Rachel's Story:

Friday, January 25, 2013

Time for Maternity Clothes!

I finally pulled out my maternity clothes on Sunday.  This is only the 2nd pregnancy that I've made it thru the first trimester without needing my stretch waists... Rachel was the other one. ♥

I got a spurt of energy the other day that was flamed by the fact that I had a screaming toddler and couldn't find the teething tablets because my house was so messy.  I decided we were taking a "Teacher's Workshop" (they do it almost every week in public school!) and we stopped school and CLEANED.  EVERYTHING.

And one of the projects was my closet...  I needed to get my regular clothes out and my maternity clothes in.(and off my bedroom floor!)  I was moving along really quickly because since I just recently put my maternity clothes into the attic, I had gone thru them and donated all the stuff I wouldn't use again... so I knew everything I had needed to go in my closet.  All I had to do was hang it.  I hung it all and got down to the last 2 shirts and one of them was the one I wore to Rachel's baby shower.

I started crying.  I didn't expect it.  That's usually how it happens. 

I've been emotional lately, crying a lot.  Not even about Rachel, just in general... like over the fact that we didn't have ice cream and I wanted some - or that Asa will not stop crying and I can't take anymore and I'm exhausted.  But these were not pregnancy induced tears.  I looked at that shirt and I missed her.  I missed those days.  I missed not knowing that she would be gone so soon.

I am getting really excited about the baby - which is much faster than it happened last time with Asa.  I know it's an up and down kind of road... but I'm feeling pretty good most of the time.  And my sickness has let up some, which is early for me too.  So it's been an 'easier' pregnancy than usual for me. (if you can ever call pregnancy 'easy') 

I do have one problem with my maternity clothes... I've only had winter babies so my clothes are the wrong sizes for the seasons... all my big stuff is winter clothes!  Not gonna work for this summer baby.  I'm so excited to be having a summer baby!  Gotta find me some dresses...

Anyhow... here is the first picture I've taken of my 'baby bump'....
 


Taking Down the Castle

A couple weeks after Rachel died, we redecorated Desirae's room... actually, what we did was switched her room and Isaiah's room so that we could build Des a castle in the little alcove that Isaiah's room had.  You can see pictures here.  I was almost more excited about this room than she was....It felt so good to give her the room of her dreams (as a complete surprise!!) so soon after she had to say goodbye to her little sister.

She's been asking for a while now to take the castle down....  and I've tried to encourage her to keep it.  I've told her over and over how cool it is and how when I was little, I would have loved to have a bed like that.  It had a light inside and curtains and everything.... She insisted she was too old for it and that her room would "just look bigger and cleaner" without it.

Somewhere in the last couple months, I started to accept that she's not into princesses anymore.  It's been complicated... like everything else... because I thought I'd have another little princess to hand this girly stuff down to.  But I don't.  And as Des gets older, I see that the little girl stuff goes by so fast....and I miss Rachel even more.  I grieve that she isn't here to follow in her big sister's footsteps.

So, taking down the castle was hard for me.  I want to hold onto the days in Des that I am missing with Rachel.  I want to have a little girl.  And Des isn't little any more and Rachel's not here.... and so as I watched Matt bring the castle out... and as we painted over the "Bibidi Babidi Blue" and the "Bubble Gum Pink".... and as we searched on line for "tween" room decor (she told me to use that word!).... my heart was heavy.  We moved her pink and white school desk (that Matt painted for her when we first started homeschooling in preschool!) into the basement and replaced it with a regular computer desk... we switched her white dresser with pink nobs for Alice's nice wooden dresser (the woman Rachel's middle name came from...) that matches her bed frame....

She's growing up.  It's bittersweet. I'm not sad that she's growing.  I think some times when people hear me say that I don't want my kids to grow they think that it's because I want them to stay little, that I like this stage, or that I'm afraid of getting to that 'empty nest' stage when they grow and leave...that's not it.  Actually, when I see people with all older kids, I sigh at the idea of how kids get easier to take care of and look forward to the day when I will have more energy and more help....and when I see adult children, I smile at how awesome it will be to have adult relationships with my children and to have grandchildren... All that stuff actually really excited me.  I can't wait to see what God does with my living children's lives and who they will become.  What a blessing it will be to send them off to college or to watch Matt walk Des down the isle.  What a precious day it will be when we are blessed with our first grandchild...and Thanksgivings!!  I can't wait for them all to bring their families home for Thanksgiving!   I think life just gets richer with time in a family... change and growth...that's not what I'm afraid of.

When I say things like "I don't want him to grow up" or  "it's going by too fast" it has more to do with the fact that I know the pain of not getting to watch a child of mine grow then that they are growing.  Every new stage is yet another stage I will never get to experience with Rachel.  It always comes to mind. And it always hurts a little.

Along the way in cleaning out the junk in her room, I came across some seriously cute - and way too grown up sounding - letters, songs, and stories she has written.  She's an awesome writer.  She's working on a book and I think she has more pages in hers than I have in mine!  And I was really impressed with it, it's pretty good!  She is just an amazing girl.  I found all sorts of really creative things... grades, sick notes and teacher pay checks from her doll school... I found a few things that she had written "I love Rachel" on.  She hung one of them on her wall next to her sign that says "All you need is love."  I just smiled knowing that Love... God's love... is certainly more than enough.  But also because it was that Love that helped me to love Rachel how she needed to be loved - and I think that shows in how my children love her too.  It was awesome getting to know Des more going through her stuff.  I should spend more time in there with her.

I'm so thankful I get to watch her grow... to get to find new rooms to meet her 'big girl' needs.... to see her changing... watch her smile and get excited....And boy was she excited!!  She has absolutely no idea how hard this was for me to pull off... emotionally, physically, or financially...but I guess that's the best part of being a kid.

The room's color scheme started with the lamp we found and it evolved from that.  It 'just happened' to be a 'tween' color pink with daisies on it - and I didn't pick it, Des did. :)  We then picked the wall colors and decor to go with it.  It also 'just happened' to go with the blanket and rugs she already had and she was happy to keep, so that worked out well!

I'm pretty proud of my stripes!  She didn't think she wanted them, but I had a vision and she let me go for it!  She loves it too!  I was nervous painting them, but it came out good! And surprisingly really straight!
 
I made this sign for her when she was still our only child... the gerber daisies I used in it were from her godparent's wedding.  "Ironically" we endedup with the same color as a theme AND Des picked out almost identical ones to put on her dresser withoutmeaning to match it!  I didn't realize it until I was hanging it up late the night before her party.
I think God was letting me keep a little of the 'younger her'. ♥
And this photo was the finishing touch... Me, Des & Rachel.
I didn't realize it until I posted the link to her 8th bday above, but
I gave her this photo for that bday. ♥ my girls ♥

Des was right, this room is way more her style....And Daisy (her hamster) seems to like it too, which was one of her concerns :)  Sweet girl, always thinking of her little Daisy.  I'm always thinking of mine, too. ♥

Wednesday, January 23, 2013

Speechless

Holy Moly, has it really been 8 days since I blogged!? 

I've been in a strange place lately.  Lots of things going on in my mind and heart - and no energy to do them.  A couple weeks back I started to second guess if I should even do any of this any more.  I heard myself say a few times to different people "Maybe it was all a mistake, maybe I need to just focus on my life and stop trying to do things for my dead daughter... because she doesn't care anyway and I feel like I can't do it all and I'm missing out on my life trying to keep hers from being forgotten...."

I look around and see that the rest of the world seems so far past Rachel... and I wonder if maybe I've held on too long... if maybe I am trying to force something that isn't supposed to be...and if maybe God is telling me it's time to rest...

