Monday, November 9, 2015

♥ Her 5th Birthday ♥

OK, so here's the scoop... 

Months ago, a friend at church told me of someone she knew who was carrying a baby with anencephaly.  Back in September, the woman who took my pregnancy photos and birth photos for Rachel, told me she had met a girl (who I didn't know was the same girl) that she was going to take photos for because her daughter had anencephaly and that she gave her my blog address.  A few weeks later, another friend mentioned she met a girl online and that she was due on December 3rd (Rachel's bday) with a little girl who has anencephaly and she also had sent her to my blog.  I still had no idea it was the same person.  All the pieces didn't come together until I contacted this girl to see if there was any way I could help her through our nonprofit or to support her.  When I realized it had been the same person all along, I knew this is where God wanted me to spread love this year in memory of Rachel.  But unlike my usual plans, I have only known this was something I could do for the last few days and December 3rd isn't far away.

And so this is the plan... to love on her and her family as they prepare to meet their little girl.  I know many people do not know how to attend a baby shower for a baby who will not live long.  I get it.  But please believe me when I say that showing up with a smile and a hug is more important than having the 'right' words or the 'right' gifts.  And honestly, I don't think this family is expecting or hoping for gifts anyway.  They just want to celebrate their daughter's LIFE while she is with them.  They are a military family and do not know many people in this area so have not had any kind of shower yet.  I'll admit, with what I have on my plate already, I felt crazy offering, but God wouldn't let me not... and so I'm diving in!  (and welcome anyone who wants to help!!) :)

PLEASE join us!!  I have created a facebook event page that is private in order to protect the privacy of the family, but anyone who is wanting to come and show support and celebrate this sweet little girl is welcome, so please contact me if you do!

If you can't come, but want to know how you can help them... They have told me that stars are symbolic for their daughter and I know that anything personalized (contact me for name) would be really special.  I also know that some of my favorite gifts at Rachel's celebration were ones that made it feel like things were 'normal' - like lotion or a Christmas ornament or blanket.  They also have another child, a boy, who is still little and I'm sure wouldn't mind some lovin'.   Please keep them in your prayers, now and as time goes on.

Our nonprofit is going to be helping with the urn for their daughter and covering the cost of the celebration.  I also have a memory box filled like we usually give to the hospital that I will give to her to help make memories in their time together.  So, if you want to help financially with those things, you can make a tax deductible donation to Baby Rachel's Legacy.  You can send a check or use the Paypal button on the side of my blog and just make a note what you want it used towards.  We will also be collecting a love offering for them to use in the weeks following their daughter's arrival and if you contact me, I can tell you how to give to them directly.  Our nonprofit cannot give cash to individuals so if you send it to Baby Rachel's Legacy, it will need to be used on items or services.  If you want to bless them with a monetary gift to use how they wish, it will need to go directly to them.

I'm honored that this family as allowed me to be a part of something so special.  I pray you will come and be a part too.  I had over 85 people come to Rachel's celebration and they were not all people I had met before - and it was an amazing comfort to my hurting heart.  And while this shower is for antoher little girl, there is no doubt that none of this would be on my heart to do if Rachel never came and went... but also if I wasn't loved so well by all of you while she was here.  So thank you for your love back in those days - and for all of you who have continued to follow along with my journey all these last 5 years.  For your patience and love and grace and mercy... and for always supporting me when I get another prompting from the Spirit!  I've said it before, but it's so, so true... I couldn't do any of it without you!

I'm excited to see what God has in store...  Rachel Alice Aube, Mama loves you ♥  I can't believe you'd be almost 5.  Miss you every minute of every day... until then...

Monday, November 2, 2015

The "Why"

After the many disappointments I've experienced this past year on the topic of Rachel... from people I trusted betraying me and strangers I don't know stealing and using Rachel's photos without permission on a video I would have never allowed her to be a part of... I had decided that I have seriously failed Rachel.

I decided I failed at protecting her.  I decided I failed at keeping her life beautiful.  I decided I failed at doing what moms are supposed to do - keeping her safe and out of harm's way.

I have spent months - since the whole thing happened with one of my board members in August - trying to figure out if this is really what God wants me to do.  And if so, how to do it when people are impossible to trust and my heart can't take any more pain.  I have prayed and waited and cried and waited and pushed it onto the back burner and had it come back only to push it away some more because I just don't. know. what. to. do.

This pregnancy being so difficult and emotion filled doesn't help at all and so I am currently thinking the best plan of action is to wait until after I have this baby, and also allow the huge changes that have taken place in my family time to settle down, before I make any decisions.  But my overall feeling is that I would be further along in my healing process if I didn't constantly have my wound being torn open again.... and it seems as time goes on, that's only more likely because these people seem to forget that I only know most of them because my daughter died.  And her death is still very real and very hard for me.  I'm still just a human enduring a loss too big to comprehend.  I'm still completely blinded by my grief at times and still a sinner in need of mercy and grace.  And I still very much need a lot of help in so many ways.  I'm just past the point time wise of where any of that is considered reasonable for anyone who hasn't walked in my shoes.

I'm pretty tired of "Rachel's Legacy" being referred to as an organization and not the memory of my baby girl because she is not an organization.  Her legacy is not a ministry.  I have an organization that I use to minister to others who walk this path - but Rachel's *legacy* is not that.  Rachel's legacy is about my very personal encounter with God during the most difficult days any mom could ever live... as I carried her to her death, buried her, and then mourned her young death and the gaping hole that leaves in my life and heart.

And I feel so often like I just fail more and more and that she (her memory) would be better off if I just stopped trying to keep it going.  I wonder at times if my fear of failing her is going to be what God eventually uses for me to give myself permission to stop worrying so much about the rest of the world and draw back into my little family - my first ministry - here on earth.  The truth is that my fear of failing her has been at the center of pretty much all I have done for the last 5 1/2 years... It's at the heart of all the beautiful things I've done and it's unfortunately at the heart of all the ugly things I've done.

I promised her while she was here that I would build her a playground... that I would bring awareness to her condition and be her voice to help people understand that she was worth it all.... that I would help other people walking the path that her & I walked together.... that I would do whatever it took to make doctors and the medical community see that babies with anencephaly deserve love and good care too.... and that I would never regret having her or forget her.  I promised her that she would always remain a part of our family and that her siblings now and to come would know about her.

And I know with all my heart I have fulfilled those promises to her.

I also told her that she made me a better mom... that I would always appreciate her siblings more because of her... that in every hug and kiss I gave them from the day I named her on, that she would be in every one of them...  I told her that the middle of the night needs they cried for would never again frustrate me or make me feel like I was being anything but blessed to be able to care for them.

And I can honestly say that all those things are true.

I know God will lead me in my next steps as I continue to wait and will prepare me along the way.  He always does.  It's funny though, I had plans on what I wanted to do this year for Rachel's birthday and started to feel like it wasn't right.  I started to question if being at the same hospital Rachel was born at, at exactly 37 weeks along again like I was when Rachel was born, to bring memory boxes to the labor & delivery floor, would be too much on my heart.  And with everything that has happened with 'friends' this year, and with how hard this pregnancy has been physically, emotionally, mentally... I was pretty sure I wasn't supposed to do any of it.  My shopping cart has been full with the items for the care packages for parents and siblings since August and I didn't ever have peace about clicking "order now".

Then a couple of weeks ago, I got a call from the hospital bereavement coordinator.  She said they are in the beginning stages of providing more support for the baby loss community and have some new things they want to do.  We talked for quite a while about all they have planned, which I'm really excited about.  She said that I have done such a great job memorializing Rachel and sharing her story that they wanted to know if I'd be interested in speaking at some of their support groups or meetings.  She said it wouldn't be for a while though - and finally, something felt right... I can't do much at this point in my life with all my kids being so little and just needing time with them... but in a year from now... ?  I just know God isn't done with Rachel yet.  It won't be in the same ways and honestly, that is a relief for me at this point in my life.  I've been craving a change but having no idea what that would look like or how to get there.

