It Piles On

So preliminary autopsy results show possible Potter's Syndrome. They also found blood clots in the placenta and possible distress on the umbilical cord.

What I'm looking at is that possibly my baby died from a fatal fetal polycystic kidney disease. It could be a fluke when the egg and sperm met or it could be genetic. My husband and I could be carriers. I have a gut feeling that I'm a carrier. There is a link to this genetic disease and something I was born with, something that happened to me when I formed in my mother's womb: Mullerian Defect. My doctor found that in my uterus back in 2009. It's blogged in here somewhere, I am sure. Anyways, while my kidneys are fine, my uterus developed abnormally, with a wall inside of it, almost dividing it in half. There are other types of defects that this presents as but this is the one I had. I could be asymptomatic or just a carrier. I have no idea. We have to wait for the final autopsy results so this was all speculation from the pathologist at this point.

Now what about the clotting? It's possible the baby had some kind of issue with clotting or that it's me who is predisposed to clotting issues, meaning I could develop a thrombosis or embolism at some point. There are several kinds of clotting disorders and one is autoimmune related. I will need specialized testing to figure it all out and from what I understand, there are false negatives to deal with too. I guess I could need blood thinners or something. I have no idea. My head hurts so bad from crying and from sinus headaches. I hope I am cleared for sinus surgery later this month, but we'll see how this blood clot shit plays out.

This is what I'm dealing with now, on top of losing my son. Do we carrier this kidney gene in our DNA somewhere? Is it in my daughter too? What the hell is with this clotting stuff? I feel like it never ends. I do want answers for why my baby died but I am so tired of hearing additional diagnoses, and then to think my body passed something bad on to my kids. My body, this piece of shit that's both good and bad, did this. It's overwhelming but I want definitive answers. I pray I get them.

First Dream

So I had my first "dead baby" dream last night. I was holding an infant, but couldn't see its face. I had it semi-wrapped in a blanket and I was just going about my business, like usual. I suddenly realized in my dream that the baby's feet were not wearing socks or shoes and that they were very cold. I became concerned, wondering how I could have brought my baby out not properly dressed. Then I noticed the feet were purplish and very, very cold. I couldn't warm them up. I woke up and moments later my daughter screamed. She too had a bad dream. I rushed in and soothed her until she was ready to go to sleep again. It took me a long time to fall asleep afterwards.

I read in some blogs and such that these dreams are common and I am sure I will have them for a lifetime. Bad moments like this follow you into your dreams. It's weird where and when a bad moment will strike. I was struggling on the elliptical today, watching one of my favorite war movies on the Ipad when a bad moment hit. There was a part where some Nazis were executed, pistol to the head. And it sickened me in a way it hadn't previously. Their deaths so quick and flippant. I thought, how many dead people have I see in my life? Well there was my grandma's funeral, my aunt's ex-husband's funeral and then the funeral of my grandmother-in-law, all open caskets. All were embalmed and they felt like a statue and looked like wax. But my son. My dead son. He was never warm to my touch, not waxy or stiff. His little body was limp in my arms and every time I shifted him around, his head would lop this way or that. So, so cold.

My dead son.

Unless you've been through it, you can't begin to understand. He was a sick baby, strong in my womb but unable to sustain life. That he died somewhere safe and warm is merciful. But the pain I feel at not having him here, having a post-pregnant body to look at in the mirror every day but no baby in the crib, is excruciating. I will never be the same person again because of this. No better, maybe no worse, but different. This is by far, the worst thing I have experienced, and if you know me, I've experienced enough to last a lifetime. Right now I am waiting and waiting for autopsy results. I have to know WHY. Tentative information points to a possible inherited gene, something for which we all must be tested. I need to get past this part and maybe I can have more closure.

I don't know what else to say right now. I hope the xanax kicks in soon. I feel like my heart could explode with all the emotions I feel. I don't want to feel anymore.

Hurt

Here it comes. The GRIEF. The staring into nothingness and the aching, painful feeling that something very important is missing. My baby is missing. My baby died about 6 days before scheduled delivery. My baby is gone.

After my mother died, I carried grief and pain with me for a long time. Almost 30 years, in fact. I just got to the point where I can think of her without feeling that heavy sadness. And then my baby dies and I never knew that there was emotional pain that could hurt so much. I don't know why he died. I do know there is much to get off my chest and it's not all going to be in this post. I can only deal with so much at a time.

The service was nice and brief. It went as well as it could. I tried to hold things together and succeeded, more or less. Now that all the family have left, I am left with the quiet, minus whatever output my toddler throws out. So the grief is rising to the surface and I am trying to let things run its course, but at the same time I am fighting it back because I don't want to feel. I want so badly to not feel anything but I know I have to. So I will deal with it, a little at a time.

This is the poem I wrote for my little baby, whose soul I am sure is safe in Heaven, secure with my mom.

To My Beloved Son

Dear beloved son, Sebastian, I wanted so much to meet you. To watch the unfolding of your magnificent spirit. To see you smile and hear your laughter. To watch you accomplish your dreams. But it was not meant to be in this world.

