Friday, April 27, 2018

Dark

I have been keeping this blog since September of 2007, the year my daughter died.  I started writing right before her birthday, the first one without her here.  I was doing my best to find ways to breath and live, to love and be present for my son and daughter who were hurting and were afraid I was going to disappear.  I was swimming underwater looking for the place I could come up for air.

There were a lot of reasons for writing, for me its like meditation, a prayer, a secret friend.  Writing here also feels like keeping record, making sure it all stays real and she isn't forgotten, none of this is..   I may have also secretly thought that someone else would find this blog by accident, someone who needed it.

I have written mostly about missing my daughter, about how the earth keeps turning, the sun comes up and goes down and what we do in between.  I don't write it all, I can't but I offer a glimpse I think.

I have written about my broken heart, written little letters to Stevie, updates about life...

-not sure that I have written about the dark-side, not really.

Not as honestly as I should have.

When this death thing happens and mother loses her daughter, something breaks, its a fracture in your soul.  It can't be repaired, you don't try because there is something sacred in that broken place, it has to be seen, felt, remembered, honored.  You might be able to use string and tape to hold the rest of you and your life together if you are lucky but this tear in you is a part of you forever.

I am still me,  not the same me, that person left with my daughter.  I sent that me off to be a ghost in the place Stevie is now.  The me that is here is a different kind of ghost.  There are dishes to be washed, piles of laundry to be folded, kids to take to school, bills to pay, put a stamp on, and take to the post office.  Meals need to be planned, shopped for, and cooked, gardens need to be planted, cars to be repaired, dentist appointments to keep...I have purchased three vacuum cleaners, a washer and dryer, two refrigerators and a two stoves.    I just got a new car,  put in new kitchen cabinets, opened and closed a business, had a child, laid a bamboo floor, built a porch, I buried two parents, a grandmother, an uncle and a best friend.  I have been to three therapist, visited Paris and Italy, cried on a beach in Hawaii where I lived when I was two.  I gained 50 pounds, lost 40 pounds, and I contemplated killing myself several times.

Life does go on after loss but not always.

It took three therapists to convince me I was strong, exceptionally strong, and one man to convince me I wasn't.

It took a little boy with big blue eyes and a heart bigger than the universe to save me, and baby with dimples in his shoulders to convince me I deserved saving.

There have been a lot of tears, and I don't mean the kind that roll down your cheeks when you watch a sad movie I mean the kind of tears that dry up before you are done crying because there are just no more tears left, but still it hurts.

When Stevie left I had all her medications including oral chemo in a zip lock bag in her closet.  That bag was my escape hatch.  My plan was to make sure she was honored and buried properly, make sure Noah and Aly had what they needed, make sure the bills were paid we were not in debt, the house was clean, things repaired that needed repairing.  I would wait to be alone, lay in Stevie's bed, take the pills and go to sleep, hopefully wake up where she was.

That is really hard to read and it was even harder to write.

I didn't want her to be alone.  I didn't want to be here without her.  It was that simple.

Everyday I was distracted by something that had to get done before I left.

Every night Noah snuggled up in Stevie's bed with me and held my hand and told me beautiful stories, told me he loved me.  He was afraid I was slipping away and he was holding on to me, he never let go, he waited for me to feel love again, to trust it, and he wasn't letting go until it happened.

There would be so many days that I just couldn't imagine living through.  I felt very alone.  My relationship with my husband had long since crumbled and he was grieving in his way, I was grieving in mine.  We both stayed distracted but there was fall out and ugly nights fighting.  I needed something he could not give me, a reason to believe that things were going to get better and be ok, someone to keep me safe, someone to walk through this hell next to me.   Instead he said hurtful things and made me feel like a failure for not putting my energy into him, for not melting into him and making him the center of my life, for not being needy in the right way, not making sure his needs were met,  and not trying repairing our relationship so he could heal.  I couldn't I didn't feel anything anymore except sad and alone I guess.

