Life with it all hanging out

For the most part I live my life on my sleeve. It just is what it is. For me it is freeing to not have to hide any feelings and you either accept that or not. I know people who believe in perception. That what you put out there is how you will be 'perceived' like if your kids are never dirty then they are perfect. I for one have never met a perfect toddler but then again I happen to own one who has more spunk and silly then words can describe. She is pretty close to perfect in my eyes but that lady she scared in target when she laid kicking and screaming on the floor...pretty sure she didn't think so! They hide behind perfection and perception and aren't very happy or totally stressed about maintaining that image. I'll tell you right now...i don't have the energy.

And fortunately or unfortunately that isn't me. I have family that don't agree with it and friends who don't either but I don't care about how you perceive me. And that sounds callus and mean but I am happy with me. So I put it all out there and live and I get angry and mad and hurt because of it. I also get a lot of joy and reading comments like " wow that's my story" or " you are so not alone" that is what makes me okay with sharing my life in print. Because honestly once it is 'out there' written down there is no taking it back. You have to be accountable for your life. There's no hiding when you put it in a blog.

I attended a woman's conference tonight it was exactly what I needed two days ago. Seriously. I am all about listening to God but his timing on this one wasn't so great...or was it? I guess only time will tell.

At any rate I made a 'date' with a dear friend to attend a month or so ago and I tried desperately to weasel out of it all day. I was feeling awful about my own behavior and how I clearly chose to not obey God and do what I know is right and the last place I wanted to go was church. I mean really there is no worse place in the world to be when you are ashamed of yourself. Seriously.

So after some pestering I went. I knew I needed to be in that place. To be forgiven. To move on. And somehow as the clocked clicked faster to 6 I knew I needed it. So i went.

And ashamed...wooooh..not even close. It was amazing. 2,000 women trying to juggle life and be better. I entered saddened by my own behavior and left excited for the opportunity to learn from it.

In a mob of 2,000 I was 1. As Pastor Debbie spoke to us, the masses of women melted into the background, she was speaking to me about exactly the situation I was ashamed of and how to make it better. To learn. To be better. Exactly my goal for 2010. To be a better Jenny.

The lesson was about grace and totally relates back to my check list number 1. Just when I threw in the towel because it was what I wanted to do and it definitely the easy way out. Nope not going to happen now. While I totally respect the other person it was my behavior I was ashamed about. While I'll never apologize for my emotions about the whole thing I can be sorry about how I handled it all. Because honestly, a blog, regardless of how I feel...well now it is out there. And since that is me...it is okay...I am okay with it...but I learned.

The lesson I took most to heart today was humility and saying your wrong when your wrong. The second thing I hope to start practicing more fervently is to listen long and speak slowly.

Or think before you speak.
Which my mom has told me a gazillion times but even at my age it is hard to admit when she is right:) I mean do moms ever really know anything:)

Since I live with it all out there I act a lot before I think...not such a wise choice ehh.

So while I will never give up my authenticity and hide behind perception or perfection, I will think first and speak second. I will always be true to me because that is honestly just how I am and always have been.

Don't ask me what I think of your hair because I don't hide things well. I will put it as tactfully as I can but I won't lie to make you feel better.

I don't say things I don't mean. So if I say I'll do it then I will.

I don't do things I am not passionate about. I don't invest my time in things that don't matter to me. Any time I spend investing in a friendship/relationship/project is time away from my kids and that is too valuable to give away.

I don't set out to write or speak with intentions to hurt others. Life happens simultaneously and while we may have had a fun day together chances are something else is brewing deep down. For instance I had a wonderful playdate with two great woman but the day before lost my best friend. I wrote a blog and without asking me they assumed it was about them...sadly no...but cest le vie.

I live with my life out there and I make no apologies for that.

Proverbs 10:19 When words are many, transgression is not lacking,
but whoever restrains his lips is prudent.

I live my life out there for all to see but I also make a choice to learn from what happens by being out there....let the adventure continue!

It doesn't always end badly

So there is officially light at the end of this pregnancy tunnel. I say that but in fact this hasn't been the long drawn out pregnancy that has haunted my past. It has been, knock on wood, easy. Who would have guessed I would be typing in my third trimester without a threat or promise of bed rest. Without blood pressure rising to crazy levels or on my 30 billionth ultrasound to just 'make sure all is well'. I think I've always condemned myself to a scary pregnancy and this one has shown me not all are bad.
Having Bella did a lot to heal my mental wounds after losing Annelise. Her pregnancy showed me that not all pregnancies end badly. That sometimes you get lucky and actually end up with a living breathing baby. How sordid that I really did believe that I would never actually end up with a breathing child? I spent every waking moment of Bella's pregnancy on baited breath, just waiting to hear the dreaded news and pitying look of 'you lost another one'. Then one day this beautiful baby came out not making a sound, the only sound I heard was Rick saying "My God not again" and Dr. R calming him saying "wait I haven't woken her up yet" and suddenly a scream. The most beautiful noise I have ever heard and I have heard every day since. That moment, that brief minute that i was numb to the world, having just run a marathon of birth and thinking I'd lost again, only to find out I had in fact hit the lottery that moment taught me that not every troubled pregnancy ends badly.

