Return from India

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I haven’t posted anything in my blog for almost 8 months. I just couldn’t. There were too many arrangements to be made, too many efforts that failed; there has been too much emotion and heartache to work through on a personal level, so the idea of writing about it and then sharing it felt like a burden on top of a burden.

And as I’ve written before, even Atlas shrugged.

At one point, maybe it was after the frozen embryos didn’t thaw well while I was in India or when the first, second, and third surrogate didn’t get pregnant in India, my husband told me he didn’t want anyone to know. He didn’t want us to have to live our disappointment out loud anymore.

While I have taken on a vocal stance about our struggles with fertility, not just so others don’t feel so alone but also so that I don’t feel so alone, and while this blog has created a community that has brought us incredible support, and even offers from one woman to be our surrogate and another to donate her own eggs, I needed to take a reprieve from sharing here.

Further, while writing can sometimes be cathartic, other times it is too painful.

And finally, I need to publish this story as a book eventually, so have to divide what I do write between being on here and being in another form and forum.

But for now, I would like to return to that week of when I returned from India…..

Ironically, my father was dying exactly where I had been hospitalized with my incompetent cervix in 2009.  He was in the same hospital where I had given birth, exactly.  He was in the same hospital where there had been that NICU, dimly lit from the peripheral vision of my right, as I was led (first time on a gurney and second and final time in a wheel chair) to the NICU Room, that had brighter lights than at a Pink Floyd show, where I held my infant son for the first and only time – 4 years earlier.

The same fucking hospital. And on the anniversaries of my son’s birth and death.

Sure, I was now in the cancer ward instead of maternity wing. (Interesting that the words that seemed natural for me to use were ‘ward’ – which has a sense of doom to it – and ‘wing’ – which denotes a light and airy feeling.)

I had been wheeled in and out of that exact same hospital from a different entrance than the one where I was now walking in and out of every day, including the day I got back from traveling from India; that Thanksgiving, when I took a cab home after over 30 hours of travel time, grabbed a 5 minute shower, and then raced to the hospital.

The same hospital. Directly across the street from my OBGYN who had brought my baby into the world, who every time I drove to for my annual Pap Smear for the 3 years since Finley’s death I swore I would change doctors, as the entire surroundings of where I would park or where that deli was or where the door was to where I was wheeled in and 2 weeks later out were landmines of traumatic memories.

I was in the same hospital where I was carted out from the maternity ward on a rainy Monday, empty handed, save for some sympathy orchids that some best friends had sent me and some miscellaneous stuff that Craig had brought to the hospital to make what turned into my 2-week stay comfortable (comfortable being a loose term, obviously), and the precious keepsake book that had Finley’s picture, foot prints, and some literature about what bereaved parents like us should do.

Those days – the 3rd and 4th of December, were sacred days, meant for me to feel the emotional tumult that inevitably poured out every year.  But this year I went to the hospital both days, what I know now was a true privilege, making sure the doctors never left the room before we had every answer they could give us; making sure my dad’s lips were not too crinkly from dehydration; playing him music; reciting him poems he’d written; holding his hands; praying.

The Friday after I got back from India my mom and sister and I were there, all 3 of us, together.  As the two of them left, my dad motioned for me to stay, even though there were nurses in the room, waiting to check his pulses and change his pillows.  This was unlike him; before this time, he would always interrupt any one of us in his family to learn what the staff needed to do; he seemed to respect their time, but something had shifted for him: perhaps he realized he had so little time left, and that it was indeed his to do with what he wanted.

“Do you have a name for your baby?” he asked me.  His blue eyes that I’d inherited as bright as they’d ever been.  “Yes,” I answered without a moment’s notice, “and one of them will start with an H.”  (In the Jewish religion, babies are not named after the deceased, but usually the first letter of someone’s name is used as a tribute, so to speak. Finley, in fact, was named for my grandfather Felix. My dad’s name was Herbert.)

He smiled, as it was the exact answer he’d wanted.  I told him our daughter’s name.  And then I told him our son’s name.  Those blue eyes and welled up and he smiled at me, with a gaze so strong I can visualize it now.  He nodded. “That’s beautiful.”

I couldn’t bear to tell him that we weren’t pregnant yet.  And further, that we hadn’t even been able to do the embryo transfer because our 2 embryos had thawed badly.