I feel like I'm always moving against the tide.  Everything is hard.  Nothing comes easy.  I have been trying for weeks to set up one meeting with the board for Baby Rachel's Legacy and we can't seem to make it happen.... and I am just tired.  I think to myself  If I can't even schedule a meeting, how in the world am I going to do all that needs to be done this year?  I still don't even have a plan for the taxes this year and the 501(c)3 application is getting nowhere fast... it takes 2 weeks to get an answer to one question - and then I forget to respond cause I'm so busy I can hardly see straight.  If everything is this hard, can it really be God's will?

I ended up dropping one of my mornings at work because I feel like I can't keep up with everything (And Asa makes my shifts really hard with his constant screaming and jealousy)...now I'll just work 3 days a week.  And apparently just knowing that, I felt like I had energy because I came home and got to work on Rachel's Legacy.... invited a few more people to potentially join our board... AND I got together what I will be calling my "Winter Readers".... these 20 lovely people will be helping me with reading every one of my posts (almost 800 of them!) and gathering the best of them, plus giving me feedback, to use as a foundation for my book.  And they have committed to reading their assigned time ranges by the first day of spring, hence my "Winter Readers". :)

So, while I've continued to put one foot in front of the other and roll with the punches, I've still in the back of my mind been wondering.... should I just stop?  Is her legacy done?  Should I just let her be gone now?  Have I done enough?  Will I regret it if I stop?  Will I be relieved if I stop?  Will anyone even care - or will they be glad that we're not talking about our dead baby anymore?

And then I got the facebook message....

A women who said she needed to talk to me.  I friended her so she could message me and as I sat at gym class with the kids yesterday, I read her story.  I sat there shoulder to shoulder with a bench full of ladies and bawled.  I don't know if they didn't notice the tears falling all over my lap - or if they just didn't want to deal with tears, but nobody said a word.  I asked for a tissue and just got a "no, I don't have one".  I'm all too comfortable with crying in a room full of people where everyone pretends they don't notice.  It's kind of part of my life now!

I wrote back and told this woman that her timing (God's timing) for telling me this, could not have been more perfect.  I really needed this reminder - and it seems that every. single. time I consider leaving this ministry of Rachel's Legacy behind, God sends me a story... a life-saving or life-changing story and I know I can't stop - that He doesn't want me to stop... that He's still using me.

I asked her for permission to share her story, which she granted, but I am changing names and details so that her privacy isn't compromised.

Hi Stacy,  
So glad to have received your request, although it meant that I will actually have to go forth and write what I have always wanted to tell you...I fear I am not nearly as good of a writer as you are, you write so beautifully.
 
 I guess I should start at the beginning, one December I was at work, at the diner, it was a slow day, so I picked up the paper, Fosters to be exact, and I saw your story, Rachel's story, the picture of her little hands and I cried, I at that time was a mom to 4 little ones, one not even a year old..I saw you and your husband were members of Grace.  I, at that time, was a visitor of the Farmington campus.  I thought to myself, have I ever met them? seen them? 
Fast forward to the fall of 2011, this is where this gets tough.  On Nov 3rd 2011, I went for a dr appt because I had an issue with my IUD.  It had just come out one day, I had made an appt the next day, my dr gave me a month of the pill and a Plan B pill, for if there could be a pregnancy happening.  I took the birth control, but could not bring myself to take the Plan B..it felt wrong.  I was also sure I couldn't be pregnant.  However, I went back in, planning to get a new IUD.   When the routine pregnancy test showed I was indeed pregnant, an ultrasound that day confirmed a 7 week baby - a conception well before the IUD came out.  The doctor said most pregnancies don't go well, they miscarry or the IUD can become lodged in the fetus, but mine came out...I was in shock....terrified actually.  My husband and I did not plan on having anymore babies. I was so scared, I had 4 children, a tight budget, a daughter with a disability.  I knew my husband would be so upset.  I left with this tiny picture and a lump in my throat.
I told my husband that night and, as I expected, it did not go well.  He was very upset, normal worries flashed in his mind, mine as well.  I felt ashamed, I felt responsible, I didn't know what to do.  Over the next week we didn't speak much, family was not supportive.  I will not even tell you some of the things I was told, it hurts too much.
After a week of wandering around empty feeling,  I started to think about the unthinkable, I knew my husband was too, although neither one of us would say it.  Could I do that?  Who am I?  Who is he?  How can he ask me to do this?  I felt like he was waiting for me to make the choice rather that say it...Coward I thought.
I even made some calls... a consult they said was best to help.   
I went the next day and just sat in the cold, on the bench outside our church.  I prayed... and then after so long you came to my mind...

Your story, your strength and courage, I thought about how some moms choose to not carry on a pregnancy, but how you did.  I thought about your pain, how your would give anything to have your girl... you did that...that hard road...
I cried and said to myself "I have to do this.. I can do this...what kind of a person am I? All she wanted was her girl, and I'm daring to think about not having mine?" ( I just knew I was having a girl)...at that moment my phone rang, it was my husband..he said "I came home... where are you?  You didn't do anything did you?  Please no..."
I told him where I was and he came...we held each other and prayed and I told him about your story...we cried and we knew we could do this...
On July 11 2012, at 6:43 pm, I gave birth to a beautiful baby girl.  She is the love of my life, my favorite surprise.  I look at her and can't believe I ever thought the things I did, I cannot believe I had so much self doubt - she was more than meant to be here.
 
Not long after, I started going to Grace's Rochester campus.  I do not know why, I just said one day "lets go there".  It was a sunny Aug day, after service when my kids excitedly went to play on Rachel's Playground... I stood in front of her picture smiling because of all I knew.. after all, I have never even seen your face..

Then, more amazingly, a guy at the playground stood by me, he reached out and touch my daughter's hand and said "Aww a little baby girl"... I did not know this man...weeks later reading your blog I soon realized that was your husband Matt.  I couldn't believe it...I have been faithfully touched by your family, you angel in heaven and your strength, because of that I have my daughter... I hope you understand what this means to me, it may seem pale it comparison to your journey, but you have helped me..without ever knowing each other, so thank you Stacy, thank you Matt, and thank you Rachel.
Sincerely,
A Mama of 5 Beautiful & Alive Children.

I read this and cried the whole way home.  I was passing the church and decided to stop in and visit Rachel at her playground.  I don't usually do this, but I had to stop.  The kids & I drew a heart in the snow as I told them about a little girl who is alive because of Rachel's story and how God has used me & her - and THEM - to reach all over the world.  I looked up and just hoped Rachel could see what I was trying to send to her... Thank you, pretty girl.  You are so special and still changing the world.  From my heart to yours, Mama loves you.


And I just knew... there is no stopping for me.  It's not God's will for my life.  He continues to confirm that over and over again that He is not done with her - no matter how much I doubt.  And I was reminded that just because things are hard, does not mean they are not God's will.  He calls us to difficult things all the time so I cannot make decisions on what He wants me to do by the ease in which I can do it.

As we were stepping in the snow to draw the heart, Des asked if they would get something special if they did a good job... I told her "Not for drawing a heart, but if you serve God with all your heart, you might have a few extra jewels on your crown in heaven."

And I just pictured my sweet Rachel... her crown must be so beautiful. 

I was telling my sister tonight that when I think of heaven, I tend to think that we will be so in awe when we get there, that we will fall to our knees and be speechless.  And I cried as I told her that Rachel is a piece of heaven in my life... every time I am able to see something God has done through her, I am overwhelmed with joy, thankfulness, awe....and I am glad that I don't see it all at once because I honestly do not think I could emotionally or physically handle what would happen to me if I knew all of the ways my little girl has changed the world in one moment.... I think I would fall to my knees, speechless....  And I pretty much do each and every time I am blessed to hear another story.  I had no idea this heart wrenching trial would ever turn into something so amazing.  I am so thankful... so very thankful... and no words can really express how proud I am to be her mother... how humbling it is to hear these stories... how amazing it is to be a part of such an amazing legacy.   I am always left on my knees...crying... and speechless.
 

