Since 2005, I dread every May 7th. With it brings a rush of overwhelming loss. I miss her. I don’t have any words of wisdom, or insights on how to deal with death. I’ve known lots of people who have died, but I never imagined I would lose her so abruptly. They tell you life is fragile, but you never really know what they mean until you experience it. Such loss. Such sadness. So alone. Time doesn’t heal the deepest kinds of wounds, but it can numb them. Over the years I’ve processed my pain. I’ve dealt with it. I’ve tried to lift it up and let it go. I’ve found joy and laughter and hope that I didn’t think was possible after she left. I only indulge the ache once a year anymore. I don’t really have anything to say, except to raise my glass and toast the life of a beautiful friend. To commemorate her life and make it known that her absence is still deeply felt. I say again the last words I spoke to her in this world, “I love you.”
Same person with the same weights in different times of life. Please note that these photos are from a high risk, hyperemesis gravidarum pregnancy. It is NOT healthy to be this skinny while pregnant! Thankfully, the baby was born at 38 weeks, 8lbs 3 oz and perfectly healthy. Glory to be God! The point is why scales are useless in determining how much anyone should weigh.
The increased awareness about hyperemesis (thank you, Kate Middleton) is good. I wasn’t diagnosed until my second pregnancy, which is common. At the time of my diagnosis (2008), only 0.2% of pregnant women worldwide had been diagnosed. It simply wasn’t a common enough condition for non-specalists to be aware of. I spent the entire first pregnancy thinking I was a wimp. I didn’t get help soon enough during my second pregnancy because I had come to believe that throwing up blood and bile and having a stomach acid seared throat was all part of a normal pregnancy. I knew I needed to be stronger because women go through this all the time…or so I had been told. With my fourth pregnancy I had an OB who was familiar with and had treated HG before and it made a huge difference. He had a plan and for the most part, it worked. I was still very sick, I still had HG, but it wasn’t as overwhelming as it had been before. One of the consequences of all the recent publicity has been increasing confusion over what Hyperemesis Gravidarum really is. Extreme cases of morning sickness can last for the whole pregnancy, make you loose 10% of your body weight or land you in the emergency room, too, but that does not necessarily make it hyperemesis. More and more often, HG moms will find themselves talking to other women who have been diagnosed with HG, but their testimony doesn’t line up with the diagnosis. The problem misdiagnosis creates is two fold, but before I explain why, I think it is important to make it clear that this post is not about being a HG snob. Hyperemesis Gravidarum isn’t an elite club. I’m sure some women see it in that light, and while I have many personal faults, disease snobbery isn’t something I am particularly inclined to. I see HG as part of the curse. Some people struggle with fertility. Some people have horrible labors, I happen to have rough pregnancies. I also don’t want to belittle regular morning sickness. How horrible a condition is depends a lot on the experience of each individual and the unique circumstances surrounding it. I can still sympathize with stomach bugs. I still feel bad and want to help moms who are experiencing morning sickness. It is miserable. If anyone understands how debilitating and frustrating nausea and vomiting can be, I probably can. It’s horrible any time it manifests regardless of severity. Please don’t feel uncomfortable about sharing your morning sickness story. I don’t hear about someone else’s nausea and desire to one up them. HG just wasn’t that kind of experience for me. I do not want to compare horror stories to determine who was more sickly or who had it harder. That would be silly and perfectly fruitless. I strongly believe our trials are custom built for our sanctification. What I found incredibly challenging, wouldn’t necessariy be a challenge for you and vis versa. However, HG and morning sickness aren’t the same thing and using the titles interchangeably, can be quite damaging, which is why I seek to address the differences.
An inaccurate diagnosis misrepresents everyone who really has HG thereby compounding the confusion about what it is. Friends and family will hear how bad HG is and then see an HG mom taking a walk, eating at a restaurant with vibrant eyes and a rosy glow on her cheeks* and be tempted to think all this HG nonsense is just women being dramatic and weak. Add this to testimonies of morning sickness that were misdiagnosed as HG and it would be easy to doubt the severity of true hyperemesis gravidarum. Of course, thinking that way to begin with would be unkind, but that’s a different problem. The truth is, you will rarely see an HG mom outside of her home or hospital bed (and when you do, you can rest assured The Spoon Theory is in motion – meaning, you won’t be seeing her again for some time). With my first and most mild case of HG, I did work part time. When I was I was well enough to go in, I spent most of my time vomiting into plastic bags in the stock room (the smell of the bathroom at work made me vomit more and public toilets are the worst! TMI Alert: The depth of industrial toilets creates wicked backsplash!) or sitting statuesque behind my desk. Any movement makes HG worse, so sometimes you can recognize an HG mom by how little they move when they breathe. When I wasn’t at work, I was home sleeping off a phenergan induced coma, only waking to vomit every hour or so. I missed church for the better part of my pregnancies because if I had gone to church, more often then not I wouldn’t have been able to function the next day without an emergency rehydration. You usually won’t see an HG mom at the gym because she can barely shower without collapsing (from muscle atrophy and malnutrition), working out just is not an option. You usually won’t see an HG mom in the meat department of a grocery store because the smell of the fish and iron in the meat usually results in an episode. If you do see an HG mom in the grocery store, odds are she is inhibiting her sensory system in one way or another. I had to resort to getting my groceries delivered during my second pregnancy because I couldn’t go anywhere near a grocery store without vomiting. Too many smells, the lights were too bright, there was too much movement. Usually family or friends had to do the shopping. HG can sound a lot like psychological drama, but in true HG cases, no amount of misdirection, being tough, or willpower will make any difference. In fact, the times I tried the hardest not to “give in” to the nausea and vomiting, were the times my HG became most dangerous for baby and myself. It may sound ridiculous to someone who is not familiar with what HG is, but a good metaphor comparing HG and Morning Sickness is similar to comparing a wart with a cancerous growth. Yes, both are growths, and while warts aren’t any fun, you can’t treat them with the same methods as you would cancer. Imagine how cruel it would be to respond to someone who was explaining what it was like to go through chemo, that you had a wart once and it was awful. Nobody is arguing that warts or morning sickness is fun. Neither is a picnic, but they aren’t the same as having cancer or HG. In the same way that you can’t buy a cure for cancer OTC, you can’t treat hyperemesis gravidarum with crackers, ginger, seabands, beans, mint, dramamine, preggo pops, or other home remedies. Currently, Hyperemesis Gravidarum has no known cure and no known remedy. Experts, scientists and desperate mothers have been searching for answers for years. So far, they can usually treat the symptoms, but treatment is constant and cannot be stopped until emesis resolves on its own (often around 20 weeks or after the birth of the baby, in some cases, residual nausea continues for years after the pregnancy is over).