Two days later, that Sunday, now December 1st, he was having a rough day. They had wheeled him out of the hospital at the crack of dawn to go to Westwood UCLA, and then not been able to perform the procedure that they had planned to do, thus leaving the severe pain in his throat without any chance of relief.

He could no longer swallow and wasn’t allowed any fluids. He asked me that day to help him die.  He looked at me with the intensity you’d find in some old detective movie, where people plot and plan in closed quarters; wearing hats; smoking cigarettes.  “We’re smart. We can do this.  We’ve got to get me out of here.”  He remarked that in Oregon they have physician assisted dying.  “But we’re not in Oregon,” I remarked sadly – feeling defeated that I couldn’t help him; crushed that the conversation had turned so drastic; so inevitable.

There were some pictures of my nieces, his granddaughters, next to his phone, that my sister had brought.  “Do you want me to get some tape and put up these pictures?” I asked.  “NO.  NO, I don’t want to see their pictures. I don’t want to hear about India. I don’t want to hear about your baby.”  Then he stopped himself from this rant and turned to me, with tears in his eyes, “but I want you to know that baby is so important to me.  That baby is so important.  Your baby is going to be so important to everyone.”

FUCK.  Even as I type this I think of the look on his face, and how totally fucking awful it was to realize how much my dad already loved my future babies, his grandchildren, who he would never hold.

“Well you’re going to meet Finley when you go, you know.” I said.  “I don’t believe in that,” he responded.  “It doesn’t matter, Dad, because I know it to be true.”

We left it at that.

And then I returned December 2nd, and he was still lucid and he made funny jokes. That is the day they put him into hospice, the medical world’s way of throwing up their hands and saying there is nothing more to be done, but to make this man as “comfortable” as possible, as he dies.

So I was there that day. And the next, and the following.  To make sure that he was comfortable. To bring treats or a thank you to the staff.  To negotiate with the fucking idiotic hospice administrative lady who treated my father as if he was a file number in a fucking Amazon.com warehouse.

My eldest sister and I would trade shifts, often overlapping, always making sure we repeated every thing we’d heard to each other – perhaps thinking that in doing so we would solve this problem of our father dying – then to my mom, with one of us trying to keep our other sister in the loop.

All this without time to recover from jetlag, to honor Finley’s birthday and the anniversary of his death, and all of this with the devastating knowledge that I had no embryos left.

My father died, Friday, December 6th, 2013 – 4 years and 2 days after my own son had died, in the very same hospital.

I like to imagine that Finley’s soul returned to those same corridors, and led my father to peace.

And while it is now late July of the following year, and I have undergone 8 months of fertility related plotting, planning and failures, to get to the next step in our mission (which is imminent and gives me great hope), it seems like a good time to go back in time, so to speak, and pick up on December 3rd, 2009, the day that everything changed.

To be continued…

Purgatory

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I did a 3 day cleanse prior to transfer to release any toxins from any chocolate or soda or processed food.

I saw my spiritual healer on the morning of the transfer, following days of curating medical appointments and conversations and emails for my 83-year old father, who is sick – so that I could release stress and responsibility for others who were relying on me so heavily and focus only on myself.

I entered the frozen embryo transfer appointment at roughly 11 am, already having taken the 2 ibuprofen to counteract cramping and the 1.5 valium to relax all muscles, to meet with Dr. V – and find out that the grade A blastocyst (perfect when frozen at day 5) had thawed at 90%, which is great (the highest they’ll ever give for thawing is 95%), and that the 2nd, previously a very early blastocyst, had actually upon thawing immediately grown into a blastocyst quality A – with a 95% survival.  Craig and I were joyful, and full of hope.

Dr V. expertly placed both embryos past the curve of my uterus, and away from the Adenomyosis – the muscle that as of now, wasn’t flexing.  He recited his prayer in Hebrew as he held my hand and I held Craig’s.

I was only told to stay on bedrest for 1 day, since it was already a 5-day transfer, but I stayed in bed an extra day and cancelled plans with my girlfriends for Mastro’s.

I ate pineapple, which is supposed to help embryos stick.

I prayed.  Endlessly.  I have literally created a meditation that centers on me connecting with G-d and our future babies, or talking to Finley and repeatedly releasing that grief to the universe, since I understand now that he could not stay; that he was only meant to come for that short time – which has taught me a lifetime of love and lessons.

