Sunday, October 2, 2016

Stepping Into the Light

When I began blogging eight years ago, I promised I would be transparent. I promised to share - the good and the bad, honestly. I have. Faithfully. For six of those years.

Over time, you've seen me grow, fight, achieve. You've shared with me your support and your love. And I value you. I thank you.

Because of that love and support, today I am opening the door on the last two years of my life. All those things I told you I would share when I could... Now is that time.
 (My daughter has shared her journey - I encourage you to read it here.)

It began with three beautiful, amazing words -

"Mom, I'm pregnant."

Oh, Bill and I  were so excited!! Being me, I instantly hit up the bookstores... baby this, mommy that, daddy the other... nutrition for pregnancy and babies...   (because you know me) ... stacks of books. Then came the baby clothes, and toys, and so much! We had a blast planning, chatting, it was the best time!

Until it wasn't.

Until an 8 week ultrasound broke our hearts. The baby had died. Their doctor grieved, and even cried when he told them. I grieved for the loss, for my daughter and her husband, and I was so angry that I was 5 hours away and wasn't there. I felt so helpless, so useless. Honestly, I was so jealous of that damn doctor. He was able to physically convey his sympathy. I wasn't.  Yet, I was so grateful he was there... But that was only the beginning.

The pregnancy announcement should have been the start of something wonderful, instead it opened a door to a world of fear and sorrow. What followed was two years of sheer hell. Despair. Grief. Joy. Hope. Disappointment. Terror. Depression. Devastation. Incredible highs, only to be faced with soul-shredding lows.  I would give anything, absolutely anything, to have spared my kids from the battle they've fought.

It has a name, that battle. It has a definition. 1 in 8 couples in America suffers from it. It's classified as a disease, and yet insurance does not cover it. It won't kill you, but it will eat away at you and devour your dreams.

It is Infertility.

Infertility is defined as the inability to conceive or carry a pregnancy to term after 12 months of trying to conceive.  If you are over the age of 35, the time of trying to conceive is reduced to 6 months.  (  

I was young when I married the first time. By the age of 20, I had experienced my first miscarriage, and delivered my first child. By 26, I had three beautiful children, six lost angels, and had a medically necessary hysterectomy. There was no explanation for my struggles. No medical professional ever took my miscarriages seriously - I was young, there was plenty of time. Until there wasn't. I helplessly grieved each loss. I cherished my rainbow babies. But I never got answers. Time moved on.

Two years ago, when my daughter and her husband had decided to begin their family, oh how we rejoiced! Yet in sorrow, I have watched history repeat itself. To date, she has experienced 5 miscarriages, undergone countless tests, been given heartbreaking results, and has humbled me with her strength and grace.

We are so grateful, so blessed, that unlike my experience, Shiloh had a doctor who truly cared. He tested, he researched, he listened. And he when all signs pointed to... he referred her to a wonderful infertility specialist who has been a consistent light in a very dark time.

It's been a time of seeking. As we've traveled this path, we've had a significant learning curve. While there is some research, there isn't enough. Not nearly enough. Particularly in young women. In May of 2015, my daughter was diagnosed with Premature Ovarian Failure. While she was only 21, her ovaries were like those of a 46 year old woman. Testing also revealed that she has the MTFHR genetic mutation, which among other things, means that she can't absorb folic acid and vitamin B like "normal people". Additionally there is a blood clotting disorder.  (At the urging of Shiloh's doctor, we had my other daughter and myself tested. We all three have it.) FYI, those of us in this world call it (sorry for the language) the Mother Fucker Gene. Because, yeah. It's like that.  Not kidding.  Google it.

Putting together my daughter's diagnosis, further test results, and family history (namely, me - let's talk about guilt), it's estimated that Shiloh will experience complete reproductive failure by about age 26 (total terminal failure - hysterectomy). In light of this, they decided to perform two aggressive IVF cycles - back to back, in an effort to retrieve as many eggs as possible. It is terribly expensive, prohibitively so. It breaks my heart to think of the couples who can't pursue the option. I'm so grateful for my husband and the way he embraced this fight.  Because of him, we were able to proceed with the IVF process.