I just need to put my plans or expectations of myself or others aside and learn how to trust Him in it all... even in the hard stuff because He uses it ALL to guide me.... I look back over the last 6 months (and even the last 6 years!) and it has not been easy - but I can see His hand in even the most difficult things.  It's so hard to care about what He's doing for the future when the present hurts like crazy... but the big picture always reveals why even the most painful of things happens and the future outcome always proves that He knows best.  Some times we won't know the details of the 'why' on this side of heaven... but there always is one.

So, I planned to write absolutely none of that when I came on here!  I actually came just to share a comment I got tonight that reminded me that I have NOT failed Rachel... It was on the Truth About Anencephaly post I wrote in 2012 and when I get comments on that post, I am always nervous to open them.  Sometimes, depending on where I'm at emotionally, I will wait a day or two because people have said some mean things to me.  I opened this comment tonight and it was confirmation that sharing my heart here has not been in vain and that so many of my hopes have been made reality in the lives of others, especially the medical community, who will no doubt make a huge difference for those of us who leave the hospital without our babies.

This comment is a tangible seed of hope for me on this journey... it's proof that Rachel's life will be a gift in more ways than I will ever know, and hopefully even long after I'm gone.  I hope this beautiful lady becomes a nurse in the NICU, and I have a feeling that she *will* run into a baby like Rachel... I pray what she read here will make all the difference for the families she supports. With that and her heart to truly understand and help people,  I believe it will.  And that's what Rachel's Legacy is about.  This is the "why" that keeps me going....

This is what she wrote:

"Rachel is beautiful. You are both angels. I am currently studying to become a nurse and hope to work in the NICU one day. As I was sitting here reading my medical terminology book, I came across the term, "anencephaly," which was followed by a description that sounded too sad to be true. I thought, if I'm going to work in the NICU someday, I better read more about this and see some pictures to get an idea of what anencephaly is. I read a few articles, mostly containing definitions, pros and cons of aborting vs. carrying full term, and then I came across your blog. Your words drew me into your experience, and with each paragraph I felt I was sharing somewhat in your journey, crying, smiling (especially at Rachel's picture), and remember how important faith and God are. Thank you for your courage in giving Rachel life, and for writing and sharing your story. Rachel is a blessing to so many. Now I can have a better understanding and more empathy if I meet a baby like Rachel, whether someday my own or someone else's. Thank you and God Bless you and your family."

Thursday, October 29, 2015

Permanently Broken

I hadn't been to Rachel's grave but maybe twice since August 4 and Matt hadn't been with me for a visit in I don't know how long.... so on the 3rd, we took a trip together, just him & I.  I had picked up a pretty mum plant for her and for our porch here that looked like little pink daisies.  The weather was decent, which was good because there was a lot to be done.  All of the stuff there was either dead or broken so we replaced the daisy lights and cleaned everything up.  The one good thing about 'things' is that they can be replaced or fixed.

I was brought down memory lane from when we picked her stone out.  I was 7 or 8 months pregnant and standing on the ground that would eventually hold her, talking to the monument guy about what we were hoping to get her for a stone...  It was late in the season for dandelions, but I looked down and there was a little yellow flower right where she would soon be buried.  The same thing happened on this visit. ♥

It's interesting, because I was due with Asa two weeks before Rachel's 1st birthday - and yet the dates lining up that time didn't seem to be as heavy on my heart as they are this time.  Maybe I was still in survival mode, being in my first year of grief, but for some reason, this pregnancy is bringing me serious flashbacks that didn't happen with Asa.  At times, I forget it's not her in me because everything feels so similar.  It makes the pain feel raw again in ways it hasn't in a long, long time.

I didn't know yet in these pictures that I had poly, but it's kind of obvious when I look at them now seeing as I was only 28 weeks here... 

So, I felt better, leaving her spot looking clean and loved... and here I am almost a month later and haven't been back once to take care of it... so I know it's looking yucky again and it's weighing on me.  I was going to go this morning, but I ended up coming back home because I needed to rest and car rides tend to put me in serious pain these days.

Continued prayer for my poly and pain levels and also for the baby's safe arrival are appreciated.  I also covet your prayers for my heart and mind.  These days are hard every year, but this year is feeling especially heavy as I await Rachel's youngest sibling's arrival... and I'm starting to get the feeling that year 5 just might have been a hard one anyway.  I'm missing so much with her. :(

I'm actually starting to wonder if it ever will be consistently easier.... I have moments of 'easy' but 'hard' always returns and honestly, I'm pretty tired of it.  I'm worn out from the hard.  I just want easy.... like life was like before I knew any of this pain.  I am tired of feeling so broken.. and even more tired of feeling like I can't be put back together.  Tired of knowing how impossible it is to replace her or to mend the places in my heart where her absence is felt.

I know I have seen great and amazing healing throughout the last 5 years and I'm thankful for that. God has been more than good to me and provided more than I deserve.  I just wasn't prepared for the permanently broken aspect of this journey.  It was easier to handle when I was naive enough to think it was temporary, like the rest of the world often believes about grief.  But it's not.  It's permanent.  I still believe it has a beautiful purpose in God's plan for my life... but I just wish I didn't have to endure it.

Sunday, October 4, 2015

All of Me

In September of 2010, we went to a beautiful beach in Maine to take pregnancy photos with Rachel.

Last week, we went back to that beach to take photos with our little E.... My friend Amanda took them for us as a gift.

Being there felt surreal.  I didn't remember anything about the drive or how to get there - I only remembered parking on the side of the road, explaining to Kelly (the NILMDTS photographer) why I I had the blanket and the little "hope" token with me, and what we can see in the photos we have.  It was just a month after her diagnosis when we were there with Rachel, so my mind was literally just trying to keep my body going.

I don't think I realized how much so until we went back last week.  Driving there and realizing I had no recollection of any of it reminded me of just how heart wrenching my news about my little girl was and how hard it was to walk through those days.  I had different 'props' this time... this time it was my Rachel bear that is the weight and length Rachel was (and ironically the estimated length and weight this baby is now in my womb) and a picture of her to represent her in the photos. The emotions going there were a reminder of just how much of this burden is on my shoulders alone... but also the great gift of how much I have gained in knowing her. The pain, though, is so real and so... still here.

It's been 5 years.  I'm pregnant again and have had two other babies since her.  Everyone assumes I should feel better and just be able to think about the new baby.  And new babies are 'happy' and 'exciting' and no reason to be scared....  Everyone wants to talk about it - and I'm "supposed to" want to talk about it too.  But I don't because I can't answer like people want me to.  And if I do, I'm faking it... and that gets so tiring.

It's not really that I don't want to talk about this baby.  It's not that I'm not excited or happy about this baby.  It's not that I'm *only* fearful about this baby.  I'm just not what most people are when they are pregnant.  I don't feel like I'm 'expecting a baby' as much as I'm 'waiting to see if I'll get one' because I have no false sense of security that just because my belly is big and baby is dancing around that I will have a baby come home with me in 3 months.  And I can't answer a question, even as simple as "when are you due?", without feeling the conflicting emotions - and the questions that inevitably follow are even harder to hear and answer with grace, like a normal, undamaged person would.

Every once in a while though, someone asks me that I know is safe to share the burdens of my heart with - someone who has held their lifeless child and then waited for another - and it's such a relief and actually helps me to feel closer to this little one.  Today was one of those days and I really needed it.  But you know,  I'm SO tired of being needy.

I'm so tired of being unable to be there for other people. Tired of not being able to follow through with the things on my heart.  I'm tired of being so bad at so much in life.  I'm tired of everything being so complicated in my mind and heart.  It seriously makes me wish I wasn't me.

I've never enjoyed pregnancy - hormones have always been hard on me - but since Rachel, I can't even put words to how difficult it is for me to be pregnant...  and this time, being due at the same time as her, has me in such a similar place as I was when I was carrying her - yet nobody thinks I should be, expects it, or gives any room for my feelings in regards to it.  I'm tired of failing and tired of feeling hurt, tired of letting people down, and really tired of being bad at being Rachel's mama, so I'm just hiding out and trying to press into God.

