September 30, 2014

The Darkest Days: Finding Out {Prenatal Down Syndrome Diagnosis}

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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.

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We took this picture the day after the abnormal ultrasound. We were having a football party and I didn’t want to cancel.

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.

 The Darkest Days, Receiving a Down Syndrome Diagnosis

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”

 

October 7, 2014

The Darkest Days: The Angry Phase {Prenatal Down Syndrome Diagnosis}

The Darkest Days Receiving a Prenatal Down Syndrome Test

This is the second part 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 part 1 here.  Please note that these were my feelings at the time of receiving the news.  Everyone grieves and processes life-altering news in different ways. Any hurtful or judgmental comments will be deleted.

The day after getting the positive Harmony test for T21 (Down Syndrome) I entered the angry stage of the grief process. I remember Andy praying over lunch and I ran out of the room because I was too mad, too hurt to pray.

I was plagued with questions. Was this my fault? Was God punishing me, punishing us? Or worse, was He punishing my son for my sins? Or was this a test? Did He give my son this disorder so that we would glorify Him by giving our son the best life possible? A couple of hours after lunch I fired off this email to our former pastor.

I’m not proud of how I felt or what I said. I thought about deleting parts of this email for this post because I don’t really have this negative of an opinion of myself, but I decided to leave it as is. I want others who are going through similar situations, who may be experiencing similar feelings, to hopefully be comforted by the extreme range of emotions I went through: confusion, guilt, self-loathing and most of all: anger.

 

Dan,

I feel like I’ve entered the angry stage today, which is a worse feeling (to me) than the sad stage. I’m hoping you can help me with the following things that are on my mind.

David’s son became ill and died because of David’s sins. God punished David through making his child suffer. So, is it possible that we are being punished for our past mistakes through our son?

I know the answer will probably have something to do with grace and He showed grace through the birth of Solomon, but what about grace towards the child?

I listened to a sermon one time on sin and I had a hard time coming up with what my big sin was. I didn’t have the classics: adultery, gambling, etc. But I went home and thought about it and I realized that mine was superiority. I feel and like to feel superior to other people. Having a son with Down syndrome could probably be the most humbling thing that could happen to me. And when it comes to Andy, that man is about as perfect of a human that I’ve ever met, so I feel if we are being punished it’s because of me.

On the other hand…I once said (in my late teens early 20’s) that I would never be a preacher’s wife because preacher’s wives always die. Obviously a bit of an immature statement, but I did witness that quite a bit. Preachers and other people I knew that seemed the closest to God often seemed to have extraordinarily bad things happen to them. One example in particular, my brother’s friend Carlos…Carlos was the best example of a young Christian life that I can think of. Carlos got a rare form of lung cancer as a teenager and he died shortly after high school. I remember a lot of parents saying things like “he was sent here for the kids”. I disagreed.

When bad things happen I’ve subscribed to the “we live in a fallen world” theory and disease and accidents kind of randomly happen to different people. I feel like it’s the easiest theory to subscribe to.

But today I’m struggling big time. I feel that it is possible that God is either punishing us or because our faith is strong, God is allowing this to happen to us so that we can show the world our faith despite the extraordinary circumstances that we are facing (like Job).

Any light you could shed on this would be greatly appreciated.

 

Dan called me a few hours later. He reminded me that we had to read the Old Testament through the eyes of the New Testament and the grace that Jesus brought into the world. If we were being punished for something, God would not punish our son.

As for the second part, Dan assured me that he wouldn’t test our faith by purposefully giving our son a life-altering disorder.

I still had (and still have) questions, but I felt my anger start to fade.  My son didn’t have this disorder because of me, God didn’t give my son this disorder in order to test my faith or in order for me to bring Him glory (even though that can be one of the many good things that come from this.)

I believe He knew our son before he was conceived, He knew him in His image, He knew him without Down Syndrome.  I believe that when our son returns to heaven one day (hopefully a long time from now) he will walk on the streets of paradise without a disability.  I say this knowing that if he is born with Down Syndrome, I will probably never be able to picture him (or even want to picture him) any other way.

I believe that our son’s condition was not part of God’s plan.  I believe that he is a victim of the fallen world we live in.  I also believe that victims of disease and disorders can have beautiful and meaningful lives. In fact, there are statistics that show his life (and ours too) will likely be happier than those who do not posses an extra chromosome.  I think it’s why it’s called the magical chromosome…how great is that? So, I am not angry.

There is one thing I know for sure:  No matter what my son’s circumstances are here on earth, healthy or not, disabled or fully-abled, I know God is with him and He is with us.

P.S.

