November 7th, 2016
My dearest little bear,
Did you know that I knew you were coming to join us even before I was pregnant? I felt your presence, the happy, bubbly, excited presence just waiting to join our family. We kept telling you no, we weren’t ready yet. Mommy had to get her health in order and then heal. Then came the day we said we were ready and I knew you wouldn’t waste any time in hurrying on your way. Sure enough, 21 days later, I got that first positive pregnancy test at 3 ½ weeks pregnant with you. I felt sure you would be the little girl we really wanted, but the biggest thing was how strongly I felt you from that first moment. It was different, it wasn’t the same feeling I had when I got the first positive test for your big brother. I knew you were going to be one heck of a special kid and I felt your happiness at being on your way to join our family. That was the beginning of the thread tying you to me.
Then at 14 weeks, we found out you were a little boy. We were in shock, both your daddy and I thought you would be a girl, but after several days of processing and talking it over, we suddenly realized how absolutely exciting it was going to be to have two boys. Ender would get a brother, and we couldn’t wait for you to meet him. We love both of you so much, and as soon as we settled on your name, I felt reconnected and in fact felt an even stronger thread forming between you and I. You became my little bear, me your mama bear. I felt a deep love begin to run between your heart and mine, I would do everything in my power to make sure you were safe. Two weeks later, I woke up to blood, enough to destroy what I was wearing. My first thought after the initial gut wrenching shock was I am not going to lose you. I shakily called my midwife as I mentally ran through the list of symptoms. I was relieved I had no cramping, you started moving within a half hour of me waking up, and I didn’t even smell fresh blood. The midwife was reassured as well, but still wanted me to come in the next morning for an appointment and ultrasound. I was diagnosed with placenta previa and three subchorionic hematomas. But you were quite happy, flipping and kicking, I even felt a lot of your little but strong kicks. They told me we’d just monitor the placenta previa, but they weren’t worried about you. I felt relieved that you were okay, that’s all that mattered, I need my little bear.
One month later on Wednesday, October 26th, 2016, as I approached your 20 week ultrasound and a recheck of the placenta previa, I said goodbye to your daddy who left for a business trip the morning of my appointment. I dropped your big brother off at a friend’s house, and drove to my appointment. I felt positive and excited to see you again, and quietly laughed to myself wondering at how active you would be this time. I didn’t have to wait long before I was brought back to the ultrasound room. Sure enough, you started showing off your beautifully long fingers and strong kicks and as always had your hands tucked up by your face. You were head down and halfway through the ultrasound started burying your face against my back and just tucking yourself in. I noticed a change in demeanor from the tech, but didn’t really think much of it. I waited in the front lobby for my midwife appointment, and happily sent off texts to friends of your long and perfectly shaped feet as well as the good news that the placenta had moved and I was all cleared of placenta previa!
As I waited for the midwife to come in, I sent pictures to your daddy and gave him the good news that you were growing right on track! Then came the gentle knock on the door and a slightly traumatized looking midwife walked in. Sirens immediately went off in my head as all else stilled while I waited for the bomb she clearly was about to drop on me. She told me that they saw two very concerning things on the ultrasound and wanted to send me to see a specialist. She tried to explain the best she could about what they knew. You had extra fluid on the brain (which I mentally filed away as the thing they weren’t as concerned about) and you had what looked like a cystic tumor at the base of your spine. This was the big concern and they were worried about possible spina bifida. I tried to take that in, even as you kicked away in my belly, and suddenly the shock hit. Something really was wrong with you and they really were very concerned. It was one of those moments I’ve read about but never expected it to happen to me. It felt like a betrayal as you kept moving. I wanted you to echo this news, I wanted you to tell me something was wrong. But no, you kept moving, you kept telling me, “mama, I’m okay. I am okay.” 15 minutes later, as I tried to slow down the sobs, I managed to make it out the door and to the car. I needed your daddy so badly, but he was 2000 miles away. I called him and sobbed in his ear what the midwife explained to me and that I needed to go see a specialist ASAP. So many things raced through my mind as well as absolutely nothing. Driving back to pick your brother up, I felt like I barely had a grip on reality. I couldn’t reconcile something being wrong with how active and how healthy you seemed. I felt like I was in my worst nightmare and felt so lost. The few friends I contacted right away were trying to make sure I was okay and to let me know that they were there for whatever I needed.
Later that evening, I frantically called the midwife on call to make sure that you would be okay, I hadn’t even asked if there was now an increased risk to you. I couldn’t lose you. I couldn’t understand what was suddenly going on, but I knew without a doubt that you are my child and I would do everything I could in my power to protect you. The midwife reassured me that no there was no more risk to miscarrying you than there was before.