A year after Stevie left I woke up feeling something that I hadn't felt in a long time, a calling.  I am not religious, and it wasn't God, it was a child.  I had this "feeling" with all of my kids, I knew it was time for my child to come home.  It isn't something that's easy to describe.  Some people call it "brooding" ( I was already an older mom when I had Noah)  most women my age were beginning to go through menopause, counting down the days until kids are off to college, but I heard a call  It wasn't practical, it was odd timing but it was strong and could not be ignored.

I focussed a lot of my energy on the prospect of having a baby, I thought about it,  worried about it, tried to talk myself out of it, but it was bigger and stronger than me.  Part of me thought I could bring Stevie back...Like I said I am not a religious person but I had always had a strong personal relationship with my God, for me that "God" was always so much bigger than any organized religion would let it be.  After Stevie died I was really angry at a God who would let a child suffer and die like that and I questioned everything I ever believed.  Some mornings I woke up with clarity and some nights I went to bed feeling very lost and alone.  Now I felt like I was being asked to do something that was going to push me hard again, force me to show up strong, I was afraid but I was also filled with hope and love.

It was even more difficult than I thought it would be.  I was blessed (or cursed) with some crazy genetics that had me ovulating regularly and in possession of decent supply of eggs that should have been dwindled away.  The doctors I went to explained that statistically a natural pregnancy shouldn't happen and woudn't without medical and technical intervention, they recommended IVF, not something my insurance would pay for or that we had the resources for.

Steve was sure I had lost my mind but when he found out the odds of it working (terrible, something like a 2% chance)  he relaxed, played the good-guy and showed up in a nice way which surprised me. He thought that this could be a way for him and I to find a way to re-connect.  He would look like the awesome husband willing to give his wife what she needed but the odds of it actually happening meant there be no baby so it was a win-win.  He would reveal this to me later and it would actually cause more damage to an already very fragile situation. 

I would be using a cryo-sperm donor because my husband had a vasectomy (something he chose to do against my wishes when Noah was 6 weeks old) so that further decreased my odds a lot.  Choosing a sperm donor from a catalog is surreal. I wasn't looking for a designer baby but I did want a donor that did not have a family history of Cancer or any serious genetic diseases.  I tried to choose a donor that physically might be a match so my kids would look related but  physical appearance wasn't high on my priority list.  Every month I went in, collected my sample and had a doctor introduce it into my uterus.  There is a long process that is hit and miss leading up to this appointment that involves charts and tests and injections.    My husband went for my first IUI and he does get points for that no matter what his motives were.  That day felt like some kind of creepy dream, it felt wrong on so many levels.   I spent a year in tears, every month a negative result but I  was just more determined with the next cycle,  I wasn't giving up.

I learned about embryo donation.  It felt like the heavens opening up, I just had to find a clinic and a doctor that could help me, and I did, it wasn't easy.  This is where my husband got angry and bailed.

I  took a break, decided to find a really good therapist to convince me I was acting irrationally, to point out all the things I wasn't seeing or that I was ignoring, to tell me I had some kind of post loss mental illness, to give me medication.    What I discovered was that I was going through something very common for women after the loss of a child, it was a biological need, I was taking care of my heart and mind in a very natural way.

I moved forward on my own, when I felt sure, when I understood that hope is as healing if not more healing that anything else.  My heart wanted to believe that good things could still happen, that I could open a window for Stevie if she wanted to try this all again, that I wasn't crazy because I needed to love like that again. After months of  insurance craziness, injections, scans, long drives, a waiting list, tears and frustration...

 I became pregnant.

 I threw away the zip lock bag of chemo and medications after I hit my second trimester.

Halfway through my pregnancy we discovered through an ultrasound that my little girl did not have kidneys and she was dying.  She had no amniotic fluid so she was being crushed by the weight of my body.  I chose to deliver her early.  After 12 hours of hard labor (in the same hospital where Stevie died) with a fever of 105 caused by a rare reaction to the drug they used to induced me, with  my body packed in ice, I delivered her.

