There is an amazing moment right before a pregnant woman has her first ultrasound. It’s hard to describe. You’re filled with excitement, anticipation, expectancy, amazement that this little person that you have been carrying around inside of you for weeks is going to become so real to you in a few moments. I had one of those ultrasounds with my son Jacob in 1996. I was much further along in my pregnancy – 36 weeks. We had not had an ultrasound at that point – we had chosen not to have one, the same choice made we had with our daughter Rebekah two years previously. My midwife Michele had some questions about the positioning of my placenta and, as we were planning a homebirth, she felt an ultrasound would be a good idea to answer these questions. So John and I went to the ultrasound full of emotions. However, it quickly changed to other feelings as we discovered that Jacob had a terrible heart defect called hypo-plastic left heart syndrome. He was born on December 12, 1996 and he died December 16, 1996. We had 5 precious days with him that were truly the most remarkable, love-focused, grace filled days of our lives so far. The days, weeks and months after his death were some of the darkest and most painful that I have yet lived. I am forever thankful for who Jacob has made me to be – he has shaped my heart in ways that wouldn’t have been possible if he had not been here to mold it. It is because of Jacob and what I lived through that my faith in God is what it is today. I have experienced an outpouring of God’s love and grace in my life that continues to this day and if it wasn’t for Jacob I’m not sure how well I would have coped with what God has called me to walk as Hannah’s mum.
Because there was another ultrasound. However, since my ultrasound with Jacob I no longer went into those rooms naïve. I now knew the kind of horrible news that could be delivered there. Keziah was born in 1998 – everything was great. And in January 2002 John and I were in another ultrasound room as the technician got a look on her face, one that we knew meant she saw something that we couldn’t see. She excused herself from the room for a moment and the bottom fell out of our world. What had she seen? What was it? She returned with a different ultrasound wand and, bless my husband; John immediately said to her “you must tell us right now exactly what you think you see”. He briefly told her our history and about Jacob. The technician told us she was almost certain she saw a cleft lip and palate. And at that moment the bottom stopped falling. Well, babies don’t die from that do they?? We’re not talking about the heart, lungs, brain, etc? That’s all great?? Well who cares about the rest that’s fixable, as long as she is going to live. And thus began our journey with little sweet Hannah’s beautiful face. She showed her face to us on the monitor and I’ll always remember it looked like a kitten’s mouth. I bought a little stuffed kitten the next day and kept it with me as a visual prayer point for the rest of my pregnancy so I could always remember her sweet little kitten mouth.
We didn’t know about Hannah’s other facial differences until moments after she was born. My midwife lifted her from my body and laid her on my chest with her affected side down – unknowingly. It wasn’t until the pediatrician arrived 10 minutes later to examine her that we discovered she had more going on than the cleft lip and palate. He started to throw around Goldenhar Syndrome and that her midline organs could be affected (heart, spine, kidneys, and brain). Our prayer team from church were told of this not long after and Arlee, our good friend, led everyone to pray that it would only be cosmetic – that which could be seen – that which lay hidden would be healthy and fine. And it was true. Every test came back negative. And it is still true today. She even has some hearing in her little left ear!
Hannah has challenged us all to examine what we think beauty actually is. What do we value as beautiful? And as the mother of three girls in this culture that degrades women, that judges women so harshly on physical perfection, I take all that Hannah has taught me very seriously. She had a year, when she was 3 ½ to about 4 ½ that she became incredibly sensitive to other peoples language about her. We were not allowed to call her cute or funny. She was so scared people would notice her little ear and then call her funny looking. It was okay to call her beautiful but never cute. It was a terribly heart breaking time for all of us. We spent that time reassuring her of her beauty and of how God sees her. We prayed for her a lot during that time and just kept reaffirming her. Becky, her oldest sister, was the most amazing gift to her during this time. It broke Becky’s heart to see this happen to Hannah and she worked hard to assure Hannah of her incredible beauty. Slowly she let it go and let us put her hair up again, let us say the word cute again, she wasn’t terrified of someone seeing her little ear.
I’m prepared for her to go through more of these seasons as she gets older and rediscovers herself in context of the world out there and how people treat her. We just keep praying for her to be shielded and protected for as long as she needs. And we keep praying for a deep, seeded and rooted sense of her beauty that no one or nothing can ever steal from her.