For the parents out there going through a positive prenatal Down Syndrome test, I still struggle with anger, but it is not because of the Down Syndrome. My anger flares when someone says something that I perceive to be either ignorant, hurtful or both. It also comes raging back over the things people don’t say. I know no one is perfect and I need to work on my patience and grace.

 Read Part One, Receiving the News, here.

Please note that these were my feelings at the time of receiving the news. Everyone grieves and processes life-altering news in different ways. Any hurtful or judgmental comments will be deleted.

The Darkest Days, Receiving a Down Syndrome Diagnosis 

October 8, 2014

The Darkest Days: “I Want Everyone to Know He’s My Son” {Prenatal Down Syndrome Diagnosis}

Receiving a Down Syndrome Diagnosis

This is the third part 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 part 1 here and Part 2 here.  Please note that these were my feelings at the time of receiving the news.  Everyone grieves and processes life-altering news in different ways. Any hurtful or judgmental comments will be deleted.

I was trying to think of a good opening line to start this post, but I’m just going to call it like it is: 2014 has been hell. Between moving to the middle of nowhere to getting this unexpected diagnosis, it’s been an emotional pit and at certain low times it seems as if there’s no end in sight. With how heartbreaking the past few months have been, I think it’s necessary to reflect on how wonderful my life actually is; in particular, how great of a man my husband is.

Let me take you back to Andy’s High School years. I like to tease him about not only being Captain of the Football Team  and Homecoming King, but also being voted “Best All Around”.  He says that he “peaked early” which is far from the truth, but it makes me laugh.

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Andy in High School…pretty dreamy!

 Andy’s mom, Debbie, told me that once Andy was in college, she would run into kids from his high school class who weren’t part of the cool crowd and they would stop her. They would stop her just to tell her how much they appreciated Andy taking time to get to know them and how special he made them feel. When Andy and I were dating, Debbie told me a story about how some guys on Andy’s football team were making fun of a kid. He was small, different and had an odd voice. Some of Andy’s team members started calling the kid “Aflac” like the duck on the insurance commercials because of his voice. Andy wouldn’t stand for it and put a stop to it. That’s the thing about Andy, he’s as sweet as pie, but he can be absolutely fierce when he knows he’s right.

Even today, the only time I’ve ever really seen him come home angry, has been because someone at school or at work has tried to make a classmate or co-worker feel like less of a person. My husband has SO many wonderful qualities and recently I’ve been reminded of one of his best: he is a protector.

As we began breaking the news to family and friends, something odd happened. We started learning that people, who we have known for years, have siblings or close relatives with Down Syndrome. It really bothered Andy. He didn’t understand why he was just hearing about these relatives now. Why were they omitted from all of the stories he had heard? Andy got really emotional talking about it. He refused to let our son be invisible, he turned to me and said, “I want everyone to know he’s my son.”

Talk about melting and breaking your wife’s heart at the same time. I don’t know what I ever did to deserve this man, but I’m so grateful that God chose me to be his wife.

And so we have a name. We tossed it around our last pregnancy, but we were originally leaning a different direction this second time around. Our son’s name is Anderson, “son of Andrew”. It’s also the last name of Andy’s great-grandfather (another kind soul) and it’s who Andy is named after.   I think it is perfect. We may call him “Sonny” for short, which if he’s anything like his Dad, will fit his happy personality. I hope he’s like his dad. I hope all of my children are. We need more Andy Benfields in this world.

To my southern lady friends, don’t go breaking out your monogramming machines just yet!  Since we know he has Down Syndrome right now (he has been diagnosed and I will write about this later) as I mentioned before we are still praying for healing.  We know God is capable of all things, including miracles and if he chooses to heal our son before he enters this world, we may decide to come up with a name that reflects that great miracle.

The Darkest Days, Receiving a Down Syndrome Diagnosis

Read part 1 here and Part 2 here

 

October 15, 2014

The Darkest Days: Our Lives Become a Sermon {Prenatal Down Syndrome Diagnosis}

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This is the fourth part 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 part 1 here, Part 2 here and Part 3 here.

I always appreciate when ministers adds stories into their sermons. You know, those little anecdotes about people they’ve come across in their lives. Whether they are stories of tragedy or triumph, I think they make the message more relatable. As much as I enjoy hearing these stories, I never thought my life would become one.

Let me give you some background. Four days after receiving the Harmony Blood Test Results that were positive for T21 (down syndrome) we had to go see a high-risk specialist.

