Monday, April 25, 2011

No Co-Pay Here

Do you remember a couple months back when I vaguely mentioned "my counselor who betrayed my trust"?
Well, just this week, I am realizing what a huge effect that had on me.  OK, so I didn't blog about it for the sake of being "good" but to be honest, after talking to a friend the other night and realizing how much it was still hurting me, I have officially decided that it is more important for me to heal from it than for me to hide her "mistake" (as she called it).  And since I am an outward processor...I'm sure you've picked up on that one!...  this is how I'm going to do it. 

Side note: this blog has been a life saver for me over these past 9 months - I don't think I would be where I am emotionally if it wasn't for all the baby loss Mamas that I have to talk to and the support I get from all of my readers.  Thank you!  And just having a place to do all my outward processing where I never have to wait for an awkward or hurtful response to my sometimes crazy feelings has been great as far as me not holding things in.  The last thing I want is to be still trying to work through this stuff 20 years from now.

That being said, when I first called the counselor - not because I thought I needed it but because the doctor was insisting I had depression (which I didn't) and a few people recommended her - I told her that I didn't think I needed a counselor.  She said "it would be good to have a safe place where you can talk about things"  I explained that I was not in any way a private person who has trouble talking about my feelings and I was not lacking support, but that there were some details of Rachel's birthday that I don't talk about in an attempt to protect her from peoples' judgment.  So I went.  I went 2 times. 

The second time I went, I told her about something hurtful that someone at church had said to me that week.  I said that I knew she didn't mean anything by it, but that her personality could just be abrasive.  She said "I know who you're talking about, It's ___ and she can be abrasive" (I had said her first name only) I honestly thought nothing of this.  I LOVE the girl who had hurt me and as not nice as that statement sounds (is), the focus of what I was saying really was that I knew she didn't mean anything by it, but that I was hurt.

I went in the third time and miss counselor tells me that she felt guilty after we met last and called the girl and told her that I was there and what had been said.  Yes, you heard me right... she CALLED HER AND TOLD HER.

I have also been accused of not being a trusting person... HMMM... can't imagine why.  I mean, minus that my entire childhood and early adulthood was filled with abandonment and disappointment from every man I ever knew,  but now I've got friends saying hurtful things while I grieve the loss of my baby and counselors doing what she called "just a small breech" and then claiming that this is normal behavior for a Christian community saying "in a secular community this wouldn't be acceptable, but in a Christian community, we all work together"... really?  If I wanted group counseling, I would have signed up for it.  But just for the record... It's not small and it's not normal.  And then she tried to tell me that it's the first time she had done it ("this never has happened before"), when she had, on 3 other occasions, done similar things to me; telling me personal information about others that she assumed I already knew.

So, I think blogging is much better than reporting her, how about you?  Although, I'll admit, I'm tempted.  Not only had I only told 2 people I was even going (not including this friend) and should be able to decide for myself who knows I'm going to counseling, but I should be able to talk about anything in counseling and not worry about it leaving the room, unless of course I was beating my kids.  Isn't that the law?  But hey, those laws don't apply to her.  And then she pulled the whole "will you forgive me" line... I'll call that the "God card".  I said yes but explained that I would not be coming back.  I told her that she said this would be a "safe place to talk about things" and it isn't. 

I really didn't tell anyone and pretty much just tried to forget about it, but what I have realized just this week is that this severely affected my relationships with everyone for the last couple months.  I'm just now starting to want to talk to people again.  If I had trust issues before, well... they just got worse.  I mean seriously, who can you trust??  The only One I've found so far is God.  I'm glad He's enough, but in my humanness, I want to be able to confide in and talk with others on a deeper level.  I want to be able to trust people too. And well, a counselor, I thought that was the reason you went there instead of invited Betty Lou out for coffee....

So, this leads me to the burden on my heart that I would love to talk to a counselor about in a "safe" and "confidential" environment, but actually think I might have better luck with the Internet cause at least I can decide what I want shared.... This is another one of those really hard things to write that I feel like I need to...

If you are carrying a baby with anencephaly right now, please do not let this scare you.  Rachel was the best and most amazing miracle that I have ever been blessed to be a part of and I would do it all over again, even knowing all the hard parts.  I don't say that cause it sounds good, I say it because it is true.  With every part of my being, I mean it.

That being said... I was trying to envision what it will be like to have this baby.  In my mind I was trying to convince myself that this baby will be ok and that it will be coming home with me.  (right now, I'm trying not to care if I sound weird)  As I thought about it, all I kept picturing was the moment that they took Rachel out of me and held her up for me to see. 

