January 2, 2017…. The beginning.
I found out I was pregnant! Baby 4 would bless the kids and me… baby 5 for our family given I entered the relationship with Aaron with 3 kids and Aaron with 1… that’s a full house for us. Amidst the fear of the impending change, there was excitement and decision were quickly made. At 8 weeks, Aaron and I announced the news to kids and other family members. We shared our plans for him and his son, Tucker, to move in with the kids and me on March 1st.
While this should have been an exciting time - it was more of a stressful time as I was incredibly sick with “morning sickness” only in my case, it was all day sickness. I managed to work each day, but arrived home to lay down, and proceed with constant vomiting. My kids were champions, they made dinner for themselves, laid with me on the couch to either have me help with homework or just to care for me. With being sick, the adjustment to Aaron and Tucker moving in was not as easy for me as I had hoped; I hadn’t been able to clean my house in two months, and now I had two extra bodies, two more people to care for, pick up after and to settle into the house. Aaron helped - he cleaned, he rallied kids to clean, he made dinners, he took kids to grocery shop - he filled the gaps as best he could as I was continually vomiting. It was hard for me as I have always cared for the kids, I have always been the one to clean, do laundry, grocery shop, make dinner etc. and now I was having to let go, allow someone else to help care for them and at the same time care for me. Aaron remained graceful during the times when I was less than graceful, when my emotions would take over and the tears and anger would flood that I couldn’t control the situation and care for my family.
During this time, Aaron and I also began discussing if we were going to have any type of genetic testing done during the pregnancy. We were on the fence. Did we want to know if there was any “issues” with our baby prior to delivery? Or would we rather just move the pregnancy ignorant, and adjust post delivery should we need to? We could argue both sides; so we decided to talk with Zion, Aysa and Riah, seek their opinions; after all, they are old enough to have thoughts about this, to have an opinion that we should consider as it impacts them as well. After a few conversations with the kids, hearing their thoughts, concerns and desires, we decided to move forward with genetic testing.
14 weeks… Beginning part of March… I had my first blood test and on March 12th I had the ultrasound to measure baby’s nuchal tube. The following week I received the call from the nurse at the doctor’s office letting me know “Labs all look good. No concerns. Next set of tests will be at 18 weeks.” Deep sigh of relief. I has passed phase one.
18 weeks … Beginning of April… I had my next set of blood tests. Days later, while sitting at work, my cell phone rings, I recognize the number as my doctor’s office and immediately answers, eager to hear the same news as four weeks prior “Labs all look good. No concerns.” Only this time, as I answered it wasn’t the voice of my nurse, but of my doctor.
“Tiani, this is Dr. Hein. How are you?”
“I was good until I heard your voice. It’s never good when a provider call.” I said under a nervous laugh.
“I understand. It’s not bad, but I wanted to speak to you myself. I got your lab results late last night. Your numbers are a bit high for Down Syndrome. You are negative for Trisomy 13 and 18. You are a 1 in 5 for Down Syndrome; that’s a 20% chance. Given this, we need to proceed with further testing to be safe. I will be referring you to a Maternal Fetal Medicine provider for further testing. I will enter your referral as soon as we hang up and they will call you within 24 to 48 hours to schedule.”
I remained composed through the call. Dr. Hein said all the right words reminding me to not worry, to be calm and to know that it is precautionary and the right step to refer to another specialist.
As I hung up the phone, I took a deep breath, excused myself quickly from my desk before the tears could begin to fall. I left my desk, finding the closest, vacant provider office, where I entered, shut the door and let the tears fall. This wasn’t what I wanted to hear. What does this mean? Why? What next? How do I walk this? I cried for a bit, then composed myself enough to call Aaron and share the news with him. I knew he would worry to see my name on his phone in the middle of a work day. I asked him if he was outside, as I knew the news would hit him as hard as me. I shared with him exactly what the doctor told me and that as soon as I have the appointment scheduled I would tell him. We told each other it would be okay; that we would get through this; that we will hold onto the 80% chance baby was not Down Syndrome.
I don’t recall much about the days in between that phone call and my appointment at Swedish Maternal Fetal Medicine. It’s a blur. All I know for certain was that I shared the information with the kids, I asked them to pray and not share until we knew more. I reached out to some friends requesting prayer but otherwise, we didn’t tell family. We didn’t want to worry others for no reason.