Back in August when I was walking through another August 4th heartache - and waiting on this baby's 'routine' ultrasound, I came across a song called "All of me" and wished I would have heard it when I was carrying Rachel because that is how I felt about her.... but last night as I was editing the photos from last week, I went to pick a song to put on it and came across it again. It might seem like an odd song to put on a pregnancy photo shoot movie, but it's where I'm at as a mom....

I want to give this baby all of me too, like I did with Rachel.  I don't want to sit back, knowing I could lose again, and not make use of this time with my child because I'm afraid of the pain.  I don't want to miss it twice.  And I know enough to know that no amount of attempted detachment will ever remove the pain if something did happen to this baby, but probably only add regret too.

And so I'm trying to take the next 12 weeks and celebrate this little life while it's here so that if it's gone tomorrow, I won't have regrets.  I still probably won't enjoy answering questions.  I'll still probably continue to hibernate until my head is in a better place and I can be a better friend.  But I'm going to be more purposeful about bonding with my little E.  I've been talking to him/her more and started looking around for a going home outfit and blanket.  And just like with Asa & Ezra, who both came with similar difficult emotions - and Rachel, who didn't come with the ending I wanted - I know God will get me ready to meet this baby, regardless of the outcome.

"I'll trade the fear of all that I could lose, for every moment I'll share with you. You're gonna have all of me...."

Here is the video...  Thank you SO much Amanda for taking these!  I'm so thankful to have them ♥

Friday, October 2, 2015

Behind the White Picket Fence

Maybe I'm the only one, but since I had Rachel, when I look at pictures of my wedding day, I often think about how completely clueless we were as to what was in store for us.

I had an idea of what happened when you got married and added to your family and it didn't include heartache and dead babies.  It didn't include a constant struggle against sin and selfishness.  It didn't include brain aneurysms or autoimmune diseases.  It didn't include false friendships.  It didn't include most of what growing up and growing in the Lord does...  It didn't include being so bad at so much in life...  Mostly I just pictured a white picket fence, 4 kids, cooking and cleaning, baking cookies - and being able to keep a house clean and smelling fresh! - and things continually getting easier with time - not harder.  Growing up has caused me to learn that there is pain behind every white picket fence.

Often I'm tempted to feel like we've got it all wrong and that's why we continue to have hardships and trials - but the truth is, God never promised we wouldn't.  Some of the most dangerous and hurtful people are the ones who tell people that if they just have enough 'faith' and just pray enough and trust enough that nothing bad will take place.  Because the Bible doesn't say that.  It says that in the valley... in the pain and sorrow and death and sin that exist in this world, that God will be with us.  That He is enough.  That He can turn the ashes to beauty and make something more out of it all.  That we can trust HIM.  Not to give us what we want, but that He is in control of everything and has purpose, even in the things that hurt and are not what we asked for.

Sunday night I had one goal - to watch the "blood moon".  I heard it was so rare that it won't happen again for another 30 years.  It was supposed to be at the most spectacular from 8:00 - 10:30 pm.  That night, I was so overcome with sadness that I was too busy having what could totally be classified as a complete breakdown, that I never remembered the moon.  The next morning, I woke up to Isaiah telling me I *had to* come look at the moon.  I said we missed it and immediately was even more upset because it just seems like I can't get anything right - not even looking out the window at the right time.  I went to look and the moon was still big and beautiful.  It was nothing like what happened the night before, I'm sure, but it was still dark in the early morning hours and still looked as bright and round as a light bulb in the sky.  Isaiah was certainly satisfied with it....

I went to get my coffee and mumbled to myself, maybe if I'm still alive to see the next one in 30 years I won't be crying my nights away anymore and can actually see it.  And I just felt so hopeless - thinking that probably isn't likely.  That I'll either die from a heart attack or brain aneurysm by then or miss it again because that is just how my life seems to go.

I went outside with Ezra later that morning and saw that suddenly, flowers were blooming everywhere in my garden.  Plants that have been barren or dead for weeks - some longer - all had just one or two new flowers on them.  I have no idea if a 'blood moon' can make flowers bloom, but it was crazy.  My daisy mums were due to bloom, but to see the carnation standing tall - a huge Hibiscus out of nowhere - and the one purple flower in my pot that someone gave me for Teacher's Day months ago that has been dead for weeks and looking pretty sad for much longer than that... and even one of my day lilies was showing it's face...

I started taking pictures and one picture really captured my thoughts...  mostly because of the white picket fence in the background.

I have a beautiful home - it's small for us now, but when we moved in, I couldn't believe it was mine - I have the white picket fence. I have a house full of kids and get to stay home with them like I always wanted.  I have a hard working man who is a great and devoted dad.

I also have dead babies.  Pain.  Heartache.  Loneliness.  Marriage is hard.  Parenting is hard.  Good, loyal and true friends are rare.

I have a beautiful garden that I worked for years to make so it always has blooms somewhere through the warmer months - but I still have to face winters.  It's just the way life goes.  I never like winter better just because I can see it coming.  I hate watching things wither and die - and since I buried Rachel, I have developed a serious dislike of the hard, frozen ground and how the snow gets in the way on the roads on the days I need them clear the most.  My favorite season by far is spring because I love watching things come to life and bloom...  but I suppose I only love it so much because of the hard season before it that makes the new growth so refreshing and encouraging.

Right now I am watching the world lose it's color; it's life.  I'm seeing the beauty of the leaves as they die and watching them start to fall, leaving behind bare and plain trees.  The air is cool, the nights are longer and colder, the fun and light summer days are gone.  These days are always hard for me because I feel Rachel's birthday coming from August on - and I'm not sure if that will go on for my entire life, but I certainly didn't still expect it to be 5 years later back then... so I won't be surprised if this half of the year is always a long reminder of my days with her.  And being pregnant again right now... it's just so strange.  Hard to believe at times.  Hard to remember it isn't her at times.

I'm preparing myself for a long winter....  but I hope along the way God will give me splashes of color like he did on Monday to keep me hopeful because I'm struggling to feel it... to see it... to know it... that this season will eventually lead us back to the new life and growth of spring.  That death only stings for so long and eventually life will spring forth and with it bring the promise of eternity.

I remember when I was pregnant with Rachel looking at the falling leaves and hearing God whisper to my heart that I need to learn to bend with him.... and I'm in that place again.... needing to learn to bend and trust.  I also remember after she was gone how year after year he has used my garden to love on me as my heart has ached for her.

Monday when I saw all these beautiful flowers peeking through dry and withered plants I felt a sense of calmness wash over my heavy heart as he reminded me the control He has over everything and how He can bring life out of death and beauty out of pain - in unexpected places, at unexpected times.

Thursday, October 1, 2015

Baby E Update

My appointment last month at Maine Med was... how should I put it... a nightmare.

After all I went through early on in this pregnancy with local doctors and with insurance - to finally feel relief and comfortable with the landing under Dr. Pinette's care, I went in for my last appointment with a lot of concerns I needed to address with him to find I had to see someone else.  This someone else is a new guy who... how should I put it... shouldn't be a doctor.  That's the absolute nicest way I can say how I feel about my short time with him.  It was awful.  Maybe he'll get better with experience, but yikes.

So then the nurse came in to schedule me for my next apt and I said I didn't want to see him again and she told me that I wouldn't be able to see Pinette anymore because he's on a different assignment now... and since I'm on the high risk side of the office, I don't get to pick who I see and that they can't even guarantee I won't get stuck with that guy.  I started crying and cried the whole way home.

