Today, March 11th, is bittersweet. This day last year was the hardest day of my life thus far. One year ago, Matt and I walked into the obgyn's office excited to find out the sex of our baby. We were so oblivious to the fact that the ultrasound that was going to be done wasn't only going to tell us the sex of the baby, but that it's main purpose was to check the well being of the baby. To make sure that everything was looking ok and that the baby was healthy and that everything was developing and working like it should. We, like all other soon to be parents, never imagined being told that our child had something wrong with them.
There are certain things that I can remember us saying during the ultrasound. I remember Matt asking about the shape of Jackson's head. I remember thinking that the ultrasound tech was focusing on Jackson's back more than any other part of his body. I remember Matt and I talking about the baby being a boy and that my family was wrong, we broke the "all-girl curse." I remember him saying that he couldn't wait to deliver the news. I remember being so extremely happy, so excited, so in love. We were sent out to the waiting room and I remember us looking at the ultrasound pictures. I started looking on Pinterest for ideas for the nursery. At one point, we started to question what was taking so long and decided that it must have been that they were so busy.
When we were taken back to the exam room, I remember us sitting in the room still on a happy high and talking. I remember the doctor walking in and my heart immediately sank. My OB/GYN is a very bubbly person and always has a smile on his face. When he entered the room, he was neither bubbly or with a smile. I knew...I just knew that something wasn't right. I think I tried to convince myself that maybe it was just an off day. He started talking about the baby and explaining that all of his organs were developing properly and were working like they should. He gave us all the good news first, followed by the "However, there was something found to be of a concern." That was the first time we heard the words "spina bifida." The first time that we realized that we were, in fact, not immune. The first time that I tried to convince myself that everything would be ok even though I knew nothing about spina bifida. The first of many, many tears to be shed.
I remember laughing at the fact that we declined having the genetic test and blood work done at the previous doctor's appointment. We were so positive that nothing would be wrong. We truly had the "it won't happen to us" mentality. I remember thinking that what was happening couldn't be real. I tried to convince myself that I was dreaming... I was in an awful dream and I couldn't wake up. "Please wake up, wake up Crystal!"
During the conversation with the doctor, the phrase "possible low quality of life" along with the word "termination" was thrown out there. We were given cold, hard facts. An opening in the spine - spina bifida. Myelomeningocele, the most severe form of spina bifida. Paralysis of the lower extremities. 'Lemon' and 'banana' signs - Chiari malformation, the brain is being pulled backwards - possible brain damage - hydrocephalus. Clubbed feet. We were confused, scared, and angry. How could this happen? What did I do wrong? I took my prenatal vitamins everyday. I tried to eat right. I cut out caffeine and ate more vegetables and fruit. I remember being so angry at God. I couldn't understand why he would do this to me, to us, to our unborn child.
My doctor tried to comfort us in the best way that he could. I remember being numb when he hugged me and explained that he was going to get us an appointment with the maternal fetal medicine doctor. I remember him saying that he was sorry to deliver such news. I remember him telling us to take as much time as we needed and I watched the door close. I immediately fell apart. I wanted to run away. I wanted to wake up from this awful dream. I remember Matt grabbing me and holding on to me while I officially broke-down. It's strange some of the things that you can remember even though they aren't relevant to your story. For example, I remember the woman in the next room telling her child that as soon as she was checked out by the doctor. they would leave and get some ice cream. When we left, we were given the information about our appointment with the maternal fetal medicine doctor. I was thankful that she would be able to see us the next day. I'm not sure I could have handled waiting longer than that.
I remember us going to the truck, still numb, not really talking, but still trying to comfort each other. We left the doctor's office and went to meet with Matt's mom. I remember us pulling into the parking lot at the Avenue, we tried to put a smile on our faces, but we failed. Matt's mom immediately knew that something was wrong. I remember Matt trying to fumble through telling her what was going on while trying not to completely fall apart. We were just suppose to tell her that the baby was a boy, not that he had something wrong. I remember calling my parents. They were anxiously waiting for the news. I held my calm long enough to tell them that there was a problem. I couldn't even get out that the baby was boy. Matt's mom took over while I sobbed and Matt rubbed my arm, trying to calm me. I remember Matt taking a picture of my belly shortly after we got home so that we could send it to my family. It was so extremely hard to act like everything was fine when deep down we were both so hurt and scared.
We had so many questions. What do you do when you have questions? You Google, of course! Yeah...wrong decision! I tried to find all the positive stories. I wanted to find the hope that everything was to be ok. I did find some positive, but I also found a lot of scary and negative. I kept telling myself that the doctor could have been wrong. He admitted that this was only the 2nd time he has ever had to make this diagnosis. He told us that he thought the lesion was low and that it didn't appear to be large, which, in his opinion, was a good thing. I hung on to his words. I prayed that he was wrong about Jackson having spina bifida, but if he wasn't wrong, I prayed that he was correct about the location and the size of the lesion. I prayed and I hung on to hope, but I was still so scared. Neither Matt nor myself slept very well that night. I did my own research while he did his own. We compared what we found, but still kept trying to tell ourselves that the doctor could have been wrong.
If I could go back in time I would tell myself that everything would be ok. I would tell myself to believe in the fact that Matt and I were chosen to be Jackson's parents. For whatever reason, Jackson was entrusted to us, to provide the best for him, to help him grow and succeed at everything put in front in him. I would go back and make myself take a deep breath. I would make sure that I didn't Google and would wait for true answers from a doctor. I would tell myself to not shed a single tear. Better yet, I would wish to fast forward to this moment, one year after diagnosis, to see how amazing Jackson is and what a wonderful life he is leading.
It hasn't been easy by any means. There have been a lot of stressful situations, but there have also been situations where we sit back and laugh at how scared and worried we were. On this day last year, we never could have imagined how beautiful and amazing life would become once our son was be born. No one told us how his smile would make the worst moment, the best. How his smile would light up a room and that his giggle would be contagious. No one told us that he would meet his milestones and that he is very smart and curious about everything around him. No one told us that we would celebrate every milestone, no matter how small. That we would jump up and down, cheer, and even cry when he sat up for the first time. No one told us how "normal" life would be. They didn't tell us that life would go on. That Jackson would be the best thing that has ever happened to us.
I leave you with this: Everyone wants the perfect baby. What is perfect? Perfect is your own definition.
<3
Crystal
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