December 8, 2018
Tuesday sucked. I woke up and could feel the day was going to be filled with emotional hurtles that I wasn’t prepared for. It was overcast and the weather seemed to mimic exactly how I was feeling. I felt sad. I knew that I had a busy day ahead of me; instructing, meetings, and a lunch date with Tomas, so I decided to shift gears bury my emotions and push forward at least for the morning and afternoon. There didn’t really feel like another option.
At lunch I felt gone, I couldn’t focus and I couldn’t really tell you what we even talked about, maybe the kids and their schedules? The only way I can describe how I felt was lost, like I was wandering around part of the world but not. I had my own separate world going on and I didn’t want to be there, my world sucked.
I got home and the kids were sleeping I decided to pick up the “Bloom” book and start reading it again. I needed validation, I needed to read that everything was going to be ok and that the cloud was going to lift, and soon. The book did nothing for me.
I put it down and picked up my computer. I stared at the screen and pulled up a blank word document, I knew I needed to write. I knew I needed to write but I also knew this was going to be the most painful story I was going to tell up until this point of my life and I was still very much in it. It was still so raw and real but I needed to process and writing is the only way I know how to do that.
I stared at the screen and started typing, writing everything that had happened over the last week, it was so painful. My stomach was in knots and I had a constant lump in my throat that continued to grow the more words I put down on the page. It became so evident that this was my new reality and I wasn’t ready. I wasn’t ready to accept it as my story. I went from sad to angry thinking about how event after event unfolded and how it just seemed to keep getting worse and then I thought, wait what if this is just the beginning and it does get so much worse?
Up until that point I kept thinking best case scenario for everything, I would consider myself an optimist so my mind naturally went there even though I never thought Down syndrome best case scenario would be in my thought-life. But the what-ifs started to creep in and I became crippled in fear, to the point where I had to stop writing, it was too much.
Soon after the kids woke up and I had to shift gears, they were filled with melt-downs and I had zero patience, a pretty rough combo. The ultrasound placed called to set an appointment and it set me off. There was nothing she said she was simply scheduling the appointment to get an extensive ultrasound to check the baby for Down syndrome markers as well as look at her heart. Babies born with Down syndrome have a higher chance of multiple heart issues and other abnormalities so they needed to check her to be prepared and prepare us. I set the appointment, hung up the phone, and cried. The kids were there so I held it in as much as I could but I started feeling everything bubble to the surface, I knew what was coming.
I met the kid’s basic needs that night, bath, food, water, bottles, and bed. I had nothing else to give them and to be honest I didn’t even feel bad about it because I was proud of myself for even giving them that much. I put them to bed and got in mine. I sat there pulled out my computer and finished the rest of the story of that week. It was hard but I needed to be done and it was looming over me.
It was getting close to 9:30pm and I knew Tomas’ meeting at work was wrapping up. I texted him, I need you home.
“I’m on my way!” he texted back.
And I sat there.
I knew I was about to have a serious emotional breakdown and I couldn’t be by myself, I felt scared, I don’t even know of what, maybe myself? But I was scared.
He walked in the door, came over to our bed, and sat behind me so he could cradle me and hold me. He knew what I needed.
The second his arms got wrapped around me I started to hysterically cry. I cried harder than I probably ever have in my life. I was shaking, gasping for air, crying so hard I couldn’t even see, I just closed my eyes, it was so painful, honestly gut-wrenching, and I wasn’t sure it was ever going to go away.
A few minutes later Tomas started to talk. Babe, we just need to trust God, He’s got this, I know it’s hard but I know He does.
I didn’t believe him. I didn’t feel like I trusted God at all, I felt so angry at Him, like He betrayed me, how could I trust Him right now, the thought of it made me so angry, I literally wanted to scream.
I told Tomas, I told him exactly how I felt and where my mind was. I shared with him the fears that had crept up that day and that were beginning to consume me. I couldn’t even handle it anymore and we hadn’t even started. The plane was still on the ground and it was already the worst flight ever and I wanted off.
I went on and on about how I felt like there were too sides of me at war. The side that knew everything was going to be ok and that this wasn’t something God did to us but He was going to use and we would be stronger for it. But the other side, the other side I was terrified of; the heart diagnosis, the potential leukemia (higher in Ds kids), health issues, the 24/7 dependency, what this meant for Mia and Kai, adult-llife?, and navigating the potential next 60 years with a special needs daughter. These things were consuming me and at war with the other side, except I felt like this one was winning. I felt so weak and vulnerable and I hated it.
Tomas listened to my fears and begin to ease them all. He told me how we were in this together and everything He knew to be true about God and how He worked even if it was hard and uncomfortable. He started to speak truths over our lives as well as our baby girl and through his own tears and fears began proclaiming things that I don’t even know if He believed but as the leader of our family needed to be said and what we were going to stand on regardless of what we felt.
I looked at him and I could see the pain in his eyes, I knew he was grieving too, in his own way, but he was grieving.
Tomas began to share with me that even though this had been such a hard week, he felt so much closer to me. I knew what he meant, and what he was saying.
