If I knew then, what I know now, not one single tear would have been shed.
This is something you hear from so many parents who have children with Down syndrome. I, like most of the rest, cried A LOT of tears when I first learned about my daughter’s Down syndrome diagnosis. I think it’s important for people to know how devastated I felt so if they face the same situation or know someone who does they can educate themselves before making a decision in that time of mourning. I want people to know that as happy and amazing as my life is now with my perfect daughter, I mourned and grieved just like most do.
Then I found out the truth of the gift of Down syndrome.
Here is my story…
It was on April 5th 2016 that I got the phone call that changed our lives forever. First let me go back a step or two before that day. When we first graduated from our IVF doctor and went to a regular baby doctor we made it very clear we only wanted testing for things we can medically fix. We signed paperwork saying we didn’t want any blood tests and minimal ultrasounds. We really only wanted to do the 20 week anatomy scan.
Things didn’t go as planned.
My doctor ordered blood work and I wasn’t aware the blood work was testing for Down syndrome. About a week later I got a surprise phone call from the nurse practitioner informing me that my blood test came back showing an elevated risk for DS, a 1 in 47 chance to be exact.
Looking back that 47 was another great big sign.
I really didn’t worry too much about these results especially after researching how they come up with these numbers. As far as I was concerned our baby was not that 1, she or he was the other 46. Just to put our minds fully at ease so we could enjoy the rest of the pregnancy we decided to do the next blood test that would tell us a yes or no with 98% accuracy. I called the doctor to set an appointment and didn’t tell Chris because I didn’t want him to worry while we were waiting. I was prepared simply to tell him the good news once it was received.
Chris was leaving on a trip to see some of the master’s golf tournament with my parents and my brother on Tuesday April 5th and he would return on Thursday April 7th, the day before the results were supposed to arrive. Again, that’s not how it went.
On Tuesday April 5th after letting my 1st graders out for the day I listened to my voicemail. I got a call from the nurse practitioner asking me to call her back. When I called her back she informed me that the results came in and the baby did indeed have Down syndrome. WHAT? I was in disbelief. I didn’t cry, I was in too much shock. I remember asking how accurate these results were and hearing her say I’m so sorry over and over and asking if I wanted to do an amino. I said, my husband is on a trip now and we will decide about the amino later but we are keeping the baby. She said ok, I’m so sorry and we hung up. I was speechless. Most of my support system was gone, what do I do now?? I texted my younger sister Lindsay, she was the only family member around at the time.
” Having a major panic attack as the nurse practitioner just called with the results of my second blood test with positive results for Down syndrome. It’s 98 percent accurate. Chris and mom are in Georgia…. don’t know what to tell them.”
Or I’m coming over
“I’m on my way home now.
I’ll be home in 20”
“Okay I’ll be there.”
My sister and her then 17-month-old son were at my house when I got home. I didn’t cry on the way home that day but my sister, the crier of the family, had been.
We didn’t talk a whole lot that day. We mostly spent time researching the test and seeing if it indeed was as accurate as it claimed to be. I knew the second I heard the news that it was true but researching kept me busy. We found out it was very accurate. We also called the nurse practitioner several times to ask different questions. When my sister left that night (she offered to stay the night) and I was home alone, the news began to sink in and my mind was racing.
While I was terrified about what this meant for my life, I was most concerned at that time about how and when I would tell my husband. I wanted to wait until he got home but my sister felt I needed his support and should tell him immediately. The thoughts going through my head were that I just wanted everyone to enjoy a few more happy days before I told them this life changing and devastating news.
That night I got very little sleep and cried off and on for hours. It felt crushing. I found myself asking why God would do this to us when we’ve already been through so much to have a baby. In the middle of the night I wrote a message to one of the admins for the infertility Facebook group I was a part of asking for advice on when to tell my husband. Most people felt that I should wait until he got home. They confirmed what I felt was the right thing to do. I liked that but it gave me days to worry, Google, and grieve without my husband.
The next morning I got up and went to work. Many people have asked me later how and why I went to work that week and my response was, I had to. My first graders kept me sane for a few days. I cried the entire way to and from work each day that week and I ate lunch alone. I really just tried my best to avoid all adults. I was worried if I saw people they would ask me about the pregnancy and I would fall apart or not be able to hide my pain. The only day I had to see people was Wednesday at the Staff meeting. Thank God I only had to listen that day and I didn’t have to interact or talk much.