Which leads us to Pierce and how we've managed to get through to the third trimester in the blink of an eye. I remind my self everyday it doesn't always end badly, Bella is proof of that. He has taught me that not every pregnancy has to be full of drama and threat of loss. Even with the bleeding and early worries this pregnancy has been so different.

There are so many days I pray to know what a 'normal' healthy pregnancy feels like. For that feeling the first time you find out your pregnant and you don't know that miscarriage or stillbirth is so prevalent. An innocence that was stolen from me our very first pregnancy and then again with each subsequent loss. I learned then that not every woman can go unscathed through the journey of birth. That most will experience loss, that some will get lucky and it happen so early they didn't even realize it.
I envy those women.
Those who don't have to plan every aspect of conception.
Those who know nothing of charts and ovulation.
Those who have the freedom to make an 'oops baby'.
Those who can go through 9 months without a care in the world.
Those who do not know they've lost a baby because it happened so early.
Those who don't know what it feels like to hurt and mourn dreams for a child that existed for only a few weeks/months.
Those who don't live in fear every time they get a positive pregnancy test.
Those whose pregnancies go just as they planned with no need for ultrasounds to check on a 'growth' or aminos to check out your unborn child's chromosomes.
Those who will never have to contemplate termination because there just might be something so wrong your child will never be compatible with life.

It is those women I am jealous of.
I want that excitement and that innocence.
Pierce is as close as I'll ever get.

So as a sail through this 'normal' pregnancy I am still haunted by the things that could happen, that have happened, to me. Yet at the same time there is a certain level of excitement of knowing that just because it has happened before doesn't mean it will happen again. So now with only weeks left until his arrival I am excited. Excited and ready to start to prepare for him. Ready to meet my little man and that nagging voice in the back of my head is fading, this time I am as close to one of those women I envy as I will ever be.

This time I know I will get to meet him. I will have a living breathing son and I will love him more than I will never know I was capable of. This time it is different.

This one is a little heavy...

My relationship with Oprah is definitely love/hate at best. You see i disagree with Oprah on so many things, in particular her view on infertility and how she picked Martha Stewart's daughter to be 'the face of infertility'. However, there are some days when I am touched to the point of tears, yesterday was one of those days.

For me the story really begins a few weeks ago when Pop was in ICU. It was late, like 2am, and I was sitting with Pop updating the blog. I had been feverishly typing for awhile when the nurse came in and asked what I was doing. We started chatting about the blog, how it started, losing Annelise and just about life. At the end of our conversation she passed me a paper with a note and web address, telling me I would love the story. She was right.

I still have her note. It says "Be strong, your dad knows you love him" and then had a link to this video:

CLICK HERE

I never got around to watching the whole thing, i just couldn't deal with much more at the time, but the story and the name stuck around in my brain and I was caught totally off guard when I heard Oprah discussing it yesterday. So I watched the video and needless to say the nurse was right, I love their story. I get what they felt, how they felt, why they chose to live his life they way they did. I get it. Yesterday, Ginny the mom said " I can be sad when he is gone" and those are the exact words I never could get out but sums up exactly how we felt.

Many of you don't know the whole story behind Annelise, and until yesterday, we never planned on telling anyone. See about 14 weeks into the pregnancy she was diagnosed with Trisomy 18, the same thing this little boy had. There are no words to describe how we felt knowing she wouldn't be the healthy little girl we dreamed of. After MANY other tests we were lucky to change our diagnoses. It didn't get much better but it gave Annelise a chance at life where Trisomy 18 didn't. It turns out Annelise had Mosaic turner's syndrome with reversed and deleted chromosomes on the cells that did have both X's. Basically, she was a 1 and 100,000,000 child. There has never been another child who had those same problems that lived to be studied. Most die super early and escape pre-natal diagnoses. Annelise is in several medical journals and is hopefully helping doctors learn how to help other babies survive. The crazy thing about all this, is it wasn't her chromosomes that killed her. She was perfectly formed.She was beautiful and from the outside you would have never known her DNA was all jumbled up. She died of a 1 and a million cord accident. Seriously. There still isn't a day we go visit Dr. T where he doesn't shake his head and ask 'why'. Why could this little baby survive 1 and 100,000,000 odds but be the one to have a cord accident that could happen to anyone but honestly just doesn't?

