I don’t even know what to think, say or feel anymore. I don’t even know how all of this has managed to fit into just one year, much less how I am (and we’re) still alive. I think I know what it feels like to be a tiny ship in a vast ocean, one moment enjoying calm, sunny sailing, and the next fighting one hundred meter tall waves. It’s been absolutely neck-breaking, one moment dealing with the happiest moments of your life, to suddenly the saddest moments, back and forth, back and forth. I’m just expecting the next hairpin turn at any moment.
Back in March, after 1.5 years of waiting for results from genetic screening, I finally got a diagnosis for my severe distal muscle atrophy. It was simultaneously not a surprise and yet a shock, and also such a relief, yet grief over losing a part of me I will never fully get back. Who knew that this news would become the least of my worries this year?
The blissful moments were short-lived
In April, we unexpectedly and happily found out that we were pregnant, and while it was fairly uneventful with both of us just very excited about becoming parents, the blissful moments were short-lived, as we sadly experienced a miscarriage. Not only that, but dealing with the (missed) miscarriage was quite something, which lasted a good two months. Powerful medicines, grieving, a 112 call and a surgery later, we had a few weeks in the summer during which everything seemed a bit calmer again.
And boy, were we in for a treat
At the end of August, we found out that we were pregnant again! Not having to at least struggle to become pregnant (again) was, however, something to be very thankful for! We went into this second pregnancy thinking that, statistically, things going wrong would be very low now. And boy, were we in for a treat. This pregnancy has been none of that blissful joy that we experienced up until the miscarriage in the last pregnancy, nor has it been what you would typically see in people’s pregnancies. Almost right off the bat, we realised that something was off in multiple ways. We’ve experienced a total of six episodes of a threatened miscarriage, five of which were within only a couple of weeks, which was horrifying, considering we had just been through a miscarriage. On top of that, my wife has been battling what’s known as hyperemesis gravidarum (HG), which in short means that she’s had an extremely difficult time eating and drinking (or keeping it down), mostly losing weight during her first trimester, in addition to not having been able to go to work since the end of September. All this madness has resulted in over thirty contacts with doctors, midwives, and OB-GYNs at various hospitals and clinics, including my wife being hospitalised and needing IV–all before getting even half-way through the pregnancy. That said, “baby Nelius” (yes, it’s a boy!) has been going strong!
You grieve the child you thought you were going to have
In November, screening tests (including NIPT) indicated a high risk of a Down syndrome baby. While we do not yet have a definite confirmation (late December update: it’s confirmed–Baby Nelius has DS), I think it goes without saying that no matter who you are, hearing that your child might not be the one you dreamt of will always be devastating. As other parents to Down syndrome babies can attest to, you grieve the child you thought you were going to have. That said, no matter what, we love our baby Nelius unconditionally and would never terminate our pregnancy. He’ll be perfect, with or without extra chromosomes. We also believe that this world and everyone around us will come to love our child, no matter who he is, once they get to know him. But I will write more in my next blog post about what all this means to me and what kind of father I intend to be.
Hoping for him to be able to meet all of his grandparents
In December, so as of writing, the year 2021 has managed to push in one more incredibly difficult and life-changing event. My mother-in-law has been diagnosed with widespread intra-abdominal cancer. While it appears that it’s not colon cancer, which is more severe after intra-abdominal spread than the probable ovarian cancer, it does not make it any easier to deal with, particularly now that we are expecting a son and are hoping for him to be able to meet all of his grandparents. It makes me sad to think that even if he does meet my wife’s mother, it might not be for very long. It also saddens me that I only joined my wife’s family a couple of years ago, and was hoping to experience life with them for a bit longer. But, circle of life and all that. (January 2022 update: she has terminal cancer and is fighting a losing battle, and will most likely not see baby Nelius.)
I’ve told my wife repeatedly this year that the moments in my life when things have just been bad constantly for a long time have been far easier to deal with. But this year has been such an emotional roller coaster, with such exteme highs and lows, and there’s no easy way to say it, but I’m ready to give up on this year, and to just bury it deep, deep down where I won’t have to see it for a long time. One day, I’ll be able to dig it up and look back at how it shaped us and how we became better through all of this, but right now, all of this is just too close-up for me to see clearly. There’s only so much a person can take, and I’m just ready to move on.
Finntrovert 