Getting the Diagnosis: A Whirlwind of Emotions (Including Anger and Guilt)
I've been thinking a lot lately about the day we found out about Olivia's diagnosis. The day we got the Spina Bifida and Hydrocephalus diagnosis was probably the most emotional day in both of our entire lives. I want to share with you how we got through that moment and where we are today.
As I started to connect with a few others just starting their diagnosis journey (varying diagnoses at varying stages, not just SB and not just during pregnancy), I felt it important to be totally open and honest about all the emotions, so other parents know they are not alone. It can be such a lonely journey initially, but it doesn't have to be.
I also think it is important to tell you that this post is not meant to make you feel bad. Or make you feel good, really. This is just what it is - our diagnosis story. I think anyone's diagnosis story is just as important as the birth story.
Our Diagnosis Story:
We went in for the gender check at 16 weeks, a day after our wedding anniversary. They pulled up the screen and told us it was a girl. Russell and I were excited and surprised! (We really thought it was going to be a boy, haha.)
Then the sonographer said she needed to check on something and came back in and told us about "the banana" she had found, the shape of the cerebellum at the back of the brain. Our doctor came in and said our baby girl had Spina Bifida and Hydrocephalus. We both started crying and the doctor asked "Do you know what that means?" and we both said "No", and we nervously laughed at the silliness of our tears, since we had no idea what we were crying over. We didn't know what it was but we knew that it was something big or they wouldn't be talking to us like this. Our Dr. is amazing and so compassionate but did need to have the conversation about whether or not we wanted to continue with the pregnancy. He informed us that a very high percentage of people that receive this diagnosis terminate the pregnancy. We had a few weeks to decide but we needed to make a decision about what we wanted to do.
The next thing we knew we were being ushered into a genetic counselor's office a few rooms down in our doctor's office (we had the HUGE benefit of already being at a high-risk obstetrician office purely by coincidence). She explained what Spina Bifida and Hydrocephalus meant. She explained the risks of bringing the baby into the world. She again reiterated we had a choice to make about the pregnancy.
As we are trying to process all of this, I was worried about something else at the same time. I had just started a brand new job the month before, so then I had to call my brand new boss, all while sobbing into the phone, to tell her I wasn't able to return back to work. She knew, as did the rest of my team, we were going for a gender check. When she heard me crying she did an amazing thing and told me to take all the time I needed - I will NEVER forget that moment and the support my new boss provided.
After speaking with the genetic counselor, Russell and I went to the parking lot. I sat in the driver's seat, with my feet touching the parking lot asphalt, and he crouched down on the ground at my feet, bracing his back against the car door. We both just sat, shocked. Holding hands and crying.
In that moment, out in the parking lot, we decided our baby girl needed a name. She needed a name, not to just be some nameless baby we were making decisions about before she was born. We went through all the names we had planned and none seemed to fit. We kept throwing out names and then one of us said "Olivia". That was it. By naming her, she became our baby and a member of the Smith family.
Then I decided I wanted her to have my middle name - Michelle. I feel that I am strong and want her connected to me in name. Also, St. Michael is her patron said and he is a bad ass - so she would have a double whammy of Mom and St. Michael the archangel.
As the day progressed, shock grew to several other emotions. No one chooses to have your baby born "unhealthy".
Why did we have to be going through this?
Why did everyone get to have a healthy baby?
Why isn't our baby healthy?
THIS ISN'T FUCKING FAIR!
What did I do wrong?
How will her life be affected?
What are we going to do?
The rest of that day is a blur, as vivid as the first portion was. We went to church at some point and sat there in the pews and cried. We cried a lot. We worried. We were angry. We were sad and excited at the same time.
We went home that day and decided to start reaching out to specialist in San Diego who could tell us more about SB and Hydrocephalus. That is where our journey started.
So then what happened?
So then what? I am sure some of you are curious. Did we go right from that to where we are today? Was it an overnight switch? From angry and hurt parents to advocates of SB and Hydrocephalus and positive (most of the time) supporters? HELL NO!