And then my EKG I had that day came back abnormal.  I have been having a lot of heart issues again and last Sunday spent the night in the ER again - getting blown off by another bad doctor.  I swear unless you are an old man, Dr's don't take heart problems seriously.  Maine Med had referred me to the cardiologist after my EKG and I went for my appointment on Monday and he didn't even have the EKG that I was being sent there to review and blew me off saying "We both know there is no reason for you to be here" (as if I have time to go to unnecessary apt's??) And there is nothing they do for pregnant or nursing people anyway so call them in a year and a half when I'm done nursing and we can talk medication and scan my carotid artery again (it's 50% blocked which he didn't know until I told him bc he apparently didn't have time to read my chart before entering the room).  I asked if he could look at the EKG I had that was abnormal from before I was pregnant and he said "They must not have sent it over".  When I told him that HIS OFFICE did the EKG, he said "it must not have been scanned in, and wouldn't make excuses for technology, but it didn't matter anyway".  Then he asked how many kids I have and said "you have mostly boys, right?" (not sure how he knew that) and asked me if this was my last baby and I said yes to which he replied "Unless it's another boy?"

Is this guy serious??  He doesn't want to talk about my heart issues, track down my EKG - or even take the reason I'm there seriously - but he wants to analyze why I have so many kids, which he apparently thinks is because I'm trying for a girl?  First of all, I have TWO girls already.  Second of all, it's sort of none of his business.  Third of all, I'm about tired of everyone on the planet assuming that I would only have another baby for something as shallow as needing a certain gender. (try walking into the grocery store as me... it's sickening how many times people ask me if I'm trying for a girl!!)  I would love another girl, but I will absolutely LOVE another boy.  I have 7 children because God has blessed me with the exact little humans that He wants me to have - or miss - while I'm here on earth.  Might not fit this guy's picture of the "American Dream" (one girl, one boy, two jobs, a big house and expensive cars) but my dream has more to do with bringing home a living child that I get to raise, regardless of what's between it's legs.  I'm wondering why my insurance company needs to pay him for that visit?  I'm sure it wasn't cheap.

So, to put it MILDLY... I was totally DONE with doctors.  They are a joke and the one doctor I've found who actually puts his brain to use in his profession I've now been told I can't see....  in the middle of a lot of concerning things that nobody else wants to pay attention to.

I was going to just cancel my appointment for yesterday at Maine Med - but since I've been feeling so abnormally tired, I decided that I should go since it was my blood work and diabetes screening day.  I had enough conversations with the nurses leading up to this appointment that everyone was well aware of how unhappy I am about this new set up.

I went in for my ultrasound and it went well.  I didn't watch much bc it's getting harder for me to not see the gender since I've had hundreds of ultrasounds in my life and can read them well... but I have it on a flash drive to watch later and the tech was super nice.  She gave me some cute chubby cheek pictures, which have me seriously staring at them nonstop since I left there.  I am so in love...  I have *cute* kids.  This baby looks a lot like Asa!!

Then I met with the nurse, who gently prepared me for the other new doctor... she said "Give her a chance, I think you'll like her." and I was like "Well, she can't be any worse than the other dude...if you told me anyone liked him, I wouldn't believe you."  (hormones remove my filter which is why I tend to hibernate while pregnant - but she laughed so I think she agrees... just saying.)  I then let her know that, after this appointment, I didn't plan to come back unless I needed to be seen until I went into labor.  And that was my plan.  No more appointments just so they can make money and I can be dragged through the mud and waste my days anymore.

The doctor came in (and I did like her - Thank You, Lord!) and we started going thru my list of concerns.  She listened and answered them thoughtfully and seemed to actually know what she was talking about. (should that be rare?)  First up, I had written to ask her about my fluid.  I have just gotten so big this past month and between struggling to breathe and how I feel - and how HEAVY my belly is - I had a feeling I had too much.  Sure enough.... the ultrasound showed that I have Polyhydramnios (poly) again like with Rachel.

With Rachel, poly was extremely painful for me. So this probably explains why my back is on fire again.  It also explains why I can't breathe when I lay down and why I'm so big.  It was also my biggest concern with Rachel as far as making it to her birthday without going into early labor because the risks of premature labor are very high with poly. There are a few risks that I'm better off not knowing, but do - like placenta abruption, cord prolapse and stillbirth... With Rachel though, the fluid built up because she wasn't swallowing and the Dr. said that there is nothing wrong with this baby, that this is just a fluke thing that will hopefully stay under control long enough to get the baby safely here.

I think I believe her that the baby is ok - and yet I'm just wondering why everything has to be *so* much like Rachel's pregnancy??  The time of year, the ages of my kids, the drives, the complications....  I thought I was going to like it lining up with Rachel's dates, but I was so naive.  It's so hard.  So much harder than I expected.  I feel like I'm reliving it, except without knowing my baby is going to die.... and yet the constant reminder that my baby DID die.

But unlike people who have never buried a child, I can't just tell myself it won't happen to me again and believe that - because I know the fact is, I could leave the hospital again without my baby - even if I don't know it's coming.  And the hard part for me is that preterm labor and placenta abruption are the two big concerns I've had since I found out I was pregnant and if you have talked to me about how I feel, I'm sure I've said one or the other to you in the last 6 months.  I've been asking them to check if my placenta was attached right since I was 9 weeks along when they couldn't even see it yet.  I struggle with the knowing that God prepares us for trials by getting our minds and hearts ready for them.  These are not fears that I have had in other pregnancies so I have a hard time not feeling like I'm being prepared.  And I don't want to be prepared, I want to have - and keep - my baby.

The other aspect of this that just seriously complicated my life, is that I now have to travel (and find sitters for all day trips) weekly to Maine Med.  So my plan of no more appointments... yep, that isn't possible.  And not only do I still have to go, but I have to go every week.  The fact that a Maine trip takes up an entire day is bad enough because I don't have time or energy, but it also costs me around $20 in gas... and we don't have it. It's all just overwhelming.  Hard to believe it's happening, really.  I know God will provide, but wow....  And the trips... Rachel is on my mind the whole way.  This time of year is her time and making the Maine trips - those are her roads... it's so complicated in my heart.

When she said I had to come back weekly, I knew I did because I've dealt with poly before and know how quickly it can go bad - so I didn't debate her like she was probably expecting, but I did feel like I might seriously need a short stay at the crazy farm!  I'm already so busy and so drained!

I got my gestational diabetes test back today and, thankfully, I don't have it so that's not the cause of the fluid build up.  That's good news because that would definitely not help me get to full term.  So they will scan me each week and we'll pray baby stays in there and healthy, that the thing they found on his heart truly isn't worrisome and that this fluid thing isn't because of something wrong with him... and that (s)he comes home to be with us at Christmas time.  I'm feeling a bit nervous that I will end up having him/her on Rachel's birthday.  I really don't want to share her day with anyone.... the 4th would be okay though... it's a Friday ♥  I'm also nervous about my water breaking or having any bleeding (placenta issues) while I'm at home since I would never make the drive to Maine Med on my 7th delivery.  As a general rule, once my water breaks I have 30 minutes or less until the baby is born. And rumor has it when you get to #7, they only come faster... the drive is over an hour... So I would love prayer that my water won't break before I'm at the hospital.

As of yesterday, baby was measuring 2lbs 15oz and in the 76th percentile.  I do love being able to see what is changing in there.  I have been feeling pretty detached from this pregnancy because it's just been so hard - not just because of pregnancy itself, although I'm definitely feeling my age, this was MUCH easier in my 20's without a full house! -  but the stuff going on in my life through these past couple of months while I've been pregnant...

But I have to say seeing these chubby cheeks and squishy face makes me smile... I can't wait to hold this little (big) one.  Each and every life is a gift, no matter how small or how long they are here.  And every baby is a true piece of the mama, from day one.  I remain amazed at how intricately made each life is and how amazing a gift each one who makes it home from the hospital is.  In a world where thousands of people take that for granted every day as they leave with full arms, happy hearts,  and carseats buckled around tiny bodies, I will never - could never - forget that there are also thousands who leave broken hearted with empty carseats.  And I will never forget the day I did... which only makes the days since Rachel where I have left with my babies all the more monumental.

I hope this is another one of those times.

