You would think I would have marked this day on some calendar, or perhaps kept a mental engraving of sorts lodged in this brain of mine, but no. I must have blocked it out. I know it was October because that falls six months after Tatiana was born, which is more or less when Tatiana would have had her six month follow up with the NICU. I do remember it was a beautiful day in October, not too hot, not too cold. The trees were colored just right. I knew the moon would look gorgeous that night.
It was just the two of us. Me. Tatiana. On our way to the hospital. My husband was somewhere in the Southwest - he’s a long haul truck driver. My four year old was with the sitter. I naively showed up thinking “this appointment is so not a big deal.” I mean, really, I have seven siblings and I’m the oldest, so I am well aware that everyone develops at their own pace. I didn’t think I had much to be concerned about. She was crawling, rolling, slobbering, doing what babies do.
Here we go. Tatiana is very particular. Both of my daughters are. I always say they are my little divas. Well, Tatiana was having a little diva day and was not in the best mood. I’m sure somewhere in her memory she connected the smell of the hospital with so many things she would rather forget. Yes, I’m one of those – you know, those people who think babies are keenly aware of their surroundings and conscious of more than we would like to give them credit for. Well, since she didn’t have her full diva nap, I knew this appointment was about to get slightly more challenging than I anticipated.
We were directed into a hospital room converted into a special room for observing and assessing developmental milestones. The nurse practitioner was very warm and made me feel a little more at ease – especially since I remembered her from the NICU and she was one of the folks I felt was always on top of her duties making us feel comfortable, looking out for Tatiana, etc. She started asking me all these questions: Is she rolling left or right? Can she roll over? Do you put her in an activity saucer? Does she stand? Does she reach for her food? Can she grasp objects?
I know. None of these questions seem like a big deal. Well, I felt myself starting to sweat. I felt like a terrible parent. How could I not know the answers to some of these questions? Why was I being so protective? Was I supposed to give her cheerios and treats? Was I supposed to force her to stay in an activity saucer even though she seemed to hate being confined into a space? How was she supposed to bounce if her feet were too short to reach the ground? Was I delaying her development? I felt the panic start to set in.
More questions: Does she always fuss like that? Is it difficult to console her? Does she always cross her legs?
What?! Does she think something is wrong? I see the look of concern on her face.
Then we get to the topic of this tethered cord. At the time, I didn’t know much about that, except that I hoped it wasn’t an issue. Tatiana had an MRI in August following one of her surgeries to see if she had a tethered cord. All I knew then was that there was a possibility that she had a tethered cord and that whatever that was might have an effect on her central nervous system and bodily functions.
I know I asked something along the lines of what I should be concerned about. I know she meant well, and I appreciated that she was very candid with me, but I was definitely not prepared for what I was about to hear.
She may never walk.
I held my breath and prepared to exhale. I stood there holding Tatiana, and responded very calmly, Oh. Okay.
Tatiana was still being a little diva, making a fuss. Maybe she was objecting. I don’t know.
The nurse asked if I needed a minute. I did. She left the room. I sat down. I held my baby tightly, close to me. I took a few deep breaths. I tried not to cry. I had to be strong. A few tears escaped me. Okay. It’s okay. Another breath. The kind that you struggle with, shaky, feeling like you don’t have enough space in your lungs to even breathe.
The nurse came back in. She told me she was going to follow up with Tatiana’s general surgeon to express her concerns. I thanked her, and I walked out to the car with my head held high, as calm as I could be. I put Tatiana in her car seat. I got myself in the car and I buckled my seat belt. I held on to the steering wheel as tight as I could. And I cried. I cried from the depths of my soul, asking myself why, trying to understand, trying not to imagine all of her “nevers.” I felt so defeated and angry.
I called my husband. For a while, I couldn’t speak. Finally, I found the words to tell him what the nurse practitioner had just told me. I wondered if it was harder for him, having to be away, almost isolated, having to fully absorb it all. He was quiet for a moment, and when he finally did speak I heard fear in his voice but his words were accepting – not of the situation, but of the opinion and that it was just that: an opinion.
We both wondered if the system was set up to force us through a constant state of turmoil. We would get through a challenge, and feel a sense of peace and acceptance, only to be slapped with yet another round of difficulties. It felt like we were the objectives of a twisted obstacle course; right when we could get back on our feet, we were being knocked back down, tested to our limits – physically, emotionally, financially. I’m sure the medical professionals thought they were doing us a favor by giving it to us in spurts, making it manageable, but, from our perspective, it felt like torture, a vicious test of faith.
I felt so emotionally heavy when I left the parking lot that day, and for so long afterward.
