shouldn't be cause for a c-section!   He said that since I've already had 2 VBACS, my risk with another decreases drastically.  He said that it's possible that this baby has reset my blood pressure button and there is a chance it might not go back up (pray for that one, that would be awesome!!)  He asked "Is it safe to assume that we aren't doing any of the genetic stuff, I know you haven't in the past, do you want to just skip that?"  I said yes and he said "OK."  (Now THAT is the right response from a Dr when a patient declines a test!)

Then came the heavy conversation... I told him what Dr Macvetti did to me.  He didn't say anything in response at first, but he did cover his entire face with his hands and peeked out to listen like he was watching a scary movie as I told him the details of what she did... bawling, I explained what happened and how I don't know how I let it happen... but that basically, I feel like every Dr writes me off bc I have opinions and don't just do everything they say like a puppet -  and I was feeling like she was my last resort to be able to deliver in Maine and that if I didn't do what she wanted me to, she was going to make my life a living hell.  How is that for abuse??  He paused and said "As a patient, you have the right to decline anything you want to and that should be respected."  I told him declining things is what makes Dr's not like me and he said "I like you.  I like patients who are involved in their medical care."  He told me when he saw my name he got a big smile on his face.  The tech had told me Dr Pinette remembered me when she was bringing me to the room.  She said "That's pretty impressive with the number of people he sees!" But I guess the same reasons most dr's hate me is what makes me memorable... my little girl with anencephaly and my strong will that God gave me to walk through that and beyond.

And then he told me he will see me for the rest of my pregnancy.  I've never been so thankful to be considered high risk - but I am.  He's willing to let me space appointments out if I don't medically need to be there to avoid the travel so I don't have to go back until my 18 week scan - which, just like Rachel, will be the Wednesday after my birthday.  I told this man about 3 times how thankful I am for how he treats me, for how he takes CARE of me... He said "You have been through a lot and you have handled it very well... you might not feel like you have, but you have... and you will do just fine this time around too."

Thank You Lord for a doctor who has always listened, always taken my cares into account, always had solid medical experience and knowledge mixed with the perfect amount of compassion and belief in me.  Thank You Lord for a doctor who gets me.  Thank You Lord for finally giving me a good doctor's appointment!!

I left there and made small talk in the elevator with a little boy carrying a kids National Geographic Magazine with sharks on it.  Told him they were cool and that my boys love those magazines and he was all smiles.  I walked out of the elevator and before I even got to my truck, I started crying.  I'm guessing the magazine was a nice distraction from losing it on a full elevator!

I got in and sat there for about 30 minutes sobbing.  I cried because I was relieved... relieved that the baby is ok, that I don't have to have a c-section, and that I don't have to go back to the other office.  I cried because I was overwhelmed with thankfulness for finally having a good appointment... for finally feeling heard... for finally feeling supported.  I cried because I was alone and I could and I so needed that.  I stared at the pictures they gave me resting on my lap and as I cried at the perfectly little round head, I said "I love you.... I love you.... I love you.... I love you...." to my baby.  I went to take a picture of the scan to post on facebook that everything went well and ended up with a picture of myself crying instead.

I realized it was way too dark in the parking garage to take a picture of my u/s and so I wiped my face and started to head home.  I turned the radio on and was hoping for a Rachel song...  the song that came on was not one on my Rachel list so I thought "Maybe it will be the next one." and suddenly a few lines in, it hit me like a ton of bricks.... It was a love song to me, from God... the timing was His.  The picture of me, instead of the baby, wasn't an accident.  He was overwhelming me with his love.

The Chorus says:

I love you more than the sun 
And the stars that I taught how to shine 
You are mine and you shine for me too 
I love you 
Yesterday 
And today 
And tomorrow 
I'll say it again and again 
I love you more 
I love you more 



It took me a few minutes, but I heard my words to the baby play back in my head "I love you... I love you... I love you...." as I tried to take a picture of it and getting a picture of myself instead, God whispered to my heart "I love you more."   Hearing the words, like a love song from God, saying "You shine for me too" brought me back to the day of Rachel's diagnosis, when a friend told me I was going to shine for Him through her death.  It was the last thing I wanted.  I didn't want to shine, I wanted things to go 'right'.   Now it's my true heart's desire that no matter what comes my way, I can shine for Him through it.

These words also made me think of a note I have that my mom wrote me when I was a baby that says "I love you yesterday, today, tomorrow.. forever" and I just think of that unmeasurable love of a mother - the love that takes over when all else in the world fails... and how it faints in comparison to God's love for us.

I have left Congress Street in Portland, Maine crying more times than I can recall.  It's been an unbelievably painful 5 years.  Every great once in a while, a mountaintop can steal your breath and bring you to tears similar to that of the deepest valleys.

Today was one of those days.  Today was a day that only because of the valleys God has carried me through did I recognize the miracle happening before me.  Only because of how difficult these past 6 weeks have been did today flood me with so much hope as my unspoken prayers were answered.  Only because of the unimaginable loss I experienced with Rachel do I feel silenced by my unexplainable gift with this little one.  Only because I had so many thoughts bombarding my mind and heart, have I been at a loss for words all day.

The car ride home that I was not looking forward to, knowing I'd be tired and nauseous...??  It went by in the blink of an eye.  Like, I really didn't realize I was almost home until I was about 5 minutes away.

I came home and showed my mom and the kids the ultrasound video... I paused it as my mom left and Des said "Hey, look!  The baby is in a heart!" and the baby's sac was shaped like a heart.  I went to push play and realized it was stopped at 1:43 ♥

I haven't felt very inspired for anything in a long time.... Not in writing, not in photos, not in new ideas for Rachel's Legacy.  But this afternoon, God put an idea on my heart so I made this video.  I think it conveys a little bit of what is on my heart ...  that for as much as I love my children - God loves His more... and I am His.  It's kind of hard to imagine.... but today I have been so completely and beautifully broken by this Truth that I feel like I can finally breathe.  My God is the God who provides... I'm so thankful for His love song. Of course when I looked up the song, it was 4:30 long. ♥
Here is the video I made of my little E:


And the lyrics to the song - "More" by Matthew West

Take a look at the mountain 
Stretching a mile high 
Take a look at the ocean 
Far as your eye can see 
And think of me 

Take a look at the desert 
Do you feel like a grain of sand? 
I am with you wherever 
Where you go is where I am 
And I'm always thinking of you 
Take a look around you 
I'm spelling it out one by one 

I love you more than the sun 
And the stars that I taught how to shine 
You are mine and you shine for me too
I love you 
Yesterday 
And today 
And tomorrow 
I'll say it again and again 
I love you more 

Just a face in the city 
Just a tear on a crowded street 
But you are one in a million 
And you belong to me 
And I want you to know 
I'm not letting go 
Even when you come undone 

I love you more than the sun 
And the stars that I taught how to shine 
You are mine and you shine for me too 
I love you 
Yesterday 
And today 
And tomorrow 
I'll say it again and again 
I love you more 
I love you more 

Shine for me 
Shine for me 
Shine on, shine on 
Shine for me 

I love you more than the sun 
And the stars that I taught how to shine 
You are mine and you shine for me too 
I love you 
Yesterday 
And today 
And tomorrow 
I'll say it again and again 
I love you more

I love you more than the sun 
And the stars that I taught how to shine 
You are mine and you shine for me too
I love you 
Yesterday 
And today 
Through the joy 
And the pain 
I say it again and again 
I love you more 
I love you more

And I see you
And I made you 
And I love you more than you can imagine
More than you can fathom 
I love you more than the sun 
And you shine for me