Friday, July 11, 2014

A long overdue guest blog: A Brutally Honest Look at Diagnosis Day...One Year Later

For the last year, I have been begging my best friend to start her own blog. [Tangent: Yes...in addition to putting up with my grade-A brand of BS for the last 20 years,  she is a fantastic writer. ] Yesterday, she called me as she always does to tell me that she was feeling lots of feelings regarding a really huge milestone/anniversary and wanted to trap them all on paper and share them. Because she learned not to listen to me years ago, and doesn't have a blog, I decided to loan her mine for the day.  She's not promoting anything or trying to get you to shop at her etsy, she just needed a platform, and thankfully I have a little corner of the internet to share. Despite the fact that I am generally not huge on "mommy bloggery" (I'm not a mom and I can't relate on that level.), I think you'll appreciate her honesty (and plus there are some REALLY cute baby pictures near the end if you are a slow reader).  Take it away, Kristen...

One year ago today, I was 20 weeks pregnant. My husband and I were anxious to know what was growing in my bely...a little girl or a little boy? What would our lives become: football in the fall or pink tutus? Everything had been going well. From the moment I saw the second line on my home pregnancy test, I knew it was a boy. I had no doubts. I didn't care one way or the other, but I had the strongest gut feeling that we would be having a son.



Early in the pregnancy, my husband and I discussed whether or not to go through the early genetic testing. We decided against it. Neither one of us had any heredity anomalies between our families. Looking back, I wonder if our disinterest was due to fear. What if something was "wrong"? What would we do?  I don't think we were willing to risk being put in the position to make a decision like one that could potentially come from a frightening diagnosis.  So on the day we walked into our 20 week anatomy scan, all we were really concerned about was pink or blue?

I laid on the table and the ultrasound tech squeezed warm jelly all over my round stomach. We couldn't wait to know.  She started the scan and thoroughly examined every square centimeter of the tiny baby from head to toe. Unfortunately, the baby's position was less than ideal for a completely accurate gender reveal. The tech tried every trick up her sleeve and was finally able to get a little glimpse. She was 90% sure it was a girl.

She then wiped off m belly as she concluded the 45 minute detailed ultrasound. She exited the room to check with the doctor before we could leave as we had previously discussed before she began the exam.

We sat in shock. A little girl. I could not believe it. My mother's intuition was already faltering, but I was happy regardless.  My husband, however, was visibly disappointed. He had wanted a boy, a son to share his passion for sports with. I think a lot of men feel this way in the beginning. Girls are terrifying. Have you seen ow short the skirts and shorts these teen girls are wearing nowadays? We talked a little and absorbed our new information. A sweet girl on the way. Ok. We could do this.

We waited for the tech to return so we could leave. We had a mass of friends and family who were on pins and needles all day awaiting the baby's gender. We waited...and waited...and waited even more.

Finally, the door cracked letting in the bright light from the hallway into the tiny dark room we were in. A doctor entered, one that we had never met on prior visits. She introduced herself as a high risk pregnancy specialist and quickly got to the reason she was there. She began with explaining our baby had a congenital heart defect.

All I heard was: heart defect....heart failure...open heart surgery...and infancy. I immediately began weeping in fear. My baby has what?!? She explained it thoroughly and clearly, but I couldn't comprehend. I gripped my husband's hands tightly as if it would make this less real, like the strength of my grasp would make this news bearable. Tears poured down my cheeks, but she didn't stop there.

She then explained that the heart defect my tiny 20 week old fetus had was commonly associated with other genetic anomalies. It wasn't over, but I felt I couldn't take anything more. I was done. I heard: chromosome....disorder...and the words Down Syndrome. I couldn't breathe.

I cried even harder and now and lost my last shred of composure. I'm certain my cries were heard all throughout the long hallway of ultrasound rooms and waiting areas filled with other expectant mommies-to-be.

As the tears flowed, the doctor's explained that we could have close to a 100% confirmation of the chromosomal disorder she suspected within 24 hours via amniocentesis. We quickly agreed to the horrifying test. Now, we wanted to know. We HAD to know.

After the amnio was performed, we sat in the car in shock and disbelief. This can't be real. This isn't our lives, is it? But it was. We looked down at our phones, which were both full of alerts, messages and missed calls from our friends and family who had expected to hear from us already about the baby's gender.