I am going to say something now that is widely unpopular to share - but I also think it is SO important because I know I am not the only person that has felt this way. But reader beware - it is not going to make you feel warm and fuzzy.
I watched all my friends (and "facebook friends") get pregnant with healthy baby girls and boys and it HURT. It hurt so badly. I watched celebrities and strangers and people obviously not taking care of themselves have healthy babies. I read stories of healthy babies being put up for adoption or being abandoned. All of it made me ANGRY.
Not angry like "I hope you get a sick baby" dear lord NO. But anger out of jealousy. Why us? Why did our child have to go through this? Why did our sweet baby have to be put through a life like this? Why is their child healthy? No one wants their child to have to overcome hurtles from birth - no one.
It never meant I didn't want to hear about your babies or see your pictures, please know that, it just hurt. That's all. It hurt. (Actually, seeing your pictures did make me smile - even though they hurt. I know, confusing huh? Imagine being in my head.)
This pain lasted pretty much my entire pregnancy. As we gather more and more information on SB our excitement built and our fear (sort of) subsided. But it was a very very very slow process.
Olivia's Birthday
Then came Olivia's birthday. On the day Olivia was born our diagnosis story ended and our parenting journey began. Starting with the first second of hearing our baby girl's cry and meeting her (something I wasn't sure I would even be able to do on her birthday), our feelings of anger and hurt slowly melted away. She was perfect, SB and all! After meeting her we pretty much instantly began the process of healing. Our immediate and immense love for her overpowered everything, except fear. The fear was still there, just lessened.
Olivia's birthday and first few weeks of life to be continued in a later post.....
In sharing this, I hope you or someone you know, can find peace in the fact that these struggles are not just unique to Spina Bifida or any other diagnosis. I have heard this from people that have tethered cord diagnoses, had miscarriages, not been able to get pregnant, and so many more paths on the journey to parenthood. Sharing the journey in life allows us to connect and not be alone.
If you ever need support or someone to talk to about these - or any other feelings - you have a friend in me. I don't care if we have never met. Text, call, FB message me and we can chat. YOU ARE NOT ALONE and I WILL NOT JUDGE YOU.
Love to you all! Thanks for sharing with me today.
Be Happy. Laugh. Enjoy Chaos.
As I started to connect with a few others just starting their diagnosis journey (varying diagnoses at varying stages, not just SB and not just during pregnancy), I felt it important to be totally open and honest about all the emotions, so other parents know they are not alone. It can be such a lonely journey initially, but it doesn't have to be.
I also think it is important to tell you that this post is not meant to make you feel bad. Or make you feel good, really. This is just what it is - our diagnosis story. I think anyone's diagnosis story is just as important as the birth story.
Our Diagnosis Story:
We went in for the gender check at 16 weeks, a day after our wedding anniversary. They pulled up the screen and told us it was a girl. Russell and I were excited and surprised! (We really thought it was going to be a boy, haha.)
Then the sonographer said she needed to check on something and came back in and told us about "the banana" she had found, the shape of the cerebellum at the back of the brain. Our doctor came in and said our baby girl had Spina Bifida and Hydrocephalus. We both started crying and the doctor asked "Do you know what that means?" and we both said "No", and we nervously laughed at the silliness of our tears, since we had no idea what we were crying over. We didn't know what it was but we knew that it was something big or they wouldn't be talking to us like this. Our Dr. is amazing and so compassionate but did need to have the conversation about whether or not we wanted to continue with the pregnancy. He informed us that a very high percentage of people that receive this diagnosis terminate the pregnancy. We had a few weeks to decide but we needed to make a decision about what we wanted to do.
The next thing we knew we were being ushered into a genetic counselor's office a few rooms down in our doctor's office (we had the HUGE benefit of already being at a high-risk obstetrician office purely by coincidence). She explained what Spina Bifida and Hydrocephalus meant. She explained the risks of bringing the baby into the world. She again reiterated we had a choice to make about the pregnancy.