Tuesday, January 15, 2013

Complicated Ultrasound

As I walked into the hospital this morning, I had a minor anxiety attack.  I felt my chest get tight and my eyes welled up with tears.  Not out of fear of this baby dying, although that thought was there... but just having to walk into that hospital again. 

I walked in at 10:15 am, went up the stairs and within minutes of checking in, we were called in. 

I remembered how at Rachel's ultrasound, we bumped into a friend of my Aunt's who told us of her daughter just having her healthy baby.  These memories are so engraved in my mind that I could see her standing in that very place almost 3 years later. 

We stopped to sign the insurance paper - and I remembered requesting the tech I wanted on August 4, 2010....and my biggest worry being what sex the baby was.  My heart just wished my problems were still that small.

We walked towards the waiting area outside radiology and I made jokes about getting an ice cream afterwards to break the tension.  Matt said I could have two.  One for me and one for baby.

We sat down in the waiting area that I have not sat in since that day.  The last time we had a scan, they didn't make us wait there.  We sat there for all of 4 minutes... just long enough for me to be in tears remembering the 15 minutes that completely changed my life forever.  The 15 minutes that stole my ignorant bliss.  The 15 minutes that still rips apart my heart all these days and months and years later.  I remembered as we walked from the room saying "I don't care what's wrong with her, I just don't want her to die" and I heard the scream in my mind "Not my baby girl, Matt, I want to keep her!"

They called my name.

"What's wrong?" she asked me as I tried to sniff in my running nose.  "Nothing" I said.  I'm tired of looking like the crazy woman who keeps having babies even though I know how dangerous that is for people like me....  I'm tired of explaining.  Tired of people not getting it.  Not getting me.  So I just said "Nothing" and got on the table.  It was easier.

Within seconds of her putting the wand on me, I saw the nice round head.  It's crazy looking back that I couldn't see how obvious it was that Rachel's wasn't there... but we have gotten much better at reading them.  We've only sat through dozens of them.... I said "I see a round head!" and she said "Yes you do".  The entire scan took just a few minutes.  And it ended at 10:27 (the time Rachel was born) with the exact words I said I needed in my post last night...

"Everything looks good". 

She gave me one picture and I walked down the hall staring at it... just like I did with Rachel's... and all my other babies.... except Rachel's was the only one that they didn't give me the usual profile photos.  I left there with a pic of her hand and her feet and I knew it was her head that was to worry about.  I just didn't know it was going to kill her.  I was hoping for anything but death.

I had my doctors appointment after and realized half way through it that Matt didn't buy me those ice creams... and the irony of me being able to think of anything else but my baby struck me.... am I seriously able to think at all, never mind about ice cream right now?  Is this what it's like to feel 'normal'?  To just have a 'routine' ultrasound?  Ice cream?  Really?  Not funerals.  Not shattered dreams.  Not second opinions.  Ice cream.  Wow.

My appointment went well... and I left with a bottle they were giving out for new babies as samples.  I walked to my car and thought of the item in my hand.... this is a much different thing to be carrying than the box of cheap tissues they gave me to bring with me on August 4th.  Is it crazy that this baby bottle makes me miss Rachel even more?  Does it make sense that every 'good' or 'normal' experience after her makes me hate the reality of what I lost that day?  Long before she ever even died?

I called my mom, who was babysitting just like on Rachel's diagnosis day, and told her the baby looked good.  I hung up and cried remembering how hard it was to dial the phone that day to tell her Rachel was going to die.  The complete despair as I tried to find the words to tell Desirae that her sister was not staying.  I envisioned walking into my house this time with good news and got a lump in my throat.  I have to say that one of the biggest blessings in having a healthy baby is that my children do not need to lose another sibling.  Watching them experience this type of loss so young in life feels so wrong... and they have done it with such grace and beauty and I believe they will be better for it, but I don't want them to EVER have to deal with this again.  More so than not wanting it for me, I don't want it for them.

I had asked the tech (who I was not all that fond of)  if my due date had changed and she quickly replied "We wouldn't change the date".  Obviously, she has no idea what we've been through as far as the number of scans we've had and how many times dates have changed on us... or that the last u/s changed my date by 2 weeks, but it's not that odd of a question.  I went to the van and took a pic of baby's scan to put on facebook and I noticed that the due date had in fact changed.  It said EDC 8/4/2013.  The anniversary of Rachel's diagnosis day. 

I swear, my little girl is all over this pregnancy.  This didn't happen with Asa... it's constant this time.  The doctor thought I was scared because of this, but I had to explain that I am encouraged by it.  She feels closer... and part of this.  And I love that.  The doctor said we would leave the due date 8/3/13 because the earlier scans are more accurate. 

I typed in my due date into a calculator on line to see how many weeks & days I am and it said:

"If your due date is 8/3/13, your 1st trimester started on 10/27 (her birth time) and you ovulated on 11/10 (the time she went home).  200 days left to go!"

Ironically, none of that *should be* right because my cycle started on 10/16 (anniversary of the day we had her 'Celebration of Life' when I was pregnant with her) but apparently I ovulated "late" - and right on time for 'her numbers' to show up over and over and over again.  And since I still remember each of my kids' due dates right along with their birth dates, I'm kinda glad that this baby's due date is not the same as Rachel's diagnosis day.  The two events hold such polar opposite emotions in my heart that it doesn't seem right for them to share a date. 

But apparently baby is measuring a day big, which assures me that (s)he is growing good!  Thank You Lord. 

Baby was dancing like her big sister and waved a couple of times at us.  We're in love.

And I couldn't help but notice this 43 on ^ the bottom.... ♥



Monday, January 14, 2013

The Life Inside

Another emotional worship yesterday.  The song that got my heart about jumping from my chest has these lyrics...

Higher than the mountains that I face
Stronger than the power of the grave
constant in the trial and the change

One thing remains

Your love never fails
It never gives up
It never runs out on me

Because on and on and on and on it goes
It overwhelmes and satisfies my soul
And I'll never, ever, have to be afraid

One thing remains

In death
In life
I'm confident and covered by the Power of Your great love

My dept is paid
There's nothing that can separate
My heart from Your great love
 
(One Thing Remains - Jesus Culture)
 
 
I talked after church to my friend Sue and found myself in tears as I talked about how I have been walked out on by so many people in my life. (from my childhood until now)  We only have 2 people all together in our families - my mom and sister - who are consistently here for us, for the big and small things, and who love us unselfishly, unconditionally and without judgement.  Through the loss of Rachel, our family and friends have dwindled even more.  We've been left behind and written off over and over.  Some unintentionally because they don't know how to handle us and some intentionally because they aren't happy with how we've handled ourselves. And some relationships still sort of exist, but will never be the same.  It's been one loss after another.  But the Only One who has been a solid, firm, constant Source of Love in my life is God.  And that Love was made clearer and more beautiful as I've wept over Rachel....unlike so many of my earthly relationships that were not able to love me through this darkness, God did - and still does.  He stayed by me at whatever distance I needed and was waiting with open arms whenever I decided I needed to be closer.  He hasn't moved on from me.  He Remains.

This morning on the way to work, the song played again on the radio and I found myself just as lost in the beauty of His faithfulness as I did on Sunday morning. And in tears again.
 
I had been reading in 2 Corinthians out of Matt's bible at breakfast. It says:  God has also put his seal on us and given us his Spirit in our hearts as a guarantee.
 