 They did an ultrasound that lasted for nearly an hour. They saw nothing indicating down syndrome except that the right ventricle of his heart looked slightly enlarged (50% of babies born with down syndrome suffer from heart defects.) The doctor told me that if I were her sister, she would tell me to get an amniocentesis. We were shocked to hear this because our last doctor lead us to believe that the Harmony test was so accurate that most doctors won’t perform amnios (a topic for a later blog post.) So, we decided to go ahead with the procedure.

About a week later, as we were waiting for the results, I wrote the following message to our family and close friends. It’s part of this letter (they are in bold) that made it into two different sermons in the Atlanta area.

 

I’m only sending this message to the people I’m closest to. I’ve had some of you reach out and I know you want to know how we are doing, and the truth is, is that it changes every hour.

 Last week, after getting the results, I felt pretty much out of hope. This week, after doing some research and remembering a dream I had 2 weeks ago, I’ve started to feel hopeful again.

 Andy has done a lot of research, including this article http://thednaexchange.com/2013/07/11/guest-post-nips-is-not-diagnostic-convincing-our-patients-and-convincing-ourselves/ (if you’re interested) and others about how this genetic testing we had done is not the end-all-be-all that the first doctor told us that it was.

 I also had a dream 2 weeks ago the night before getting the second ultrasound done. It was one of those dreams where monsters were involved and we had to dodge the monsters and go through obstacles the entire dream. The very last scene, we entered a room and there was a baby boy in a baby carrier. I remember every detail of his face. His eyes were closed, but his nose was more pronounced than Violet’s, his face was longer and his philtrum (those two lines that run from your nose to your mouth) was very pronounced. He didn’t have Down syndrome. I felt confident walking into the ultrasound the next morning because I felt that I saw my baby’s face in that dream… The ultrasound picked up nothing abnormal. We have since had a third ultrasound that also picked up nothing abnormal.

After remembering this dream earlier this week, I prayed that God would send me another one. I also prayed that if this amnio was going to come back with bad results that he prepare me.

I had a dream that night. Here’s dream #2. Andy and I were on a plane. He had Violet on his lap and I had a random baby on my lap, I was still pregnant. Looking at the baby made me feel hopeful. Then the pilot came over the speaker and said he was not the one flying the plane, but that the computer was flying the plane and that sometimes it flies the plane lower than normal. I looked outside the window and we were flying really low and I got scared. Unfortunately, Andy woke me up at this point, so I don’t know how it ended.

I went to an on-base bible study the next morning. We were split into prayer groups.  I told my group about our situation. And one of the girls told me that every test her cousin had, indicated that her daughter would be born with Down syndrome. Her niece just celebrated her 3rd birthday and is completely healthy, no down syndrome or other health issues. Before I left, I asked her if her cousin had an amnio, and she said yes and that it had come back also saying she would have DS. It felt like maybe I was supposed to meet her. By the way, this woman is intelligent, and someone that I trust.

I can’t be certain if it was God that sent me these dreams or if it was my own hopeful subconscious. Who can be certain? But I feel that if the dreams (and meeting this woman) were from God, that he is trying to tell me that this pregnancy will be a battle, but maybe, just maybe, our son will be born completely healthy.

 Here’s why I am telling you all of this. Even though amnios are proven to be 99.4% accurate, we will continue praying for healing even if this test comes back with a bad result this coming week (obviously we are really hoping and praying for a clean bill of health!). And I know this may sound crazy considering amnios are diagnostic tests, but we believe God can heal him in spite of these results.

So here is where we stand with everything. We know that our son will be a blessing whether or not he has Down syndrome. We know that children and adults with Down syndrome are some of the happiest people on this planet. We know this. We believe that kids with Down syndrome can live meaningful lives, but we do not believe that when God created his perfect world, that he intended for people to have disorders like Down syndrome. We believe this and other conditions and diseases are a product of living in a fallen world. We do not believe that we are special parents and that’s why God sent us a child with special needs. We believe that if he has this disorder, it is because he is a victim (just like a cancer victim or anyone that has been affected with an illness) of living in a fallen world.

So, this is why I am writing you. I’m writing you to let you know that we still have hope. If this amnio comes back with bad results, we will continue praying for healing, but we will also start preparing. We cannot predict God’s will, so we will prepare for our son’s life as if he has Down syndrome and as if he doesn’t.

 We are asking you to please pray the same thing. Please pray that first, the amnio comes back negative for Down syndrome! But if it comes back with bad news, that God will heal our son. We believe God is capable of anything, including miracles, and we hope that you will pray for God to change his genetic code and heal him. And if he won’t, that he please prepare Andy and I for the road ahead.

I realize that this sounds like I’m a religious nut-job. It’s the kind of crazy faith I would have rolled my eyes at several years back. But the one thing we know for sure is that God is capable of anything, but whether he is willing or not, is a different story. All we can do is ask, beg, plead for him to intervene, and we hope you will too.