The whole time we knew Annelise was sick we loved her. We loved her and to us she was perfect. When she died the most comforting words we heard came from Dr. R. She told us " you loved her enough". We did. We loved her. We loved her sick and we loved her well, we loved her enough to let her go.

There is the extremely selfish part of me that envy's Eliot's parents. They got 99 days. I am jealous. I will probably always be jealous. They got 99 days to love their boy. 99 days to talk to him, hold him, kiss him. They got 99 days.

We got 6 hours to hold our child. To look at her and soak every piece of her in before she was whisked away. She never breathed. We never even had the option of 99 days. I am still angry and still jealous. Emotions I am not proud to admit but they are there and I am mom who is still grieving the loss of her first born.



The death of Annelise changed us, you all know that, and honestly we are better for it. We love Bella differently then we ever could have before. That I can't explain, it isn't better, it is just different. The words the mom spoke " I'll be sad when he is gone" just explains the whole experience. 2 years later I finally have words on how we could love her enough. We loved her enough because we had to. We had to be happy and continue chasing the glimmer of hope that she gave us.

Eliot is a big brother. That family made the same choice we did, to hope and pray God would give us another child. To have the strength to not burden that baby with the 'what ifs' and expectations we had for Annelise. I could not be more grateful to have learned of this sweet families story. A story that mirrors our own but still took a different path. If their video touched you the way it touched me then please feel free to follow their journey at their blog...

http://thespectacularvernacular.blogspot.com/

His words are so much more eloquent than my own but if you want to know what it is like to lose a baby and have to move on then read his blog, he gets it, he says what my heart feels but can't manage to write down.

Remebering Annelise(2 posts today so keep reading)

As many of you know this is the week of the 2nd anniversary of our very own angel. Thank you all for the kind emails and thoughts that have come our way. This year is very different, mainly because it is hard to be sad when Bella brings us so much joy, joy we would not have without losing Annelise.
So while everyday we both think of our first little girl our hearts have healed so much, we have come so far from that day 2 years ago. There is still a long sappy post in me but i just don't have the strength to devote the proper attention to it right now...its coming though.. so be prepared.
We still want to honor her day though, so this year even though we are apart we will both be lighting her candle(on opposite sides of the world). If you'd like we would still love to have you do the same as last year. Light your candles in honor of Nana, snap a picture and send it our way. I cannot explain how nice it was to look at those pictures when I went through her stuff a month or so ago.
We miss and think of her everyday. I thought for sure it would be different by now but it is still so very real to us. Everyday we are reminded of what she was to us. A beautiful light. An angel for Bella. A gift. We are so proud to have known her, even for a short while. She was our daughter, our angel, our first princess.

and some seriousness to life....

So I think I am ready to start talking about some stuff. I know it is long overdue but none the less I am just now beginning to even think about a good majority of it. It has just now occurred to me that I have never recorded exactly what happened with my pregnancy with Annelise. I know i don't 'have' to but somehow I need it to be written down, for me, so I can move on. So here goes...

It was late November 2005 when my best friend S and I had a long talk about loss and how I was doing. I don't remember what all was said but i remember coming out of it thinking 'I can do this again'. ( We lost our first baby in July 2005) So we decided to try again and it happened really quickly. We celebrated New Year's with a smile and a positive pregnancy test in our back pocket! We didn't tell our families for quite a while but when we did they were, of course, very excited. I knew right away it was a baby girl. We named her Annelise and never looked back. In March I agreed to the AFP test not knowing what it had in store for me. Sadly, the test came back with a 1:10 chance of my baby having the fatal Trisomy 18. For whatever reason I was alone when I was called into the doctors office to hear the results. ( Neither of us can remember why Rick wasn't there. He was at every doctors appointment so this was rare) I still remember my first reaction as i was ushered back to Dr. R's office and sat in those huge mahogany chairs. Dr. R sat beside me and told me the tragic news and all i could say was " FU*K"! I cried and she held me, asked where Rick was, and then reached over and just called my mom. ( My mom's office is across the street and Dr. R knows the whole family) My mom and sister came running over and then they held us too. That day was so sad. I was immediately given an appointment with the high risk doctor ( Dr. T) and we were seen by him later that day. I had an ultra-sound that showed my beautiful baby was in fact the girl I believed she was. It also showed she had a cystic hygroma on her neck and something was definitely wrong. I immediately had the amniocentesis which was scary and hurt like crazy. It is a sensation I will never forget, a sudden, sharp electric shock through your hooha, wow! So now the wait began.