I looked at the footnotes and it talks about what a 'guarantee' is.... that it is something you are given that promises the remaining payment in full at a later time.  (I'm totally paraphrasing cause I don't have his bible here with me, he brought it with him - it said it much better than I can) But of course, my mind wanders to how many times I have said "there is no guarantee" when talking about babies and children.  The part I would not have gotten had I not seen his notes, is this.... The "guarantee" in this verse is that He will bring us to heaven at a later time.  The Spirit is what we are given that confirms that promise is ours.  Proof that we belong to Him and will live with Him in heaven.  It's our guarantee.  The only true guarantee in life.
 
So, as I drove to work and listened to the lyrics again about my God Who is "constant in the trial and the change" and with my ultrasound being tomorrow where I will go see if my baby has a head.... the only word that kept coming to my mind is Life.  There is a life inside me....my baby....who comes with no guarantee.  And the is a Life inside me....my Jesus....Who does come with a guarantee.  And I can't imagine facing ANY of these past few years - or anything I have ahead - without Him or not having the promise of eternity in heaven.
 
I'm so thankful that my faith was proven genuine through each moment that I have had to choose to run away or run into His arms.  When I've had to decide if I was going to blame Him or allow Him to comfort me and use me.  And I know that isn't of me... it's all Him... all His Spirit in me... promising me eternity.... guaranteeing me Life.  Being everything I need in the exact moment I need it so that I can bring glory to Him and do His work.

As the song played this morning, I thought back to the days when I could play music on my blog and wished I still could. I knew this post was coming and wanted to play that song for you. Then I got back and there was a message for me that said she had gone to my blog and the music was playing!  So, I guess it's back!!  I was so excited.... and I opened it to see what song was at the beginning since I changed it so often.  It was "I will carry you".....

I fell into tears again.... because I've realized something this week.  When I see other status updates about being excited to get ultrasounds, I get irritated.  And when I schedule my own, I want to puke.  I always thought it was because I'm afraid - that I hate that this isn't as simple for me as it can be for others.... but I don't think that's it completely.  I really feel like everything is ok with this baby, but what happens to me when I walk into an ultrasound is I re-live the entire day of Rachel's diagnosis.  It all floods back and it hurts like it's happening now.  And so that song coming back on the day before my 'big' ultrasound... the one 'normal' people don't even need at 12 weeks....made me feel like I was pregnant with her all over again.  I hate it and miss it at the same time.  I can't listen to "I will carry you" (it was the only song on my blog for a while) without thinking of those first couple of months... the pain, the fear, the sadness, the hurt.... the unbelievable beauty and closeness of God.

And so I couldn't change the song.  I tried, but I couldn't.  I needed to leave Rachel's song... although as I write that, I realize that I loved her in the same way Jesus loves me and I pray that she felt the way I refused to give up on her too.  I pray that she knew that she could count on me, my love, and that not even death could separate her heart from my love for her..... and so maybe this IS one of Rachel's songs too.  She has many in my heart, all reminding me of different times along this journey and the many different emotions I have felt along the way.  (And I'm just hearing the song after "I will carry you".... if you're reading by email, you should really go to my actual blog and listen to these lyrics... it's unreal the timing of the songs coming back on and the order in which they did!)

Her life inside me didn't come with a guarantee like the Holy Spirit's does.... but it certainly gave me a new hope and new understanding of that Life.  Eternal Life. 

Please pray for me tomorrow.  My ultrasound is at 10:15, but I don't get the results until my appointment at 11:00....although I will most likely have no problem reading the screen myself, it will feel good to hear the official "Everything looks good".  I never thought I'd EVER have to wonder if my baby had a head....  my, how life has changed.

Here's the video, I recommend listening to it as loud as you can with your eyes closed....and keep tissues nearby :)


 

Sunday, January 13, 2013

Solar Powered Heart

 
I've been super busy trying to pull together a bedroom makeover for Des for her 10th bday.... and with the bleeding thing and being so tired this week, I got to Friday and still had a TON left to do.  In her room - and our house was TRASHED.  I'm not talking a little messy, I'm talking gross.  I had promised her I'd be done her room by her party on Saturday - and I refuse to hold a party with that kind of grime...

So, I did what my Mama's heart had no choice but to do.... I made a decision to skip my visit with Rachel on Friday so I could work for Des....

I cleaned, I painted, I shopped.  And at the end of the night, we were pretty much ready.  We moved her from our bed, where she went to sleep, back into her beautifully decorated room just before midnight.... and when she opened her eyes on Saturday morning, she saw the finished results. ♥   (Minus the curtains and desk that we are waiting on to come in) :(   

I do work good under pressure :)  Photos coming soon....

Like any day when I attempt to skip my visit, it got to be dark and as the sun started to set, the urge to get to her also came upon me.  I stood in my kitchen, knowing it was what needed to be done, but fighting the temptation to feel guilty.  I know she doesn't care, but to me, it's a loyalty thing.  I do what I do for her - for me - so that I know I am doing what I said I would do.  Am I making sense?  Hard to explain without people feeling like they need to release me of the obligation I put on myself.  But believe me when I say it's not a bad thing for me.  It makes me feel like I can still care for her regularly and for me, that's healing.  Maybe someday I won't need that... but it's my heart and so I don't question it, I just do it.  For me, that's easier than trying to convince myself that moving past my weekly visits is better or healthier or whatever.  The reality of her death is what makes me so certain of the reality of a future in heaven.  More than I ever was before her - more than I was before my Fridays in a cemetery.  I sit there and I think of eternity.... and how certain a promise that is... and even when I cry, I am so thankful for that promise.

Back before it snowed, I bought new solar lights for her grave.  I bought a set of 4, and I made 2 matching wreaths.  I put a set there, and I put a set here.  I also got another set of solar Christmas lights, like the ones on her tree, that I put on the wreath here.  My purpose was so I could look out my kitchen window to where her bench is in the nice weather and see what the lights look like where she is.  I've been severely let down by this because the lanterns I bought, have not worked.  The first set I bought, I had to return because they were all cracked - so it wasn't much of a surprise that the second set didn't work... they are probably cheaply made. One of the two at her grave we saw come on once on her birthday.  Matt was supposed to get them all out and go return them... and then it snowed.  We got so much snow, they were covered... and I was mad we wasted money on these things we now get to keep - that don't work!

On top of that, the Christmas lights stopped working too because the solar panel was now under 16 inches of snow.  I told my friend on Friday that I really wanted to get to her grave and take down her tree because the lights weren't working anymore and it was sad for me.  They haven't worked her or at her grave since we got this snow weeks ago.

Well, Friday night, as the sun set... and I was starting to feel guilty about not going...I was writing my shopping list and I looked out my kitchen window.  My face immediately lit up with a big smile....

Matt walked in from work just as I noticed them.  They were lit for the FIRST time since we put them in the ground before her birthday!  And the Christmas lights were shining for the first time since it snowed!  I said "Look at this!"  and he immediately asked "How are those working?"  I just smiled like a kid at Christmas.... He said "Cause it's Friday, that's why." and walked off....  and I stood there thinking... we all know these crazy things happen.  It's not just me anymore!  My kids, and even Matt who is a hard sell on anything that sounds touchy feely... we see these things happen and it's impossible to deny they are real... and straight from heaven.  It happens because it's Friday and that's her day and she is still alive!!  That's why.  It's just the facts.  I don't know if Rachel is capable of anything like this from heaven.  I tend to believe it's God who does these things to encourage my hurting heart.  But either way, it's proof that He is real, that heaven is real, and that she is there with Him.  It's proof that HE CARES about me.  That He hasn't forgotten me.  That He knows the special things that her & I share... daisies, dandelions, hearts, rainbows and 43's and that He uses them (or allows her to) to remind me that eternity is coming... that our goodbye is temporary.

To me though, I heard something a little deeper.... I heard her say "It's okay you didn't make it Mama, I still shine."  And I heard Him say "My daughter, do you really think you need the SUN when you have the SON.... I can light up any dark night... I'm with her even when you can't be!"