My heart aches and my spirit broken in pieces. Waves of anger meet in pools of black sorrow, Where I fear I will drown in my grief. Never have I known such soul-wrenching pain.

Why were you taken before your first sweet breath, Never given the chance to exist beyond my body? Small comfort lies in our belief that you are not alone. You are safe, my beloved, and free from pain and sorrows; Warm and happy in my mother's eternal embrace.

It is your survivors who must endure and live fully, in your honor. We will carry on with life, in laughter, tears and love, Taking no one and nothing for granted. Our hearts and spirits forever full of love for you, our beloved boy.

The Long and Winding Road

Sooooo it's been seven months since I last blogged. Not good, I realize that. Why did I stop? Oh yeah. It's been a helluva roller coaster. Some things get so bad, I can't even put thoughts to font. But I hope they get better soon. Because in about three weeks, I will have another furless creature to care for. Yep, we've spawned again, despite all my insistence there would never be another.

Instinct and hormones are extremely persuasive when it comes to reproduction. The urge to procreate is on par with insanity, I am convinced. However this round, things have not gone as smoothly. Things have been life changing and not all in a good way. I don't want to get into it though. The fucked up sequence of events has, believe it or not, pushed me into an even more emo/cynical/distrustful/hermit-like state of existence. Maybe some day I will come out of this and be less scary to strangers.

(PSSSSSST. There is a GIANT spider on our 12 foot tall ceilings and I can't stop glancing furtively up at it. I mean, the thing looks huge from down here. This does not bode well.)

So what's different about a second pregnancy? Well despite the fact it's been a fucked up ride, psychologically, it has been a lot harder. I believe part of that is age and part of that is the Toddler Tornado that zips throughout the house on a regular basis. She's a combination of sweet, fascinating, threatening, and hilarious sticky goodness. I love her to death but sometimes I want to invent some kind of breathable duct tape in order to stem the screams and shrieks emanating from her soul, often without warning. I can actually feel my ear drums cracking. Little kids can sure scream.

(Where the fuck is that spider?? I spaced out and I can't find him now. Show yourself, thine enemy! SHIT.)

So here are a few things about subsequent pregnancies I've learned in the last 36 weeks:

1. Hemorrhoids are so much worse. Seriously, if you can feel their presence, it's bad. I swear, it's like cherry tomatoes hanging off your ass.

2. You don't have a cute little belly this time. You start showing early and if you are "blessed" with certain genes, you will become a ginormous, angry, pregnant woman. I won't even measure myself around this time.

3. The smell of a poopy diaper can and will result in violent vomiting. If you are lucky and still don't have complete bladder control from your first pregnancy, then you can enjoy pissing yourself while projectile puking. Being a stay at home mom, I was often the only person home and those diapers fell onto me to change. Oh dear Christ. And my silly, happy little girl didn't understand why mommy was running out of the room, making strange and guttural sounds, during diaper changes.

I honestly can't think of any more nuggets/dingleberries of wisdom. I am so unbelievably tired and I won't get any sleep, ever, until all the kids move out. Or I die. Whichever comes first.

It's time to close this post. I promise to write more often during all the fabulous down time I'm about to have. HAHAHAHHAAAA. Anyways, pray for an early delivery please. I have tickets to Paul McCartney six days after my induction date and I plan on going even if I'm stoned on percocet and sitting on a doughnut cushion. Thanks for tuning in. Until next time...

(There he is, that mother fucker. I think I hear him laughing at me.)

Pretty and sick

Once in a while, my tired, Mommy/fibro brain allows a shaft of light inside my head long enough for me to form a few coherent and relevant thoughts. Spell-check helps too. I just read this article about feeling beautiful when you live with an autoimmune disease. Personally I have gone many days without a shower, without brushing my hair, without dressing in proper clothes, let alone not leaving the house. It's hard to have the energy to care about your looks. So I appreciated this article on that level alone.

But then I read through the comments and was surprised to see how many people bitched and griped, saying the article is superficial. Simply putting on lipstick doesn't transform your whole outlook or how you physically feel. Putting on a cute outfit doesn't mean diddly shit when you can't get out of bed, or take a shower, as I find myself going without on many occasions. I get that, I do. I go through waves of anger, acceptance, sloth and defiance. But I have to say that on days when I can't primp myself a little, putting on a little of my favorite perfume makes a difference in how I feel about myself in that moment. It's not perfect, but sometimes it's enough.

However, I do agree a lot of these articles make it sound like the deep psychological issues that accompany physical pain and limitations are easy to fix with just a quick swipe of lipstick or a snazzy sweater. Patients like us aren't looking to be coddled or pitied, but we don't want to be condescended either. Shit happens. My new normal is to always have pain or discomfort on any given day. Hell, I feel like shit at least a little bit all the time, so I didn't even realize I was running a fever from an infection this week. I just figured it was the changes from the rainy weather that so often wreak havoc on joints and sinuses. That's life. We either learn to make the efforts to look nice or we accept that yoga pants and tshirts are good enough for the day. Do your best, that's all you can do.

Tschus.

God sent me a turtle

I need to blog more frequently again, so all the intermittent posts aren't so tragic. Another death. Last weekend a friend was out riding her new motorcycle and crashed into a tree. She was my age, 36 years young.

