This blog post is a little different then my typical writing style. It doesn’t tie up with a pretty bow, which I guess is actually quite ironic once you read it! My mind is going 100 miles a minute, and I hope that sharing pieces of my story and my thoughts along the way will make sense to parts of your heart. Many of you have have heard this story before, but there are parts I am sharing for the first time tonight. I hope you can hear my heart and find encouragement in the midst of all of it.
I feel like every time I have started writing lately, I have reminded you that I am a “Type A perfectionist”. Are you getting tired of me reminding you yet? Ha! I don’t think I can really accurately describe how true these words are. I find purpose in order. There is a process for everything, and if there isn’t a process – I am confident I can create one. Just ask my coworkers, I am the checklist queen! I am a rule follower to the core. I don’t like playing in “gray areas”. I prefer clear direction with black and white consequences.
While my perfect world is outlined with rules and regulations, the world is just not that way. However, that hasn’t stopped me from trying to make things fit into perfect boxes all around me. I have spent much of my life trying to control whatever I can around me. The fewer things around me that I could control, the more I have tried to set my own rigid expectations to live up to. If the world wasn’t going to be in control, I could at least control myself.
This has somewhat “worked” for most of my life. I lived in a rigid world I had created, and for the most part I was happy. I created a black and white world, making decisions that lived on one end of the spectrum or the other, there was no reason not to do anything else. Then, in 2011, I was diagnosed with Polystic Ovarian Syndrome (PCOS). PCOS is a complicated hormonal disorder that impacts nearly every patient differently. Basically, if hormones are involved – PCOS can mess with it. So, I took my doctors advice, read everything I could and started doing all the “right” things to address PCOS. I could control this.
The doctor had mentioned that PCOS can sometimes come hand in hand with “infertility” so I religiously tracked my cycles, my medications, my symptoms, my temperature and just about anything else that may impact our chances. I could control this. At the end of 2012, when we hadn’t become pregnant naturally, or by the help of some medications, we were referred to a Reproductive Endocrinologist (RE) for some more help. The RE quickly confirmed that we needed more medication to us help get pregnant, however he made it sound very obtainable. I could control this.
I took every test and followed every uncomfortable step the RE mentioned. I took supplements I could barely pronounce and drove Dan insane with my timing and charts. I set alarms and lived by checklists. I could control this. A few months after our first meeting with the RE, in July 2013, we learned we were pregnant. I had conquered infertility, and now I was finally going to do what I was made to do. I was going to be a Mom. In typical “Melissa Fashion”, I barely had finished screaming at the positive test before I was making lists. We had 9 months to prepare – and we were already behind.
The joy we felt with our first positive pregnant test was very short lived. Just two days after we took the test, I found myself at acute care fearing we were losing the baby. One week later after our positive test, I was wheeled into a surgical room to end my pregnancy. Our pregnancy was ectopic – growing in my fallopian tube – and could not continue. Well, at least that’s what the doctors thought may be going on. There was also a slight chance that I wasn’t pregnant and there was actually cancer growing inside of me. The sweet miracle baby we had prayed for was labeled an unknown mass, and I signed paperwork okaying the surgeons to do everything from a D&C to a total hysterectomy. The last thing I remember thinking before falling asleep before the surgery was “Please God, don’t let me have cancer. I can’t handle cancer.” While many of you reading this are probably thinking that is a pretty common thing to say, I wasn’t really worried about “handling” cancer, I was afraid I wouldn’t be able to control cancer.
Thankfully, the surgeon skillfully preformed my surgery and saved my life. I didn’t have cancer, and the doctors assured us we could get pregnant again. The days after surgery are a blur. I remember being surrounded by family, needing help to stand, and so many sad eyes. More than anything, I remember desperately needing to find control. Life was spinning way too quickly and I needed to get ahold of it. I started working from home just 1 week after my surgery and returned to work after just 3 short weeks. I told everyone I was fine. I needed to control this.
I tried to hold everything together by trying to fit my world into pretty boxes with bows. I spent my days overworking and my nights over-cleaning. In early Fall, we decided we would host Thanksgiving at our house and I went into overdrive. I remember one particular afternoon, I had decided to leave work so I could clean my already spotless house for the 100th time. While in the midst of scrubbing the baseboards, I decided it would only make sense to clean our heating vents. So I lifted the register off the floor, and started to scrub. Hot angry tears started falling down my face when I realized there was grime just out of my reach. Didn’t this house know I had rules to follow?