I took a picture and looked at it... I suppose it's not a coincidence that the lights look like they are heart shaped in the photo?  They certainly aren't shaped that way on the string or in the lantern! No photoshop here! Just God and my girl  :)  I love them both so much.... I'm so thankful for how He powers my heart to keep going with His light.  I'd be lost in this darkness without Him.
the lanterns stand a little more than a foot tall, but are still pretty covered in snow.

Happy Friday, my sweet girl... the day you went home.... so bittersweet. 

Thank You Lord for this light.  Thank You for the confirmation that I was where I needed to be, and for meeting me here when I couldn't get there.  Thank You for speaking my language.  Thank You for taking care of her....I'm temped to say 'for me' but really, I got to take care of her 'for YOU' for a little while.  Thank you for that 9 months and 43 minutes and for all the ways you allow me to still share her now as I continue to carry her with me.  Thank You that I got to hold her.  Thank You that I can forever hold her in my heart and for making Yourself so real to me when I need it most. Thank You for being in the details.  Thank You.




Tuesday, January 8, 2013

Life Continues On....

.....and we have a heartbeat!  163.  The same as Rachel's was the first time I heard hers on a doppler.  It took a minute to get it,  I had my eyes squeezed shut and the moment I heard it, I looked at the doctor for confirmation that it was baby's... she nodded and smiled... and I cried.  When Matt said "163!", my mind went immediately back to the words I wrote in my pregnancy journal when I was pregnant with Rachel....  "Finally heard the heartbeat... 163.  Strong!  Praise God!"

And her heart was so strong..... if only that was enough.

On top of good baby news, I had a conversation I was not expecting with the doctor.  She is the one I saw for my pregnancy with Samuel and I started with her with Rachel.  On Rachel's diagnosis day, I saw another doctor, who I had never been fond of, because she had time available right after the ultrasound.  After I got the diagnosis with that lady, it just seemed to fall into place that I continued with her.... and that was a mistake because she was not on my side and it was obvious.  Some of the things she said were horribly insensitive and judgemental. 

So anyway, the other doctor was who I saw today and she said she had read much of my blog and wanted to talk to us.  She said that she had had some opinions prior to Rachel that after reading my blog and learning more about my position on things, she looks at things differently.  She wanted to apologize because she felt like they had let us down with Rachel - and to make sure that we feel like we can have open communication about things with her during this pregnancy.  She said that as a doctor, she sees her job as being an educator and so she will give us all options and not assume she knows our stance on things, but doesn't want us to be upset with her for doing so.  I told her it's not being given options that bothers me or offends me, it's what they do with it if we don't want to do what they think we should.  She seems genuine when she says that if we decide to do or not do anything, regardless of her personal opinion on it, she will support us.  She said she wanted me to tell her if anything came up that made us uncomfortable... so I told her that the other day I had said I didn't want the Cystic Fibrosis testing, but they did it anyway.  Within a half hour of returning home, I received a phone call from the other doctor apologizing for that. 

She offered me an ultrasound, but after hearing Little E's heartbeat, I didn't feel the need for that... I have one in a week so it seemed like it was unnecessary and she thought that made sense. 

I had a long list of things I needed to do today.  I had planned to kick start it with some light exercise after my review and then get things checked off when I got home.  I ditched exercising after I saw the blood and my list went to the wayside.  I feel like I got absolutely nothing done... but the truth is that while I waited for my appointment, I played with my kids and read a bunch to them...watched them run in circles and giggle.... even did a little bit of school.... had pizza and conversation with my mom after we got back (she babysat so Matt could go with me) and then talked to a friend on the phone for a while.  I had a bit of closure to my pain from the treatment at my doctor's office.... and heard my baby's heartbeat for the first time.  And it just happened to say "Rachel".  A Strong 163, Praise God!

(and when I just looked, the Prayer Request I posted earlier, has 163 hits) ♥  Love you girl.

So thankful that while my list had to stop and my day was thrown into an upheaval, life continues on.... one beat of that tiny heart at a time. 

Prayer Request

The past two nights I've felt a lot better.  I've stayed up later, functioned better and been less sick and less tired.  Most people would just be thankful that the first trimester torture was coming to an end, but in my world, it threw up a red flag... this isn't how it usually goes... unless they are going to die.  And I said to Matt last night "I hope everything is okay, I can't help but think it means the baby is dead."

This morning, I went in for my review at work.  I was waiting in the hallway for my boss and decided I'd go to the bathroom real quick.  And when I did, I discovered that I am bleeding.

As I washed my hands, I looked at my reflection in the mirror and said "It's okay".  I felt my blood rush to my face and fought the tears as I pulled myself from the bathroom to go to my review.

I was fine until I was driving home.  The tears came briefly and I wondered if I'm going to have to say goodbye again.  And if so, how this will change my life.  What will I do with all this love for my little E if I never get to hold him/her? 

I'm cramping mildly, not too much and have an appointment at 1:45 to get a rhogam shot (When rh negative people bleed they need this so the body doesn't try to fight against the baby) and to try to listen for a heartbeat.  Please pray.  I'm feeling okay, but I'm not usually an 'ignore it' kind of person and I want nothing more right now than to just ignore this and pretend it isn't happening.  I almost don't want to know..... I liked how I felt this morning when I woke up and hate that tomorrow could feel so much different.   Does anyone else get tired of having so little control?  I trust God....but I don't understand Him some times.....

Sunday, January 6, 2013

Favored

I'm not sure if I've ever talked too much about this before....  but soon after I announced I was pregnant with Rachel (long before I knew she was a girl or going to die) around 8-9 other of my friends or girls in my circle at church also announced they were expecting.

And so soon after Rachel's diagnosis, I heard a ton of "it's a boy" or "it's a girl"...  and even worse... after her death, I watched one after another give birth - and keep - their healthy babies with nice round heads.  Even harder than that was listening to the complaints over no sleep, acid reflux, being bit while nursing, or my favorite - that they didn't get the gender they wanted.

I watched family after family stand up in church and show their new baby to our congregation, while my birth was completely ignored - except for to have a funeral.  I watched as they each did their baby dedications.  I watched as they covered up to nurse them or had to go downstairs because they were crying.  I heard the new cries, saw all the smiles and listened to many 'congratulations' that I never heard. 

And then I got pregnant with Asa... and while I had to defend my 'right' to still be sad over Rachel even though I was blessed with another baby again and constantly had people judging me... either for risking another Rachel or getting pregnant too soon or not 'seeing the blessing God had given me in this new life' or whatever the judgement might have been for that day -  the one thing I had was solitude in my pregnancy.  Because all the other girls who are still having babies around me were busy with their new babies who were alive and still nursing.  I feared many things while pregnant with Asa, including him dying for no reason at birth, but I never had to fear that I would have to be bombarded with other healthy babies and their mothers right after I said goodbye while my arms and heart were still bleeding to hold my own baby.

So here I am, 2 years after Rachel... and where do I find myself?  Pregnant.... and apparently it's been a 'good age difference' for many others because they are starting to announce pregnancies all around me. 

I wasn't scared of this.  I did just fine after Rachel.  It hurt like crazy, but somehow God gave me the grace to be genuinely happy for each person who carried a new baby home.  Somehow I might shed tears, but I was able to rejoice with them.  It was a blessing to my heart and I'm so thankful for that.  Not because it's nice to do for them, but because God did that for me.  It would have hurt so much more to be bitter and sad.  Babies are a blessing and a gift from the Lord.  I hold tight to that truth even when mine die and others get to keep theirs.

But about 4 weeks after I found out I was pregnant, I had someone tell me that they were pregnant and that they were nervous that they hadn't been on folic acid.  She said she looked it up and saw that she still has a week before the neural tube closes (wrong.) and was going to get vitamins on the way home so she could make sure her baby didn't have anything wrong with its brain.

