I went through a mourning period that lasted for several months. There were so many nights that I woke up, wide awake at three in the morning, and all I could do was look up pictures of other bilateral cleft children online. Don't do that. The pictures there gave me nightmares, children completely distorted by horrific mouths and off-set teeth, noses bent oddly out of proportion. I started believing I was growing a little monster, and I resented ever becoming pregnant. Maybe I WAS too old to be having children. Maybe the medication my obstetrician had prescribed somehow messed up my baby's development. Or was it all those days of missed prenatal vitamins? I had messed up, and my baby would never find happiness, and would lead a miserable life.
It didn't help that my parents were in a state of shock. Instead of comforting me, or helping me find out more information, they began ignoring my pregnancy, never mentioning my son, or asking how I was feeling. I felt like I had been plastered with a badge of shame. I resented them, and avoided them whenever possible. I couldn't face them, certain that they felt I had brought dishonor to their family. They had already expressed concern earlier on in my pregnancy at me having more children, worried I wouldn't mentally or financially be able to care for them. They had no faith in me before, but this? This seemed to be the final straw of their disapproval. With my husband gone at work all day, I felt completely and utterly alone.
The day I found out about my baby's cleft, I had a very difficult night. Most of it was up, crying and worrying. I thought about how all of my other children's births had been announced proudly on facebook, accompanied by about a thousand pictures of my newest bundle of joy. I wondered how I was going to even do that. Would my friends be horrified when they saw the broken face of my son? I knew they were going to judge me for having an ugly baby, to talk behind my back about the tragedy of having a cleft baby. They would feel sorry for me, and smugly look at the rosy, perfect little lips their own babies had, and post all of those pictures for me to compare my own child to. But I knew that if I was ever going to get through this, I was going to have to have the support of my friends. So, late that night, I took a deep breath, and announced the news. The following is the post I wrote:
This is a difficult post for me, because it means putting my vanity and pride on the line. Every mother's desire is for the world to love and accept her children, to see their beauty and perfection the way she sees them. Today at my ultrasound, we found out that our sweet little son is going to be born with a bilateral cleft lip and palate. My heart was crushed, because I knew what it meant. Not only will I not be able to nurse him, but he won't be seen as beautiful and perfect. I'm so scared for the looks he'll get, I'm scared for the difficulties he'll face, and for the surgeries ahead of him. I guess the truth of it is what if I don't see him the way a mother hopes to see her new child? There's been lots of tears today, lots of fear and doubt.
I was flooded with love and support. I felt like I had hundreds of arms around me, ready to boost me up and help me through this. It was a relief, feeling like I had people who would be there to cry with me and encourage me. Some friends gave me names of their own friends who had babies that were born with clefts. Two of them messaged me with their own stories, and shared some websites with me. I joined a facebook group called Kids with Clefts Utah, and another one called Cleft Mommies. I found a few blogs, and was able to look at pictures of other people's beautiful babies. They looked nothing like the original pictures I had found online, which was a huge relief. I was finally on my way to getting educated and a establish a good support group. It didn't always make it easy, though. It didn't take away from the fact that I was going to have a baby that was disfigured.
There were some days that I breathed easy, and felt blessed that I had been given a great gift of overcoming the trial of fear and worry. But then I would be overcome by feelings again of grief and fear and shame and guilt, and every other negative feeling you can possibly feel. It was a terrible roller coaster ride of feeling at misery's depths, and then rising above them in comfort and peace. Eventually, as my due date approached, the fear of having to deal with a cleft was gone. I had met with my plastic surgeon, Dr. Schmelzer, in Salt Lake. I was given two different specialty bottles to try: a Johnson-Mead squeeze bottle, and a Dr. Brown's bottle. I had a website to research: www.cleftopedia.com. I was armed with knowledge and had a cleft team. All that was left was meeting my baby. But there was a little problem. I didn't want to meet him. I was scared to look at him. I had two more ultrasounds to check on his health (due to my age), but his cleft was covered both times. I had no idea the extent of it, and was left wondering and worrying. How on earth would I feed him? How on earth was I to love his face? What if I didn't love him? I wasn't looking forward to the birth at all, and I felt like the worst mother on earth. I knew I still had a lot of healing to do.
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