I had my first panic attack on Black Friday 2013. Well, honestly, I probably had several panic attacks before that day, but that day in 2013 was the first time it registered as panic to me. My mother in law, sister in law and I had ventured off to a local craft store with no agenda but to find treasures. We were in the middle of the aisles with multiple carts full of wonderful finds, laughing our heads off and enjoying each other when suddenly I could not breathe. We were in the ribbon row and I knew that if I didn’t start cleaning it my insides would implode. Each row was messier and harder to navigate. I was going to die in the craft store.
Thankfully, my mother and sister in law recognized my panic and helped me out. They quickly got my out of the store without much fuss (somehow magically buying all of our treasures) and home we went. After walking into the house, I went straight to the kitchen to start scrubbing something. I had to find something I could control. My mother in law followed me, grabbed me in a hug and simply said “You can’t keep doing this”. The next week, I realized she was right and I scheduled my first counseling appointment.
My therapist, Christine, was a warm, wise woman. She felt safe and comforting from the second I shook her hand. We settled in to her office and then she asked what brought me in. She didn’t push me to talk, but her eyes encouraged me. I remember taking a big breath and then word vomiting my displeasure about the lack of control I had in every situation in my life. After I talked at 100 miles per minute for about 20 minutes, she looked at me and simply said “How can I help you through this?” I was caught off guard by her question, I mean wasn’t it obvious? “I want tools to get through this. A ten step process. I need rules”. She looked me straight in the eyes and said “Grief simply isn’t linear”. I remember thinking “What kind of bull crap is that!? Everything has order and rules. Right?” Yet, for some reason I went back to see her the next week and the week after that.
As much as I feared it wouldn’t, the world didn’t stop turning on our first babies due date, and in April 2014, we went back to the RE for more treatment. Any control I thought I had all went out the window with that month of treatment. I had a horrible reaction to the medication that forced us to take a break. We spent the summer of 2014 in and out of hospitals trying to get my body to calm down after just one month of the medications. We spent that summer trying to figure out our next steps, and we clearly felt God say “Be still”.
As much as I hated it, “Be Still” meant no more medication, no more tracking, no more control. I didn’t understand what God was doing and I was angry. The one thing that made sense in all the madness was ripped out of my hands. It made zero sense. I didn’t know how to feel.
I continued to meet with Christine bi-weekly until we moved to Missouri in early 2015. Every appointment was hard. I wanted the grief of losing a baby to move in straight lines. I wanted every day to be better. I wanted steps to control things. I wanted to understand why God told us to “Be Still”. If I couldn’t control my health or infertility, I had to be able to control other things right? I wanted to know how I should act. How should Christians grieve? Christine was patient and kind. She reminded me often that life isn’t often black and white. She told me there often wasn’t a “right” way to do things. Every time Christine spoke, I wanted to both hug her and also run out of the room and never come back. She was so good for me.
When we moved to Missouri our lives took new twists and turns. We weren’t expecting to move to Missouri. In fact, we had bought a home in South Dakota with a plan to stay there our entire lives. I bought furniture specifically for that house. I had dreams for that house. However, doors opened in Missouri and we couldn’t ignore the opportunity. For the the first 30 days in Missouri, I was by myself. Everything moved so quickly, I had moved down to start my job and Dan had gone back to South Dakota to finish up our life there. That month was chaotic. I had never been alone for so long. One of our cats wasn’t eating (because he missed Dan so much), and I barely knew how to put gas in my car. Everything was out of control, but somehow I made it. I found new rhythms.
In late 2015, the symptoms of PCOS became so out of control we had to do something. So we found a natural doctor who helped me manage my hormones. The treatment was brutal. I drastically changed the way I ate and the supplements I took and it helped. Having control back felt wonderful. We weren’t actively trying to conceive a baby, but doing something to impact my health felt so empowering. This was something I could do. In March 2017, after working to regulate my hormones for over a year, we learned we were once again pregnant.
Our second pregnancy was different then our first. We had more time to settle in and really get excited about being parents. We were blessed to see the baby exactly where it was supposed to be, however we were never able to see the sweet babies heartbeat. For 4 weeks straight, we went in for weekly ultrasounds (sometimes twice a week). Sometimes we would see growth, and sometimes we wouldn’t. We had big conversations and prayed even bigger prayers. We had grown so much in our spiritual walk and we were so expectant of a miracle.
Finally, at just over 10 weeks, it was confirmed that we had lost our second baby. Our second loss was so different than our first. In some ways, we had grown accustomed to grief and it felt almost familiar. In some ways we knew what to expect. In other ways, everything felt new. I dealt with new emotions and new thoughts. I looked for the black and white way to deal with losing a baby. I had seen others around me grieve with hope and I wanted to do this the “right” way.