And it all started. 

Not only was I horribly sad that the first thought on someone's mind when they got 2 pink lines was to make sure a Rachel wouldn't happen to them... but I was totally offended that she thought there was something she could do to make sure it didn't happen to her - which also means she thought I somehow failed and that's why my baby is in the ground and hers won't be.  She's also the same person who came here while I was carrying Rachel and told me I didn't have enough faith if I was buying Rachel a casket and planning her funeral because that wasn't believing God could heal her.... My baby already didn't have a head and I was preparing and was told it wasn't a faith filled thing to do.  I guess getting out and buying folic acid before it's 'too late' is having all sorts of faith that God is in control??

And so maybe it's just my pride... but all of a sudden, it became clear to me that some people think it's my fault.  I never thought that before.  I know ultimately that they don't think they think this.  I understand that the mind can be tricky... but really, think about it... if they can find the reason it happened to me... it makes it avoidable for them.  And if they know the reason, they can have control.  And if they know the reason, they can assure themselves that it won't happen because they did xyz.  And pretty soon, they are taking every ounce of credit for their healthy babies that only God deserves. 

Just for the record, they have been studying anencephaly for over 25 years and have found no conclusive answer as to why it happens.  Not even folic acid, although they think it contributes, they don't KNOW it does.  And when I got Rachel's diagnosis, I asked them to test my folic acid (my reason was so that I would know where I started out and be able to 'make sure' it was high enough the next time to 'make sure' it didn't happen again!) and they said to me "We don't usually do that".  Well, if you don't test folic acid levels in moms who have anenecphalic babies, how do you know that has anything to do with it??  So after arguing with them, they tested mine and it was great.  Perfect even.  I had been on my prenatals for over 4 years at that point, so that would make sense.  My folic acid level had nothing to do with Rachel dying.  And you getting your vitamins, eating well, exercising or whatever else you do to do it all 'just right' will have nothing to do with you giving birth to a baby with a head - or even a healthy, thriving baby.  I did all that with her too.  It was my 'healthiest' pregnancy I've ever had - on the outside.

This pregnancy has been less worrisome than Asa's so far.  I still have moments, but they don't dominate like last time.  That's awesome, but this time I'm dealing with something I didn't at all last time.  Or not that I remember anyway - maybe I did and my heart was still too focused on Rachel to care much?  But this time, as each new pregnancy gets announced, I hear this stupid comment about getting her vitamins before it's too late and I think to myself  "I have babies that die and these people don't and soon I will have to watch them all give birth to healthy babies... and take credit for the blessing of a nice round head... and I will be finding room on my grave stone for this baby's name and listening to everyone talk about how they are doing everything 'just right' and that's why they have a healthy baby who sleeps through the night".    And why does nobody see that for the ugly pride it is?

Maybe nobody considers this, especially after so much time has gone by, but does anyone stop to think that all these 2 year olds running around are a constant reminder to me of what I'm missing?  Does anyone stop to think that I don't picture Rachel as a little baby, but as my toddler who twirls around in her dresses and talks with a cute raspy voice like all my others have?  That it's not the baby clothes that break my heart these days, but the 2T dresses and size 7 cute boots?  Does anyone understand that it didn't stop for me after they came home with these alive children?  Nope.  Most never thought of it again after the first showing of their new babies.  Some not even then.  And they certainly aren't considering that while they are thinking about adding to their families because it's been the perfect time span, I'm just hoping for a head.  Just a round head. 

I have no idea if this baby inside of me that I'm falling deeply in love with more each day has a head.  And sadly I know it's possible, beyond anything I can do 'right', to not be given what I always thought as an automatic.  A head.  Or a heart that can beat strongly.  Or any other vital organ.  Or to live through birth.  Or to not die shortly after from something else beyond my control.  We take it all for granted you guys.  And it CAN happen to you.  And while I hope and pray it doesn't, I'd be lying if I didn't admit that at times I wish I wasn't the only one around me who knew (and truly believed) there is nothing I (or they) could have done differently.  God certainly knocked me off my 'good mother's pride' block when I got Rachel's ultrasound.  And then again when I fought for a c-section that didn't add much time, if any, to her life.  I found out the hard way that I don't have the control I liked to believe I did.  I wish He could do it to others without them having to actually bury a child.  I had hoped Rachel would have done that for people.  I never expected that some would just be examining me to figure out how they would do it differently and ensure their babies had heads - or googling how to make sure they didn't get a Rachel at the sight of two pink lines.

That just plain hurts. 

And I discovered, it's not all pregnant people I want to avoid... it's the ones who are full of false pride and think they are capable of something I'm not.... a baby with a head.  The ones who think if it was them, Rachel would be alive because my body failed her and theirs wouldn't have.  The ones who think they are beyond burying a child of their own.  The problem is that most of them don't know that this is them.  They don't see their hearts clearly or honestly.  And so I struggle to want to talk about this baby with anyone because I don't know who thinks what and the reality of my new realization of what people apparently think about this has done a job on my heart.

But maybe I'm just jealous.  I've been called that too.  Maybe it's just jealousy and envy as I've been warned.  Perhaps deep down, these people's pride is no bigger than mine and my pride is just hurt that I couldn't keep that 'I do everything right and so therefore I have healthy babies' status.  Maybe I'm just jealous that they get something I don't.  Or envious that they can still be just plain excited at the new expectation of an addition to their family.  Maybe I'm just jealous that my life is never going to be that simple again.  Maybe I need to just pray more for my envy - that I won't want their babies...

Please.  I do not want their babies.  I don't want their false sense of control and I certainly don't want to go back to the days before Rachel when I was that clueless and that insensitive and that careless with my words.  Good theory though. 

All I want is a healthy baby.  I want all babies to be healthy and for no mother to know the loss of their child.  I want an end to the effects of sin in this world.  I want heaven.  I want Jesus to come back and take us all with Him.  I want my family to believe in Him so they can all go with me.

In the meantime, I will take my painful, uncertain and powerless life with all my babies here and in heaven and I will love it for what it is.... a life that is led, controlled, and upheld by a God Who is good, loving and completely aware of my suffering.  A God Who will never leave me, forsake me or not make beauty out of my ashes.  And I guess I will just assume that God chose me for a reason to carry and love Rachel... and it wasn't because He loved me less.  It wasn't because He made my body in a way that would fail her.  I'd risk saying it might be the opposite.  The bible says that Mary was chosen and favored.  And when I think of Rachel and how I got to be such a huge part of her legacy and the amazing ways God used her life and death.... I feel favored.  I do. 

So while everyone else looks at me and her and they dread it happening to them....or while they wait for the confirmation that this baby has a head in fear and avoiding the thought of a new baby at all.  I feel sorry for that outlook.  I feel sorry for them.  Because this has been the hardest, most beautiful, and undeniably life changing - for the better - trial I have ever had the blessing to endure.  I would never want to be who I was before her.  Before knowing I had no control.  Before watching her die in my arms.  Ever. 

I'm thankful for this journey.  I'm thankful that I know only God can do this.  I'm thankful for the pain.  The fear.  The lonliness.  I'm thankful that I know like nobody else the way God can carry me through such a hard, long, dark valley.  I'm thankful to have seen Him so real, so true, so faithful... and in so many unexected places.  I'm thankful that I know the peace that you can only know in a room where your baby dies in your arms and it's okay.   I'm thankful for the questions, the doubts, the anger that all brought me closesr to Him as He gently reassured me of His presence and love through it all and patiently waited for me to return to His heart, while never letting me go further than I could handle.  I'm thankful that when I hold this baby and bring him home, I will take absolutely no credit.  That when he cries in the night and my sleep is disrupted, I will know it's a blessing.  That when I get puke on my new shirt, poop under my fingernails, or leak breastmilk all over myself in public... that I will know that it's a priviledge... and I will hold him tighter, love him deeper, appreciate him more - than I EVER could have before her... than I ever could have if I still thought I did it all right.  I'm thankful that God saw me fit to endure this lot.  I'm thankful for His favor.

