Here is the start of a two part Squawk Box that will take us to the end of October. Today’s piece comes from Anne, I know her through Twitter and we bonded over the fact that we are both Aggies! For those of you not in the know, an Aggie is someone who graduated from Texas A&M University. Anne is a born and bred Texan and I was only really passing through, but once an Aggie, always an Aggie… The fact that we were both battling infertility didn’t hurt either! So, we have been keeping up with one another’s journeys that way.
Anne suffers from a Balanced Translocation in her genome which has, unfortunately, caused her to miscarry multiple babies. She has also experienced one still birth that was not related to her condition but was a cruel twist of fate… more on her still birth next time, first let’s start at the beginning of her journey as she tells us the ways that infertility and repeat pregnancy loss have affected her.
The photo today is of superwoman… Because she is! You’d have to be to get through all this shit. Whether she was before or has become this way through her transforming journey is impossible to say. I think maybe a little of both. Here is her story:
Becoming Superwoman – Part 1
Written by: Anne Mashek
Published with the author’s permission
Since it is October, that means it is now officially Pregnancy and Infant Loss Awareness Month. No, it’s not as flashy as the pink ribbons everywhere nor as well-known, but it affects 25% of people directly and countless others indirectly. Infertility is the inability to conceive and/or the inability to carry a pregnancy to term. This is not an “infertility awareness month” (that’s in May), but October is a very big month in infertiles’ lives because many of us can and do get pregnant, but we lose them, one way or another. I am a self-proclaimed infertility veteran, and I’m still in the trenches trying for a healthy take-home baby.
Thankfully, I married my Mr. Right. He is amazing! I couldn’t do this with anyone else. My Mr. Right is the perfect husband for me and the perfect father for our babies. We have been together for over a decade. He’s my rock. I never thought I would still be doing this at 35. In my head, I saw me in my cute little house, with my ruggedly handsome husband and our adorable ragamuffins, snuggling our cats every night and making precious memories. So far, I have that life….minus the ragamuffins.
Mr. Right and I began our journey to parenthood in December 2010. It has most definitely not gone to plan! We had six months of nothing… not even a blip on a pregnancy test. My doctor had me try Clomid to jumpstart my ovaries. Success! First cycle on it! BFP! (Big Fat Positive!) And then our world decidedly turned cloudy, gray, and stormy. It was a blighted ovum. All sac, no baby. I elected to have a D&C procedure since I was supposed to be 10wks along, but nothing was in there, nothing was changing. Scared to death, we went to the hospital for my minor surgery, but it was all okay. Things went textbook perfectly, I had a laughably easy recovery, and we were back in the saddle, so to speak. Thinking of it now, that was another world ago. We’ve gone on to experience many more miscarriages (six more, to be specific) and a stillbirth.
The miscarriages have all been different. It is such an individual thing. I have to admit, I never could wrap my mind around the concept and reality of “miscarriage” until after my fourth one. No two miscarriages are ever exactly alike for any couple. It’s never the exact same experience. The dates, seasons, causes, and recovery are different. Are some of them similar? Sure, but no two are exactly alike. Each one is as unique as the brief life it held. We are always going to be in a different place in our lives for each one. Some of them are “easier” than others. Some of them are hell, pure and simple. None of them are positive, and if you can spin a miscarriage into a positive, well, you just might be an infertility veteran like myself because I do that frequently.
I’ve grown a lot through our journey to parenthood. Physically, I’ve grown. Hormones wreak havoc on bodies, and the constant pregnant/not pregnant merry-go-round can be hard on a woman’s body. Personally, after every miscarriage, I jump back onto the Super Healthy Bandwagon. I walk and jog. I try to eat whole foods and very clean. I lose weight. I get pregnant again. I eat whatever will not make me sick. I have zero energy. I gain weight. The pregnancy ends… Rinse. Lather. Repeat. We won’t even touch the physical changes that fertility treatments bring about to “enrich” our lives. Ha. Clomid mood swings. IVF injectables and surgeries. There’s a reason why we say, “Feed a cold. Starve a Fever. Give (Clomid/IVF meds) ANYTHING IT WANTS!” (If you’re laughing, don’t worry- I can never not laugh at this one! It’s funny because it is true!)