20 weeks … April 25th… we awoke early to arrive at our appointment early. Our day was full. We were scheduled for our anatomy ultrasound, followed by a meeting with a genetic counselor and a possible amniocentisis.
The ultrasound.. Bittersweet for us. Our tech was lovely. She was kind, compassionate, thoughtful and fully aware of our situation. She shared with us everything she was looking at, respected our wishes to not know the gender, and even inquired if we wanted pictures for keepsakes. Aaron and I sat, watching our baby on the screen, seeing the profile, legs, hands and laughing that baby didn’t want to move their hands from their face. I kept my tears back… that was my baby, my sweet baby that I was beginning to feel move… I just prayed baby was healthy and that we would get the news every parent wants to hear “your baby is healthy and your test was a false positive.” Only the moment, the tech returned from having the radiologist review the images needing to scan more on the baby’s heart, I knew. I knew something wasn’t as it should be; I knew our journey was about to be different than we expected on January 2nd when we learned we were having a baby.
The radiologist then met with Aaron and me in another room. He sat us down, calmly stated he reviewed the images and there are a few concerns.
We walked to our appointment with the genetic counselor talking about what the radiologist said and agreeing that we should move forward with the amniocentisis to obtain a definitive answer.
The meeting with the genetic counselor was the strangest experience of my life… it was surreal. Cherise, that’s her name, sat us down, reiterated the results of the ultrasound. Only it didn’t end there… that I could handle. She proceeded to tell us that with my lab numbers and the findings on the ultrasound, we now could not rule out other chromosomal abnomalities; that there is a possibility baby would not make it to term, or if baby did we may have a baby that will only survive days and we would simply put baby on pallative care after birth, love on baby and know it’s only days we have. She said with small size and the heart, doctors may decide to take baby early if they felt baby could grow better outside of my body. I don’t recall much more… i remember Aaron sitting next me, his hand on my right knee, him asking questions and remaining calm as he could. I on the other hand, had tears streaming down my face and answered her questions through sobs. I told Cherise we wanted to proceed with the amnio given we had 4 kids at home that we would need to prepare for what was ahead of us and we needed to know to prepare ourselves. She agreed. She said more, but truly I heard nothing… I saw her lips moving but heard no sounds. I was in another world. What mom (or dad) wants to hear this news about their baby? My heart was being ripped in two as she continued speaking. I wanted to get up and run out of the room, run away to where this wasn’t real, this wasn’t my story, this wasn’t me on that couch, but instead I was being told my baby was healthy and Aaron and I would have the experience we had dreamed about.
The amnio… Aaron stayed with me. He conquered his fear of needle enough to be in the room, to not leave me and to be with me every step of the way. Sounds like a little step, but it brought me comfort and peace. The gesture of not wanting to leave my side, of overcoming his fear to be with me, gave me a sense of calm. He sat to my left while I laid on the exam table, while the doctor scanned to know where baby was, while the doctor placed the needle in my abdomen into my uterus to extract amniotic fluid. Aaron stared at the screen watching our baby during the procedure while I stared at the ceiling focusing on my breathing. During this time, the Casting Crowns’ song “Held” ran through my head. As I laid there calmly, the doctor telling me how much longer was left in the procedure, the following words played over in my head “Just be held. When it feels like your world is falling apart, it’s falling into place. Just be held.”
The procedure was soon completed and now we just waited. We walked to the car in silience. As we approached the car I broke. I fell into Aaron’s arms in tears. Through the tears all I could say to him was “I’m sorry. I am so sorry. I am so sorry I couldn’t give you the healthy baby you so desired.” He just held me tight, telling me not to say I was sorry; that it wasn’t my fault and that he was with me every step of the way. The drive home was silent as we both were processing what we had just heard. I just stared out the window, questioning why my body failed me. Why was this our journey? The remainder of the evening is a blur. I was numb. I tried to remain calm as I returned home and told the kids about the day. Those kids… what strength they possess and provide. They shed some tears, they told me they would pray and that we would get through every step of this.