I love you sweet girl.  Mama will be home soon. 

And as I finished this post, Asa climbed in my lap and I hugged him... I glanced over and saw the softly falling snow outside... just like the day you were born and I just knew... you are here - and now... Fernando Orgega just came on... "I will praise Him still"... the song we sang at your birthday.  Thank you God for sending me these confirmations - all at the same time!   I can't wait to see you again pretty girl...

"For the Lord our God is strong to save... from the arms of death, from the deepest grave - and He gave us life in His perfect will and by His good grace, I will praise Him still."

I can't even take credit for how I can praise Him... for how I can appreciate this journey... it's all Him.  He does this for me... for my good and HIS glory.  Thank You Lord.

Friday, January 4, 2013

Suicide Letter

3am has me again. 

I posted a status on facebook yesterday that I had heard a fellow anencephalic baby's mother took her own life.  I did not know her, but it threw me for a loop.  Because I know her pain.

I spent a lot of time in the car yesterday with Des (her 10th bday and we were looking for new things for her bedroom since she is officially 'too big for a castle') and the songs about God and how faithful He is and how He can pull us through anything had me in tears. 

Why couldn't she see Him?  Or why didn't He reveal himself more?

So then last night before bed, I looked at the comments I had received and most of them were short and sad - but I also saw a few rolling around on my page and on other pages that said things that I need to address.  Because quite clearly, people don't understand.

I'm not claiming that it should make sense.  Especially not to someone who has never lost a child - and I don't care what else kind of loss you've had... not the time to tell me you understand loss.  I can GUARANTEE you that I UNDERSTAND loss and did BEFORE Rachel.  It is just not the same and I say this with absolutely no intention of sounding harsh or uncaring.  I would not want to bury any of my family, especially not my husband, but your children are not, EVER, supposed to go before you.

On top of this - giving birth to a severely deformed baby, you just carried in your womb, is traumatic.  Never in my life did I know such a thing could happen and holding my girl with such a large piece of her body missing and her brain stem revealed was - there's no other word - traumatic.  The effects of that do not ever disappear, no matter how much I love her, how beautiful her life was, how undying my devotion. 

I went to this girls blog and her facebook page and I was devastated by how much I relate to her... to how much like me she sounded.... and the stark cold fact that it could have been me.   And like anything else, when something hits close to home (meaning you could picture it happening to you and have empathy over how that might feel)  it hurts.  Read this post.  I cried when I read about how she was on medication and felt like a crazy person... and how her doctor wanted her to go on anti depressants and she was willing to try.  And the last any of the people I know who knew her had heard... she was going to get help.  And now she is dead.

So here it is people....  DON'T TELL PEOPLE TO 'Get Help'!  It doesn't freaking exist.  The only true help comes from the Lord.  And honestly as I sat here these past 24 hours and thought about this, I hate that He didn't help her...  I hate that she couldn't see past her pain.  I hate that her 6 year old son and great husband have to live without her. 

Let me explode some myths for you.... she was not a negative person.  I've looked at her blog and her facebook page and she had hard days, but they were always surrounded by hope and looking to God.  She didn't bottle up her feeling either, she was open about her struggles, with her friends, her doctors and the world.  She had support.  Her husband and her son and her family... and THOUSANDS of people on line who were following her story.  Her last post on her blog was about how she was going to start the new year off with hope and wasn't going to let this get the best of her. 

And in the wake of this tragedy, people say things like "Why couldn't she see that she had a child here who needed her?"  "Why didn't she get the help she needed"  and my favorite one... "if you ever get to that point, get help!"

UM, if I EVER?  Please, people, I have been there over and over and over.  And it's not because I don't look to God.  It's not because I don't have hope.  It's not because I don't see the many blessings in my children here and it's not because I don't have support.  It's not because I lost perspective and it's not because I bottle up my feelings or don't get out enough.

It's because my daughter is dead.  And when you child dies - unlike any other loss - and something you COULD NEVER come CLOSE to understanding if you have not lost a CHILD (for me this was not the case with my miscarriage, but I know some struggle with that too) - even if you have empathy.... you want to die with them - or better yet, instead of them.  It's not about not liking life.  It's not about being unfaithful.  It's not about perspective.  And when you say those things to someone hurting so bad, YOU ADD TO IT.  You make them want to die MORE.  Telling someone to get help and have a nice day is bullshit.  There IS NO help!

I tried to get 'help' - you want to know what happened?  I had my first counselor who didn't understand grief say (a week after I put my baby in the ground and was still healing from my c-section) "You will always be someone who lost a child, but eventually you will have to get beyond it and learn how to live again"... I left there in tears and fought the urge to open the van door and jump the whole way home.  I didn't WANT to learn how to live like this! 

Then I switched to a counselor who understood grief.. meaning she was TRAINED BY A BOOK in it... and she called another girl at my church (who I was hurt by and talked about there) that she apparently knew and felt guilty for agreeing with me about and TOLD HER what I had said that she had done that hurt me.  It was awesome.  I totally should have turned that witch in.  I only didn't for fear of what else of my private life she was going to blab around to everyone if I upset her.  Oh, yeah, that was helpful.  Then I stopped talking to everyone for a couple of months because NOTHING felt safe.  So then I went to my doctor... and my next doctor... and my kids doctor... and they all said "you need help, let me give you some pills".  And when I said I didn't want pills, they all said that was the only solution.

Well, I have experience with THAT too.  Any time I have been on anti depressants in my life I have wanted to sleep more, be around ppl less and have had more suicidal thoughts than any other time.  So that 'solution' would have landed me right next to Rachel in the ground. 

After Rachel, I left he hospital with 2 different pain killers, Adivan and the highest dose of Ambien they could give me.  After about 6 weeks - and discovering an email I had sent someone I barely knew that said this:

" I would kill myself but my sister in law would be too happy about that"

Yes, that's right, my sister in law wanting me to fall off the face of the planet because she thought she was grieving just as hard as me and I needed to support her too - and was mad that I didn't want to get together for Christmas right after my baby died - actually saved my life. 

But I didn't remember writing it.  Because PILLS are BAD.  They are not the solution.  I looked the next day at the pamphlet and I knew I needed to get off the stuff.  Prescription or not.  I was scared to death to try to live without them (especially to try to sleep without them)  because I had been convinced by everyone around me that it was my only solution to this unbearable pain.  These doctors throw pills at you and don't even follow up to see if you're still alive.  Maybe she DID get 'help'!  Maybe she did see the blessings in her life and wanted to stay here for them too!  Maybe she went to counseling and got meds.  PEOPLE, hear me when I say NONE of that helps!  It doesn't take away the pain.  It just clouds your mind more and makes reality that much further away.  But you cannot escape reality.  I'm not claiming medication can never help anyone, so please don't feel the need to email me with how you disagree.  If you are on meds, and they help you, great for you.  I'm not debating that.  What I am saying is STOP ACTING LIKE THEY ARE THE CURE ALL and if us moms would just get us some, we might not want to die.  We will want to die anyway! 

This is not my cry for help and I'm not saying I am going to kill myself.   Along this journey, I have had only a couple times where I have shared those thoughts on my blog.  I share a ton of very deep and personal feelings.  But anyone knows if you say those words, you are in trouble... you will have judgement from every side, be completely misunderstood, be given all sorts of 'get help, get meds, get counseling' and whatever else someone can say that insinuates that SOMEONE ELSE can help you, not them.  And the couple of times I have, I got just that.  People everywhere passing the buck and sending emails telling me how they want me to look at life differently... but no real help.  No real love.  No real friendship.

