Thursday, September 10, 2020

The Smallest Light in the Darkest Year: Happy Birthday Jace

It feels odd buying a birthday cake. Lighting the candle feels more like a somber vigil than a celebration of any sorts; it's a tiny light in a dark, silent room. Instead of singing, there are only tears. It’s been a year since Jace died and was born, and it feels strange calling it his birthday but it feels wrong to call it the anniversary of his death. All I know is that I should have been planning my son’s first birthday party after a year of wonderful milestones and memories, and instead I planned a trip to a family vacation spot to spread his ashes into the sea after a year of trials and tribulations and missing my baby.

Catalina is a favorite spot, one my family has frequented since I was 18 months old, and an annual tradition we have observed since, first for vacations, then for Father’s days. We have many traditions that we have passed on to my brother’s kids and I had hoped to begin them with Jace this year, from collecting golf balls to buying him a small stuffed buffalo, and a million other things jammed pack with nostalgia. I had been pregnant during our trip last year, and I was dreading our trip this time around with his absence, but I was saved by the pandemic and our trip was cancelled. The only downside was that I had planned to spread some of his ashes in the dive park there during the holiday. An avid scuba diver, I had hoped Jace would love the ocean and eventually want to dive like his mommy, so it seemed perfect to leave a piece of him there. With COVID changing everyone’s plans, I tentatively moved the trip to his birthday, and on September 8th, we disembarked on the island with his teddy bear urn in my backpack. Not the way I envisioned bringing my son here for the first time.

My mom and I went to our family breakfast haunt, The Sandtrap for some drinks, and while we sat on the patio near the planter, I spotted a lone golf ball sitting amongst the succulents. As kids we would cross the street to the golf course after breakfast and hunt for lost balls in the bushes. My brother’s kids do the same every year, but now most balls are secretly planted by grandpa to ensure everyone has a successful search. This time, though, it was a genuine find, and it was almost as if it was waiting there for Jace. After, we went to the dive park. I opened a birthday card my mom had brought for him with a small paper butterfly fluttering out of it upon opening. I removed the glass heart I had carried his ashes in, then reluctantly scattered some of his ashes into the waters crashing on the rocks; I still had the ashes in his urn, these were overflow ashes that hadn’t fit inside the small container, but it was hard to let any piece of him go. We sat by the water and cried. Later, I went and filled the heart with sand, hoping to find some shells to add. The beach is not known for its shell production, but I found a single, perfect white shell to add, just for him. We then gravitated toward a small toy shop. One tradition I had started for my brother’s kids is on their first trip to the island, they would get a small stuffed buffalo (for those unaware, buffalo are common on the island, practically their official island mascot). I almost felt odd buying one for Jace, but technically it was his first trip to the island and he deserved one just as much as any of the other kids, right? My mom purchased the toy for him and I tucked it into my pack with his bear. We sailed home after lots of tears and broken hearted, but also with some closure as we reflected on the last year.

Things of course have gotten easier with time, though the cloud of devastation hovering over me at the moment is thick with the heartache that Jace’s birthday brings, heartache of what should have been and the trauma of every single thing that happened in these few days one year ago. The flashbacks have gotten worse, I’ve been crying for the past two weeks, and some days can hardly manage to function at work or through basic life tasks. The triad of my friends’ healthy babies born this time last year are preparing for their real first birthdays, and it stings that we are and will always be the ones left behind them. But there were good days in the last year too.

For the most part, being around baby stuff is easier. I can walk by the baby section of Target without tears welling in my eyes (though a sharp pang may still sling through my heart suddenly from time to time). I have unmuted most of my friends with new babies on social media (though the occasional baby announcement still stings and I’ve avoided gender reveal parties). I’ve bonded better with my youngest niece, whom I mentioned in my previous post was a bittersweet shadow of what my year should have been, and I survived her first birthday party, save a few tears and plenty of wine. We play more, cuddle more, and laugh more together in spite of it all.