In the weeks and months leading up to her birth, I had fallen in love with her little face as I went to my weekly ultrasounds.  I had looked at many pictures of anencephalic babies and was familiar with the common characteristics that the babies had...but I always hoped that Rachel would look more like my other babies and less like an anencephalic baby.  And she did look like my other babies after I looked at her for a while and especially in her beautiful photos.  But the moment I first saw her, my initial reaction was not what I had hoped.  This is where I feel really bad....  I looked at her, took a deep breath and knew that she had every characteristic that I had feared.  My baby was very obviously never going to survive outside my womb and I didn't need a diagnosis from a doctor to tell me that when I looked at her.  There have been so many hard moments in this journey and that was one of them.  The video of her birth has been viewed by not one other person other than Matt & I and probably never will be.  My sister was there when she was born and other than that, nobody has seen her photos from right after birth.  To me, it's not her... it's her anencephaly. 

We had to take a picture of her head from the front and side for the Duke University Anencephaly Study we participated in and when I sent them over, I also sent a cute picture with her hat on because I needed them to see Rachel, not just her anencephaly.  They were VERY kind and replied back about her cute chubby cheeks and how they are following my blog.

And so here I am, trying to remember what it is like to give birth to a healthy baby and I can't.  It was in that moment that I realized that this has been a very traumatic experience for me.  Seeing my baby be born into this world - every other part of her body perfect, but without the top of her head, her eyes bulging and her ears bent in half was the deepest, most heart wrenching combination of grief and joy I have ever tried to balance.  And yet with God, I had peace.  Thank You, Jesus for that peace.

Minutes later, I was holding her and couldn't care less if she had her hat on... God held me in that time and helped me to live those 43 minutes to the fullest...  But oh man, the scar.

We went back to our room and I prepared her for the kids to meet her.  Our nurses, Kim and Michele were amazing (Thank you!!) and didn't appear at all uncomfortable helping us handle our precious baby who was no longer alive. (funny thing...I just accidentally wrote 'alice' there instead of 'alive'...)  but as the minutes passed, she got more and more blue.  I wanted to clean her up, especially her hair, but had a hard time cause I was nervous to be too rough with her.  I did my best, got her in her "love to twirl" outfit and we called in the kids. My family and our friends joined us after we got her dressed...  It was a very bittersweet day and my passion to make the most out of her life was what drove me in those hours... all the while, God's peace and love cradled me and protected my mind and heart.

Desirae would never admit it, but I saw the same thing happen to her... the initial reaction followed by shear unconditional love for her sister.  And God graced me with the ability to be able to tell them she was no longer with us - and  to be excited with my kids and smile with them about the cute little baby who left us too soon. 

Desirae has had her own journey with this as well... I've heard her conversations with other kids as they ask why her sister she explained that her head was missing.  I watched her face drop in fear when Rachel's hat fell off as she was holding her....and then watched her struggle with her strong desire to hold her again vs. her fear that her hat would fall off again.  She was so brave and full of so much love.  I've heard one of her friends shout out in the sanctuary at church "your baby was blue!" and we just smile and keep going... but it stings.  I will say that watching my sweet daughter at only 8 years old handle this in a better way than some adults in our lives makes me SO proud to be her mother.  She is one amazing little girl and I know that being Rachel's big sister was part of God's plan for her life.  I believe wholeheartedly that it was for the better....even though it hurts.

So there it is... I'm sure none of you actually thought that day was easy anyway, but I decided the day after she died that I was going to be very purposeful about what I shared because I knew that the details I concentrated on would be what stuck in my memory. (yes, I was planning for my elderly years!)  and I wanted to make sure that I remember the amazing love, joy, and peace that surrounded us that day.  And usually, that is what I remember.

But, I'm not sure how this is all going to feel when I give birth again.  I am definitely preparing myself for the fact that I will have some pretty tough emotions about Rachel that re-surface (if they ever fade before then).  It is funny how many people think that this baby will make me feel better... I could be wrong, but I'm pretty sure that is not correct.  I will be beside myself in joy if this baby is healthy and pink, but nothing... nobody... no baby could EVER make losing Rachel hurt less.  It won't speed it along. There is no cure for grief.  And as a matter of fact, I have a feeling that holding a new Aube baby will bring up a lot of the pain from what I missed with Rachel... and I think that is likely to continue through all the "firsts". 

And just for the record, you can call anyone you want and tell them about any of this... at least you didn't charge my insurance.


  1. Mmm, Stacy - so honest and so true! It's so hard - I know. HUGS!!

  2. Stacy, What a hard post for you huh? I can tell in your writing that some of that had tears, Happy ones and sad ones. I want you to know that as a mom of a baby who is about to turn one and a young married woman I look up to you as a role model. I hope to have half your strength in my lifetime! Sometimes I look at my baby in the "I cant take it anymore" mom moments....I am quickly reminded of you and Rachel.

    I had some rough moments the last month or so. Rachel was visited frequently!

    Still follow your blog and all I have to type is "t" in my address bar and pops up!

    Love always,
    Bethany <3

  3. Des sounds amazing!! She is an awesome big sister. I am seeing the same things in the little things my kids say about our 2 miscarriages (Oh how I wish I could have held them). hugs and prayers, Tienne

  4. This woman broke the law. It's a HIPAA violation. You have nothing to feel guilty about, and everything to be angry about. That was NOT ok.