The next morning I called the specialist’s office and set up an appointment for the following Monday, October 31st. As I hung up, I realized that I had to really wrestle with something. I had to prepare myself for the worst. This was my way of being able to prepare myself for the “thing” that was coming. I had to decide whether I could do this, I had to accept that I could become a parent of a special needs child and was I willing to do that? I realized I had been prepared for this, and while I still couldn’t answer a solid yes or no, there was no way I would ever let something happen to you that was within my control. You are my little boy, you are my little bear, you are the one who has grounded me within myself more than anything else. You hold such a strong thread to my heart that to break it would utterly destroy me. Your daddy needs me, your brother needs me, and I need you.
I felt weird, still pregnant, still mama to Ender, but it all changed. Those doubts of what did I do that caused this kept trying to work their way in. I didn’t know anything about spina bifida and I refused to do research about it. I couldn’t risk overwhelming my already shaky mental state by reading horror stories and things that simply would not help. Your daddy got home three days later, and by that point, I felt like I could face what was coming on Monday. I didn’t know what would happen, but I knew we were in this together, your daddy and I would face this new obstacle together and we were going to make it. We would come out with you and Ender and be even stronger because of this.
You kept moving, it felt like your movements were only getting stronger, and with every kick and flip, it felt like a personal message to me, reassuring me that you are okay.
One week ago, my little bear, we found out the official diagnosis. I felt nervous but it was a nervous energy of just wanting to have answers. We were ready, we were confident that whatever was wrong with you we would be able to take it. During the ultrasound, the tech showed us exactly where the cyst was, and as I looked on the screen, my heart kind of sunk seeing the cyst really existed. She explained what we were looking at, and then showed us the fluid in your brain and explained that yes the two were connected but she was going to let the doctor explain exactly what that meant. She left the room and went to consult with the doctor before he would come in and explain in detail what was going on. I lay there on the ultrasound bed and your daddy sat in the chair, both of us nervously waiting for the official diagnosis. I felt you shift and move as you settled after the ultrasound. It took about 10 minutes before the specialist knocked on the door and walked in. He introduced himself and I felt immediately at ease. I could tell this guy knew what he was talking about and we could trust him. He sat down and immediately started explaining what they had seen on the ultrasound.
“Your little boy has something that we call spina bifida. Now, let me explain what that means and what we see.”
He went on to explain what spina bifida meant, and then specifically what he could tell us about your case. He told us this was just about best case, they prefer it one vertebrae off (I can’t remember if that was one more above or below where your cyst starts) but that this was a very reassuring prognosis. He was very happy to see how active you are and especially that your legs are so strong. I was so proud of you in that moment with how difficult you make ultrasound techs work to get your measurements. I know you’re a fighter and that gives me hope. The specialist answered more than half our specific questions before we could even ask them. Then when we asked more questions, he answered those to the best that he could and told us he was impressed that we were asking the right questions and thinking of things he would want us to consider. After he left the room to start getting the referral to Children’s set up for us and to get the kit for an amniocentesis for me, the tears filled my eyes as I realized this changes our entire life moving forward. It was helpful to hear that you aren’t in pain and won’t be (besides the surgery you have to go through after birth) and that this will always be your normal.
The specialist gave us so much hope and understanding of what we are going to be facing over the next 3 months before you get here, and what your life could possibly be like after your birth. I am so very grateful that you will have access to some of the best care available for spina bifida in this country. Fate knew we needed to be in Colorado when we moved a year and a half ago, and I couldn’t be more relieved to know that you will be brought into a world that is more than prepared to help you thrive. Daddy and I will be with you every step of the way, Ender will be eagerly waiting by your side to cheer you on. So many friends and family are already anxiously awaiting your arrival so they can pour their love and care on you. It makes me cry to know that you are already so very loved and your fan club is rapidly expanding as more people come alongside mommy and daddy and Ender to help support us and care for us. Because of you, my little bear, we have the community we have needed and you are restoring our faith in humanity.
You are our little bear, you are so special to us already, and you are so loved. Your daddy and I are so proud of how strongly you are fighting now. I cry just thinking about how I can’t wait to hold you and see you and for you to meet your daddy and big brother. Your daddy can’t wait to introduce you to virtual reality and give you access to the incredible world of computers and technology. I can’t wait to have both my two boys, my little bear and my little Ender monkey, in my arms.
The next roughly 15 weeks are going to fly by, and I can only hope that you will use these weeks to your advantage and continue to prove to the doctors just how strong you are.
I love you, little bear, with all of my being,