Some people wondered how I could be so sad to lose a baby I didn't spend my days with - but oh, how mamas love their babies so long before they are ever born.  Even having experienced it, I can't explain it or understand it, but it's so real and so huge that I'm not sure anything else in life compares to the love a mother has for her child from conception.  Rachel was my child before she was born.  She is my child now.  And this little chubba wubba is my child too and always will be.

And I love this baby more than life itself.

And I never posted pics after my last apt, so here are the ones from 23 weeks... (s)he has gained 1.5lbs in the last 4 weeks!  You can see it in the cheeks for sure!

this one reminds me SO much of Rachel's 20 week picture. ♥
hands near face

Saturday, September 26, 2015

My Shoulders Weren't Built for This

Where do I go for answers?  Other people?  Self help books?

Who do I turn to when I'm hurting... sad... betrayed... struggling to forgive... tired of life....overwhelmed?

Am I the same person in public and in private?  Do I care more about what people see or what God sees? Do I understand that He doesn't miss a. single. thing?  Motives and all... ??  The very depths of my heart...?  Do I hate the things that He hates?  Even the 'acceptable sins' ?  Do you?

Why do I try to carry burdens on my own weak shoulders - or continue to hope that other weak people will somehow share the weight - when, without fail, God has shown me that His shoulders are strong enough to carry it for me and that He will never let me down - and that people always do...?

Why do I try to be so strong?  Trust is a major issue for me - time and time again people have proven to me that trusting others is a dangerous and unwise thing to do. And I suppose in my early years of being a Christian, I expected more from believers then I got in party houses all those years - but sometimes the only difference is lack of intoxication and the ability to recite the 'right words' with a nice smile.  And so hurt after hurt and betrayal after betrayal, I've struggled to not allow that to bring back a truth I've lived with my entire life - that I have to rely on myself alone or I will be disappointed and hurt - and even that disappoints me regularly.  

But why - or how - or when - does that turn into me struggling to trust my God who has NEVER once given me a reason to feel He is untrustworthy or that His Word isn't true.  The ONLY One who has never lied to me... betrayed me... shared my secret pains with others... hurt me... left me alone... turned His back on me or said one thing and did another... The only One I don't have to question if His motives are right and true... Truly the best friend I have ever or will ever have. 

Maybe that's why every time this song comes on the radio, I can't seem to get the volume loud enough and it never seems to play long enough for the amount of tears that want to fall...  My shoulders weren't built for this. And I'm tired of carrying it...  all of it.  I'm tired of letting people in and being hurt and allowing satan to use that to make me question the goodness of God.  If anything the facades I am so tired of within the church should only prove all the more how sinful people on earth are - whether they recognize it or not - and how much MORE I need God to make it through this life.

Because the last 5 years - from the valleys to the mountain tops... all the pain and the amazing blessings mixed in... have been the most beautifully difficult days I've ever walked through.  I have been blessed in more ways than I deserve and have been given beauty in the midst of ashes that many people will never experience and I would never trade.  I have 7 amazing and beautiful children; a piece of me in heaven... and I've known pain like no other.  And it seems to never let up, even as God continues to bestow blessing after blessing upon me.  The struggle is real.  The reality of my life is that it's more difficult because of the very gifts I've been given.  And I am so, so thankful and so aware of how unbelievably blessed I am - and yet so, so tired and so weary in these hard days.

And I can't do it alone - so take it from me Lord.... take it all, not just a little bit.   

Oh, these hands are tired
Oh, this heart is tired
Oh, this soul is tired 
I'll keep on, I'll keep on, I'll keep on

Faith is something I am not accustomed to
And trusting other people is something I don't really love to do
I've never been a fan of it
I act tough, but really my shoulders they ain't built for this
And I don't have nothing
It's like I'm standing in the rain and You offer me a rain coat
But I would rather stand there wringing wet than take the hand out

What's wrong with me?
You said You've always got Your hands out
And I cannot continue on my own
So take my hands now
I give You everything
God, not just a little bit
Take it from me
I am nothing but a hypocrite
I hate sin, but I built a house and I still live in it
Afraid to open up the door to You
Let You into it
My soul is lost and
What it needs is Your direction
I know I've told You I do not need Your protection
But I lied to You
This thing is tiring
And man was not created for it
God, please retire me now

Oh, these hands are tired
Oh, this heart is tired
Oh, this soul is tired 
But I'll keep on, I'll keep on, I'll keep on
I'll keep on, I'll keep on, I'll keep on

Trust is something I am not accustomed to
And I know the Bible says that I should always trust in You
But I don't ever read that book enough
And when I have a question
I don't take the time to look it up or pick it up
It collects dust on my nightstand
I'm just being honest
Please take this out of my hands
I have no control
I am just a person
But thank the Lord that I serve a God that's perfect
I do not deserve the opportunity You've given me
I never knew what freedom was until I learned what prison means
I am not ashamed
I don't care if they remember me
My life will always have a hole if You are not the centerpiece
Take me out of bondage
Take all of my pride
If I don't have a Savior, I don't have nothing inside
Take all of my lust
Take all of my lies
There's no better feeling than when I look in the sky in Your eyes
It's amazing

Oh, these hands are tired
Oh, this heart is tired
Oh, this soul is tired
But I'll keep on, I'll keep on, I'll keep on
I'll keep on, I'll keep on, I'll keep on

I'll keep on, I'll keep on, I'll keep on

Sunday, September 20, 2015

God Speaks: In the Flowers of the Field

For Mother's Day, I put flowers at Rachel's grave and matching ones here in her garden.  I learned last year that this kind of plant has pretty blooms from spring to fall.... just my kind of plant....

I wasn't getting to her grave often and it was really hot and dry this summer so I threw out a request on facebook for help with watering her flowers.

I went a few times unsure of what I would find and thinking that because so many weeks pass between my visits now that I was bound to eventually find a dead plant.  But visit after visit, I was blessed to find her plant well cared for and blooming like crazy.  (Thank you Ellen, Sarah and anyone else who watered for me!!)

The plant I have in her garden here on the other hand was not doing so hot.  It had maybe a couple of blooms, but I forgot to water it all the time (even though it's my focal point out my kitchen slider) and I don't think it gets the amount of sun it likes in the spot I have it above her bench.

When I originally started this 'series' of God speaking, this post was supposed to be along the lines of how much better God can tend to flowers than me.... and I suppose it still is in a different way.

But the last few weeks here have been difficult.  I don't have a lot to say about it all except that if you're reading my silence as things aren't good, that is both true and false at the same time.  If there is one thing I have learned through the last 5 years of my life it's that God is close to the brokenhearted and carries me in the valley.  So that is the 'good' part of what has taken place in my life.  Thank you to the people who have reached out and checked in via text and email.  I appreciate your thoughts and prayers and am thankful to be loved.  I just don't have the energy at the moment to interact with anyone so don't take it personal if I don't respond.  I am finding that this fragile heart of mine much prefers a slower paced life and that cutting out the noise of social media and useless conversations has been a necessary thing for me and my family right now as we wade through another trial and a ton of change.  

I was waiting to do this post until I could take a picture of the plant I have here so I could show you how different they looked.... but somehow even that has been hard to get to.  I'm blessed to have an overwhelmingly busy life, but I am so, so tired and really struggling to keep up with all I need to.

One morning, I opened my kitchen blinds to find a bright beam of sunlight shining just on Rachel's plant.... I want to put words to what this would symbolize, but I can't.  I do know though that it made me stop in awe of God.  I guess it feels like a reminder that He is here too, and He shines light in dark places, even if my flowers aren't blooming to prove it....  

Tuesday, September 1, 2015

God Speaks: In the Birds of the Air

In my last post, I mentioned that God has been using some old things to show me His continued love and attention to my heart.  I would have put it all in one post, but it would have been much too long.  These things are by no means the *only* ways he has shown me His love, but I am so thankful that He continues to speak to me in ways He knows my eyes will see and my heart will hear.

