When I was pregnant with Jack, we had our red flag. At our 20th week ultrasound the radiologist noted that Jack had a "dilated renal pelvis". This seemed like an odd comment given that everything about his little body, including his kidneys measured within normal range. The recommendation was to follow-up with a ultra sound of the baby's kidneys to make sure they were functioning properly at 6 weeks. I just about fell out of my seat in my practitioner's office when she casually pulled a file from somewhere and informed me that one marker like this could indicate Down Syndrome. Before my stomach could come back up from the pit, she started talking to me about my options of terminating the pregnancy. Upset is not an accurate word to describe how I felt. Surprised. Angry. Outraged. Hurt. Terrified. No.
Later, I remember coming up the stairs of our house to tell Rob about my appointment. I burst into tears and remember saying how I couldn't handle something like this on top of my Dad's new and fatal diagnosis of Pancreatic Cancer. So, we convinced ourselves that she was making too big of a leap. That this simply wasn't the case and I pushed it to the furthest corner of my mind. I requested a second ultrasound but since I did not want put the baby at risk by doing an amniocentesis there was no way to know concretely whether he had Down Syndrome or not until Jack arrived. They did look for some of the soft markers such as heart defects and larger spacing between the lobes of the brain but nothing really stood out. Somehow, I think I knew. Every time I would look at the ultrasound photo on the fridge, a worry would stir within me an I would pray. Please God, let the baby be okay. Don't let him have Down Syndrome. Can a person hold their breath for 20 weeks?
Maybe for 18. Jack was born 2 weeks early at 11 pm after I had laboured for 2 days. He was born at home as was Levi. There is only one word to describe Jack's arrival into the world: beautiful. I remember pulling him to me only moments after he was born and looking into his wide, dark eyes. He was a strong nurser from the start.
A flash of recognition hit me it seemed like I stopped breathing. As the midwives took him away to do their examination of him, I could hear them talking quietly amongst themselves. Rob and my sister-friend where with me and I wanted so badly to ask them if they had seen it too. Did they glimpse the secret Jack had been keeping from all of us? But I was afraid that if I voiced the question than my worst fear would become a reality. Then they approached me with serious faces and gently expressed their suspicions that Jack indeed had Down Syndrome...wide eyes, lower ears, deep crease in the palm, spaced big toe. These things all seem so superficially unimportant, don't they? Before they could finish, the tears came as a wave splashed from my heart to my head and I remember saying "I know already, I know". I knew the moment I laid eyes on him. You look so much like Jasmine when she was born, but isn't there something more in your eyes, in your tiny nose? Jack was a beautiful baby. Blond fuzz on his body and head, chubby fingers, ruddy cheeks. I am told that people with Down Syndrome often look more like their families than other people with Down Syndrome. With Jack this is very true.
How wonderful triumph and the exhilaration of meeting Jack for the first time can coexist with such heart-break and fear, I will never understand. And so began a long period of mourning and celebrating this child I love fiercely but wanting so desperately for it to be different. I prayed over and over for God to do a miracle and to take the Down Syndrome away. It wasn't fair for Jack to come into the world with such a heavy label and a long list of things that were wrong with him. The clearest thoughts that defined this time were:
This wasn't supposed to happen.
I do not think I am strong enough to do this.
Somehow, Jack coaxed me out of the corner with his gentle yet firm grip on life and desire to be loved. God gave me strength to move through this day and the ones that followed. My thoughts became: He is so beautiful. He is mine. Yes. How do I go on from here?
I know that this leaves the story hanging but I think I will leave this post here and carry on tomorrow with the rest. Please bear with me.