  5. oh Stacy, I am so sorry! That is just horrible that she did that to you! I wish I could give you a big hug! And reading what you wrote about the first time you saw Rachel was so much how I felt also. Of course they are beautiful because they are our babies, but it is hard to see your baby missing the top of their head. And the part you wrote about Desirae made me cry so hard because it is so much how I feel about Anthony and we had the same hat falling off thing happen. Big hugs again!! I am always here with no judging and no copays and I hope someday we will meet in person. Sending love your way! <3

  6. As God has brought me to your blog, I've often wondered "what would I do?" In an odd way, through many different circumstances, I wonder if God is preparing my heart now, as a single woman, for a child with a terminal or life threatening condition. Obviously, I can only answer hypothetically as I have never walked the road. But this post made me realize that the only answer, ever, is life.

    Thank you so, so much for sharing. For being open. For allowing me to see your path, your pain, your healing, and to know, in some small way, beautiful Rachel.


  7. Stacy I appreciate what you have shared with all of us. I know you have found your way of beginning the healing process and along with that you have helped atleast one other person, speaking for myself. Since I started reading your blog I have realized how precious life is and in a way you have taught me not to take it for granted.

  8. It is very good to get all that hurt out now. I wasn't allowed to when my daughter died and actively grieved her for many years. I became severely depressed and still fight depression to this day. Just because you get your feelings out does not mean you are forgetting Rachel. You will always remember her and think of her as your little girl.
    As for the counselor, I am a very forgiving person, but that woman needs to be reported. If she did this to you, she will do it to others. Just because it is a Christian environment does not mean her code of ethics are altered. You can forgive her, but she needs to be reprimanded or quit counseling one. I have dealt with some awful counselors and wish I had had the courage to turn them in.
    Sending hugs and prayers...xoxo.

  9. That woman broke the law. She should have NEVER said anything to anyone about the conversations the two of you had. You have the right to be angry.
    I am praying for you and your family. I can't imagine the pain you have gone through in losing a child. You are doing amazing things to keep your babies memory alive....the playground you are building is GREAT! God is holding your precious baby girl, one day you shall meet again and oh the joys.
    Love reading your blog.

  10. Well, I find myself looking for the right words today and all that comes to mind is, Praise Jesus!

    I praise Him for our girls. I praise Him for saving you and me and I praise Him "In The Storm."

    Is it just me, or does it feel like the storm seems to end and then yet another raindrop hits my cheek and I think to myself, "nope far from over ~ not on this side of heaven, girl!"

    Huge Hugs!
    Love Ya!

  11. You are so right Stacey, the only truly trustworthy one is God, but also we should be able to confide in someone to share our human sorrow with. I'm glad that you are leaning on God, but too that this blog has been a healing hand for you. Keep being real! I know I appreciate it greatly! It shows us all that we are not alone! And hopefully all of us here are making you feel not alone!
    Lots of love, hugs and prayers coming your way!
    Carrie :)

  12. Your strength amazes me every day. While I have not had the experience, I do see what you mean about Rachel vs. her anecephaly, because I see it in the differences between you and the other mothers who have suffered this loss, and the photos of the medical studies or terminated anecephaly babies. Your love takes your children to the next level and tells everyone around you that your child deserves and will recieve every bit of respect she would have gotten had she been born completely healthy. And despite being so open and honest about your feelings, you are STILL protecting her.

    And sweet Desirae.. She is just like you; so sweet and strong, and filled with so much love and pride for Rachel. Without a doubt, this has molded her into a better person, and what a blessing this will be in her life.

    As for your "counselor". I know you want to do the best thing for your healing, but what she did was a major breach of HIPPA, and as a few others have said, she needs to be reported both for your sake, and the safety and security of any future patients she may have. I know this is just another burden grudgingly taken up, as if you don't already have SO much to deal with.. but it needs to be done :(

    Praying for extra strength, healing, and peace for you in the coming weeks as you get closer and closer to the building of Rachel's Ark!

  13. I'm sorry that your counselor did that to you. I actually think I get more out of writing on my blog than talking about my feelings. I'm not good at talking about it anyway.

    I remember giving birth to Lainey even though I have given birth to a living child before I couldn't remember well what it felt like and how much joy there was or how profound it was to give birth to a baby who was silent.

  14. I have felt the sting of being betrayed like that and I'm sorry that you had to experience that in any way. She had no right to do that. It does make us cautious in what information we choose to share and to whom as well.

    Grief becomes a part of us, and I do not like that people think that as time passes or if we have other children or living children that makes it any better. Our child is gone, nothing will change the ambiguous joy & pain that comes with it. *hugs* Thank you for sharing your story and Rachel's. I was so touched by your words.


We so appreciate your words of encouragement!
Thank you! ♥ The Aubes