In September 2012, I wrote a post called Love Lives Here about my latest grave decor for my girl.  It included a birdhouse and feeder that I attached Bible verses to that reminded me of His care for me and for Rachel.  I put them up hoping some birds would set up their home for the winter there so when we went to visit each week, we 'would see life there'.  I put the verses for Rachel and how He healed her on the feeder - and the verse for me and how He will protect me and be a refuge for me on the house.

Not long after that, there are a couple more posts where I talk of how discouraged I was about this set up... the deer, the squirrels... who knows what... something knocked it over and ate all the food week after week.  It turned into a big mess that birds would not go near and only made me sad.  And so I took it down.

I put it here in my shed and each spring since then, I have hung the birdhouse in my lilac tree in our backyard.  Rachel has a lilac tree behind her too so it's my way of keeping part of her space here in mine.  I like to take things that have spent time there and put it up here.  

In my research before I bought it, it said if you want birds to live in it, you have to put a food source nearby.  So I never expected, nor was I watching for, birds to ever use it.  Especially since I have put it up and taken it down two other years and really just thought of it as decor.

One day a few weeks ago, Sam told me he saw baby birds outside.  I did the usual mom thing of "aww.. that's so cute Sam..." and moved on, too busy to slow down and look with him.  The next morning, I was in my bathroom and I heard birds chirping.  I mentioned it to Sam and he casually said they were living in the tree outside.

I'm slow, people... I still didn't put it together....

Days later, I was in the yard, watering my flowers when I saw something out of the corner of my eye... a bird flew out of Rachel's birdhouse!

I know it's not all that unreal that birds would use a birdhouse... but the timing, the wait, the message it sent... just what my heart needed - especially with all that happened in August and it being the 5 year anniversary of Rachel's diagnosis.

I remember picking that verse for the birdhouse three years ago.  I remember typing it, laminating it, figuring out how to get it to stay on (and I apparently did a good job!) - and just how much my heart and mind needed to know that He keeps watch over me, covers me with protection, and gives me a great refuge under his wings.

I needed to hear that from him this past month too.  I just didn't know how much until He showed me.

He covers me with his feathers and under his wings, I find refuge.

Thursday, August 27, 2015

God Speaks: In the Crown of Thorns

I've always had attention to detail... I notice things.  I always have.  I see stuff that many people would pass by without a second thought, think about it, think about it some more, and then find deeper meaning.  Always.

Sometimes that quality is not so good - like when it comes to relationships and reading others.

Over the last 5 years, and especially the last 2 months, I have come to learn that I am so much safer as an introvert.  I mean, my heart is.  Maybe if I had thicker skin - or was a little more clueless - or lacked the ability to see through people...  maybe I'd be in some type of ignorant bliss and unaware of how very few people on this earth can be trusted.  But quite frankly, I don't and I'm not - and I have less and less tolerance for fake people as the days go by.

But, sometimes that quality is good - like when I'm trying to survive unbelievable heartache that has no good reason in our understanding.

Seeing how God spoke to me in all the details of my days to remind me that He hadn't forgotten me, that Rachel was loved and ALIVE - not only helped me through the hardest parts of my trial, but also helped me to know He was with me.

And I want to do a series, if you will, on just that... God speaking my language in order to comfort me.  This past month, He has shown me, in a few different ways, just how amazingly He tends to the matters of my heart, even when I am too preoccupied to notice.  Tonight, I want to share with you the progress of my most sentimental plant....

I've blogged a few times about the Crown of Thorns plant I bought while on our family vacation that first August, while still pregnant with Rachel.  I've told you how I was just reading about the crown of thorns that Jesus wore and how it showed us that we serve a God who is aware of our suffering... and then within the hour, I 'stumbled upon' this little plant on a sidewalk sale for $5.  I saw it from a distance and said "that plant reminds me of Rachel" and went over to see it.  I saw the name and couldn't believe it!  I had JUST underlined the words in my I Will Carry You book -  In every thorn in the crown they forced on his head, here is a truth I need to allow to settle on my brow, we serve a God who is aware of our suffering... And it was loud and clear to me that He was aware of *my* suffering having just found out Rachel would die.

I've talked of how that plant seems to be following my grief journey with how it completely falls apart and then builds back up to blooming. Just as I have done a million times on this balance beam of sorrow and joy.  A number of times, I've thought about throwing it away and getting a new one and trying to not care it wasn't the "one" from Rachel's pregnancy.  But I've hung in and watched it at the most ugliest of times - when I'm positive that anyone who saw that thing in my house wondered why I had a dead piece of wood in a pot here - and it has continued to be such an unbelievable picture of exactly where I am on my journey.

This is from an old blog post and easier than finding the picture files in my stash... The top is the day I bought it in August 2010 - the bottom was shortly after Rachel was born.  In this post on 12/29/10, I say it's looking much better than it had been, if that tells you how pretty it got!

Then on 1/21/12 - TWO YEARS later - and my very hardest years of grief - I wrote a post HERE where I talk about how horrible this plant had been doing, but that it was finally starting to flower again.  I posted this photo in complete awe of how well it was doing!  OK, so it has a bloom at the top, but that thing is ugly... unless you've seen it lose everything and realize it's still standing tall anyhow..... then you might appreciate the growth...

I kept the little price tag with name label in it. ♥

This past year, I got tired of having this ugly plant in my living area where it didn't make very nice decor.  I don't like to put plants in my bedroom because we have no bathroom upstairs and it makes it next to impossible to water it.  So I moved this baby up there - pretty much ok with the fact that it might wither away and almost relieved that I wouldn't have to try to nurse it back to life anymore.  Sometimes I get so tired of constantly fighting against death.

I guess it was happy up there because this past winter, it flourished in my room.  I would wake up in the morning and see it starting to grow - bit by bit - green by green - and bud by bud... and I'm not going to lie, this is the only plant I've ever talked to!  LOL.  I would open the shade and let it soak in the sun and ask if it was getting ready to come alive for me again, just when I needed it.

The warm months came and it looked good so I moved it back to my mudroom where it likes the morning sun... and this is what she looks like now...  full, green and with beautiful blooms all the time - all over it!  I also find it very sweet that yellow has always been one of my Rachel colors and this plant has blooms of tiny yellow flowers in groups of 4 - and Rachel was my #4 ♥

Details are never lost on me.  Thank You Lord for speaking my language!

of course, this one is # 0043 in my camera files ♥

The plant was so tall and lanky - and only had ONE stem left, all the rest had died,
so it constantly leaned to the side... so I dug it down lower to keep it from toppling over.
Now two years later, it appears to be growing new buds out of the soil!

I'm not really surprised that this plant would once again follow my journey - but I have to say that I'm so thankful that this feels like a proper representation of where I am at... especially given the fact that I have seen and studied the previous photos of this plant, and read my words that I felt it was a good picture of how I felt then... it's a beautiful reminder to me that while I was just trying to keep from toppling over, God was making me stronger from the roots up... and there is only one thing that can happen when roots go deeper and stronger... the blooms reach higher and wider.

I'm also not surprised at all that God would allow me to be somewhat unimpressed with the change in this plant until I needed His encouragement the most - and then one hard day, just like that, I walked by it and it's beauty and growth became like new to my eyes and I just thanked Him that He has strengthened me and held me up - with patience and kindness - and given me what I need to bloom again.  It is such a relief to feel like I'm not just surviving through my grief anymore.  It's been a LONG 5 years, but I am still standing.

I finished writing this and looked at the clock... 10:27  ♥ Hi Rachel ♥

Sunday, August 23, 2015

How YOU Have Helped

Back in March, I received an application for assistance in another headstone.

The little girl is named Lily and she also had anencephaly.  Her mama Kellie and I have talked a bit through email and I've read quite a bit of her blog... this little family is so sweet, so faithful, and so desperately missing their Lily.  She would be 9 months old now.  I remember how hard month 9 was for me... I know I blogged about it because I remember being in Maine on Rachel's 9 month anniversary.  Time, we are told, will heal all wounds... but losing your child doesn't work that way.