My being very sick during pregnancy came in handy because no one noticed my change in behavior and people said later they just thought I wasn’t feeling well. Each day after work I would hangout with my sister and her baby (she was off work that week, another random miracle). While we were together we no longer researched the test results but we were researching Down syndrome and worrying so much. I also called my mother-in-law and had her come over so I could tell her the news. I asked her if she could break the news to my father-in-law and brother-in-law. I remember her being very positive. I am sure she was full of emotions but she didn’t let that show and she was as supportive as anyone could be. I told her the results were 98% positive and she told me she believed our baby was the 2% because she believed in miracles.
I remember thinking but not saying, “I believe our baby is a miracle as well, but in my heart I knew the baby is the 98% and did have Down syndrome.”
She stayed for a bit and helped talk me through how to tell Chris and I shared how nervous I was and how crushed I thought he would be. After just 2 days I already felt so fiercely protective of this baby no matter what he or she was like.
While waiting for Chris to come home these were the crazy thoughts running through my head.
Even though I’d always wanted a daughter the thought of one with DS terrified me…. I found myself praying the baby was a boy because in my mind teenage boys are more accepting and I want him/her to have friends, I was so worried about things like a girl with DS getting her period but I think I was most worried about my relationship with a daughter with DS. I always dreamed my daughter and I would have an amazing relationship, one like I have with my mom, but I thought if she had DS those dreams would die too.
How will we support a child the rest of our lives?
Who would take him if something happened to us?
Will Chris and I be able to make it through this?
Will Chris blame me? Will he blame himself?
What will we do with a child living with us forever?
We are going to stand out! I don’t want to stand out!
We have to have more kids so this child has friends.
Will other kids avoid us because they are afraid of someone different? It was as if everything I dreamed about and imagined with the baby growing inside me went away with the news.
I just didn’t want this news to be true.
Thursday finally arrived and that night I went to pick up Chris and my parents at the airport. When they got in the car I asked about the trip and listened as they told stories. Once I dropped my parents off I drove Chris and I the 5 minutes home to our house while he told more stories of the great trip they had. I wanted to tell Chris alone and not in the car and that’s why I waited until we got home.
Basically as soon as we walked through the door I said, “ I have to tell you something…the baby does have Down syndrome, I’m so sorry,” and I bust into tears. I couldn’t even look at Chris and he really didn’t say much of anything pretty much the whole night. He was just soaking it in.
I gave everyone the grace to have his or her own first reaction and I knew everyone just finding out needed time to process. The next day I had to deliver the news one final time, this time to my parents. I went over on Saturday morning when I knew both my mom and dad would be home. I walked through the door and my mom asked what I was doing there?!? I told her I needed to tell them something. I sat down and just blurted it out and again burst into tears. My mom said, “I’m so sorry “ followed by “ we can do this” my dad had a look I have only seen once before, at his brothers funeral.
My dad looked devastated and his whole body started shaking as he tried to comfort me and tell me it was going to be ok. He then quickly left to go for a run, its what he does when he is stressed. I stayed and talked with my mom for a while and I told my mom I was done delivering the news and I asked her to tell my older sister and my brother so I didn’t have to. After the family all knew it was time to grieve together, learn together and heal together.
Exactly a week after I learned of the diagnosis we met with the genetic counselor. She was so nice and the right person at the right time for us. By the time we left that appointment I felt so much better and realized this diagnosis changes nothing. All my hopes and dreams about my child could still be. We originally wanted to wait until birth to find out the gender but we knew that the genetic counselor was the person who should have that honor. She happily delivered the news that we were having a baby girl! I lost it one more time when I heard it was a girl but the words the counselor said sent me on a better path. I can say about a week after that appointment, I was fully accepting and excited to not only have a daughter but to have one with DS. I realized that my relationship with her can not only be as good as the relationship I have with my mom it may even be better.
Those two weeks were some of the roughest of my life, all based on fear. After learning and hearing from other families it didn’t take long to realize all of our fears were unfounded. We truly are the lucky few! A few weeks before Emmy was born, after all we had learned about DS my mom said to me something I had been thinking as well. She said, “I think I am going to be very disappointed if she doesn’t have Down syndrome.” Now that she’s here we know the truth. Although Down syndrome may present some challenges it is the most beautiful journey and we are so happy we get to parent a child this amazing!