The day that changed it all. I can remember every little detail as if it happened five minutes ago, a day that no mother wants to ever imagine let alone actually take part in. A day that darkness would try to prevail: February 24, 2016.
That day started just like any other day, except for one thing... I just didn't feel well. I remember telling my husband that morning "Something just doesn't feel right, I think I'm going to stay home and just rest today." I was worried that maybe I had contracted the awful, horrible, terrible flu bug that the rest of my family had so kindly shared the previous weekend when we were with them.
I had a previously scheduled appointment with the nurse at my OB office that afternoon to check my blood pressure and protein. I figured I would sleep it off that morning and if I still didn't feel well I could just fill them in that afternoon. The appointment started off just like any other appointment except for one thing... I still just didn't feel well. My nurse appointment turned into seeing my OB which turned into, "I'm going to send you to the hospital to run a few labs and tests. You can go home first and get some things or you can go straight there. I'm thinking everything will be fine and you'll be home in a couple of hours but let's just double check some things. I'll meet you there shortly.
I will never forget that moment when this "average day" took a quick spin, when my OB walked into the room at the hospital and told me she had called a Fetal Monitoring Specialist to come perform a follow up ultrasound because something didn't seem right with the one that was just performed. She explained to me that the general sonographer found extra fluid in places he shouldn't have but that she didn't really "trust" these readings because nothing was really adding up so to just sit tight and she would be back to follow up. At that moment I felt my heart racing a little faster so I began to talk myself down "Kate, don't worry, your doctor thinks it's a false reading, everything will be fine." Nevertheless, I remembered thinking it was time to text Adam and tell him he might want to start making his way towards the hospital as soon as someone arrived to watch Levi just to be safe.
The specialist arrived about 30 minutes later and began performing the ultrasound. I remember not watching the screen where he was examining every aspect of my daughter (which normally I would LOVE to watch) but instead I found myself studying his face and attempting to read every emotion or expression that crossed it. Nothing. Not once did he look away from that screen. I remember him asking me halfway through the exam, without looking up "Have you ever been tested for Down syndrome?" and how quickly I responded "No, my husband and I opted out of the early testing." Adam and I always opted out of any of the extra testing because we knew we would love this baby no matter what came our way. My thoughts than shifted gears into "Ok Kate, he's going to tell you Harper has Down Syndrome, definitely a game changer but no biggie, we got his." It was then that the most intense moment of the day happened. It was the moment when the specialist finally looked up from the screen he had been so intently staring at. It was the moment when he would look me straight in the eyes and I would see on his face an expression I will never forget, an expression I could tell he was trying to put forth with everything he had and one that I can only describe as his "doctor face". Later I would come to find out that he was most certainly holding back tears.
"Your daughter has what we call non-immune hydrops which for her entails fluid around the lungs, heart and under her skin. I have to be straightforward and tell you this is a very bad prognosis and this is not a place I would want any parent to be in. You and your husband are going to have a lot of hard choices you are going to have to make in the near future. If she does survive this, even the road to recovery will be very long and hard. I'm so sorry".
I'm sure there must have been more to what was said just then, but the rest was really just a haze. For the first time in my life I literally felt my world collapse as I then too had to put on my "doctor face" and try to make sense of everything he had just told me. It took every muscle in my body to hold me up on that table, to not fall to the ground and weep uncontrollably. I knew I had to be strong in that moment, for myself and for my daughter, Harper, I knew as a Mom the best thing I could do for my daughter now was to remain as calm and optimistic as my spirit would allow. All I can remember thinking is "how could this be happening?. The only text I could muster up enough courage to send to Adam looked like this....
"Bad. You almost here yet? I don't think I can tell you over the phone."
A few minutes later Adam came through my room door and the flood of tears I had been holding back were released. I barely got the sentence out that our daughter may not survive when the specialist walked back into the room. Earlier I probably would have cringed at the thought of him coming back, associating him with nothing but sadness yet at this moment I was relieved because the thought of having to tell Adam the whole story out loud was unfathomable. I felt that the more I said these words out loud than the more they would become real and for now I wanted to believe that the world around me was just a horrendous dream that in the morning I would wake up from and all would be forgotten; that everything would just be ok.
With the passing of our daughter 4.5 weeks later and with about a month of mourning underway I've begun to the see the world from a much different perspective. I find myself seeking out the light because it is there that I feel pieces of her. I look for the joy each day, the laughter, and the good moments because it is there that I feel a slight tug at my heart; where I find myself saying "This is Harper". It would be so easy to dwell in the overwhelming darkness and sadness that surrounds me but it's only there that I remember her, I can't feel her. I want so much more in this life than just "thoughts" of my daughter. I have added a new saying in our house, "Begin each day with a grateful heart" because it is through that heart that we can begin to accept God's grace and mercy. He never said this unimaginable journey would be easy but He did promise to walk alongside us during each step we take. When seeking the light I am able to live this embodied life more fully and I am one step and one breath closer to being able to hold my baby girl once again. I see now that Levi, my son, is my reason for living this earthly life to the fullest and Harper, my beautiful daughter, is my reason to look forward for what's to come.
So with that I will pick up another broken piece on this unimaginable journey of life and place it carefully and thoughtfully where it belongs.
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