Emotionally, I have grown. There is a certain maturity in growing up that allows us to better control our emotions, at least until something big happens. Going through the losses, I have grown to appreciate realness. Authenticity. Genuineness. It takes too much energy for me to be fake and to deal with people who pretend to be someone else. I now know that being myself, feeling whatever it is I am feeling (guilt, jealousy, giddiness, joy, love, sadness, anger, hope…) is what I need to feel. My feelings at any given time are valid. So are yours. I’ve learned to truly feel those emotions, to not bottle them up. Stuffing growing emotions into a jar and forcefully screwing it tightly shut will only make it explode. This does not benefit anyone, especially myself.
It takes emotional maturity to see a much-loved friend or family member announce their pregnancy and acknowledge that yes, I am SO HAPPY for them, yet at the exact same time, I am SO SAD for me. I’m not sad just for myself, but I’m also sad for my Mr. Right, our parents who so desperately wish for us to have a healthy baby, our sisters who so desperately want to be an aunt to a living, breathing ragamuffin, and our friends who want us to be happy and be the fantastic parents they know we will be.
It takes emotional maturity to brave that little home pregnancy test (red dye, obviously…never use the blue dye tests). It takes extreme courage to look at said little plastic test and see what the lines reveal. If it’s a BFP, then I immediately feel like shouting HALLELUJAH! OH, HAPPY DAY! (Sometimes I do!) And it never fails that after I see those two little pink lines that I immediately sit down and soberly think, “Welp. How are you going to go?” This emotional rollercoaster is intense enough to buck off even the most stoic, seasoned, strongest of folks. It takes a very unique, bold, special soul to be able to handle the infertility wild ride. To be strong yet vulnerable. To be happy yet sad. To be giddy yet terrified. To continue living while being at a total standstill in many ways. Juggling conflicting emotions simultaneously is a skill that doesn’t come easily.
There is an intellectual curve ball that is thrown to infertiles, especially ones like me who have a genetic condition and is the reason why we’re struggling to conceive a healthy ragamuffin. I have what is called a reciprocal balanced chromosomal translocation (BT for short). What this means is that part of one of my chromosomes has translocated, switched places, with another part of another chromosome. My specific BT reads 46XXt(1;3)(q44;q21). It looks like another language, right? If you’re a typical woman, your karyotype reads 46XX. If you’re a typical man, yours reads 46XY. That’s it. 46 chromosomes, including the sex chromosomes of X and Y. Super short, simple, and no problems to reproduce lively offspring, at least not at the chromosome level. For me, this means that it is very hard to conceive a baby that is healthy- healthy meaning a BT carrier like myself, or a “typical” noncarrier like my Mr. Right. Does your brain hurt yet? It is a whole new world! Genetics can be fascinating and terrifying.
Infertiles learn an entirely new vocabulary. *TTC. BFP/BFN. BD. DTD. DPO. CD. GC. DPT. OTD. OPK. LH. HCG. IVF. PGS. PGD. FET. SET.* Do you know any of these? If you do, chances are that you, too, have been in the trenches. I salute you, strong mama and daddy! I can’t personally see BD (“baby dance”) without thinking of the dancing lady emoji. Hahaha! It’s not uncommon to read in an infertility support group that someone is around ovulation time, and someone else comments to “get their BD on!” These are the hopeful times for infertiles. This is where we think, “Yes! Ovulation! Come on, healthy baby. Maybe this month is The Month.” I have learned that it truly is a miracle that any of us are here and that any babies are conceived and birthed in a healthy manner because there are a million things that have to be just-so for a baby to get here, earthside. I know more about baby-making than I ever thought would be possible. We have learned so many new words, terms, acronyms, procedures, theories, and have read research that constantly gets updated as science and medicine changes so quickly while on this journey. Several medical advances are available now that were not around even five years ago! This brings me hope.