From May to the end of July, 2015, Shiloh underwent IVF. After low egg numbers the first cycle, the second one was "all out". Medications were increased, stims were even higher.  The trauma of the first cycle was nothing compared to  the second. All those trips back and forth to San Diego last year were for those two cycles. To help in whatever way I could, and to care for Shiloh after her surgeries.

It's an awful process. The sheer amount of hormones being pumped into the body, the daily needles & injections, the distressing bruises, weight gain, mood swings, the fear and doubt that try to drown out hope... and then the painful retrieval procedure and recovery. I so wish I could have spared her. But I couldn't. So I cooked. Lol.
Post-retrieval surgery
Once all the eggs were fertilized, had gone through the 5 day maturation process prior to freezing, we were down to 7 total embryos. They were shipped off for genetic testing (PGS). And then we waited for the results. I went back home to Arizona. We were all on pins and needles. Two weeks, wondering how many grand-babies we'd get from them, and what would they be like? Bill and I couldn't wait! We knew Shi and Jared would be amazing parents. Those babies would be so loved.

Finally, it was time for the appointment. August 14, 2015. I will never forget the sound of Shiloh's tears, the depth of her pain, the anger inside me that I was so far away - that I couldn't wrap her up and hold her tight.

I can't even say that our worst fears were realized because it hadn't occurred to me that this could happen. None of the embryos could survive. The egg quality was too poor. The crushing blow was delivered - Shiloh is unable to carry her own child. It's just too cruel. The incredible journey of parenthood so many achieve so easily, was denied to her. (this news was the reason for this post. I still cannot watch that scene without reliving those moments - if you want to empathize to any degree, watch that clip in the post, you'll get it.)

In the following weeks, we learned what the options available were.
A - give up.
B - someday adopt.
C - move forward with an embryo adoption (a fertilized egg from another couple).
D - move forward with a donor egg (freshly harvested, to be fertilized by Jared).

Who has to make these kinds of decisions at their age?? It's so wrong, so unfair.

They were "brave and strong and broken, all at once". Shiloh & Jared chose to go the donor egg route. This began the search for the perfect donor. Shouldn't be too hard, right? A blonde haired, blue eyed girl with similar features to Shi. That is not asking too much. Evidently, though, it was. We went through six donors over the next several months. It was brutal.

At one point, we were all traveling to Colorado for our annual family "Christmas" vacation and got the call that the donor she'd chosen was available but we had to put a deposit down (doesn't that sound ridiculous?) or she could be scooped up by someone else. We had just made the turn into Durango, and Bill and I pulled out of the caravan to run into a bank to wire the funds. Everyone was texting, "Where'd you go? Where are we going??" as they headed out of town.  Lol.

Eventually everyone managed to arrive at the property and we celebrated that the donor was booked! It was happening! We had a beautiful week, so much fun! So many hopes and dreams! Then it was time to return to the real world.  We packed up and hit the road.  On the drive home, Shiloh got an email from the agency... the donor was pregnant. When she texted me, I thought, Oh My god. Why the hell would you tell her that???? Say she had a family emergency and had to pull out of the program, say she got sick, say she had to move out of the country... say anything but that!!! It was yet another brutal low following a brilliant high.

Despite the crippling disappointment, Shi and Jared stood strong. She continued to search for the right donor, continued to hope,continued to believe.

One year after Shiloh's IVF cycles, Donor #7 began hers. The donor goes through the same demanding medical protocol that Shiloh went through  - pills, shots, ultrasounds, more shots and then the surgery to "harvest" the eggs. (This is after she is carefully screened - genetic testing, counseling, and so much more. While her identity remains anonymous, every aspect of her health and history are scrutinized).

Each month, a "normal" woman will produce one egg out of one follicle, from one ovary. In IVF, the follicles are stimulated chemically to produce multiple mature eggs- in a healthy woman, this is anywhere from 20-50 eggs. At one time. It requires absolute dedication. It is painful.  It requires modification of lifestyle to an extreme degree. And this time it was all done by a donor who is voluntarily undergoing the process and giving away the eggs harvested to someone she will never know, to create potential babies she will never see. Though these women are financially compensated, I stand in awe of those who selflessly undergo IVF in the hopes that their gift will allow a total stranger to become a mother.