I listened to positive music – like Barbra Streisand or George Harrison.

I did not pick up Maybelline once, per doctor’s instructions even though holding her is one of my favorite things to do and is one of the very few ways I feel actually happy.

I ate healthy, making morning smoothies and juices with beets or a day’s worth of greens every day.

I took my estradiol, methylprednisolone, baby aspirin, folic acid, calcium, CoQ10, and pre natals as instructed.

Every night Craig would find a new place to shoot me with 2 CCs of oil based progesterone in my butt – which turned lumpy because of the oil and bruised because of the puncturing of the needles.

I worked very few non-stressful hours on a light project I am doing.  I kept my family at arm’s length, being there for them, visiting my father multiple times, but making sure to protect myself with deep breaths and an invisible shield I imagined that would protect me from over extending myself.

Every night I drank a wellness pregnancy tea, and did not over eat Lindt chocolate or graham crackers, or anything else.

I did not wear perfume starting from the morning of my transfer, as scented lotions and perfumes are thought to be bad for the embryos.

I didn’t sleep well at night, nothing new really, but always but was able to make up for that with daytime movie or TV naps with Maybelline.

And still, on Sunday morning at 2 AM when I awoke – I took the Home Pregnant Test and it read: Not Pregnant.  It might as well have been in all caps, with a shrill sound attached that screamed YOU ARE A FAILURE.

I awoke Craig teary eyed, but we both agreed that I could have taken it too early, and I should take one again a bit later in the day.  By the time the real morning had struck, he and I agreed to wait to test again until Monday morning, which was the day I was to have my blood drawn which would offer a conclusive answer.

In the meantime, I scoured the internet for sites with strings of women who had transferred this quality embryo and succeeded, even when after they’d received negative results on the pee stick.  Inevitably I came across internet threads of other women who had received negative results on the stick, followed by negative blood.

I awoke Monday and took a test.  Once again, NOT PREGNANT appeared on that fucking digital stick.

Instead of commuting almost 2 hours to Tarzana to simply have my blood drawn, I had pre arranged having it done nearby.  Some guy in the lab was screaming at a technician, and I sat there, un-phased; numb; listless – I suppose – as I already instinctually knew that the blood test would confirm what the Home Test had indicated.

I called the doctor’s office around 4 to find out the status of the test, and was told that a nurse would call me back within 30 minutes.  I liked the idea of that, because every single time I had received a negative result, a doctor had called me.

Unfortunately, the receptionist had simply miscommunicated, because a bit after 5 PM, Dr. K called me – with the same exact cadence in his voice as I had heard too many times.  “Lorraine….”  And it doesn’t matter what else he said, because he should have simply been speechless, as I was.

It’s nearly impossible to explain how it feels, to fail at something that is based upon such a pure desire.  My husband and I want a child to love.  We don’t want a bigger home.  We don’t care about fancy cars.  We just want a child on whom to lavish the love that lives in our hearts, in our souls, for which our beings actually yearn.

So I am left to wonder:  Did leaning over and cleaning up after Maybelline stop the embryos from sticking?  Are the baby or babies not ready to come?  Am I being punished for something from a different lifetime?  Are there more lessons to learn?  Should I have slept on a different side? Stayed in bed even longer after the transfer?  Did any of the stress I have tried so hard not to own from my father’s illness seep into my protective lair and cause this?  Did G-d not want us to have children? Does G-d even exist?

I have 2 embryos left.  One is grade A.  One is grade B, with slight deterioration.  We spoke with Dr. V today, and talked about doing another hysteroscopy inside my uterus, and about adding a couple of different medications for the next round – not because they are needed, per se, but out of a pure form of desperation.  Dr. V will waive the costs for the next transfer, which is a very gracious courtesy.  (Of course there will still be lab and medication costs, plus out of pocket surgery costs.)

And we said that if that doesn’t work, that I have to think of a surrogate.  Do you know how much a surrogate costs?  Somewhere in the $80k range.  And we’ve already spent $45k this year.  The thing is, if we get a surrogate, then an enormous amount of stress is removed from me, and I would be able to work throughout that time. Because as of now, once I do (or at this point, IF I ever do) get a positive pregnancy result, the pregnancy will be so incredibly high risk, because of my cervix and now because of my increasing age.  So I am not against a surrogate.  (I would welcome suggestions, as a matter of fact, if you know anyone who would be a great candidate for me.)