Yet again, the world continued to turn and we had to face our second baby’s due date. I wanted everything to be the same as the first loss. I wanted everything to match and be fair. However, it wasn’t the same. Our second baby was celebrated very differently than our first. The waves of grief continued to hit us and I continued to struggle with not having control. However, this time I had rules.
In early 2016, I had found several support groups that told me there were very specific ways to handle my thoughts and feelings regarding infertility. All of the groups were “Christian” and told me what grief was “good” and “bad”. Some of the groups had the same messages…. they taught me what grieving with hope looked like and how to manage my anger. Some of the groups told me anger was “negative” and that fear could never ever exist (unless my faith was small). Some groups told me that if read my bible every day, celebrated every pregnancy test, and went to church every Mother’s Day, I was “healthy”. If pushed my anger down and didn’t deal with those negative thoughts, I was praised. If I didn’t like those ideas, I could go to another group. That group would tell me that I had to read my bible everyday, but I didn’t have to celebrate any pregnancy test. In fact, I could hide away from the world so that I never saw a pregnant person.
Finding rules felt like freedom. Many of the groups were as different as morning is from night, so I simply had to choose which rules I agreed with. So I chose a group, and I jumped all in. I started leading an infertility group in my home and I was ready to share my “rules” with others. While there are many good things that came out of that season, the biggest thing I celebrated was that I had something to control again.
In the summer of 2018, I was diagnosed with a rare headache condition. Idiopathic intracranial hypertension (IIH) is a rare condition were a person’s body creates too much spinal cerebral fluid which creates pressure in the brain. That increased pressure can cause optic nerves to swell and, when the swelling is left untreated, it can cause blindness. This condition was scary and stole much of my year. It turned our world upside down. However, in November 2018, after praying some of the biggest, boldest prayers, a specialist confirmed that there was no evidence of disease. Not just that the disease wasn’t there currently, but that the disease was NEVER there. We celebrated so big, just as my rules had taught us.
However, in 2019, the headaches came back. The word “recurrence” has been the hardest word that I have heard in my entire life. Suddenly all the rules I had followed no longer made sense. Sure, I could read my bible every day, but what happened when reading literally hurt my eyes? Was I suddenly less? Sure, I could pretend I was happy with every pregnancy announcement ever, but what if I wasn’t? What if the announcements made me sad, wondering if I would ever be part of the club? What if my healing never came? What if I got pregnant, but it caused me to go blind? What if the thought of going to church on mother’s day made me have a similar panic attack as I did in 2013 in that craft store? Somehow, the other extreme didn’t make sense either. I couldn’t hide away and never see a pregnant person. I couldn’t ignore every baby shower. So I started to push my rules.
Maybe I didn’t have to live in the extremes of the support groups I had found? Maybe it was possible to be found in the middle? For the past year and a half, my questions have grown outside of the boundaries of questioning the infertility support group I was once a part of, to questioning so much more. I have grown so much, and I have learned there is life in the middle.
As I write, I have a headache. It may be related to IIH or it may just be a “regular migraine”. The doctors are still unsure, and I am tired of being a medical mystery. While I don’t understand why my head hurts, there are a lot of days I can live in hope, expectant that one day we will hear “no evidence of disease” once and for all. With that said, I am not a hero. There are days that are dark. Days that I just don’t understand. The reality is, most days land somewhere in the middle. Somewhere between active expectancy and active dread. I think that’s okay.
Nothing about our lives are linear. It’s okay to have good days, bad days and middle days. It’s very possible to celebrate every pregnancy announcement you see for weeks and then become sad about one. It’s okay to celebrate every baby, while also telling your best friend you are so tired of everyone getting babies but you. It’s okay not to understand what God is doing and it’s even more okay to ask Him big questions. It’s okay to be full of expectancy that you will be pregnant soon, but not be able to sit in church on mother’s day. It’s okay to know that your healing is coming, but also wonder if you have been forgotten.
I think I spent most of my life getting it wrong. By forcing myself to live in the black and white of rules, I have missed out on the mystery of the middle. I have forced myself to be either happy or sad, never recognizing that both can exist in one space. I have forced myself to believe that fear and anger are ugly “negative” emotions, that I have not fully grasped the change and goodness that can come out of those emotions.
I think God created us as fully dimensional humans to feel a lot of things at one time for a purpose. The dark days have purpose in Him. He has shown up and done big things in my heart. The good days also have purpose in Him. Those are the mountain days we all talk about. The days He does the things we tell generations about. However, the realty is that most of our lives are lived in the middle and I am learning to rest in that. I am finding Him in the middle.