We opted to do the FISH test which is part of the amnio but the results only tested for 5 things, Trisomy 13, 18, 21, the X chromosome, and the Y chromosome. For whatever reason Annelise's test came back inconclusive which happens less than 1% of the time, lucky us. So they put a rush order on the rest of the amnio results and we waited. All I wanted was for her to be okay, i wanted that little girl more than i can explain, I still do. In that 10 day period I lost about 13 pounds. The stress was overwhelming. The results came back and it turns out Annelise did not have the fatal trisomy 18. However, we weren't out of the woods. She did have mosaic turner's syndrome. We were devastated but still hopeful. We had a chance, our little girl had a 2% chance of living. I knew she could do it. I just knew we were going to hold my Nana and things would be okay.
I was wrong very wrong. Annelise was a lot more special than we even knew. It turns out she didn't just have turner's. She had a gene translocation, depletion of one part of a gene, and an addition of a gene on top of the turners. She was a special baby. Because of the type of gene issues she had we were offered free testing on our genes and hers. We took the offer and we both were tested and have very pretty pictures of our gene makeup. Just what I always wanted. So we were given the choice at selective reduction or we could try and beat the odds. We couldn't just reduce the little girl we worked so hard for so we kept on going. We told our families that Annelise Hope was probably not going to make it but still prepared for her arrival, we wanted, needed, loved this little girl too much to give up hope.

Life went on for awhile and we had sonograms, biophysical profiles, and were monitored very closely by both Dr. R and Dr. T for the remaining weeks. We bought baby bedding, found a pediatrician who had experience with turner's babies, found an endocrinologist, researched the neonatal team that was picked for her delivery by our doctors, and prepared to have a baby.

I wasn't feeling so hot so on my next visit to Dr. R , I just didn't feel good. My blood pressure was up and I was sent strait to the hospital for an overnight stay. They believed it was the beginning of pre-eclampsia but it turns out it is just my bodies reaction to being pregnant. My system is not equipped to carry a baby, I suck at being pregnant. So after a few days I was released on bed rest and sent home to keep my legs crossed for another few weeks. That weekend was Rick's brothers wedding and he was the best man. Reluctantly, he left me in the care of my mom and headed out of town for the wedding. I still just didn't feel good.

I can't explain it but i knew something was wrong. I had a weird sensation I still can't explain. I said goodbye to my baby on Thursday July 20 but just kept my feelings to myself. I was trying to make it through the wedding so i wouldn't be responsible for ruining the wedding of Rick's only brother. Friday came and went and I laid around crying, my parents just figured it was pregnancy stuff and left me to myself. On Saturday my mom had figured something wasn't right and she took me home to get the doppler. I just wanted to know myself for sure before calling Rick. Sure enough I didn't find the heartbeat and my mom took me strait to the hospital. I waited to call Rick until the doctor said she had passed away. I remember Dr. T's tears and him telling us she was an angel. All I could say was " But she has a name" like that was going to change things. Then I screamed and I can't remember the moment i stopped screaming but it seems I've been screaming for the last year. My mom was with me and my sister was on the way. She came into the room and I remember yelling at them to just go away. I didn't want to be with anyone but they stayed. Thank God they stayed. My mom and sister held me and I called Rick. Telling my best friend his baby girl, his dream, had died was the hardest thing I think i'll ever have to do. At that point they wheeled me down to labor & delivery and the 'process' was started. I remember calling S and telling her Annelise was gone. All she said was NO and she asked what i wanted and if she should come. I said no and she came anyway. Thank God she came.
They started the induction process and went ahead and gave me both an epidural and the narcotics. I was numb both literally and figuratively and before I knew it my dad had made his way to the hospital and my whole family was with me. My mom, sister, dad and S helped the time pass as we waited for Rick. At this point I was okay. Not crying but just hanging out waiting for the 'process' to end. Strangely, our tear stained faces could still laugh and you could feel the love in the room. I've never felt so sad, lucky, grateful for the people in my life as I did that moment. After all, it wasn't but a few hours before I was yelling at them to leave me alone but they knew better and they all stayed. Rick made it to the hospital in about 3 hours for a 6 hour drive. I still wasn't ready to push so we all just slept.
Despite my best efforts Rick missed the wedding but luckily our brother in law fit in his tux so the best man position wasn't left unattended. We waited to tell all the family why Rick left so suddenly, but from what I hear, the parents knew as soon as they saw Rick had been replaced. Sadly, the wedding pictures are what suffered, and I for one can't even look at them.