 

About an hour after I sent this letter, our former pastor Dan called me and said “I think you have it exactly right.” In the darkest moment of my life, when all I had were questions that started with “why”, those were the most reassuring 7 words I had ever heard.

Dan included part of the letter into the end of his sermon. Hace, another close friend of ours who happens to be a pastor, did the same. Both sermons had different messages (the first about nourishing your faith, the second about God’s sovereignty) and both brought me to tears. I remember telling Andy that if nothing else good came of our situation, that at least there was this… that hopefully at least one person sitting in those pews was impacted by our family. But now I know that this is just one of the many good things to come from our son’s life.

Dan Brown’s sermon at Dunwoody United Methodist Church: https://www.youtube.com/watch?v=H4ondRi1zCI

Hace Cargo’s sermon at Brookhaven Presbyterian: http://brookhavenpres.com/resources/sermons/?sermon_id=46  

This is the fourth part 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 part 1 here, Part 2 here and Part 3 here.

October 22, 2014

The Darkest Days: The Three Options {Prenatal Down Syndrome Diagnosis}

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This is the fifth part 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 part 1 here, Part 2 here, Part 3 here and Part 4 here

I have heard people describe the grieving process that happens after getting a prenatal Down syndrome diagnosis as a time of “highs and lows”. For me, that wasn’t really the case. In the thick of it, I would describe my mental state as moments of feeling okay and moments of feeling extreme despair. I woke up every morning with our new reality hitting me all over again, Our son has down syndrome, Our lives will not be how we imagined. And the fears, Will he get made fun of? Will he ever be independent? and the biggest one: Will anyone love him?

But on one particular day, I experienced the high. Two days prior to my experience, during my nightly prayer, I prayed that God send my husband, Andy, an angel the next day. You see, as I was left to process my grief at home with my daughter and my mom, Andy still had to go to work every day to his brand new job. I just wanted him to have a moment of encouragement, of hope, of something good. The following evening he came home and said, “I met an angel today.” Andy had an extremely encouraging conversation with a patient about God’s will in our lives.

To be honest, if he hadn’t said those words, if he had just described the amazing man he had met, I probably would have forgotten that I had even prayed for an angel. What an affirmation of God’s love! I decided to ask God for yet another favor that night. I prayed that he give me a sign that would indicate whether or not our son had Down syndrome.

Since I already wrote about it, I won’t go into the details, but that’s the night I had the airplane dream. Andy woke me up before it was over, but I had a feeling that the dream was from God. That morning I went to an on-base bible study where I met a woman who told me that her cousin had an amniocentesis done that concluded her daughter had Down syndrome, and despite it being a diagnostic test, her daughter was born with no genetic issues. I was not certain that this would be the case for our son, but I felt the high start to come on. I was high on hope. I was high on God’s grace. I was high on our future.

I concluded that this was going to play out one of three ways.

1)   The amniocentesis comes back with good news, that our son does not have Down syndrome. I could tell people how even though my original doctor led us to believe that the Harmony test is 99.9% accurate, recent research suggests otherwise. I could tell them how he laid out two options for us, the first being abortion (he would not do an amnio with the Harmony results), even though these tests are NOT diagnostic. I could parents out there to reconsider. I could tell them about the woman whose Harmony test came back positive for Trisomy 18 (a fatal condition) and how she terminated the pregnancy and how she had additional tests run on her son and he did NOT have Trisomy 18. I would tell everyone I knew and maybe save some families some heartache and maybe even save some lives in the process.

2)   The amniocentesis comes back with bad news, that our son has Down syndrome. We would prepare for his life as if he has Down syndrome, but pray for a miracle. We would pray every day. We would ask others from all over the world to pray every day for a miracle. We would have so much faith in God’s ultimate power, that we ask him to do what most would find impossible, to change our son’s genetic code. And then he is born without Down syndrome. And we would shout it from every rooftop that God is a God of compassion, that He is a God of healing, that He is a God of miracles and our son would be living proof.

3)   Our son is born with Down syndrome. And despite God not answering our requests for healing, we will still show the world our faith. We will show them our faith by giving our son the absolute best life we possibly can. We won’t put limits on him because of his disability. We will encourage him to be his best and we will love him fiercely. We will pray that he “know Christ and makes Christ known” through his attitude, through his accomplishments and through his life.

I’m not in that high anymore, but I still believe in these options. I still believe in miracles. If God chooses not to perform a miracle through healing, then I believe he will perform miracles through our son’s life, through our lives. I believe.