Gender? I'm not even thinking about gender anymore. The previous day, it was all I thought of...only now, I didn't care anymore. I called my mother and could only get the words, "Something is wrong with the baby's heart and she might have something wrong with her chromosomes."  Even those few words were nearly impossible to say through hysterical crying. She immediately left work to meet us at home. We finished our car ride in complete silence, in shock, in fear and numb.

When my mother arrived, I explained it all. I cried.  I screamed. I wailed out in a way I've never cried before and hope to never cry again. She cried too, and stroked my hair as I laid across the chair I was in. I realized in that moment that like I cried for my baby, she was crying for hers. It was one of my first revelations about motherhood.

The next day, my mother and my husband's mother, who had driven up, as well as a group of friends that I've had for over a decade surrounded us as we digested the information. We feared for our daughter's tiny imperfect heart. We feared that if she had Down Syndrome, her life wouldn't be what we wanted for her. We feared that if she had Down Syndrome, our own lives wouldn't be what we wanted for ourselves. It feels embarrassing to admit that. I felt incredible overpowering guilt for the sadness and fear I had inside me. Was I already a terrible mother? Was I supposed to be taking this all in stride? To be cliche, all I had talked about when asked if I wanted a boy or girl was wanting a healthy baby. [I now hate that answer.] I don't have that now. I have a sick baby, who we already knew would at the very least require open-heart surgery during infancy to survive...and more issues were a mere 24 hours from potentially being revealed. The guilt was suffocating and the magnitude was excruciating. I phsically ached as we waited for the call that would determine our future.

With our friends and mothers in the next room, waiting patiently, the call came in and as expected, our little girl had a confirmed diagnosis of Trisomy 21, Down Syndrome.

The following weeks, I cried a lot. I found myself OK one moment, only to be overwhelmed with tears the next. What will she be like? Will people accept her? Will people love her? Will I love her the way I wanted to? Will people make jokes at her expense? Will people pity her? Will they pity us?

The guilt over my sadness grew and festered. I wanted to be that person who heard the diagnosis, accepted it and immediately became the strong mother/advocate for children with intellectual disabilities I see on human interest pieces on nightly news shows. I simply wasn't there.

Looking back a year later, I wish for three things:
  1.  I wish I could tell myself that I am strong enough for this. I had never felt more weak in those days of chaos. My strength came back and grew by leaps and bounds this past year. 
  2. I wish I would allow myself the sadness and fear without succumbing to the guilt. It's okay to feel sad. We call it grieving the child you thought you'd have (although realistically, do any of us really know what our tiny fetus will grow to be? )
  3. I wish more than anything I could tell myself that the moment I would look in er eyes after she was born 5 weeks early and only 3 lbs 14 oz that I immediately would be washed in an overwhelming calm. It will be okay. She is perfect. 
While this past year has been the absolute most difficult of my life, between the prenatal diagnosis of AVSD heart defect, bed rest at 27 weeks pregnant, preterm birth, 3 days of labor ending in a cesarean, 6 weeks in the NICU, heart failure, open heart surgery, failure to thrive and our newest bonus diagnosis of leukemia, I would not trade anything for my sweet and beautiful daughter.

She doesn't know it, but I have learned more from having her in my life than from anything else in the past 31 years. She is perfect . She will laugh. She will love. She will have successes and failures. All humans do. My job is to love her through them and when she aches because soemthing hurts so bad she can't breathe, my job will be to sit beside her and stroke her hair and cry with my baby, just like a mother should.


2 comments:

  1. How can you not? She's the best!

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  2. Adrienne Coscia Flannery-ReillAugust 30, 2014 at 9:49 PM

    This is amazing. I'm so glad I read this. Cott, your honesty is so refreshing and extremely courageous. The other day, I posted something bc I felt like I needed to be honest and immediately felt shame the first time someone wrote something perceived as mildly scolding. It takes major bravery to be real these days, especially when it comes to social media. Your story is awesome and I feel really encouraged by your strength. I may not have the same issues, but knowing you have this kind of insane, superwoman strength, makes me realize I have it too. I hope all is well with you. Much love.

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