My emotions feel like a floodgate these days. It’s like I barely have time to notice that the water is rising before the dam breaks and everything spills over. I struggle with feelings of anger. Anger, though, feels familiar to me. It’s an emotion that I’ve struggled against my whole life, but the deep sadness and the anxiety, those very unfamiliar emotions feel crippling at times. R has been so very very strong through this whole process. She’s walked through hell: three months of near constant nausea and fatigue, then on to the anxiety of bleeding and cramping in the second trimester, being told repeatedly that everything was going to be okay, giving birth to and losing Emmett, being diagnosed with Graves’ disease, finding acceptance with the prospect of not carrying next, and, still, being a consummate partner to me everyday. She is so supportive of my grieving process, too, even when it means I’m being a total nutcase (or a total asshole). I can’t imagine my life without her by my side. Our marriage really is the bedrock of my life.
Lately, I’ve been struggling with wanting to know what exactly happened to Emmett. We know from the autopsy that all of his major organs and skeleton (except his intestines and feet) were normal and in tact, so now we’re just waiting to find out what his chromosomal/genetic abnormality was. I’m such an information junkie that it’s killing me to think that there are some anonymous medical personnel out there who already know the answers, but I’m just having to wait for the giant bureaucratic information machine to make its slow, plodding move back to our midwives clinic. I’ve been looking lots of things up online. I’ll preface this with the fact that I have zero medical background, knowledge of hard science, or any clue about how any of this relates to our situation. That said, there are a number of instances of the absence of feet and/or intestinal malrotation with a syndrome called caudal dysplasia. There’s no way to know for sure until we get the chromosomal study back (hopefully this week), but it does bring me a certain comfort to know that other parents have also been down this road.
We’re having a small blessing for Emmett here at our home next week. R and I picked up his urn last week (we had already picked up his ashes the week before). R found an amazing carpenter in Massachusetts who makes beautiful handmade wooden boxes from found wood. He was kind enough to craft one especially for Emmett. It should be here tomorrow. He sent pictures already and we think it’s absolutely stunning:
We also purchased a handmade stoneware bowl and we’ve asked some close family and friends to bring small stones for Emmett’s bowl (along with a blessing, poem, or letter to share). We plan on putting Emmett’s urn, his blanket, the bowl with stones, our pregnancy tests, ultrasounds, our photos of him, and the many cards we’ve received into the box. The box has a tiny gold lock with a skeleton key, and R just had a very special necklace repaired (it holds the cross her Dad wore through the Korean War), so that she can wear the key to the box around her neck.
We also bought a book this week (R referenced it in an earlier post) about Graves’ disease. It seems really informative and empowering so far. It has a ton of medical and scientific information about the autoimmune disease that is at the root of the thyroid and optical issues, but it also includes information about alternative and complementary treatments (in conjunction with information about more conventional treatment). Plus, there are a number of anecdotal sections written by other Graves’ survivors. I hope that it will empower us as a couple to take R’s health and treatment very seriously. Many doctors (and patients) rush into radioactive ablation of the thyroid only to have the side-effects from the radiation wreak more havoc on their health than the hyperthyroidism did in the first place. It’s a tricky road to walk between between taking proactive measures and maintaining a conservative stance toward aggressive treatment. I believe in R’s body, though, and in her resilience as a person in the world. I trust that she will come through this diagnosis with her health and integrity in tact.
There’s also been a number of conversations happening about the future of our family. With everything that R has been through (and with so many health-related unknowns still to discover), we seem to have settled on the idea of me trying to carry our next child. And we seem to have settled on a sooner, rather than later, approach. This requires a lot of communication and a lot of trust between the two of us (and us with our medical practitioners). We’ve decided to get our proverbial ducks in a row, so that if and when it feels like the right time to try, we can start (or stop) without a lot of scrambling/last-minute decision making. We’ve found a new bank, we’ve found donors that we like, I’ve gotten my annual exam (along with some extra blood-work), and we’ve made adjustments to our financial plan for the year, which will free up more money for trying (for instance, putting off new orthodontics, and getting house repairs done through a county assistance program rather than paying a regular contractor out-of-pocket). I know, I know, my blog posts are always so “informative.” What can I say? I LOVE information; I live for it. My whole world has been turned upside-down, but I’m still standing (albeit, on the ceiling). Now I just have to make sense out of this new perspective. I am heartbroken over the loss of my first child. Nothing will ever take his place in my heart. Even so, my marriage is still strong, my house is still standing, my job is still waiting, the cats are still purring, and the damned under-sink water filter still needs changing (again). There are so many ways in which this new normal is still, well, normal. And maybe that’s the most painful fact of all.
I’ll leave you with R’s favorite excerpt from Tennyson’s “Ulysses.” She just “re-discovered” it this week, as it feels very fitting for where we are right now:
We are not now that strength which in old days
Moved earth and heaven; that which we are, we are;
One equal temper of heroic hearts,
Made weak by time and fate, but strong in will
To strive, to seek, to find, and not to yield.”