As we are trying to process all of this, I was worried about something else at the same time. I had just started a brand new job the month before, so then I had to call my brand new boss, all while sobbing into the phone, to tell her I wasn't able to return back to work. She knew, as did the rest of my team, we were going for a gender check. When she heard me crying she did an amazing thing and told me to take all the time I needed - I will NEVER forget that moment and the support my new boss provided.
After speaking with the genetic counselor, Russell and I went to the parking lot. I sat in the driver's seat, with my feet touching the parking lot asphalt, and he crouched down on the ground at my feet, bracing his back against the car door. We both just sat, shocked. Holding hands and crying.
In that moment, out in the parking lot, we decided our baby girl needed a name. She needed a name, not to just be some nameless baby we were making decisions about before she was born. We went through all the names we had planned and none seemed to fit. We kept throwing out names and then one of us said "Olivia". That was it. By naming her, she became our baby and a member of the Smith family.
Then I decided I wanted her to have my middle name - Michelle. I feel that I am strong and want her connected to me in name. Also, St. Michael is her patron said and he is a bad ass - so she would have a double whammy of Mom and St. Michael the archangel.
As the day progressed, shock grew to several other emotions. No one chooses to have your baby born "unhealthy".
Why did everyone get to have a healthy baby?
Why isn't our baby healthy?
THIS ISN'T FUCKING FAIR!
What did I do wrong?
How will her life be affected?
What are we going to do?
The rest of that day is a blur, as vivid as the first portion was. We went to church at some point and sat there in the pews and cried. We cried a lot. We worried. We were angry. We were sad and excited at the same time.
We went home that day and decided to start reaching out to specialist in San Diego who could tell us more about SB and Hydrocephalus. That is where our journey started.
So then what happened?
So then what? I am sure some of you are curious. Did we go right from that to where we are today? Was it an overnight switch? From angry and hurt parents to advocates of SB and Hydrocephalus and positive (most of the time) supporters? HELL NO!
I am going to say something now that is widely unpopular to share - but I also think it is SO important because I know I am not the only person that has felt this way. But reader beware - it is not going to make you feel warm and fuzzy.
I watched all my friends (and "facebook friends") get pregnant with healthy baby girls and boys and it HURT. It hurt so badly. I watched celebrities and strangers and people obviously not taking care of themselves have healthy babies. I read stories of healthy babies being put up for adoption or being abandoned. All of it made me ANGRY.
Not angry like "I hope you get a sick baby" dear lord NO. But anger out of jealousy. Why us? Why did our child have to go through this? Why did our sweet baby have to be put through a life like this? Why is their child healthy? No one wants their child to have to overcome hurtles from birth - no one.
It never meant I didn't want to hear about your babies or see your pictures, please know that, it just hurt. That's all. It hurt. (Actually, seeing your pictures did make me smile - even though they hurt. I know, confusing huh? Imagine being in my head.)
This pain lasted pretty much my entire pregnancy. As we gather more and more information on SB our excitement built and our fear (sort of) subsided. But it was a very very very slow process.
Olivia's Birthday
Then came Olivia's birthday. On the day Olivia was born our diagnosis story ended and our parenting journey began. Starting with the first second of hearing our baby girl's cry and meeting her (something I wasn't sure I would even be able to do on her birthday), our feelings of anger and hurt slowly melted away. She was perfect, SB and all! After meeting her we pretty much instantly began the process of healing. Our immediate and immense love for her overpowered everything, except fear. The fear was still there, just lessened.
Olivia's birthday and first few weeks of life to be continued in a later post.....
In sharing this, I hope you or someone you know, can find peace in the fact that these struggles are not just unique to Spina Bifida or any other diagnosis. I have heard this from people that have tethered cord diagnoses, had miscarriages, not been able to get pregnant, and so many more paths on the journey to parenthood. Sharing the journey in life allows us to connect and not be alone.
If you ever need support or someone to talk to about these - or any other feelings - you have a friend in me. I don't care if we have never met. Text, call, FB message me and we can chat. YOU ARE NOT ALONE and I WILL NOT JUDGE YOU.
Love to you all! Thanks for sharing with me today.
Be Happy. Laugh. Enjoy Chaos.
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