 

This is the fifth part 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 part 1 here, Part 2 here, Part 3 here and Part 4 here

October 29, 2014

The Darkest Days: The Amniocentesis Results are In {Down Syndrome Diagnosis}

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This is the sixth and final part 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 part 1 here, Part 2 here, Part 3 here, Part 4 here and Part 5 here. Please keep in mind that these were my feelings at the time of receiving the news.

 

We have a clock on our wall that I love. A distant relative gave it to us as a wedding gift. I remember hearing it tick…tick…tick when I was home alone on my weekend (Thursday/Friday) while Andy was at work. I tried to keep myself busy. I volunteered, I did housework, I cooked…but when I got lonely with little to do, I would hear tick…tick…tick.

When you have a baby, life gets noisier. The quiet you once knew gets filled with baby cries, lullabies…and eventually the stomping of little feet and giggles that make you realize your purpose in life. I hadn’t heard that clock since Violet was born a year and a half ago. But in the last week of September, I heard it again and again tick…tick…tick.

After meeting the OB Specialist for the first time, we decided to go ahead with the amniocentesis. We had read some articles, including this one that made it seem as if the Harmony blood test was not as accurate as the makers claim. The specialist told us it would take 10-14 days to get the results back. The first few days of the waiting process were easy, some days were even joyful and then Monday came around…tick…tick…tick.

I tried to fill the time; my Mom, Violet and I went to lunch one day, I took Violet to a MOPS meeting another and I went thrift store shopping the next. I would even go for 5-minute periods where I’d forget that I was waiting on the biggest news of my life. But in the afternoons, when I knew the lunch break at the doctor’s office was over, it would hit me again. I’d hold my phone with sweaty palms and weak stomach and stare at the screen. Any time it made a noise, I felt like vomiting. I spent the afternoons thinking, “Just a few more hours and then I’m safe for the day”…tick…tick…tick.

The week of waiting was the most sickening experience of my life. 

I was completely caught off guard the first two rounds of bad news. This time, I thought it was best that I be constantly on-guard, prepared. Then Thursday came. I got a call from Andy around 4:00 saying that he was going to a Company Grade Officer meeting and would be home late. About 10 minutes later, he called back. I was in the middle of changing a diaper. Because it was so late in the day, it didn’t dawn on me that this was the call.

Andy said, “The doctor called with the results, he has Down syndrome.” I asked him if we had to go in to get the full report. The doctor said that it wasn’t necessary because it was “Garden variety Down syndrome.” What he meant by that was that our son has Trisomy 21 which is the most common type of Down Syndrome that is not passed down through genetics, but is a “bolt of lighting”, “a random act of nature” as he described it.

The clock stopped. I wasn’t threatened by the tick…tick…tick any more. The dreaded moment had passed. I hung up the phone, I finished changing Violet’s diaper and yelled to my mom in the other room “Results are in, he has Down Syndrome” as casually as if I was yelling “Hey, what do you want for dinner tonight?” I sat on the ground to play with Violet and my mom walked in the room. She put her arm around me, she squeezed me…and nothing. I had no reaction. No tears. No emotions. I felt numb.

If you’ve ever been in a car crash, you might not have felt pain immediately after colliding. But just give it a few minutes, a few hours, a night of sleep…it’s only a matter of time before you feel the effects of impact.

It started as a steady flow of quiet and wordless tears an hour or more after getting the news. I cried over lasagna that I thought I would have to force myself to eat…but if you know my mom…you know that woman can cook…and I’m pregnant. Even though I enjoyed the taste those soundless tears kept pouring down over mom’s homemade Italian.

I knew what I was feeling, what I was displaying, wasn’t enough. I knew that I needed to allow myself to feel all of the feelings at once or I would never be able to move on. It would just be random spouts of grief the rest of my pregnancy. So, I got undressed, I folded up a towel and put it on the shower floor, I turned on the hot water and let it all hit me. To say that I had “the ugly cry” is an understatement. I had the scary cry. The cry I had only seen a few times in my journalism career as I drove up early to an accident or a murder scene and family members were still there. It’s the cry that only comes from loss, a loss of life. Because that’s what it was.

Nearly every special needs mom has told me that I had to grieve the life that was lost. No, my son is not dead, but the son I thought I would have…that dream, that picture I had of our family died a little that night. Deep down I knew the portrait would still be beautiful, but it would look differently than I had imagined.

 This is normally the part of the article where I’d turn everything around and spin some sort of positive on the situation. Or tell you that I knew God was with me even at my worst moment. But I’m not going to do that. It wouldn’t be true to how I felt. It would be a disservice to any mom who may have just received similar news. No.