I am already mourning and dreading the holidays that are now coming upon us, starting with Thanksgiving, that holiday during which I was hospitalized with Finley in 2009.

I am wondering if by not having written completely about what exactly happened on and after the morning I went into labor if I have not released my grief entirely, yet.  I will rectify that, when I can stomach the pain I must endure to recount those excruciating details.

I made an appointment with a Korean doctor on Saturday. I don’t even know his name, but while I wait to have a hysteroscopy sometime next week, I may as well see if any new herbs can do anything.  A $50 appointment is certainly easier to stomach than an $80k surrogacy.

A lot of you have reached out to me personally, on Facebook, through my blog, and I want you to know that I am beyond touched with the generosity of your spirit and prayers.

I remain in purgatory now, but will just keep walking in the right direction, until I find hope again.

Bad News: IVF #14

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– best embryo quality possible after 5 days in the lab

It’s gotten to the point that when I get bad news I tell myself to wake up.  Even though I am beyond accustomed to seeing the words “Not Pregnant” on those cruel and annoying urine tests, I am so confident and steadfast that Craig and I are to be parents again, that it shocks me and I need to shake my head to see if I can snap out of this recurring nightmare.

We had a 70% chance of our latest efforts working. All signs pointed to success along the way.

We had placed 2 of the best embryos ever inside my uterus (picture shown of one of them), both of which had made it to day 5, the magical day by which many embryos have died, deteriorated, or shown fragmentation.

Statistics were on our side.

A psychic who read my Tarot cards at a work party said she was 90% sure that I would become pregnant in June.

My spiritual healer said she felt a strong female presence.

I had pinching sensations in my uterus, an indicator that an embryo is attaching.  (I chose to ignore the fact that this same feeling could mean early miscarriage or signs of my period coming.)

I felt calm and peaceful and confident in our success.

But then on Sunday I took the test, and it said Not Pregnant. I had just chugged a huge amount of water, so I simply decided that the results were not accurate.  I was sad not to be elated with good news, the emotion I’ve been anticipating for.ever. But I was not defeated.

I didn’t feel any responsibility; like, I didn’t question whether I had done everything that was in my control right.  I knew I had done everything I could that was within my control, again, right.  I was confused and startled and deeply, deeply sad.

I drove to the doctor’s office with my little puppy Maybelline riding shotgun.  Maybelline, a puppy that has created so much joy in Craig’s and my life that I can’t even put it into words.  Thank G-d for Maybelline, as without her sitting next to me, with her turquoise little harness, on her green car blanket, with her beautifully deep and brown little eyes and her mushy forehead with the most beautiful Beagle-like brown and beige and black lines you’ve ever seen, it would have been a total deja vu.  Without her, I would have once again been driving on 3 freeways in rush hour Los Angeles traffic to have my skin punctured, my blood drawn, only to have the bad news from that pee stick confirmed.

With her, it didn’t exactly repeat everything I’ve experienced in the past; with her; I have proven what a wonderful mommy I am to her and will be to my next living child; with her and because of her, Craig and I have both been able to give and receive love that we have been aching to give to another for so very long.

It ain’t the same, but it helps.

Lily, the receptionist, took me back and started giving me instructions to go to the bathroom to provide a urine sample. I looked at her with Maybelline in my arms and even through my sunglasses she could see my eyes brimming up with tears.  I shook my head, “No, just need blood taken.”  We made our way to the nurses’ station, where both nurses looked at me, and I shook my head, sad, defeated, forlorn, confused; defeated.

I asked Giselle how often she has seen negative urine tests and positive blood. “Not often, but it can happen. Some women never register in their urine.  Maybe 20%?”  I liked that statistic, and remembered that my friend Lisa had gotten negative urine test and yet been pregnant with twins, only proven by her blood test.  As she took my blood, I went through other facts, knowing both times I’ve been pregnant, the urine test registered the day before.

The female doctor poked her head in, hearing me cry, and the words I spoke to Giselle.  She shook her head sadly; she was speechless.