I crawled into bed that night… numb. Only in the numbness the tears fell. I tried to pray but was at a loss of words. I didn’t even know what to pray, I couldn’t really think or put coherent thoughts together. The day seemed like a dream. It wasn’t real and I really thought at any point I would wake up from this nightmare. I laid in bed, tears falling, until my eyes were heavy enough to close and I finally fell asleep. I didn’t sleep long or well, but enough, enough to awake to tackle the next day, realizing it wasn’t a dream and I needed to find strength and move forward with the day ahead of me.
I arrived at work the following morning hoping to lose myself to the routine of work, to ignore the worry and the numbness. Sadly that wasn’t what occurred; only because I work with amazingly caring and compassionate co-workers; co-workers chose to walk the journey with my because they are genuine, loving people. (Truly I am blessed by their compassion, their love, their support.) As soon as I arrived my co-workers inquired about the day prior, hoping for good new. I shared with them the news, and as I shared, I couldn’t hold back the tears, they streamed down my cheeks, I choked out some of the news as the tears grew more. They listened, they hugged and offered support. They were all there in the most beautiful of ways.
I tried to work through the morning, but all I could focus on was that I wanted my mom while I waited for the news. I texted my mom then, asking if she was home and if I could stop by. She responded quickly that she was and yes… so I left work instantly heading straight to her house. I barely entered her door when I broke. I sobbed and incoherently shared with her the news from the day before. She just opened her arms and held me. She let me cry and just held me; just what I needed. I may be 37 but sometimes there is nothing like the arms of your parent and sometimes nothing like the arms of your mom. Another woman, who carried babies, who knows every hope a woman has for their child and every feeling that could occur when hearing what Aaron and I heard the day before.
I sat on my mom’s couch sharing all the information. I told her I was standing in faith. I was holding onto whatever percentage we had that baby was okay; that I just had to hope for a miracle. While sitting with my mom, my phone rang… it was the number for Swedish. I instantly answered the phone. On other end was Cherise. She started with the good news…
I couldn’t breath. I fell into my mom’s arms, sobbing uncontrollably. I know Down Syndrome is not a death sentence, but my heart was heavy. What does it mean with the heart issue, the size issue? What does it mean for my family as a whole? How will Aaron take the news? I sat next to my mom, on her couch and called Aaron. I fought back tears as I told him the news. I asked if he could take the day off and come home. I said he had to work, but would call me later. I could hear the emotion in his voice, but he had to be strong… I was breaking and he was at work.
I didn’t go back to work that day. I left my mom’s house, drove home, walked through the front door, down the hall, into my bedroom, pulled back the blankets and crawled into bed. This is where Zion found me when he got home from school. He took one look at me, crawled up next to me, grabbed my hand and inquired if I was okay. Through tears I shared with him the news I had just heard. He listened and then just hugged me, he told me it would be okay. He reminded me God is in control even though it may not feel that way right now; he reminded me we are a family and we get through everything together and that includes this. He allowed me to cry and listened to my feelings. I shared that I was scared, what if the baby was ugly? How would this impact our family? What does this mean with the heart condition? He just listened and was there. What a lovely blessing in the midst of such an emotionally hard time. Zion sitting with me, listening, loving me was such a gift; a gift I will cherish more than he will ever know, more than I have words to express. As a mom, in grief, to experience my gentleness and kindness of my son’s heart, of this boy that has grown into a young man, of a boy that I raised, there are no words; it was the gift given to me on a day when I felt my world crumbling.
As Zion and I sat in my bed, playing on social medial to laugh, Aaron arrived home. He decided to take the afternoon off, to come home and sit with me, to also hold me, console me and to process his own grief about the news. As kids arrived home from school, we shared the news, and together as a family processed what that means and next steps. Aysa and Riah took the news like champs, much like Zion. The diagnosis didn’t phase them; they were having a sibling and their focus was on baby being healthy and knowing facts about the heart concern. Now we wait for the next appointment - the fetal echocardiogram to know more about baby’s heart.
I'm a single mom of four radiant kids who believes in relationship with Jesus over religion. I'm trying not to battle with fear anymore - instead I am choosing to follow what God has called me to do. With that you'll find me here, trying to be brave, with the goal of being authentic and honest about God, single parenting and the beauty in the mess of my joyful chaos. It's sure to be a journey... and I am blessed to share it with you!