The water turned cold, I let my skin and tears dry, I got my awkward pregnant body off of the floor and I went to bed empty.

 

This is the sixth and final part 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 part 1 here, Part 2 here, Part 3 here, Part 4 here and Part 5 herePlease keep in mind that these were my feelings at the time of receiving the news.

December 21, 2014

“You Don’t Have to be a Hero”-The Horrible thing my Doctor Said {Down Syndrome Diagnosis}

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Disclaimer: I’m not a working journalist any more and I did not have any kind of recording device during this discussion.  The quotes are what I remember about the conversation I had with my doctor, they are not exact.

My husband has a gift. He can’t remember bad things that happen. So, if I ever try to pull the wife card and bring up an old fight…he has little to no memory of it ever taking place. Lucky guy, right?! I wrote earlier how I on the other hand, remember every little detail when something goes wrong…until recently.

I thought I remembered each horrible minute inside the doctor’s office the day he read us the Harmony results. I remember feeling numb as I waited on top of the exam table with that crinkle paper underneath my legs. I had already experienced the ton of bricks part of that experience; the shock, the tears, the screaming—and so we sat in silence as we waited to get the official word. But part of that office visit was so terrible that I blocked it out for weeks. It was my mom who actually reminded me of the horrible thing my doctor said to us.

Our conversation went something like this: He said, “It’s this time when people normally want to talk about their options.” I said, “What are the options?” He continued, “Option 1 is you terminate the pregnancy.”

Let me stop right here. This is not the terrible thing he said. No matter what my beliefs are on the issue, I think it was his job as a physician to give us this option.

He went on to tell me that since I was 22 weeks I would need to let him know immediately if we wanted to end the pregnancy as time was running out. I asked him “What’s option 2?” He said, “Option 2 is you continue the pregnancy with a high risk doctor.” It was at this point we started asking him more specifics about Down syndrome, we wanted to know what to expect for our child’s short and long- term future.

He told us long term he may never be able to feed himself or the best we could expect was that he could flip burgers at a fast-food chain. This is simply not true. With advances in medical care and therapies, young adults with Down syndrome are able to attend college these days. According to the National Down Syndrome Society there are 108 colleges with programs for young adults with disabilities. Although concerning that this doctor had little to no knowledge on recent advancements in the quality of life of people who have DS, this is also not the horrible thing he said to us.

He went on, “More immediately, you have a higher chance of miscarrying or stillbirth with Down syndrome and your baby has a 50% chance of having a heart defect.” I stopped him, “Wait, there’s a chance I could miscarry this late?” “Oh, yes, you have a much higher chance of miscarrying,” he said it in a reassuring tone…as if this is what I wanted to hear. This still is not the terrible thing he said to us.

“If you decide to continue the pregnancy, you don’t have to be a hero. You can have the baby here. We can keep the baby comfortable, but you don’t have to do anything drastic like open-heart surgery.” There it is. My son. Apparently he should expect the same access to medical care as a family pet. There is no neonatal care unit in Alamogordo, much less any tertiary care that he may require. We could choose to keep him comfortable, warm, but let him die because his life would not be one worth saving.

I decided to write this post because unfortunately this kind of reaction from doctors seems to be pretty common. Through support groups and research I’ve found that many OBGYNs paint a bleak picture for the future of children with Down syndrome despite recent medical and social advances.

Here’s what I find so problematic with how my doctor delivered the news to us. More people are having non-invasive prenatal screenings done (NIPS) like the Harmony test we had. I asked our doctor if we should get an amniocentesis to confirm the results and his response was “ These tests (NIPS) are so accurate that most doctors won’t perform an amnio if you have a positive result.” Therefore, he gave us terminating the pregnancy as option 1 without a diagnosis of an amniocentesis. Some studies have found that NIPS are not as accurate the makers would lead you to believe, one study found they only have about a 50% accuracy rate for younger women. A recent “sting” had two women who were not pregnant take the different NIPS tests, 3 out of the 5 tests said the women were having baby girls who did not have Down syndrome. Clearly, the 99% accuracy rate the tests boast seems skewed. 

Here’s another reason why I find our experience to be so concerning. 1 out of every 691 babies born are born with Down syndrome. Take into consideration how many more people would have Down syndrome if it weren’t for the high termination rate. I’ve read it’s somewhere between 75%-90% for women given a prenatal diagnosis. My point is: Down syndrome is not uncommon. It is the most common genetic disorder out there. Although I wouldn’t expect an OBGYN to know as much about DS as a high-risk OBGYN or a pediatrician, they should know more than my doctor did. They are the ones delivering the news to moms and dads, they should be educated on recent advancements. If they did, I think they would find that a life with Down syndrome is still a life worth living.