It is so hard for me to be vulnerable in relationships, almost painfully so, it’s probably the most unconformable thing for me to experience almost to an unhealthy point – like I should be in therapy for it but that’s another conversation for another day. He had probably seen me cry only a handful of times in our 12 years together and never like this. I know he knew when I was exposing this side of myself how hard it was for me but how much more it connected him to me. I was letting him in and he knew it.
Tomas continued to hold me and started to pray. I felt resistant at first, but as he continued, my anger began to melt, my body softened, and I was started to feel peace creep back in as he continued to hold me and pray. I don’t know what he said, and I don’t think it even matters because God met us there. In the darkest moments where we were both at the end, He met us and we knew it.
It didn’t mean things were magically easy or even going to be ok, we didn’t really know, but we weren’t alone, we knew God was lifting the plane and we were taking off.
Once he finished, Tomas let go of me, we looked at each other, straight up hot messes from crying so hard and we laughed. We joked about the week and made a bunch of cynical, most likely inappropriate comments about what had taken place but that’s how we deal, humor, and Lord knew we needed it. At the point, it was midnight and we were so exhausted. We fell asleep with arms around each other feeling closer than ever. Tomorrow was a new day.
And it was!
It was lighter. Whatever I had been carrying around the last week didn’t feel as heavy. It was still there, I could definitely feel it but not like before. It felt manageable and I could do manageable.
In fact, the next few days felt that way. Going through the motions, running a business, taking care of the kids, and beginning to process more and more about having a daughter with Down syndrome and maybe even owning it a little. Kinda.
December 11, 2018
Friday came and so did the ultrasound appointment. I woke up feeling pretty good about everything. I had decided again just like I had done with our Down syndrome ratios that I wouldn’t freak out about anything until there was something to freak out about, and if there was something, permission to freak granted.
We drove to Tampa to the USF campus and made our way to the specialist. I handed in a ton of paperwork I had printed, filled out, and answered a million questions. One and my favorite one being are you and your partner related? (ex. First cousins or brother/sister) it was fun to be grouped in on paperwork with people like this. *eye roll*
We were taken back pretty quickly and were met by the sweetest ultrasound tech. She talked us through everything and began doing her thing, taking measurements, and treating us so normally in regard to the baby’s diagnosis. We chatted and made small talk and I watched the baby on the screen, wiggling, kicking, and flipping around.
About 10 minutes in she switched to 3D, I was not expecting it, but got the clearest picture of Aria’s face. It is imprinted in my mind and heart. When I saw her, tears started to stream down my face. I wasn’t planning on being able to see her face until she was born, and seeing her face not a diagnosis brought so much healing to me. She was so cute it’s ridiculous, she already has my nose which is wild and I could already get such a good idea of what she will look like when she comes. For the first time in a while, I was excited again. I was just pregnant with a baby, like every other mom, and I was excited.
About 30 minutes later the tech wrapped everything up and told us the doctor would be back shortly to go over everything.
The doctor walked in, introduced herself and took a seat. She confirmed what we already knew which was the Aria had Down syndrome. She said that they look for specific Down syndrome markers and she had a few and began to dive in.
“She is missing a nasal cavity which is seen a lot in Down syndrome babies as well as normal babies but definitely Down syndrome. We also did measurements of the right side of her body and they are shorter then we are used to seeing at 21 weeks. And her heart, she has a condition called Atrioventricular Canal Defect. Basically, instead of her heart having valves that open and close to keep the blood flowing through the heart she has a large hole in the center of her heart. She will have to have open heart surgery when she is 4-6 months old to correct it”. And she showed us some pictures of what the heart was supposed to do and what hers was doing.
It was a lot of information and I was overwhelmed and didn’t even know where to start when she asked us if we had questions.
Tomas hopped right in, “So her nose, will she need plastic surgery?”
She laughed, “no you would never know it, a lot of babies are born this way and we have no idea, her nose looks completely normal it’s just a cavity she is missing on the inside, it won’t affect anything, we just look for it in Down syndrome babies”.
I was relieved Tomas asked because I was thinking the same thing but never would have asked.
Tomas continued, “ok and the right side of her body, it’s shorter?”
The doctor laughed again, “no, no I just measured the right side and I can tell she is going to be shorter based on that side, her limbs are equal length I assure you”.
Again, I was relieved, Tomas was asking all the questions I was terrified to hear the answer to as well as felt bad because here we were getting all this health news and we were concerned that we were going to have a baby born with a short right side and no nose. I laughed about it later but in the moment I was on the same fear path as Tomas.
I circled back to the heart. “ok so how bad is it?”
“Actually, it is the best heart condition to have considering the news. It’s one heart surgery, it can take place when she’s older and won’t affect her much once she born. If you had to hear something today this would be the news you want”.
Honestly, having her say all of that made me feel so much better. It looked like we were just in a season of the best news of the bad news and I could live with that.
We left the office and I really felt ok, it was still a lot to process but everything she said even though we were looking at open heart surgery seemed manageable and although it’s not how I wanted it to go, I could live with this outcome.
