the dark days

editors note: this post is lengthy. it is a completely, transparent, honest recollection of my days following the first sign of bad news. i am embarrassed by many of my thoughts and emotions, but i said i was going to be honest when i started this blog. i can only speak for myself, so i briefly touch on Mike throughout these days. please know, this is NOT how i/we currently feel. we have come a long way since these dark days.

still in shock from the appointment, we finally got Landon to sleep for his afternoon nap and have a brief moment of reflection. we hugged and held each other for what felt like an eternity. i was hoping it was all a bad dream and i would be waking up from it soon. i decided to run out to grab takeout for dinner, because there was no chance i was going to be able to focus on putting together a meal for the evening. i was alone in my car when i received a call from my mother-in-law and that was when it all really hit me. something was wrong with our baby.

the tears started that afternoon and never really stopped after that. same with the flood of questions, fear, doubt, worry, confusion, etc. i was truly grieving. grieving the life i had once pictured for our future – our marriage when we would be empty nesters (likely not a reality anymore), the future for our family and kids, what that future would look like, what our family would look like, what opportunities our children would have in life. the hopes and dreams i once had, all seemed to fade away fast. i grieved it all.

in those initial moments, i was confused and angry with God. we are both very faithful people, but i started to question it all. how could God want this for us? how could he want this for any child? what is He trying to show me? what did i do to deserve this?

in the midst of all the emotion, there were real decisions that needed to be made. how were we going to proceed next? we had three days to decide what type of testing to do. we dove into researching the options to make the best choice for us and our baby. when we left our appointment on Thursday, the genetic counselor was pushing for a CVS procedure (invasive procedure with a risk of miscarriage, but is a true diagnosis) over a noninvasive, blood test (NIPS) that was not diagnostic, but pretty accurate in screening for the chromosomal abnormalities. the genetic counselor was pushing the CVS to make sure we had plenty of time to decide how we would proceed with the pregnancy should we receive a positive diagnosis of chromosomal abnormality. translation: if we would terminate or not. i was NOT prepared for this idea. neither was Mike. i think it hit us both like a semi-truck. it was never in our hearts or thoughts, but now we were faced with the reality to discuss it.

chromosomal abnormalities come in a wide range – trisomy 13 & 18 (typically not compatible with life), trisomy 21 (Down syndrome), and sex chromosome abnormalities (in the grand scheme of chromosomal problems these are not hugely impactful on developing life). where our little baby would fall into these categories, we did not know. did we want to know now, so we would not be left to wonder for days? or do we keep our baby safe for as long as possible and endure the wait?

by monday, we had decided no matter what was going on with our baby, nothing would change the course of this pregnancy. we met with the second genetic counselor and decided to opt-out of the CVS procedure and do the non-invasive blood test. this genetic counselor provided more insight to my blood work and said it was more consistent with a trisomy 13 or 18 case, rather than a Down syndrome case. truthfully, we did not know what to make of this news, but knew we had more research to do. a prick to the arm later and we left with more uncertainty to wait for the results.

the waiting game is the absolute WORST. no matter what the situation – job interview, medical tests, a date to call you back, buying a house, etc. in the period of waiting, you are met with anxiety, fear, sleepless nights, lack of interest, appetite, and STRESS. this was our reality for the next 7-10 days. i would be sitting and playing with Landon, when i would be overcome with sadness and start crying. i would look at him and wonder what this meant for his childhood. would he only know hospital and doctor visits for his baby brother or sister? would he be as carefree as a child should be? would he have the same opportunities as others or be hindered by what is going on with the family? suddenly, i would end up in a dark spiral of thoughts. all valid, but all unknown. only God could answer these questions.

thankfully, i was not alone during this time. Mike took time away from work to focus on our family and our mental health. he was grieving like i was, we just grieved in different ways during this time. some days he was the strong one and others it was me. some days I could feel confident trusting in God’s plan for our family and others I was a total mess, filled with doubt. it was truly a rollercoaster of a week.

to add more fuel to the fire, this same week of waiting for updates on the health of our baby, Mike was in the process of renegotiating his contract. were we staying in California or moving away? between the work stress and baby stress, we were ready to explode. all the uncertainty was placed on our shoulders at one time. we were being tested as parents and partners.

God has a funny way of working, though. after all the uncertainty with baby, He opened up an opportunity for Mike to return to Atlanta. that meant, potentially moving back to my home and have the love and support of our families nearby. it’s like He said, “i may have given you a lot to handle, but i will help make this easier to manage.” the Atlanta opportunity was a total God wink.

on Monday, July 9, 2018, we learned the results of my NIPS. positive for Down syndrome (90% chance) and much to our surprise, positive for a sex chromosome abnormality. we weren’t planning to find out the gender of this baby (just like we had done with Landon), but we had questions about the sex chromosome abnormality that could not be answered without us finding out. we are having another boy!

in my next few posts, i’ll touch more on the subsequent days, telling our friends and family, and the continued grieving process.

 

6 thoughts on “the dark days

  1. The day my son with DS was born, a nurse came in and spoke to me. He had twins and one had downs. He explained to me that I was going to have horrible thoughts about the baby, and that it was normal. I’m so glad he told me that bc there were times when my mind would wander and I’d wish that baby wasn’t mine. I always think back to that day and laugh, if only I knew how amazing it would. We are the lucky few. Get through the first challenging 2 years and you will feel the same.

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  2. Step and Mike,

    Thanks for sharing your journey. Your strength in all of this is inspiring. My prayers and love are with you through all of this. I know you are making great choices, God has your back. I can’t wait to meet your new boy and rock him to sleep just like I did with Landon. We miss you guys and can’t wait to catch up with you soon.

    With love,
    Steve

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