I spent all day and night in labor and delivery alone.  I needed to do this by myself.  I didn't want to put anyone else through more pain.  My husband could not be available for me the way I needed so I had to take care of myself.

I felt that broken place inside me open a little more it went deeper and farther now.  I felt like I would be swallowed up and I was.

When I held little Claire in my hands all I could see was her beauty, she was perfection to me and I felt like this had to happen, she needed a mama to love her for 19 weeks, I needed to learn something and we both showed up for each other.   I also felt like I understood, really understood that things happen for reasons that I will never understand, can never explain and that I was part of a thing already set in motion, God wasn't punishing anyone, and that I was not a the child of God I was God, and  I was Stevie and Claire, and sunlight and an ocean.  I was a tiny star in a vast universe, I was a blood cell, I was a thought, a dream, the electrical impulse that sends pain or pleasure from one part of a body to the next, the energy in every lightning bolt, I was a grain of sand, a planet, I was everything, I was so small you couldn't see me with a microscope and too big too see at the same time.   A fever of 105 will do this to you.  I won't ever forget it.

I was split wide open with loss but also with understanding.

I kissed her little feet and her head the size of a lemon, inhaled her and thanked her, told her I loved her.  Then the most unexpected thing happened.  I knew I wasn't done, that I had to endure this to get to the next place and my child was coming, I just had to do this first.  I wasn't afraid.

Someone told me after I came home from the hospital that the universe was telling me "No" and I had to listen.  My reply was,  "The universe is simply asking me how badly I want this, miracles take participation and I am all in".

At the same mortuary where Stevie's body was taken to from the Hospital in April,  I sat in a parking lot once again, a tiny box of ashes in my hands.  My husband explained that  I didn't lose a child, I lost a pregnancy and all though that was loss, it wasn't the same thing.  He told me if I tried again he would leave me.

Back to therapy.

I made the decision to try again.  It wasn't a secret plan, I hid nothing, I just did it alone.  I knew that he would leave and I was fine with that.  I think he thought the threat would frighten me, it always had in the past but not this time.  My marriage may be over but I made a promise to this child and I intended to keep it.

Same embryos and on Claire's original due date I was in the hospital, draped, bladder full, tests done, waiting as the embryologist asked me my full name and birth date.  The nurse scanned my abdomen, the reproductive endocrinologist gently saying kind things to me as he placed the embryo's into my uterus.

I was given five embryos from an anonymous donor.  The first two resulted in Claire.  After consulting with a genetic councilor we determined that what had happened was a fluke or genetic and they couldn't tell me which.  The fact that none of the other babies born from these embryos died this way gave hope it was a fluke and most likely would not happen again but there was no guarantee.

A month before transfer I panicked and asked for different embryos, but the night before I felt sick about it.  I promised those little cell clusters that I would give them a chance if they wanted it, told them I would love them and give them a warm place to grow.  I know, I know, it sounds crazy but they were my embryos, my responsibility.

On transfer day I asked about the embryos I was getting.  The nurse told me " the same the same embryos, yours"   It seems the note that was suppose to go on my chart never got there so no new embryos were found for me.  I smiled, it felt right, my journey was with these little guys.

I took myself to lunch after the procedure, then went to work, then home and waited, pregnancy tests all came back negative day after day.  I tried to cancel my clinic blood draw, I didn't want them to to tell me I wasn't pregnant, it would hurt more.  They told me they couldn't withdraw the progesterone until they documented a negative pregnancy test so I drove out to the hospital on a winter day, through the tunnel, through the neighborhood with the beautiful craftsmen houses I loved, to Stevie's favorite city.  I had given up, not in an awful way, I had just accepted that I did the best I could do and that at some point I had to be done.  That day was my done day, I knew I would be ok.  I gave it all I had, worked hard, showed up, pushed, fought, cried, begged, prayed, used up all my resources.