Dianna was so many things: a friend, an animal rescuer and advocate, a gorgeous pinup, a project manager and all around wonderful person. This lady lived. She was always out at the rockabilly shows, always volunteering her time and energy to help pit bulls and other breeds. I don't know why it was her time to go, but I do know there is a huge hole in so many hearts because of her passing. Mine included.

Her death, and the death of my ex, at such a young age is fueling my paranoia about my own mortality. My mom died at 38 and as a kid I was convinced I wouldn't live to 40. Now I'm closing in on 37 and without realizing it, I am becoming more and more fearful of death. I feel like I have to love on my daughter a lot, like my mom did with me, because I could die any day. Now, I know that this is true for everyone. We all will die, someday. But for me, I felt like I could never see myself living to old age, some disease is bound to take me young. I am trying my best to not feel that way, but these passings have rattled me. I keep thinking I'm pissing my life away, taking it easy all day to try to prevent a flare. I feel like life is passing me by. I want people to come to my memorial service someday and say, "She had a zest for life. She did so much, was so happy and loved so many."

The day after I found out about Dianna's death, I took some time to walk the dogs by myself. I needed to be out in the grass and trees. I needed to be in nature. And while I was out, I came across a turtle who was trying to hide itself in our front bushes. We had heard earlier in the day kids gushing about a turtle they found. Well the poor guy must have escaped from the children. Gosh, he was cute. Right away I decided to take that little bugger out to the creek so he could go on living his life. I put him in a box and hopped in the car.

Parking near the drainage creek near our house, I trudged through the dry grass. The ground lined and cracked from drought. When I reached the creek, with box and turtle, I found it completely dry. And where water should have been, trash and detritus littered the area. So I left the car and set off through the grass, following the creek to see if there was some water, some where, dammed up away from the road. I'd seen beaver activity back there on previous walks so I thought it was a possibility. After not finding even a mud puddle, I finally decided to leave him near the creek bed and maybe rain would come soon. As I watched him crawl away from the box, I thought of Dianna. Of course, God would send me an animal to rescue when the pain and sadness of losing this amazing woman was slicing into my heart. All I could think was that God sent me a turtle to tell me it's ok. She's here with Me and she is happy and her love is shining down on all of us. And we should keep living, keep helping, keep rescuing. Because that's what she would want us to do with our lives.

And you know what? The very next day we had rain that didn't stop for a day and a half. See? The turtle is back in his habitat and now he has that water he needs to live. Funny how that all works out.

Thank you God, for the turtle, and for the time I had with my friend. God bless us and Dianna, I'll catch you on the flip side. Tschus.

A chapter closed

A couple of months ago my ex-husband passed away unexpectedly. There were rumors of suicide, accidental death and natural causes. I still do not really know what happened. What I do know is that he was very depressed the day of his death, and he had been drinking heavily.

I went through a gamut of emotions: anger, sadness, grief. I am mostly worried for my step-daughter. I don't want her to be in pain, but I know she is. How could she not be? Her dad was only 38, the same age my mother was when she passed. It's coincidences like this that confirm my beliefs that my marriage to him was never meant to be, but we were brought together so that I could be in his daughter's life. If I could, I would move her in this house right now but she needs to be where she is now. And her mother loves her very much, of that I am sure.

As part of my struggle to come to terms with my feelings in this and what happened, I wanted to know who he had been after our divorce. It appeared to me that he became a whole different person. No longer a country western type of guy, he now had numerous facial piercings, a mohawk and dyed hair. He was into punk music and roller derby. In fact, it seems his roller derby friends became a family to him. I reached out to a couple of them, hoping someone would talk to me about his last year but I was ignored. Had he mentioned my name to them and said such awful things that no one wanted anything to do with me? Or had they just simply not wanted to respond to anyone? I have no idea. I still feel some weird need to understand who he was, but it is fading. I just see all these references to how he was a great father and a gentle soul, etc. I can't help but think back on my 7.5 years with him and remember he started out that way, but as his depression worsened, he became volatile, angry, sullen and withdrawn. His interpersonal relationships were damaged at every job he had too. I remember explosive arguments, with objects violently thrown around and walls hit. And in the years after our split, he had trouble with the law and relinquished custody of his child. And this is Dr. Awesomesauce, as he was known? I never could completely forgive him for all of that. I had nightmares for years after I left. Certainly no one but he and I, and his daughter, knew how bad it could get. Not at all awesome, in my eyes.

But there were some good times, I must admit. He was extremely intelligent. He never forgot one thing he read. He was never satisfied buying something when he thought he could make it himself. He taught me to cook too. He was very good at making things from scratch and often spent hours canning vegetables, making sauces and salsas, breads, and other foods. He could be generous with his time and would help his friends with various projects.

I was terrified of him. And now that is over. I don't have to be afraid ever again. I can still be sad he's gone though. I'm sad the man I cared for is gone and that his daughter has to go through life without her father to guide her. My heart breaks for her and I wish I could take that pain away. But it's time for that chapter of my life to close and for wounds to finally heal. Such is life.