When Kellie contacted me, they had most of Lily's stone paid and were only needing a bit under $250 to pay it off and get Lily her stone.  I'm honored and so thankful that our nonprofit can be a part of something so special, so difficult, so beautiful and so very intimate for other families.

You may not understand the significance of a Burial Assistance Program... but if you ever need to buy a headstone, (or pay for a burial or urn) you will know.  Lily's stone cost over $1000 to purchase.  They are extremely expensive and some families go years without one in place because they can't afford it.  For some, this might not seem like a huge deal - but for me, and so many other moms,  I wanted Rachel to have something right away - I wanted her name to be seen and for her spot to be pretty.  As her mom, it was all I could do for her and my need to care for her didn't stop when she died.

We donated the remaining funds needed and I was so blessed when I recently received photos of them visiting Lily with her new stone.  Kellie gave me permission to share them with all of you...I wanted to show you a portion of what your support does for families who find themselves on a similar path as we did with Rachel... If you have supported Baby Rachel's Legacy in the last year, YOU helped to give this beautiful family this precious gift for their little girl. Thank you!!  You help us to be able to comfort with the comfort we received.

Here are the pictures she sent me and please be sure to take a minute and CHECK OUT HER BLOG so you can see a picture of Lily - she is absolutely breathtaking! - And give this mama a bit of prayer and encouragement. ♥


Saturday, August 22, 2015

He Knows My Name

It's interesting... I've been watching my posts climb towards 1000 for a while and thinking I would do a special post for the 1000th... this wasn't what I had in mind, but here it is... my 1000th post.

I have had no idea how to share - or if I should share - or when to share - what is going on with me in regards to the nonprofit I started for Rachel's legacy...  and I still don't, but a big part of the entire thing is wrapped up in what happened at the baby remembrance ceremony I held for local baby loss moms on August 1st and I really have been wanting to share about that.... and so I'm going to do what I have always done here and just share my heart - and try to do it in a condensed version since it's been a LONG couple of months for me and I just want to tell you about the butterfly release and have it make sense.

I decided to do a virtual race for one reason - God was leading me away from the big event I usually put on but I have to fund raise in order to keep a nonprofit funded and to do ministry through it.  I explained all of that in my post announcing it.  I honestly didn't want to do anything.  My time is already completely full with my own life - and I love doing things for Rachel, but I don't need to do them like I did the first couple of years.  Now I just do it because I love to help people and this is the ministry God set before me.  The baby loss community.

As the event date got close, my Grandpa died, I was in a rut emotionally with losing him and it seemed as though the race was not getting the response I had expected - so I was just really discouraged with everything.

Less than two weeks before the race start date, someone on my board of directors for the nonprofit told me that her husband wouldn't allow her to register for the event because he doesn't care about the success of the nonprofit and didn't like the virtual race idea.  She said he thought it came across as having the wrong reasons for doing it and that she thought that was why there was so few people signing up.  She said the reason she didn't fill me in on this 'insight' sooner was because she thought it would be successful when I first shared the idea, but now that it's not has decided this is why and that she didn't share the same feelings as her husband, but that he is very judgmental and she had to submit to his headship and so she couldn't support our ONLY fundraiser for the year. (with $20, mind you)  I told her that if she isn't allowed to support our nonprofit because her husband doesn't care about the success of it, she should resign and shouldn't be on the board.

She refused and it only got worse from there... She said she discovered in her research that her term was not up as I had thought based on an email I had stating it started in July 2013 because we didn't formally vote on that in person until Nov 2013 (mostly bc the meeting got pushed back when my niece had a massive stroke, but I guess that doesn't matter either as long as her 'rights' are still there) She said that she found though that *my* term had not be reelected or renewed and she wanted to get a disinterested third party to assess the situation.  Then I found out that she contacted an old board member saying she was just trying to update the files and needed information from before her term started in 2013, specifically when my term was voted in.  The only motive I can see in this would be to try to get information to use against me so she could prove that she was rightfully allowed on the board and I - Rachel's mother - was not.  Unfortunately for her, our bylaws didn't back her theory.

That is the short version of what was a complete nightmare the week of my birthday, E's birthday, my ultrasound with this baby, and Rachel's diagnosis anniversary.   And all caused by a family who we considered to be close friends of our family, let alone someone who I believed respected and took my God-given job as Rachel's Mama seriously and who I thought to be someone who I could trust with Rachel's name and my heart.  To see the conversations that she had,  in my opinion completely lacking integrity and care for me or Rachel - and with only bad intentions towards us - was one of the worst betrayals I've experienced yet on this journey.

In the meantime, I'm trying to go thru this without telling anyone, but it was obvious I was having a hard time and everyone assumed it was because I wasn't getting a good response from the virtual race.  I was getting messages from people, including some I don't even know, who don't know me or what was really happening, telling me I needed to just accept that people can't always do what I want them to... and it was so much bigger than that.  So much deeper... and by that point, I honestly didn't give a care at all if the race even happened, how much it made, or if anyone participated at all.  The entire thing was so tainted with her careless words in my mind and heart, it just hurt and I just wanted it to be over.

All that to say that as the baby remembrance ceremony approached, I honestly didn't want to do it.  I considered multiple times canceling - right up to that very morning.  I told Matt I was going to cancel and see if I could get a refund on the butterflies and he was pretty certain that wasn't right to do.  I told the board I wanted to cancel and they were pretty certain I shouldn't do that.  Everyone but me was pretty certain the show must go on - but I'm the one and only person who ever has to put the show on - and all I wanted to do was crawl in a hole and hide.  I was feeling so used, so uncared for, so disregarded... so betrayed.  I was still unsure of what would happen with the board or what she was trying to pull with her gathering of information from old members.  I had no idea what would happen the next day when we had our meeting to vote her off.  To say my heart was heavy would be a serious understatement.  I also had been so distracted from what I needed to be doing with all of this unnecessary drama that I didn't have a single thing prepared.  I didn't know what music I would play... or how I would play it.  I didn't know what I would say... or how/when I would say it.  I didn't know how I would recognize each baby... or how I would include Rachel - or if I even wanted to.  I just wanted to get there, get it done and go home to cry.

But I have always had a way of pulling things together last minute, under pressure... and so the night before the event, I was at Walmart at 9 pm buying supplies... and I was up until 2am creating what turned out to be beautifully labeled CD's with the music I picked for the ceremony to give as favors... and the next morning, I took the butterflies out of the cooler and got them ready, packed them, my Bible, a blanket and some tissues and headed over... wearing horrible clothes because the ones I planned to wear never got dried...

I've never been so unprepared for anything I've done for Rachel or other babies - ever before.  And honestly, I tried to tell people who apologized for not being able to make it that it wasn't for me, and I'm sure nobody thought I was for real - but I wasn't doing the release for me or Rachel - at all.  Butterflies have never been a thing for her in my mind or heart - but they are for most other baby loss moms in some way and I came up with the idea for everyone else - not me.  I didn't even feel like it was something I wanted to do for Rachel at all.

When I ordered the butterflies, I paid extra to have the envelopes written on.  Originally, I had them write "Always in our hearts".  I got a package that came with only two monarchs and the rest were painted ladies. (the monarchs are twice as big)  I asked for Rachel's name on one monarch and Silas' name on the other - but they got back to me and said all the envelopes needed to say the same thing.  So I "randomly" said "Have them say 'God knows my name'".  I picked it because I wasn't able to write Rachel's name and that is what came to mind... God knows her name - and He knows each of these babies' names.

Well, on the way to the cemetery that morning, just 20 minutes before the ceremony started, God whispered to my heart what I needed to share.... and before I got to the cemetery, I was in tears.  I had a pretty good wall up for my tears because I was afraid if I started crying, I might not stop - but it felt good to let the wall down and feel my real feelings... which were not anger or bitterness, but just sadness and pain.  The most I've felt in a long time.

I was planning on setting up under a tree in the field across from Rachel - but my friend Cyndie said she felt like we should be near Rachel.  I'm not sure why I was so hesitant, I think I was just so concerned with it being about all the other babies that I didn't want Rachel to be front and center.