I updated our close friends and family and we went to lunch. Tomas and I started talking strategy and how we were going to tackle everything once she was born. He assured me we would have help and navigate this together, I wasn’t alone and we were just going to take it one step at a time. I agreed and I felt good about our plan.
That evening was a women’s church event called Sisterhood, I didn’t really feel like going but knew I needed to. I had decided there were going to be a lot of things I wasn’t going to feel like doing but I was going to make myself do it anyway. I didn’t want to isolate or recluse, I needed to keep putting myself out there and it started with Sisterhood.
I sat in the front with my girls Tara, Ruthie, and Christina surrounding me. It felt safe and for the first time in all of our relationships/friendships I really felt like I needed them. I knew they were there supporting me and I had had a rough week but so did they. It was hard for them, all for difference reasons and in different ways but still so hard.
Worship started and I was in it but not, I didn’t want to get carried away in the emotions of everything that happened and it just didn’t feel like the time or place to do that so I sang but kept it light, if that even makes sense.
It was a guest speaker, Julie Mullins, she took the stage and started sharing about her life. How she met her husband, there on-again-off-again relationship, it was light and she was funny, just what I needed.
Then things started to take a turn. She shared about her miracle son that they had spent years praying for turned three and stopped progressing, she was alluding to the fact that he had autism and she now had a special needs child to care for.
I sat there in shock, a million things going through my mind.
This can’t be happening, she isn’t talking about this, I’m not ready, this is too close, make it stop.
I took slow controlled breaths and made it through the story. I was determined not to cry and so far I was succeeding. I was in a weird paradigm of knowing it was God and He was using this to speak to me while simultaneously wanting to jump out of my skin and flee to the closest exit because this was not where I was supposed to be.
I made it through the story, she began to pray and the worship team began to sing. I don’t know what she said but I could feel myself breaking. No matter what I didn’t I couldn’t hold it in and I began to cry hard. I tried to pull it together for about a minute but knew it wasn’t going to happen there was a point of no return.
I quickly walked out and ran to the bathroom tucked away in the back of the church. I could hear Christina calling for me and I just kept saying “I’m OK, I’m OK” over and over even though I wasn’t.
She met me back there and I finally felt like I could start to breathe again. She validated my feelings and I just kept telling her I didn’t want to do this out there, I can’t break down in front of everyone, it was too much, the story was too close.
Tara joined us and the three of us were huddled in a tiny bathroom. Tara was fighting back tears I could see it on her face, but she was trying to be strong for me because she’s my baby sister and she knew I couldn’t handle to see her cry in that moment.
I gathered myself and Ruthie came in and swapped Christina out, the event was over and people were starting to leave. I felt like I could breathe and was calming down but my body was still shaking, like I was having a physiological response to everything that had taken place.
My girls were with me and I could tell they were there for me in a way that I had never had before. They were strong but yet had so much compassion. They had each done so many things that week to let me know they were thinking about me and how much they cared. Ruthie would leave me little things at the front desk of the studio, Tara would send me info on Down syndrome she researched and things to make the journey easier, Christina would text me nonstop encouraging me with text followed by, OK but how are you REALLY doing? To get to the root of what was going on in me.
They made me feel so much less alone and like I could really do this, because I had them. It was everything I needed. They were my girls.
December 12, 2018
That weekend I decided to take a vacation, a vacation from it all. No research, no reading, no doctors’ appointments, just living life and enjoying the weekend. We had such a blast with the kids and Tara and Ruthie’s families doing Christmas activities downtown all morning and early afternoon. It was such a nice retreat from it all, I needed it.
We got home and as we were pulling in the driveway I noticed someone parked outside our house, I didn’t recognize the car but Christina hopped out. I was so confused but also so excited to see her!
“I’m stealing you away!”
“Yup, Tomas is taking the kids and we’re going to get our nails done and grab coffee and hang out!”
I could feel my eyes start to water.
She literally just had twins and here she was shifting her focus to me and what I needed when she had so much going on herself. Her being there and what she had planned was exactly what
I needed. We hopped in her car and set out to unwind, unplug, and just have some girl time.
We talked for hours, mostly about motherhood and everything felt like it used to be. I even talked about Aria and some things I had found our specific to Down syndrome babies and that felt normal too. Things were losing their sting and I was figuring out how to navigate it all.
She dropped me off at home and I felt refreshed.
The kids woke up and we decorated a ginger bread house and destroyed the kitchen and dining room in the process. The kids were having a blast and so were we. I could picture Aria there and I started to get excited. Next year for Christmas she would be eight months and we would fully be into life with her. Things would be there new normal and all of the current feelings would be a thing of the past. It felt nice to think of it that way.
That night Tomas and I went on a date night and had so much fun. I am pretty sure we spent 90% of it laughing. It felt so good for our souls and everything really was starting to feel better. We weren’t ignoring our new reality or even denying it, we were accepting it and moving forward and choosing to enjoy life in this new way with our new reality.
We were finding our new normal and things didn’t feel so bad. Honestly, we were starting to feel really good.
To be continued….