I remember I shared this information with my family and a few close friends. It was their optimism and faith that got me through that time, along with my husband’s knack for linking the practical to what may seem insurmountable. The humor, the words of encouragement, the stories, the alternate possibilities from what I had imagined in that moment made it easier to accept our reality and to hope for other outcomes. In the end, it’s that hope that keeps us afloat.
It was just the two of us. Me. Tatiana. On our way to the hospital. My husband was somewhere in the Southwest - he’s a long haul truck driver. My four year old was with the sitter. I naively showed up thinking “this appointment is so not a big deal.” I mean, really, I have seven siblings and I’m the oldest, so I am well aware that everyone develops at their own pace. I didn’t think I had much to be concerned about. She was crawling, rolling, slobbering, doing what babies do.
Here we go. Tatiana is very particular. Both of my daughters are. I always say they are my little divas. Well, Tatiana was having a little diva day and was not in the best mood. I’m sure somewhere in her memory she connected the smell of the hospital with so many things she would rather forget. Yes, I’m one of those – you know, those people who think babies are keenly aware of their surroundings and conscious of more than we would like to give them credit for. Well, since she didn’t have her full diva nap, I knew this appointment was about to get slightly more challenging than I anticipated.
We were directed into a hospital room converted into a special room for observing and assessing developmental milestones. The nurse practitioner was very warm and made me feel a little more at ease – especially since I remembered her from the NICU and she was one of the folks I felt was always on top of her duties making us feel comfortable, looking out for Tatiana, etc. She started asking me all these questions: Is she rolling left or right? Can she roll over? Do you put her in an activity saucer? Does she stand? Does she reach for her food? Can she grasp objects?
I know. None of these questions seem like a big deal. Well, I felt myself starting to sweat. I felt like a terrible parent. How could I not know the answers to some of these questions? Why was I being so protective? Was I supposed to give her cheerios and treats? Was I supposed to force her to stay in an activity saucer even though she seemed to hate being confined into a space? How was she supposed to bounce if her feet were too short to reach the ground? Was I delaying her development? I felt the panic start to set in.
More questions: Does she always fuss like that? Is it difficult to console her? Does she always cross her legs?
What?! Does she think something is wrong? I see the look of concern on her face.
Then we get to the topic of this tethered cord. At the time, I didn’t know much about that, except that I hoped it wasn’t an issue. Tatiana had an MRI in August following one of her surgeries to see if she had a tethered cord. All I knew then was that there was a possibility that she had a tethered cord and that whatever that was might have an effect on her central nervous system and bodily functions.
I know I asked something along the lines of what I should be concerned about. I know she meant well, and I appreciated that she was very candid with me, but I was definitely not prepared for what I was about to hear.
She may never walk.
I held my breath and prepared to exhale. I stood there holding Tatiana, and responded very calmly, Oh. Okay.
Tatiana was still being a little diva, making a fuss. Maybe she was objecting. I don’t know.
The nurse asked if I needed a minute. I did. She left the room. I sat down. I held my baby tightly, close to me. I took a few deep breaths. I tried not to cry. I had to be strong. A few tears escaped me. Okay. It’s okay. Another breath. The kind that you struggle with, shaky, feeling like you don’t have enough space in your lungs to even breathe.
The nurse came back in. She told me she was going to follow up with Tatiana’s general surgeon to express her concerns. I thanked her, and I walked out to the car with my head held high, as calm as I could be. I put Tatiana in her car seat. I got myself in the car and I buckled my seat belt. I held on to the steering wheel as tight as I could. And I cried. I cried from the depths of my soul, asking myself why, trying to understand, trying not to imagine all of her “nevers.” I felt so defeated and angry.
I called my husband. For a while, I couldn’t speak. Finally, I found the words to tell him what the nurse practitioner had just told me. I wondered if it was harder for him, having to be away, almost isolated, having to fully absorb it all. He was quiet for a moment, and when he finally did speak I heard fear in his voice but his words were accepting – not of the situation, but of the opinion and that it was just that: an opinion.
We both wondered if the system was set up to force us through a constant state of turmoil. We would get through a challenge, and feel a sense of peace and acceptance, only to be slapped with yet another round of difficulties. It felt like we were the objectives of a twisted obstacle course; right when we could get back on our feet, we were being knocked back down, tested to our limits – physically, emotionally, financially. I’m sure the medical professionals thought they were doing us a favor by giving it to us in spurts, making it manageable, but, from our perspective, it felt like torture, a vicious test of faith.
I felt so emotionally heavy when I left the parking lot that day, and for so long afterward.
I remember I shared this information with my family and a few close friends. It was their optimism and faith that got me through that time, along with my husband’s knack for linking the practical to what may seem insurmountable. The humor, the words of encouragement, the stories, the alternate possibilities from what I had imagined in that moment made it easier to accept our reality and to hope for other outcomes. In the end, it’s that hope that keeps us afloat.