Maybelline and I headed out, and the woman at the front desk said she needed to collect the $20, the fee for the blood being drawn.  I shook my head definitively, “No, the doctor has waived those costs.

I called my mother on the way home.  She, who is going through her own health issues right now, heard the fear or sadness in my voice immediately; I’m stoic when I have to be, which is more often than I’d prefer, being that I’ve had to go from appointments to procedures to bad news to work way more often than is fair or reasonable; when given the opportunity to just be, well, me, I take it.  I told her the probability of bad news, and I could hear the sadness in her voice.  “I just don’t understand it,” she said.  “You were so confident this time. I know how much you want a baby, and I just want what you want.”

Hearing those words was as good as a hug, and so I held on tight.

I still hadn’t gotten the blood test results that afternoon by 4, so I called the office.  The lab test results were running behind, I was told, so I hung up the phone, prepared to take a valium any minute, and waited.

Dr. K called about 30 minutes later.  I recognized his voice immediately.  “Oh Lorraine, I’m sorry to let you know that the blood results confirmed your urine results.”  Tears welled, and I began sobbing.  “Why?” was the theme behind the barrage of questions I asked.  There were no real answers.  He told me that I’d earned a couple of glasses of wine.  Unfortunately, a recovering alcoholic, that was not a real option

So I popped a valium (non habit forming or mind altering).  And then another half of a valium. And then took a shower in which I cried as I clutched the wall of the shower.  I tried to wake myself up from the nightmare.  No luck.

I climbed back into bed and brought Maybelline up there with me.  It was only the second time she’d been allowed into our bed, the first time being the night before, after I’d gotten those results.  (I maintain that it is important that she is allowed on the bed not because she was crying, but because I was.)

I wrote on Facebook that God and the Universe should get a fucking hearing aid.  I didn’t need to write anymore than that, for a dozen people to send loving messages my way.  I was at the point when I need only allude to bad news for people to know exactly what had happened.

I got a note from a woman I know who had also struggled with fertility, who now has a son who is more than one-year old, who asked me if I’d ever had the NK assay test. I told her I couldn’t remember. She told me I’d likely remember, since it was such an expensive test.  I told her that wasn’t necessarily the reason I’d remember; I’d been poked and prodded and pricked so many times, and paid hundreds of thousands of dollars by this point, that a test that she intonated was expensive was just another blip on the map of my living purgatory.

I called Giselle and I asked her if I’d had that test. She confirmed that yes, I had; it was the killer blood test, that assured us that once embryos were implanted I had no killer blood cells that were attacking the embryos thereby reducing their chance at survival.

I told Giselle the following:  I want you to tell Dr. V to scour my records.  All of them.  And then he should call me and let me know if there is anything else we should do, anything we’ve missed; whether we should go ahead and transfer the next 2 immediately, or if there is something else we should try first.

(We currently have 4 cryopreserved (frozen) embryos in the state of the art laboratory in Tarzana.  There are 2 A quality embryos, and 2 a little less than A but still great quality embryos.)

I expected Dr. V to call me on Thursday and tell me that I was just unlucky, again; that I had merely fallen in the 30% and that we should go ahead.  He called; I could hear the devastation in his voice.  He told me that he and his two associates, Dr. K and the female Dr. W, had sat in his office for over an hour and scoured my files.  My file, by the way, is without question among the thickest there is in the world of fertility struggles.  A forest of paper comprises the details of the now 14 IVFs and the innumerable Artificial Inseminations that have all followed the death of my beloved little spirit son, Finley.

He started talking about the shape of my uterus, something we had taken for granted was sort of unusually shaped, he thought, because of the C-section I had in ’09; because Finley was so scared after my water had broken, he climbed up the top part of my uterus; since the moment I could really feel him inside me, he was hanging out and living down low, by my cervix, but on that day – on December 3rd, 2009, he climbed up and tried to latch on to me as tightly as he could, as the water left the sac, thereby making him unsafe.  So when they did the C-section, they had to cut up higher than they do in traditional C-sections that happen at term.  This had caused a scar, which of course all C-sections cause, which in turn Dr. V had thought had made the shape of my uterus different.

But now he was uttering a different thought; was it possible that below my uterus there was a fibroid or some endometriosis that was protruding up, causing this shift in shape, and prohibiting the embryos from attaching?