As life goes, however, there were obstacles and pitfalls in my road to recovery. I had been healing with the help of time, working through my darkest days with my amazing family and friends, and my therapist, and I had been gradually preparing myself emotionally and physically to get pregnant again. I grappled with feelings of guilt for trying again so soon, as if it was disrespectful to Jace’s memory. I lived in fear of revisiting failed IUI treatments and even more fear of getting pregnant and living the next nine months in pure anxiety of losing another child. I recalled the daily anxiety I felt after learning Jace was sick, overanalyzing every time he stopped moving, every little pain in my side, holding my breath when he didn’t stir the moment I awoke in the morning, terrified he had died in the night. How could I live through that again? But I was determined to go through it all, I wanted to be a mother that badly.

Navigating my process around COVID, I met with a new fertility doctor via telephone, and we ordered preliminary bloodwork. A week later she called with the results, slight hesitation in her voice as she ran through the basic tests first, then sighed and paused when she got to my hormone levels before ending my dreams of biological motherhood in one fell swoop. Her words came in small fragments from what I can recall now: hormones levels abnormal; egg production too low; egg quality poor; no IUI. She suggested IVF, again far too expensive for a procedure so unsure and never covered by insurance. Egg donor? Embryo donor? Still too expensive and why go through the financial and emotional strain for someone else’s baby? No genetic connection, no mini-me with my eyes or smile, not even a little funky toe like Jace had. I steeled myself for a second opinion and returned to the doctor that had helped me get pregnant with Jace. He was more optimistic about my prospects and believed trying again was worth it, but even then he could only offer a 5-15% chance of success. The first doctor was covered by my insurance, but my wallet was barely stretching for one round of IUI if I used this clinic. Ultimately I decided it wouldn’t be worth it, and I should save my money for the guarantee of adoption.


But before we parted ways on the phone, my doctor lowered another boom on my already crumbling walls. He asked, “for the sake of science” about my failed pregnancy with Jace. As I shared the circumstances, he pointed out additional concerns with my treatment for IUGR, asking what the doctor had done and why she hadn’t done other things. He asked about the diet they placed me on. I told him there was no special diet, the doctor had said it wouldn’t change anything; I had placed myself on high protein and high vegetable diet, for whatever it was worth, which ended up not being much. He asked about medications. I was told there were none that could help. He inquired after bed rest. I recalled that I asked about bed rest early on, but she had told me it wouldn’t make a difference. I recounted how when things were taking a turn for the worse, one Friday I had told my boss to prepare for my absence because I was going back to the doctor the following Monday and demanding that she place me on bed rest. The next day I learned that Jace had died, and realized he was probably already dead when my boss and I made plans for my leave. The doctor, maintaining careful professionalism in his constructive criticism for my young perinatal specialist, shared that though he was not a specialist, he would have implemented more treatments for my child if he had been in charge of his care (and no, staying with him was not an option as the fertility clinic only monitors pregnancies up to 12 weeks). He shared that special diets, newly developed medications, and bed rest were all shown to have helped with IUGR. Though these treatments may not have saved Jace, at least we would’ve known that we had done everything possible. I wouldn’t be plagued with the constant what ifs I face now, if the specialist had only bothered to try and save my son.

It was then that my one biggest complaint about my treatment shot to the forefront of my mind and joined these new painful revelations. My blood pressure. Once I had found out that Jace was sick, as stressed and fearful as a new mom would be, my blood pressure skyrocketed during my pregnancy. Every time I went in for check-ups, the nurses had to take my blood pressure multiple times before they could get an acceptable reading; one time the nurse gave up and just sent me in to see the doctor, then tried another 6 times after the appointment before I could go home. And in all these times, riddled with cuff marks on my arms, my doctor never once mentioned my blood pressure to me. Being naïve and ignorant in pregnancy issues, I figured if she hadn’t brought it up, perhaps it wasn’t a significant concern at this point. However, in the few days before his death, a circulation issue was identified in one of the arteries of Jace’s umbilical cord. It wasn’t until after he died and I researched it that I found this was not caused by IUGR, but likely by my high blood pressure. And I think it ultimately killed him, not the growth restriction.