At about 5:30 Sunday July 23 my epidural had completely worked itself out of my back. The first epidural took 3 tries and 2 different doctors to put in so I wasn't anxious for a second round. By this time Rick's family, except for the newly weds, had made the trip to the hospital and everyone was there. It turns out that not only is my body not equipped to carry a baby it is also not set up to have an epidural. Lovely. They tried to get the second one in but by that time I was ready to push. I sat there in tears because the pain was crazy, the doctor kept hitting a nerve,I was sitting on my babies head, and all I wanted was for the process to be over. I still have bruises from the multiple attempts at the epidural and pain if you just touch the spot it went in.

We asked the family to leave us and it was time to push. I pushed, drug free, for about 8 minutes and out popped my beautiful Annelise. She was perfect. She had no visible signs of turners other than she was tiny. So very tiny. Rick and I held our little girl for what seems like forever and just a second all at the same time. When we were ready they gave Annelise a bath and brought her back to us. For whatever reason S was thoughtful enough to stop by our house and get Annelise some of her own clothes. She was dressed in the very first outfit I bought when I found out I was pregnant. She also brought little pink socks and a murphy hat with a fuzzy
pink blanket. I just couldn't introduce my little girl to her family dressed in a hospital blanket.

We called the Chaplin and our families and she was baptized with all of us there. They each held Annelise and said their goodbyes. The hardest to watch was our dads. Rick's dad didn't handle it well and I am not sure he ever held her, but the image of my dad was enough to break my heart all over again. I think he wanted that little girl more than we did, if that is even possible.

I can honestly say my first instinct was to not see her but now I can't imagine not having those precious moments with my little girl. I would have never have gotten to see her quirky little toe, her curly blond hair, or how she really was the perfect mix of the two of us. When we had to let her go for the last time I think was when it really hit me. Somehow as I held her I was willing her to breathe. I couldn't take my eyes off her because I just knew if I did I would miss her breath and it wouldn't all just be a bad dream. It didn't seem real. We let her go and it was so hard. So very hard. Rick had to pry her out of my hands and I think that was probably the hardest thing he ever had to do. The day before I took his dream away and at that moment he was taking mine.
At that point all I wanted was sleep. Rick's family left and mine finally did too and it was just us. They moved us from L & D and put us on a different floor where we couldn't hear babies scream all night. We both slept in the twin size hospital bed for what seems like days. Neither of us showering or moving. It was our own haven with bad food and endless reruns of Jeopardy. Eventually they kicked us out.
We couldn't go home so we went to my parents house, but later in the day we knew we had to go home and get clothes so we sucked it up and went. Walking through the door was hard but someone ( our neighbors maybe?) had removed all traces of Annelise from the main areas so we didn't have to face it just yet. The nursery door was closed and her name removed from the door, just like that she was gone. We grabbed clothes and animals and left back for my parents house. We stayed there for a few days, holed up in my old bedroom, not coming out for much of anything.
On July 25 Rick and I had our ceremony for Nana. It was just the two of us and her and it was perfect. We got one extra chance to see our perfect little girl and say our goodbyes. As I kissed her nose one last time I asked her to watch over our future children and give us the hope, courage, and faith to do this all again. I left the room knowing I'd never see her again but that she would be with me always. Rick told her some things he thought she needed to know and that she'd always be our princess and that we loved her. We all loved her and we always would.
We left the funeral home with a peace I can't explain. Knowing it was not the end but the beginning of a new us, a new life, and a new outlook on the world. I know we knew things would change but i never thought we would change as much as we have.
We spent the next 5 days in Austin and we were surrounded by butterflies. Annelise was with us.
Eventually, we had to turn our phones back on and return to the world. Our friends and family were amazing. Our house was clean. Dinner made for months. Our house and my parents house looked like we bought a flower shop. We received cards and letters from people we hadn't heard from in years. We are still amazed at the overwhelming support we've received.

It has been almost a year and we still have visits from butterflies every once in a while. In the middle of winter, when either of us is having a bad day, on the day we found out we were having another baby. Annelise is always with us. It is still so hard but I know now that eventually things will be better. We have our days where we are still angry, sad, emotional, but now they are becoming fewer and farther between. We are growing and we are surviving and Annelise is watching over us.

Dr. R said something to us in the hospital I never quite understood until today. She said " This sucks, you'll never be okay, but one day you will realize you are better". She was right, it does suck, we aren't okay but we are better for just knowing Annelise. We've got our very own angel, our very own guardian to watch our family grow, and help us know we aren't alone in life, how much better could it get than that?