I almost threw up, nauseous and disgusted and frightened at the idea that we have had all of these failed IVFs because of something that could maybe be dealt with via a surgery or a few months of medication.

“So you don’t think I’m just unlucky, again?”

“Maybe. But I’m not in the practice of presuming anything, and each time we try, we learn more about you, and we have to explore this before we go again.”

He told me that he and Dr. K needed to both be present for my next ultra sound, which should fall on the tail end of my next period.  He suspected my period would come that day, Thursday, or the next.

I now have an appointment to see them on Tuesday together. I respect, no, revere, the fact that my doctor took his associates into his office with him to review my folder.  “He owes us that,” Craig said.  He is right.

I appreciate the fact that when I cried, “This isn’t over,” to my doctor, he confirmed, “No, it is not over. We will get you pregnant.  And this is waaaay beyond doctor / patient relationship; you are family.  We will get through this.”

I am mad at G-d right now, and am not able to pray.

But I have my period now, which means my body is working, and for that I am grateful.

And even though this is technically my 14th failed IVF, since we tried something so different this time (again, something so personal that I don’t want to get into it now), it is really only the 1st failed one.

And we’ve got those 4 beauties frozen in Tarzana.  And I have my loving husband and my fantastic puppy.  And today, I dragged myself out of bed, though I would have liked to stay there curled up for days, and drove to my favorite hike in Malibu, where I walked amongst butterflies and had a dolphin sighting.

And I remembered that all I can do is take one step at a time; and trust in the universe.

Thank you all for your continued support.

 

Failure

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I wish I were the type of person who could get angry instead of depressed.  Depression aches like a sharp dagger pointing at my heart.  It makes it hard to breathe.  It is impossible to get the tears to stop.

The confidence that we will be parents again is there.  That is unwavering.

But the disappointment that this is not our time, AGAIN, that this frozen embryo transfer did not work, despite all of the love and the prayers and the positive energy that each of you sent to me, to us, is baffling, overwhelming, and just plain painful.

I had to save this document right now under the title of this blog posting, and without a moment’s hesitation, I decided to name it, “Failure”.  That is really the best way to put it, isn’t it?

The problem is, when something fails, someone is accountable, and I refuse to be held accountable for this.  My husband and I did every fucking thing that is medically and spiritually possible to allow for this pregnancy.

We prayed, and we held hands, and we created the best energy possible to allow for the baby.

I have bruises and welts on my butt from the progesterone oil shots that Craig stuck me with every night.

I gained weight, I suffered insomnia, I had night sweats, and yet I still woke up every day and did my job so that we as a dual income house-hold could stay the course and deal with the incredible costs.

We have paid over $12,000 in fertility bills in ‘13.

We paid $58,390.89 in ’12.

(And I don’t feel like going through the other years at this moment.)

That sort of dedication SHOULD be rewarded. That sort of commitment to the idea of loving, protecting, nurturing, dancing with, playing with, tickling, and hugging a child SHOULD be achievable.  It’s not like I’m praying for a new car.

And it will be rewarded. I know that. Craig knows that. But for fuck’s sake, when?

We move into a new home this Friday. It is 3 bedrooms and 2.5 baths. We have been gathering our items to move, which includes all of Finley’s baby items, from the area in the closet that I typically refuse to acknowledge.  We have plenty of clothes and carriages and cute toys for Finley’s brother or sister, just waiting.  (Well if we have a girl, actually, I imagine we’ll have to get lots of different clothes.)

I have had to hold pre production meetings with corporate car clients while having a high fever and sweating the whole time. I have been on commercial film shoots with severe colds.  I have had conference calls during which I ran to the bathroom to throw up because of a crazy flu that made me hallucinate.  – You know the saying: The show must go on.

But today, the pain is so great, the depression so overwhelming, that I have to work from home. I had no choice, really: My typically blue eyes are blood shot.  My noise is swollen and red.  My complexion is puffy.  And my sadness is palpable; I imagine if anyone besides Craig saw me, they would not be able to focus on what I might be saying, because they would be sidetracked by the incredible depression I am both showing, and feeling.

We will be OK.  The baby will come.  There is more than one way to become a parent.  But for today, I am sad, and because you have all become a support group to me, and let me know that I am not alone, I wanted to share this.

To be continued.