A week after Jace died my mom and I sat in the doctor’s office for a final appointment, a debriefing of sorts, and this woman said verbatim: “I am kicking myself because I wish we would have monitored your blood pressure more closely.” This was the first time she had spoken of my blood pressure. Now. After I had already cremated my child. I was too grief stricken, too numb to respond with the rage that would eventually hit me and boil over and continue boiling as every doctor I met following my delivery noted the same: concerns with my blood pressure. Not the IUGR, that didn’t seem to register with most, probably because it’s actually extremely rare for a baby to die from growth restriction. Even at his final appointment, though he was still behind in his size, Jace was still growing. And then he was gone. And now she is kicking herself.

Yes I had thought of lawsuits, but it would have been too financially and emotionally strenuous to battle it out with a conglomerate like Kaiser Permanente in the courtroom, especially with a pre-existing diagnosis that could easily be made the fall guy in our war of blame. But after finding out that I would never have another biological child, and this woman is likely responsible for the loss of the only child I would ever carry, I would be lying if I said I had never thought to kick her too. It's not uncommon for practitioners to play a role in the loss of a baby, as I learned in my support groups. They often dismissed the concerns of mothers who instinctively knew something was wrong, or like me, preyed on the ignorance and naivety of new mothers-to-be, perhaps due to ego, or perhaps their own inexperience. I'm not sure which category my doctor fell into. Partially for cathartic purposes, partially to slap her via written word, I wrote her a polite but emotional letter about my experience with her. I’ve yet to send it, I’m not sure I ever will, but I continue to hope that in her own self-flagellation for her negligence, she has learned something that might help her save someone else’s child. No lawsuit in the world is going to bring back mine.

Finding I could no longer carry a baby came with a twisting, churning sea of conflicting emotions. A storm with one day finding myself literally heaving and struggling to breathe between the sobs, and the next day calm and collected, both in anguish at the loss of my dream and in relief that there would be no IUI battle, no 9 months of crippling anxiety. I had moments of clarity that adoption would be best, I had moments of irrationality where I toyed with the idea of begging my family for funds to blow on fertility treatments that would likely end in heartbreak anyway. A few people have put in their two cents on my options, but none have offered to pay the steep costs of IVF as of yet, none have volunteered to shoulder the fear of losing another child, so it would seem their opinions hold little understanding of the challenges I would face.

So adoption has been decided. Foster to adopt, to be precise. And I am making strides in the approval process. To be fair, as I had mentioned in previous posts, adoption was in the plan all along, and was going to happen for any children after Jace was born. Now my timeline has just been pushed up with an important component of the equation missing. Most people think it’s a breeze compared to the difficulties of conception and pregnancy. But in spite of the all too easy “why don’t you just adopt?” response most women with infertility face, adoption is no easier emotionally and there are several other obstacles to work around. Though financials are non-existent issues in the foster to adopt world, there are more challenges and ultimately no guarantees that the child placed with you will end up yours. They could be returned to their family and it’s another loss to endure for an already broken hearted parent. But this is the risk we take to be moms, and it’s the only option I’m left. There is no easy answer in the world of infertile women, and at times even fewer answers for single, gay women who want a family.

So the healing continues. More mountains to climb, more work to be done in the therapy office, more tears to be cried on the couch when I’m alone at home. And still, in this all, missing Jace every second of every day. There are still a few days of complete darkness, guttural sobs, silent screams in the shower, and a deep loneliness. But now there are more days of calm and peace, laughter, and hope. I don’t think the darkness will ever go away completely, it never does when a parent loses their child, but hopefully it will shrink away, sit quietly in the corners of my mind, and only pop up on occasions like Jace’s birthday, or Mother’s Day. Not enough pain to consume me, but just enough to hold a standing testament of how much Jace was loved, and how much he is missed. And I never want to lose the ache of being his mother. His birthday was hard, the candle on his cake was the smallest light in the darkest year, but stands testament to the fact that we survived this first year. It's a flicker of hope for what may come, in the midst of heartache and healing. 

I love you Jace, happy birthday my sweet boy.