July 6th our donor had her egg retrieval surgery. It was a success. The eggs were fertilized, incubated & documented, then frozen and sent for testing. And we waited. Another two weeks of fear and doubt, of hope and prayer. Please, please don't let this end badly. Please, please give Shiloh her dream.

JOY!!!!! Babies!!!!  Many, many tears were shed. So much excitement, relief, and yes - still some fear. There's a long way yet to go.

Shiloh began the drug protocol to prepare for transfer. More needles. More ultrasounds to track the progress of her uterine lining. And finally, at the end of July, Shiloh underwent the transfer procedure. I was blessed to be there. I can now say that I was present when my daughter got knocked up - I even video'd it. ;-)

Since that beautiful day, the road has not smoothed. She's been in the hospital several times with bleeding. Many IVF women experience Subchorionic Hemorrhaging, and Shiloh unfortunately is no exception. It's terrifying. Every trip to the restroom brings back the fear of miscarriage. Despite that, each checkup brings greater joy, more confidence. She's currently 12 weeks and absolutely blossoming.

I'm amazed at how far technology has come since my time... the ultrasounds are crystal clear, we've already seen little fingers and toes! And Shiloh purchased a heart doppler - it's wonderful! She checks on the little guy every day and that whooshing heartbeat is the best sound! Oh, my heart!

Friday we had the 12 week ultrasound. What an incredible milestone! Though the little peanut wouldn't give us a full profile, we got to watch him wiggle and wave. Oh my heart!!

Throughout her journey, though a private person, she always planned to "go public". There are so many women seeking answers, understanding, support - I certainly was one - with no resolution, a product of my time. She's been one of them for the last six years, and she wants to help be the resource so many are searching for. I applaud her courage. I'm so proud of her. (Her story is HERE)

Opening up about infertility is not for the faint of heart. People can be cruel, whether they mean to or not. The sheer number of stupid, awful things "friends" and "family" have said to her over the last two  years are overwhelming. Here's just a tiny sample, and these are real...

"You must have done something wrong to have miscarried."
"Why don't you have a baby yet? Take the jump!"
"I know your struggling, but it's just too dark for me. I need space from you."
"Maybe it's just not meant to be."
"Oh, just give it time, relax, it'll happen."
"I'll carry your baby!"
"You can have my eggs."
"Just adopt."
"IVF is wrong. It's unnatural. God won't bless that."
"You can't have kids? Take mine, they're driving me nuts!"
"You're pregnant? Finally!! Is this one going to stick?"

If you've known me for any length of time, you can probably imagine the profanity I spew when I hear things like that. I get so angry, so hurt on her behalf. But she's always so graceful in response. She's a much better person than me. Lol.

In spite of people like that, there are others who have stood beside Shi and Jared through their journey. Friends and family who are true. Additionally, I'm so grateful for the wonderful group of women she's connected with online. They've truly become sisters in this journey. They are beautiful, amazing, strong and resilient women.

I'll tell you the truth, my daughter is my hero. What I have seen her survive would break most of us. The catastrophic pain she has shouldered... yet still she can smile, dream, love. She honors me, and she humbles me. I'm thrilled that she's home with us for the next months (though sad that Jared isn't- he's deployed out of the country). I get to coddle her, hover to my heart's content, plan, shop, cook and generally baby her. I'm loving it. Though we're still trying to find food she can eat, lol. Evidently spaghetti squash is still out. ;-) Chicken is also a no-go. Though the Sea-band have helped a LOT - including helping her sleep through the night (oh the joys of the first trimester).  Lol.

We're all praying for continued health - for mommy and baby. And praying for the future. I want all her dreams to come true. I'll do everything in my power to make it happen. And when it's outside of my power? I'll pray. I'll dream. I'll support. I'll do whatever it takes. If you, or someone you know is experiencing this also.. I'll pray, dream, and support for you, too.


  1. Chelly as a mother I can only imagine the hurt you felt for your daughter. To this day you are still my inspiration. I pray all goes well for pregnancy and you will hold that precious child in your arms. No mother ever wants to see her child, whether a child or adult hurting. Their tears become yours. Thank you for sharing your life with us. Kathy

  2. Wow! Just wow! I have no words other than I'm sending all the strength and love I can from Canada, from me! You are an amazing mom!

  3. I can't imagine the heartache. Keeping you all in my thoughts and sending positive vibes. Peace...