I set up my blanket in front of Rachel's stone, opened my Bible and just randomly started to tell people what God had laid on my heart on the way over.

I shared with them that I have spent the last 5 years trying to convince other people that Rachel's life mattered... trying to get them to see her worth, respect her name, honor her memory and be gentle with my heart.  And I've come to realize that it doesn't matter what anyone else thinks of her - me - or even what they remember about either of us.  God knows her name.  He knows my name.  And if I love her this much, how much more does God love me?  I can't even fathom it.

I talked about how we all post things, trying to get people to understand our pain, to validate our feelings - but it doesn't matter if anyone else gets it.  God does.  He knows.  He cares.  And He is with us, even when everyone else disappoints us or misunderstands us - or judges us.

I read a few verses, which are quoted in the video I made and will share below.  I read a poem that my friend Chloe had given me for last year's race called Saying Goodbye... and then I told them that I would play a few songs and when "He Knows My Name" came on, I wanted them to one at a time, as they felt led, release their butterfly for their babies.  I told them I would not be reading all of their babies' names - because we don't need other people to say their names proudly in order for them to matter.  They matter because they were created by God and they are loved by God.  And if we are the only ones who ever say their name, that is enough.  I encouraged each of them to say their baby's name before releasing their butterfly.  Most didn't.  Most were content to just have their personal experience with the release and we all watched on - filled with many smiles and many tears at the same time.

A few times throughout, someone's butterfly would land on the ground and I got up and tried to catch them because I wanted to get a picture of one on Rachel's flowers.  Every time, I failed.

I went last and as I went to open Rachel's I said "This one is for Rachel."

I opened it and the most beautiful monarch came flying out... and flew up and landed right on Rachel's flowers...  It was awesome, but in my mind, being the realist I am, I thought it must just be that the monarchs are slower to fly because they are so much bigger... We all stared at the butterfly for a long time... I don't know how long it was there, but it was a long time.  I thought I should move on to Silas' butterfly, but said I felt wrong moving on with Rachel's still hanging out.  Then I got the idea that perhaps this one would wake up the same way and hang out too.

As I went to open it, I felt led to do it differently than planned.  I said I had planned to release it for Silas, but what was more on my heart was that God was impressing on me that I needed to let go of anything with Rachel's Legacy that wasn't about her or glorifying God.  I didn't tell them this, but in my heart of hearts, I was surrendering the nonprofit.

The few weeks prior, all I could think was it is bad enough that she is dead.  I'm finally at a good place with my grief where I usually am just happy when I think of her.  I very rarely cry and I almost always feel thankful and not sad when I talk about her.  And yet I have cried more this summer than I have in the last 18 months over Rachel.  I have cried because bottom line is I feel like I have failed at protecting her.  And I take protecting my kids - dead or alive - very seriously... as any good mother does.  I feel like in starting this nonprofit, I have forfeited my parental rights to Rachel and her name's safety and that is all I can do for her... and *I* picked these people to serve on the board - and look at how horrible I am at picking people for my girl.... I just felt like I had seriously let her down and there was no way to reign it back in now - except to shut it all down and go back to just me, Rachel, God and my blog... where I really help the most people anyway.

I opened that butterfly package, expecting it to join Rachel's on her flowers and that thing flew away as fast as all the rest, while Rachel's still stayed with me on her spot.

It felt so symbolic.  I chased around all these other butterflies, just wanting to force a picture of one with Rachel's spot - her stone - her flowers - anything... and I couldn't make it happen... then her butterfly, which only said "He knows my name" and so wasn't labeled specifically for her, but just the one God placed in my hand between the two when I picked it up, stayed there and made a huge impact on everyone looking on... and then the one that in my heart represented the nonprofit... gone like the wind.  It just reminded me that Rachel is the only thing out of all of that that is eternal.  Only the souls that God creates are eternal.  Not her nonprofit, not anything I do in my own strength... and certainly not a board member's husband's opinion of me.

After that, we all stayed sitting for a very long time... and had we had an audience like we do at the race, we couldn't have done that comfortably.  But the weather was so perfect, there was a warm breeze and the sun was tucked behind a cloud and we all sat listening to music for a few.. then I shut it off and we all still sat there in silence.  It was beautiful and I felt right where I was supposed to be... and so thankful that I can encourage and help other moms feeling the pain of the loss of a child towards healing.  Not that healing will ever be complete on this side of heaven, but I think we all felt a bit closer in that moment.  A bit less alone.  It was an amazing and peaceful silence.

As I drove home, I realized that while I certainly didn't go there intending to get anything, God sure did fill me up as I went to give... even when I didn't want to... to the ministry He has given me.  I'm so thankful I did what I said I would and supported these women because it was a blessing to them - and to me as well.

And on that note, I could use some prayer as I decide what to do with the nonprofit and how to do it.  I had no idea I would have such a difficult time finding 5 people who are unrelated and have the desire, ability and time to help who are also loyal and will not pull technicalities out to try to rip all I've worked so hard to achieve from me. I accomplished all of this fueled on my deepest pain and missing Rachel through my hardest of days and years. I did it all just striving to allow God to make something beautiful out of my pain and loss.  I did it at great cost to my family.  And it didn't come easy to me and still doesn't.   I can usually say I see things coming... and I saw parts of this coming, but not the extent of what just happened.  That was beyond anything my mind can comprehend or my heart can handle.

I just don't want to have any regrets... but I'm pretty sure that in order to protect my girl, I need to do what I do for my living children and keep my parental rights mine.  But I also don't know how to let go of all of this, knowing how much I and my family sacrificed for me to get to the point of having a 501c3 and that there were good reasons I worked so hard for it - because it makes it so much easier to help others.

But people are more aware now than ever before of what anencephaly is and I feel proud that I have helped with that in huge ways in this area.  I walk into a hospital or doctors office around here and mention Rachel or anencephaly and they know who and what I'm talking about.  I know I have not failed - I have started and finished a lot.  I've accomplished a lot.  I've done all God has asked me to, no matter how difficult (including change the race to a virtual one, even if people didn't like it) - and now I'm just trying to discern what He wants me to do next.  And I'm really struggling to know - to hear what He's saying above the fears and reasoning in my own head.  Pray that He will make it loud and clear for me and that I will know.  I am 100% willing to do whatever He wants me to, including letting go of the nonprofit, if that is what He tells me to do.  I don't want anything that isn't from Him or that I can't glorify Him in doing - and I also don't want to give up on something He hasn't asked me to.  I am pretty confused by it all and honestly, right now I want to let it go more than I want to stay... I just want to be sure that is where HE is leading and not where my hurting heart is telling me to go.  Again, please pray for clarity for me.

In all of this, the constant message that I have been getting from the Lord is that He knows my name.  He knows all the details of all that's happened.  He knows the past - and the future - all of it.  He will handle the things done with wrong motives and He will comfort me and give me peace along whatever path He sends me.  He is so good to me and has not ever once let me down.

I went to a Origami Owl party the weekend of my birthday and was planning on just getting a new chain for Rachel's handprint necklace, but fell in love with a bracelet.  Cyndie gave me hers and I picked charms and a slider for it. Originally I had a birth stone for each of the 7 kids, but wasn't feeling it was 'right' so I changed it to the heart that says "My Kids", a puzzle piece for me and Matt that says "You & Me" and I took the anchor out of the necklace that Cyndie gave me last year for Rachel to put it in there for God.  So it's God, me & Matt and the kids... with a slider that says "He knows my name - Isaiah 43"

And that is all that matters really - Him, my marriage and kids and that He knows our names - here or in heaven.

Here is the video I made for the other moms.

These are the local baby loss mamas I am blessed to have as friends...
and just the ones that could make it to the ceremony - there are a bunch more that couldn't.
4 of us in this pic lost our babies to either Anencephaly or Acrania.
Baby loss is real.  It's not rare.  It's happening all around you.
And God knows each of our names - and each of our babies' names.