I was just over half way through the pregnancy when it was confirmed that my baby girl I was carrying in my womb had Down syndrome. I had a blood test done that is 99% accurate for detecting for DS. The results came back 99% positive that she did in fact have DS and along with the findings of her heart defects and other soft markers it made the results 100%.
I will never forget that phone call that came from the genetic counselor. I jumped out of my skin when the phone started to ring. My heart beat fast and my stomach knotted as I lunged for it and answered it hastily. I had been anticipating the phone call all day and was ready to find out what lay ahead.
The genetic counselor got right to it and informed me of the test results with a very matter of fact tone in her voice. I could feel the lump in my throat growing. I tried so hard to keep it together. I couldn’t though. I could hardly talk to the lady on the other end of the line. My world was changing faster than I could keep up with, hers wasn’t. It was another day for her, making phone calls, sending emails, following up with other moms…
My world stopped spinning.
I hung up the phone and called my husband and through the sobs explained what I had just learned. He was a rock as I shared the news with him. I think he already knew in his heart the results from our appointment a week prior. I probably did too. I wasn’t ready to accept it until I had the test results in hand. Even at that point, there was still a part of me that would on occasion wonder if we were in the 1% category mostly when people would gently remind me there was always the 1% chance that she wouldn’t have DS. I would shake my head and cry inside and through burning eyes look at them, not sure of what exactly to say next. I knew they were trying to be helpful, but for me I was facing the reality that my world was changing quickly, their’s was not. At least not in the same way mine was.
So many emotions flooded me. I couldn’t get out of bed in the mornings. My heart felt heavy. I began the grieving process, grieving the life I thought I was going to have, the baby I thought I was going to have. There was so much fear in the unknown and I was standing right at the bottom of the mountain looking high up into the clouds of the unknown. I had no idea what I was in for. Tears became a daily part of my routine, the girls constantly offering hugs and stuffed animals and asking why I was so sad.
It was a mix of things, really. I was facing one of my biggest fears, of having a baby with special needs. We were talking heart surgeries, NICU stays, hospital birth, so many things. Life was going to be completely different than I had planned. God knew it all along, but I didn’t. I felt unprepared.
Looking back, I wish I could have sat down with myself. My now self and my back then self. I would look at myself with compassion and empathy. Offer a hug of support and understanding. I would lend a listening ear and let the tears flow.
But then, I would look at myself and say, it’s all going to be ok, even though my pregnant self would have not wanted to hear that. Regardless of the unknown and regardless of any of the outcomes. You have Jesus. That is what you need. And Down Syndrome? The very thing you are scared out of your mind about because you have absolutely no clue about any of the beauty it brings will be the exact thing you come to love the most about your precious baby you are carrying, that baby who is being formed in your womb by the Creator of the universe, the one whose kicks you cherish, the one whose heart beats to it’s own rhythm. He is knitting her together, to absolute perfection.
Yes, there will be hard days and plenty of things that come up that leave you feeling like the wind got knocked out of your sails, plenty of tears, and then even more. You will look into those beautiful blue almond shaped eyes and wonder why you were so scared. Why you were so scared of this tiny perfect little baby.
This perfect baby, like the two other perfect babies I birthed. She has the same needs they did. She wants to be loved. She wants to be held and fed and changed. She wants to take naps and play and laugh and smile.
The moment my eyes met hers after she was born, my fears began to melt away. I had no idea it was going to be like that. I worried during the pregnancy of whether or not I would bond with her the same way I did with the other girls. I worried if I was going to be able to breastfeed her or not. I worried if she would love me and know me as her mother.
And you know what? She does. I have never seen her light up for anyone else the way she does with me. I scoop her up into my arms and she does the happiest little bounce I have ever seen from any baby in my entire life. She opens her toothless mouth as wide as she possibly can, her eyes wide with the most perfect twinkle sparkling bright, as she bounces her entire body up and down, arms waving rapidly in the air. It is just too much.
I didn’t know there would be magical moments that would outshine the hard. Moments that I would want to bottle up and keep forever.
I would also tell my pregnant self that it is absolutely 100% ok to have all of the emotions I was experiencing. I felt guilty throughout that last half of my pregnancy. I was guilty I was crying all the time. That guilt turned into shame. And that shame kept me silent. I couldn’t bring myself to share with others. I closed myself off except for the handful of close friends I shared most things with. This was all part of me processing through the information I had just been delivered, but there is no shame or guilt in my feelings. It was new and different and unknown and I needed to process.
I would have also told myself to have grace. Grace for all of the emotions and even the emotions of others. Grace covers so much. Each day, I realize that when I feel like I have run out of grace, there is always so much more.