The second problem misdiagnosis causes is compounding the guilt HG mom’s already experience. The nature of the disease is a downward spiral. The longer you are sick, the longer you are malnourished, the less logical you become. Extreme guilt over having HG is very common. No matter how hard we try not to have HG, no matter how much we try to muscle through it, it won’t change the fact that we feel like failures. We can’t take care of ourselves, let alone our children or spouse. I mentioned before not being able to shower alone and sadly that isn’t an exaggeration. Ben had to make a new rule about me not being allowed bathe unless he was home, following an incident in which I nearly collapsed in the shower and didn’t have the strength to climb out of the tub. Nobody was home so I waited, sitting in the bathtub for nearly two hours before he came home and could help me. I felt so useless, I felt like baggage, which for a mom, means I felt guilty. I am so thankful for friends and family. They prayed for me, encouraged me to stay joyful and helped protect me from guilt through helping pick up the slack around the house, with providing meals and caring for my children. During my fourth HG pregnancy, a dear friend came by my house several times to essentially be me for the day. She cared for the kids, she cooked, she cleaned. That evening my husband said it was almost like I was back. Don’t get me wrong, Ben did a terrific job of picking up my responsibilities, doubling up on parenting duties and keeping everyone fed, but there is no substitute for having 2 people to carry the weight of a 2 person work load. Having HG will literally put a woman out of order. I’m told by my family and friends that it felt like I went away or disappeared for 40 weeks. An HG mom can not keep up with her responsibilities and additionally, incurring massive medical bills will to burden her husband will make her feel even more guilty. I had to learn to allot some of my strength (or metaphorical spoons) towards controlling my guilt. It would eat me right into bitterness and self-hate if I let it. For moms who have had or do have HG, I found that where guilt was, anger was nearby and we need to beware of it. We feel robbed of what is esteemed as the most exciting and glorious part of womanhood. It is easy to forget that we aren’t entitled an easy pregnancy any more then we are entitled free money. I found it helpful to stay aware of my condition and emotional temptations (so I could help keep them in check), but not dwell upon them. Look for things that make your world beautiful, make yourself a student of joy**. Be fierce about guarding what path your thoughts go down. Some women only experience HG for the first 20 weeks, or only on and off throughout the pregnancy, which is admittedly miserable, but can be more manageable in mild to moderate cases. Respite helps. With cases that last the entire pregnancy, it is even more important that the mom has a stable support team to help her stay logical and focused. HG moms need at least one health advocate to help guide her decisions. Remember that malnutrition has mental side effects as well as physical. Sadly, there are a lot of HG moms who abort their babies to make the nausea and vomiting stop. They loose sight of prize and are enveloped in the here and now. Living in the moment can be overrated.
If you know someone who is going through HG, it is a gift to her not to compound her guilt with doubt or critique, but to pray for her. Pray that she is able to stay focused and joyful in this time of prolonged suffering. If you have the resources and desire, ask her husband (not her, she probably already feels guilty about needing the help) what would be helpful. Maybe even offer to organize regular meals for her family, childcare, and cleaning up so her husband can focus more on his wife and kids and less on making phone calls and scheduling. If you don’t have the resources to help out in a physical way, never underestimate the effect of praying for and telling an HG mom that you are praying for her.
My battle with hyperemesis gravidarum is over. We cannot have anymore biological children. And yes, as I watch my last baby grow up too quickly, I am tempted to be sad. I am not even 30 yet. I love my kids and I love taking care of them. I love being a mom and would welcome having more children, but I am thankful for the children I have. Sometimes, I can even be thankful for having had hyperemesis because I learned some good lessons through it. Sometimes I can step back and look at myself and I only see a shadow of the person I was before I went through roughly 1,000 days of starvation. I don’t like the person I was before, but sometimes I can catch a glimpse of the a more improved Abra I am on the road to becoming. I can look at my children and know that each of them is a gift from God. I don’t deserve my kids and I didn’t earn them, they are a gift. Given my history, I have no reason to believe that God won’t continue to bless us in ways I haven’t even thought of yet, and that, is very happy thought.
*HG Mom tip: eyedrops and blush! Get a compact lighted cosmetic mirror and keep it next to your bed with your makeup bag. Even if you are on bedrest, it can be emotionally helpful to still look somewhat pulled together.
**But laughing so hard you can’t stop throwing up and end up needing another iv is not recommended, trust me, but if you have to choose between the two, it is still better then crying our way to needing an iv.
Ophelia’s school had a Christmas concert last night and her class performed The Gingerbread Man today for assembly. They did an incredible job! I am so proud of my little black bear!
(and I know I’m way behind on posts and, oh you know, forgetting to post on Jude’s birthday, but I was having too much fun enjoying the day and totally spaced documenting it! Maybe I can dig up a photo or two.)