This is the beginning of a series about our prenatal Down syndrome diagnosis experience. I leave this series intact to honor the journey I have been through with Down syndrome. Please note- I feel very differently about Down syndrome now than I did at the time of these posts. Our son has taught us so, so much. We wouldn’t change him if we could. Read the remainder of the series here: “The Angry Phase“, ” I Want Everyone to Know He’s My Son”, “Our Lives Become a Sermon”, “The Three Options”, “The Amniocentesis Results”
If you look back on the best moments in your life, they can often seem like a big happy blur. From your wedding, you remember how you felt when you recited your vows, the smile your dad put on your face when he gave his toast and how you had the best band ever. But, you may have a hard time recalling the words that were spoken at the ceremony, the context of your dad’s speech and what songs the band actually played.
When you look back on the worst moments of your life, if you are like me, you are haunted by every detail. Andy and I rolled our car into a ditch more than three years ago. I remember looking up and seeing his car go off the road, I remember him cutting the wheel so hard that we started to turn around on the highway, I remember thinking “Oh, God, we’re going to flip,” I remember the awful sounds the car made as it turned over, I remember hanging upside down, I remember looking to the back seat and seeing that our dog was missing. I remember everything.
The past two and a half weeks have been the worst days of my life and unfortunately I can recall every single detail.
I remember the morning of my 20-week ultrasound. I was really nervous and I didn’t know why. I chalked it up to being anxious about learning the baby’s sex. I remember how Andy started to tear up when the ultrasound tech told us it was a boy and how that melted my heart. I remember thinking it was weird how the ultrasound seemed to be taking a really long time. I remember how a nurse walked in after the ultrasound was over because she needed us to fill out paperwork. I remember her saying, “Well, it must have went well because if it didn’t, the doctor would be in here to talk to you.” I remember as soon as the sentence came out of her mouth, the doctor was at the door.
I remember him saying that they found some markers on the ultrasound indicating that there could be a genetic problem with the baby. I remember my body temperature rising what felt to be about 10 degrees. I remember him going over things I had never heard before, like an EIF and a slightly enlarged nuchal fold. I remember getting my blood drawn for more genetic testing. I remember Andy calling my last doctor at Nellis Air Force Base to get the results of my quad screening and it coming back negative- the best news we would hear all week. I remember getting home and having to tell my mom the bittersweet news: we were having a boy but he may have Down Syndrome.
Over the next two days my mom and Andy worked frantically to get me into a different doctor for a second ultrasound. Only six days after my first ultrasound, they said the nuchal fold was more than 3 times smaller than the first reading. The doctor said she would not have ordered additional genetic testing based on the ultrasound. We felt positive. We felt that we were just being worried parents.
Then, Monday, September 8th came. I got a call from Andy and he could barely speak. He was on his way home from work, even though he had just left the house after his lunch break. The doctor had called and told him that it wasn’t good news, and we had to come in and talk about the results. I remember falling on the ground and hugging my mom. I remember Andy walking through the door sobbing. I remember getting a sudden surge of strength as I helped him take off his restricting military uniform. I remember rubbing his shoulders has he got sick over the toilet. I remember the hot tears running down his face and onto my chest.
After we collected ourselves, my mom drove us to the doctor’s office. We waited for the doctor to come in for what felt like an eternity. He finally arrived and showed us the results. They said that our son had a 99% chance of having Down Syndrome.
So, where are we now? We are in the grieving process. There’s not a day that goes by where we don’t cry. There’s not a day that goes by where we don’t wonder “why”? There’s not a day that goes by where wonder, in fear, about what his life will look like. And even in the midst of the statistics and what seems to be our new reality, we still have hope.
Here is what we know: We know God did not intend for our son to have Down Syndrome, just like he does not intend for people to get cancer. We know that God did not give us a son with Down Syndrome because he believed we could handle it. We know that God would not test our faith by harming our child. We know that God would not punish us for our past sins by making our child go through this world with a life-altering condition.
We know that we live in a fallen world where disease and disorders do not discriminate.
I asked our former pastor, Dan, if it was silly for me to pray that God would heal him. He answered my question with a story from the Bible. Let me summarize, David won’t get off the ground, he is dressed in sackcloth, pleading that God would heal his son. He was such a mess that his servants were afraid to tell him that his son had died. But when he heard the news, he took a bath, ate a meal and went to worship God. His servants asked how him how he was acting so normal. He responded by saying,“While the child was still alive, I fasted and wept. I thought, ‘Who knows? The Lord may be gracious to me and let the child live.’ But now that he is dead, why should I go on fasting? Can I bring him back again? I will go to him, but he will not return to me.”
By the way, I asked Dan that since God was punishing David by making his son sick, could he be punishing Andy and me? Dan reminded me that we have to read the Old Testament through the eyes of the New Testament and the grace that Jesus brought into this world.
So, we will pray diligently like David until our son is born. Here is what we are praying for (and we hope that every believer reading this will pray this too.) Since we know that God is capable of all things, we are praying that God heal our son and wipe this disorder away from his life. Since we cannot predict God’s will, we pray that if he will not take this disability away from him, that he prepare us for the road ahead. We pray that he will make us the best parents possible to both of our children.
If you are reading this and thinking, “Wow, she’s so strong,” please don’t. I have sobbed more in the past week than I have in my whole life. I have lashed out at family members. I have failed. But, I know, that despite my failures, God still loves me. I know that we have not been forsaken. I know that my son has not been forsaken. I know he will be a blessing to us and we will be a blessing to him no matter what medical condition he faces.
I know that if he is born with Down Syndrome we will all face many challenges ahead, but no matter what, he will be loved.
This is the beginning of a series about finding out our unborn son has down syndrome through an abnormal ultrasound and a Harmony blood test. I wrote throughout the month and have kept every piece in tact so that it may help someone going through the same thing.Read the remainder of the series here: “The Angry Phase“, ” I Want Everyone to Know He’s My Son”, “Our Lives Become a Sermon”, “The Three Options”, “The Amniocentesis Results”