So if my former doctor is reading this, I’d like to point him to some proof of that.

Here’s a list of businesses whose owners have DS: http://yomammamamma.blogspot.com/2009/12/businesses-owned-by-people-with-down.html?m=1

Here are education success stories: http://www.ndss.org/My-Great-Story/Virtual-Storybook/Education/

Here are some stories that will restore your faith in humanity: http://www.hlntv.com/article/2013/08/17/downs-syndrome-success-stories

See how easy that was? A simple google search.

If you are a parent and are unhappy about how your diagnosis experience you can submit your story to the Down Syndrome Diagnosis Network and they will send your doctor materials in hopes of educating them on how to deliver news in a way that is supportive and educational. Visit their website here and like them on Facebook here.

Read more posts about our diagnosis story here.

January 15, 2015

Anderson’s Birth Story {Prenatal Down syndrome Diagnosis}

Anderson hospital

It was December 30th and I was in a wretched mood. Well, my 20-month-old daughter Violet was the one having a really bad day, which in turn made all of us (particularly my 38-week pregnant self) pretty miserable. It was so bad that I actually apologized to my parents, more than once, for the terrible attitude I had put on display all day long. Looking back now, I think I was anxious…I knew he was coming.

I had a doctor’s appointment late that afternoon. My husband and I waited for an hour to be seen by the ultrasound technician.  The tech was very talkative (when you’ve had something go wrong in a pregnancy you’re used to them being silent until a doctor arrives) and said, “Your amniotic fluid is low.” “How low?” “It’s only a 3.” I knew what that meant. I looked at Andy with tears in my eyes and said, “I hope they let us go home and get our things.”

last pregnancy picture
Two days before Anderson was born

I already had a bag packed, my parents could have easily brought it to the hospital, but it was Violet. I had been so impatient with her that day. I needed to see her. I needed to hold her tightly one more time as my only child.

When we got home, I sat on the floor of my daughter’s playroom and cried. My parents didn’t understand, how could they? Having a baby had only ever been a joyous occasion for them as were all 10 births of their grandchildren. I told them how scared I was. I read the books on babies with Down syndrome. I knew what could happen at the hospital. Mothers of children with Down syndrome assured me for months that it would all be better once he was here…what if they were wrong? I worried that we would search his little body all over for signs. I worried that we would feel sad instead of elated the way we were at the birth of our daughter. All of my fears that had built up for 4 months were coming to the surface at once.

So, I did what I always do when I feel my worst. I took a hot shower and I cried it out. Then I put my game-face on… a.k.a makeup. I even applied mascara, so I couldn’t afford to cry now. I was not going to let my fear take over the entire birth. As silly as it sounds, I wanted to look like the fierce mother I wanted to be for our son.

We got to the hospital and the doctor told us that Christmas may have passed, but “We have a Bethlehem type situation.” There were no rooms available, so they put me in a triage room and the stress of it all made me go into labor on my own. Two hours later we finally got a room in labor and delivery. The doctors didn’t want me to be in labor too long so they gave me Pitocin to speed up the process.

There we were, in the last period of waiting during this pregnancy. I’ve written about the waiting periods in our lives during 2014. We waited to find out where we would be stationed. We waited for the blood test results. We waited for the amniocentesis results. We waited to see if we would move and then we waited for where we would get moved to next. The waiting was about to end on the last day of the year…fitting, right?

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As I waited this time, I wasn’t filled with fear. Instead I prayed. I prayed for hours that night. I brought my prayer journal and I wrote down my prayers to God. We made it no secret that we were praying for God to take away our son’s extra chromosome. It’s a decision people have both supported and criticized. But we prayed this not because we think a life with Down syndrome is less of a life, but because we are his parents. If we could ask God to take away a syndrome that would make parts of his life (the parts so many of us take for granted) more challenging…that would require years of therapy…we would ask.

But as I felt myself pouring my thoughts out on those pages, I felt my words coming up short. I didn’t feel my heart 100% behind them. I didn’t feel right about the words looking back at me. I thought it was because it was 3 a.m. and I was delirious and sleep deprived, but really I think it was God’s way of telling me that he had answered this prayer we had been praying for months by saying “no”.

The nurse came in to check me and I was at 6 centimeters. A half hour later I called her to come back. I told her something was wrong, that I could feel everything despite getting an epidural. She was a new nurse on L&D and she told me she didn’t want to check me again for a while. Good thing I insisted because I went from 6 to 10. All of a sudden, dozens of people were in the room. I didn’t understand what was happening. They told me it was time to push.