I have grown to appreciate the doctors who are eager and excited about these new tests and procedures, and at the same time, I have also grown to appreciate the doctors who say, “Well, now, wait a minute. There is not enough research about that yet. I personally would/would not do x, y, z.” These doctors are both our cheerleaders and our confidantes. These doctors know what they’re doing, but I have also grown into being my best advocate. Doctors are awesome when they’re awesome, but they can be downright horrible when they’re not on top of their game. It’s up to me to be my own advocate. I must speak up, put my foot down, ask questions, do my research, and make my own decisions. No doctor will ever, can ever, tell you what to do in your situation. They are not in your situation; you are. Honestly, I go with my gut instincts. I still read as much as I can and get as many anecdotes as I can from friends in my support groups, still listen to my doctors and their suggestions, but only I (and Mr. Right) can decide on what is best for us and our future growing family. Doctors do not know everything, and that is a powerful thing to learn.
Ah…now we have made our way to Spiritual Growth. To grow spiritually, one must have experienced something that moved him or her to the core, to the soul. Infertility can certainly fit the bill. Anyone who has been on the infertility rollercoaster for even a second will tell you that yes, they’ve changed in some permanent way. There is a Before/After clause with infertility. Even if you had “only” one miscarriage. Even if you had “only” one year of trying to conceive. Even if you had “only” one consultation with a reproductive endocrinologist (the name of our fancy schmancy fertility specialist doctors). You’re changed. Sorry to say, but you now know more, think more, feel more, and are now spiritually more enriched.
Spirituality is a very personal thing. I have grown spiritually in spades. I think differently. I see things differently. I treat people differently. Everything has changed for me over the past six years. It is incredibly hard, as a Christian, to go through infertility and miscarriages and a stillbirth. We are taught from the womb that God gives babies. Well, I have not made those same assumptions of the great Supreme Being. Maybe He does not do that. Maybe He allows babies to be conceived, and it’s all science. Along this thought path, if God does not gift children, perhaps it is not He who takes them away. Maybe it’s simply science. I know in my particular case that with my abnormal chromosome arrangement, God did not say, “Anne is a strong and old soul, so I think I will throw her DNA out of whack to see how she does.” No…this is not how God functions. God is love. Jesus is love. The Holy Spirit is love. The Holy Trinity does not test us nor does it punish us. Bad things happen. Good things happen. $#!% happens. Science.
I rely on God to see me through the highs and lows of the rollercoaster. I feel Jesus with me in those freezing cold exam rooms, sitting on the table with a sheet over me, waiting on yet another ultrasound to tell us if our precious cargo still has a heartbeat. I know the angels are with me as I fitfully try to sleep after getting bad news (or after getting good news- see “emotional growth” above). I know my Spirit Babies are fluttering around my ears, buzzing me information about themselves or the situation or trying to boost my own spirit. I now meditate and practice clearing blocked chakras. I practice mindfulness and notice nature. Staying in tune with my body, mind, heart, and spirit is hard work, but it is worth it. I am worthy.
Infertility can be a bitch (pardon my French). However, in the vein of gaining strength through weakness, I feel like I am Superwoman after going through so much transformation. I feel like a new person, inside and out, and not in a bad way. There is a lot more I want to say, so it looks like a Part Two is in order. Until then, take care and be gentle with yourself. This road is full of potholes, but there are also many breathtakingly beautiful views around the twists and turns of the hilly journey.
*TTC: trying to conceive. DTD: do the deed. DPO: days past ovulation. CD: cycle day. GC: genetics counselor. DPT: days past transfer. OTD: official test day. OPK: ovulation predicter kit. LH: luteinizing hormone. HCG: human chorionic gonadotropin. IVF: in vitro fertilization. PGS/PGD: pre-implantation genetic screening/diagnostic. FET: frozen embryo transfer. SET: single embryo transfer.