One girl came here, sat down and told me that because "she had done so much for me"  (she was helping me with Rachel's first race - please ppl, don't throw what you've done for someone's dead baby in their faces and think they will react nicely) "She expected me to get some help to pay her back".  OK, so on the surface, I can see... a concerned friend who is afraid I'm going to kill myself and she will have that guilt on her shoulders if she didn't say anything.  But when I responded and said that I was not going to get 'help', that I had tried that, and that I was fine and that she really didn't know me (we had just met that very MONTH) and that my husband would tell me if I needed help, she threw another thing in my face... "You said your husband doesn't listen to you"

UM, whose husbands are good listeners?  And is that going to make me feel better?  My daughter is dead and my husband is distant.  Thanks for the reminder.  Then we ended up in an email fight where she told me that "You only care about yourself and Rachel, you've made that clear"  and THEN went to our mutual friends and had them calling me all concerned that I wasn't doing what I needed to do to see how good I had it here on earth.  I spent the next couple of weeks defending my faith and trying to prove to people I wasn't unstable so nobody would try to take my kids away -  And now we are no longer friends because when I blogged very vaguely about that, SHE CONTACTED A FREAKING LAWYER AND HAD THEM WRITE ME A SCARE LETTER!! 

Who wants to HELP me??  She sent me that letter on the one year anniversary of Rachel's diagnosis.  She didn't want to help me.  She had me nowhere on her mind.  It was all about HER feeling like she had covered herself if I slit my wrists.

Then last summer, I got an email from another distant friend.  One who I had been friends with, but disappeared right after Rachel died just like everyone else.  Her 'concern' was that I was missing out on my life because I was too focused on Rachel and that I needed to be told that this isn't the end for Rachel.. that it's not the end for us and that I needed to be more positive.

Whatever.... bury your child and tell me what you think.  I think I've been about as positive as one woman can be - but nobody hears that stuff.  People only hear the hard stuff and make judgements accordingly.  Actually, at that time, she wrote that after reading a post that I was angry in and that post had over 500 hits in 24 hours.  The ones around it that were upbeat and had a nice sounding title, had like 24 or 90 hits.  People don't want to take the time to follow my ENTIRE journey and then judge me for having bad days. 

But here is the real problem.... WHY IN THE WORLD IS ANYONE JUDGING ANYONE FOR HAVING A HARD TIME??  Don't claim you just want to help if you are saying things like "you need to go get help"  If you want to help, HELP. 

Let me clear this up for you....  If someone says to me that my perspective is all wrong, that I need medication and a counselor... this is what I hear "You daughter's life is ugly and I have no time or way to help you, you are beyond what regular friends can do, so contact a professional". 

The moment my daughter's life becomes ugly - when I have done everything in my power to make it beautiful, I want to die.  My purpose has been smashed to pieces and I have failed her. 

If you really want to HELP your grieving friends... if you REALLY want to encourage and uplift them... here is what you do.  It's simple...

You hug them.
You send them cards and remember anniversaries.
You SHOW up.
You don't avoid them.
Tell them they are a GREAT mom to their dead children AND living children!
You make them a meal, help clean their house, take the kids so they can cry if they need to.
You SAY THEIR BABY'S NAME and say it OFTEN.
You include them on the Christmas card... it's not that hard and we've said it over and over and over... don't forget our baby!  Don't make us feel like we're the only one remembering because it's uncomfortable for you. Or like we are freaks for including a dead baby in our lives. Step out of your comfort zone and BE THERE.  In REAL and practical ways that say "I know this sucks and I'm not leaving you alone in it.  I CAN HELP YOU!"  Because you can.  YOU can help more than any bottle of pills, text booked counselor, or doctor.  And you don't need to have lost a baby to help.  Some of my best comforters are NOT baby loss mothers!  Baby loss mothers often need their OWN help.  They can't be relied on to support everyone else!  You need to stop trying to shoo the problem to someone else and see that YOU ARE CALLED TO IT.
And for heaven's sake, PLEASE don't try to tell the mother that just buried or burned her baby that YOU are struggling just as much with the loss.  Nothing will ruin your relationship faster.  You can sympathize, empathize, even have your own grief around it - and many do, especially grandparents and aunts & uncles... but if you think for a second that you feel the SAME, you are completely useless in helping that mom at all.  You cannot take that away from them.  It is their loss, not YOURS.  Their baby, not YOURS.  You have your own loss and it's different.  Do not make the baby's death about YOU. 
Talk to them in YOUR own words.  Do NOT throw bible verses about happy and hope and being disciplined with your thoughts at them.  Yes, the bible is the ultimate Source of comfort, but moms need to find that on their own.  Giving a verse reference is better, if you must because they can look it up or not and it helps get them into the Word, but don't use the bible as a way to distance yourself from the uncomfortable nature of not knowing what to say.  It's okay to say LESS and to sit quietly.  It's okay to say "I'm so sorry" or "I wish I had words, but I don't".   Most attempts at comforting me with verses have come across in a condescending way.  Like they have the answer and I apparently just need to read more. 
And on that note, I should add that just because YOU DON'T MEAN ANYTHING BY IT does not mean it's okay.  Your intentions ARE NOT what matters, your effects are.  If you hurt them, you hurt them and PLEASE if you hurt them, JUST SAY YOU ARE SORRY.  It's not that hard and goes a long way in the healing of the hurt.  Don't make excuses, justifications or try to say they are just too sensitive.  Remember that while YOU are trying your best... THEY ARE TOO.  Some of my biggest frustrations have come from people acting like I know how to do this and they don't.  I'VE NEVER DONE THIS BEFORE.  I don't know what to do either!  I don't know what to say or how to react.  You are not the only one completely uncomfortable with a baby dying here!  Can you think about ME for a second?  And why is that somehow not an acceptable thing to request?  I can't tell you how many times I've been accused of being self focused.  What?!  I did not curl up on my couch and cry over my dead baby.  I have done everything I can to HELP others through this and when I look like I need help, I'm told to call someone else.....I'm not the self focused one.

I also want to say that just because we know that only God truly has control over life and death, that does not mean we can wash our hands of it.  We are His hands and feet.  We are to comfort with the comfort we recieve.  We are to be there.  And I know we can't save everyone.  I know we ultimately don't have any control over what people do.  I know if someone kills themselves, it's not our fault.  But I don't want to use that as an excuse or an 'out' to just hope for the best and send them on their way while we go about our own lives.  The darkness of depression DOES NOT need to make sense to you in order for you to be a friend to someone battling it.

So there, maybe I can go back to sleep now, but I doubt it.  I just couldn't get this poor girl off my mind.  And I know there are others like her.  And I know I'm not beyond it just because it's been 2 years.  I know that 'But for the grace of God, go I' and while I'm thankful for His grace keeping me alive so that nobody can say that I gave up on my living children... I don't understand why He didn't do it for her - and I don't believe for a second that she gave up on her living child.  She was too serious a mama to give up on him. 

Don't wait for the person next to you to say they are feeling hopeless to reach out.  Most people who actually kill themselves seem perfectly fine right before they do.  You will not be able to send an email on a hard day and fix it.  You may clear your conscience if they end up dead, but don't fool yourself.  There is much more to a relationship then pointing out when someone has the wrong focus.  You will help nobody with that attitude.  Be there.  Be a friend.  Don't judge.  Don't assume.  Don't think that only anniversaries are hard or that after so much time, the pain dwindles.  It might, but that doesn't mean a low day can't come out of nowhere.  And if it does, will that person truly know they aren't alone?  Will they have a phone number to dial and know that they won't regret it?  And don't wait till tomorrow.  Sometimes tomorrow never comes.