Andy held my hand and I pushed for what seemed like seconds (in reality 5 minutes) before I heard the tiniest cry. It was like a scene out of a movie. I kept saying, “He’s not crying, he’s not crying, what’s wrong?” A nurse from the NICU told me that he was fine and she told Andy to come over and take pictures. I saw his body language. He looked heavy. The doctors then handed my son to me and I knew. The answer was in his eyes. He had Down syndrome. And I wasn’t disappointed… I felt at peace. I stared at the gorgeous, darling boy in my arms and I knew his life might be different than I had imagined and I knew it would be okay.

We had two names picked out for our son. We had decided that if he had Down syndrome we would name him after his dad. The doctor asked us, “What’s your son’s name?” Andy and I looked at each other and said, “Anderson” in unison.

It took a long time for the staff to leave our room. When they did I said to Andy, “I feel like you need to put your head on my shoulder and cry.” And he did. We didn’t speak. I knew what he was feeling. It was the end to the 4 worst months of our lives. It was every emotion at once. It was joy and fear. I knew he needed to feel everything before moving on.

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And he did…quickly. I thought something was wrong with Anderson from the moment he came out. He seemed too lethargic. When a nurse came back into our room, she noticed it too. She ran a quick test, discovered low oxygen levels and off to the NICU our baby went. Andy immediately went into Dad mode. He calmly asked the doctors questions and put it all into a language I could understand. He was either at my side or Andersons’ side, comforting us both.

Call it a premonition, a mother’s intuition or the Holy Spirit, but I predicted Anderson would be born on New Year’s Eve. We all picked dates a couple of weeks before. Andy asked me why I thought the 31st would be the day. I told him that I thought God would show us a miracle on the last day of the worst year of our lives. I said all along that our son would be a blessing whether he had Down syndrome or not. But he’s not only a blessing…he is a miracle. He has changed my heart. He has opened my mind. He has made me better. I know his work isn’t done. I know I will continue to grow because of him. I believe he will have the same impact on those who come to know him. My sweet boy, Anderson, is a miracle.

anderson home

February 23, 2015

The Airplane Nursery Meltdown {Pregnancy Down syndrome Diagnosis)

Vintage Airplane Nursery
Vintage Airplane Nursery, Down syndrome pregnancy diagnosis

When I was pregnant with my daughter one of the things I was the most excited about was putting together a nursery. I thought about each detail. I spent more hours than I’d like to admit picking out her bedding. I did pinterest-type DIY projects for it…and I’m not the DIY kind of girl. I wanted it to be perfect.

You would think with this being my second child, I would be less enthused about the nursery. Although they’re adorable, you rarely spend much time in your baby’s room. But I didn’t care. If I was going to have a boy, it had to be planes. I came up with the idea because my husband Andy is in the Air Force and I just thought it fit.

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A couple of days after getting the word that Anderson had Down syndrome, my mom brought up the nursery. She asked me if I’d like to try to find some airplane accessories and get started on the room. I burst into tears. “He’ll never be able to be a pilot!”

The point of doing the nursery in an airplane theme was never about him being a pilot, but with all of my dreams for my son crashing and burning around me it suddenly became important. In the days after the diagnosis, all I could think about were his limitations. How he would be limited in life. What he wouldn’t be able to do.

It wasn’t just his long-term future that kept me up at night; it was his childhood as well. I remember seeing a kid riding his bike when we were on our way to get the official diagnosis…would he be able to ride a bike…ever? Would he be able to walk to his friends’ houses in the neighborhood as I saw our neighborhood kids do every day? Would he have friends at all?

Oversized Letter for Nursery
Oversized Letter for Nursery

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Time painfully passed by. I don’t remember much about the months after the diagnosis, but I do remember that the days were long. But little by little, I started to research more about Down syndrome. I was able to reach out to other moms. I was able to see a brighter picture. And little by little the pieces of my shattered heart started coming back together. I realized my dreams had not been burned to the ground; they were actually rising to a level I had never thought possible.

Oh the places you will go decal

Since we moved in the last month of the pregnancy, we had only a few weeks to get his nursery together. When I started thinking about those dreams I knew what to do with the big red wall the room came with. I bought this decal that says, “Oh the places you will go…” Oh, the places he will go. Yes, he will be limited. At times he will have to fight harder than others to get to where he wants to be. But what an inspiration he could be. I say could, because of course an extra chromosome does not guarantee anything, good or bad. One thing I do know for sure: his life will never be ordinary and yes that is still scary at times, but oh the possibilities.

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Nursery Collage
Vintage Airplane nursery, Down syndrome pregnancy diagnosis

 Read our diagnosis story here. Read Anderson’s birth story here.

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