That afternoon about 3-4 o'clock I went to the restroom, my last pregnancy test was on the counter.  I used it thinking "this is the last time I will ever have to do this".  I was just about to toss it in the trash when I though I noticed the faintest shade of pink, the kind of pink they might call blush, the kind of pink that you almost imagine... then the phone rang.  I had an HCG of 8.  I was technically pregnant but that number should have been a whole lot higher.

The nurses at this point knew me well.  They hurt for me when I lost Claire and I told them this was my last try.  They knew about Stevie and they were rooting for me.  The nurse who gave me the number 8 said, "its 8, don't give up, not yet it's still early".

Every two day I made the long drive  for another blood test, I watched the numbers double and triple. At six weeks a scan showed a very tiny pregnancy, I wasn't out of the woods yet but there was a heartbeat.  Every week that little heart got stronger and my baby got bigger and I knew I was right where I needed to be.

My pregnancy should have been beautiful and it was because I was happy but at home things were hard.  My husband was angry, he went out of his way to let me know this daily.  He called me selfish, he told me my friends were not really supportive that they felt pity, he told me I should be embarrassed.  He kept my pregnancy a secret from everyone he knew including his family.  I wouldn't let him crush me but it did create way too much stress, more than I needed.  I did my best to find ways to be away from him and alone so I could sing and talk to my baby like I did with my older kids.

Some days I asked the universe why it all had to be so hard, why it couldn't be just a little easier, and on other days I asked the universe what I did to deserve such amazing children, why it chose me to trust with such extraordinary humans and I said thank you a million times.

Half way through my pregnancy I took myself to the perinatologist.  Noah ordered a brother, I simply hoped for two kidneys, even one kidney...I got a little boy with two beautiful kidneys.  Noah got a blue cupcake.

On the 19th of September after the sky turned pink, in the same hospital I lost Stevie and Claire, a month before my due date,  I gave birth to my baby.

Steve was there to support the kids but not for me, he slept through my labor that went on all night.  A failed epidural meant a painful delivery and cement leg.  My little guy was early, small, healthy, but needed to go to the nursery for four hours.  I was a fall risk so I couldn't go.  Steve was the only one who could go because legally he was the babies "father".

Ironically he bonded with that little guy and has loved him deeply since.

Was that happily ever after?  No.

The dark and twisty still finds me.  I am brought to my knees while doing dishes.  I have to pull my car over to the side of the road to sob and scream.  I go for walks early in the morning unable to breathe as the sky changes color.  There are days I still can't make sense of any of it.  Everyday I miss her and I live in that abyss that was created when she left.

But I live in layers.  I have My sons who make me so incredibly happy, I have Aly who had become not just my daughter but my friend and we have become a lot more close.   I have friends who never felt sorry for me more than they felt in awe of my strength and bravery and its a struggle to allow myself to believe that sometimes.

My husband never left, he was never going to leave but he is the kind of man who needs a wife that would be afraid he would, he is the kind of person who needs to feel that kind of power over another person and I found a way to not be that person anymore.

I don't love him.  I care about him as the father of my children and we have a long history together but that is all.  There are days he gets it but most days he pretends that things are the same as they always were and sometimes they feel that way and I don't like it.

We share this house but we don't share a life together, not really, and we never really have.  I am lonely and missing having a "person" to be a grown old with, to talk and share and be happy with, someone I can trust, someone I can lean on and tell secrets to.  I ache to be with someone that I feel an equal, loving and romantic connection with.

That tear in my soul is still there, but I have filled it with gold like a kintsugi bowl.  That rip in me is treasured because it means I loved that much, was loved that much, nothing else can rip you open like that.

Time goes by like it will and I just live the day, do the best I can, honor pain, welcome joy, and love my kids.  Eleven years its hard to believe, hard to wrap myself around.  But here I am and it isn't as dark as it was eleven years ago.










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