Are These Feelings Normal?

by Shelly Aboagye

I am a mother of a child with SA/CRS. I want to bring up something no one wants to talk about. I don’t know if it’s because we feel it would make us look like bad parents or if maybe we feel embarrassed to admit we had the thoughts and feelings we had when we found out we were having a child with SA/CRS. I looked all over to see if my feelings were normal but found nothing. I asked some of the first parents I met and never got a reply, so I never brought it up again. I often wonder if I am the only one. But in experience with other things in my life, I’m sure I’m not the only one. So here it is.

I remember the day I found out I was pregnant with my sweet little bit. My husband and I were so excited that we were finally going to have our wish, our baby. We had been trying for about a year, so when we found out I was pregnant, we were so excited. I imagined holding a little girl, while my husband swore it was a boy. Guess we’ll have to find out. Every time we would walk by baby stuff, we could only imagine how wonderful it was going to be watching our little baby grow, learn new things and turn into this very successful person. I knew my life was about to change, but I had no idea that my life was about to change in a way that would test my emotional and mental strength. What came next, I have to say, was the most difficult time in my life. But I made it through and so can you.

On June 24, 2011, my husband and I got the news no one wants to get. I went in to get another ultrasound (this was the second one due to the fact that the doctor was concerned about the first one). I noticed that her legs were still in the same position as the last time and they weren’t moving. I noticed because we had asked for the sex of the baby and the legs were in the way. I asked the doctor about it and then he told me he thought our baby had sacral agenesis. I asked what it was, but he wouldn’t tell me. He said he wanted to run more tests to be sure, but once he knew for sure he would talk to us about it.

When I got home, I decided to get on the Internet and look it up. I found very little, but enough to put me in shock. The first video I saw shocked me even more. It was an adult who was amputated from hips down. It took all I had to not have a breakdown. All I could think of at the time was that I was having a monster. How do I handle having just half of a person? Why would God do this to me? What did I do so wrong to deserve this? I can’t put this baby up for adoption because no one would want it. I don’t believe in abortion because it’s murder, so that wasn’t an option. How would its life turn out? Would it grow up to be able to take care of itself? How would it go through life without love from a man? Would people accept this baby? How could I bring it into this world with all these cards stacked against it? Then all I could do was to go to my room and cry. I don’t think I ever cried so hard. I knelt down by my bed and begged God to heal this baby, to allow this news to be wrong. I prayed this prayer until the MRI two weeks later. I had so many things going through my head. I couldn’t eat or sleep for days.

I got the confirmation of the baby’s sacral agenesis when we went to the hospital for the MRI. Unfortunately, the doctor didn’t know a whole lot about it but assured me my diabetes caused it. On the way home my husband kept asking me to have an abortion, but I refused. Two weeks later, he took off in the middle of the night to never return. He just couldn’t handle the news. To make matters even worse, I couldn’t work due to the stress it was causing the baby. So now what? I had no income, and the only person bringing an income into the house had just left. How was I supposed to keep my home, put food on the table, get gas to get to doctor appointments (which were every other week and 2 hours away now, due to complications)? I was beating myself up that my diabetes had harmed my baby. Along with all of this, there was additional stress because my son, 15 at the time, was causing problems at school, stealing from everyone, and having issues that wound him up in a boys’ home, three hours away. It even lost my vehicle. My life, to me, was overwhelming and I wished it were over. At the time, I blamed God and this baby for destroying me. I didn’t think the bad news was ever going to end.

In the meantime the good Lord led me to Jessica’s group on Facebook. I learned so much there. I learned that doctors don’t even really know what causes SA/CRS. So, don’t beat yourself up if the doctor tells you that diabetes caused it. I don’t believe this. It seems only 16% of babies born with SA/CRS have mothers with diabetes. These people in the group are willing to share so much, whether they have SA/CRS or are the parents of kids who have it. They are there for you when you are having trouble and are not sure what to do. I then also started watching other videos that were showing all the things these beautiful kids and adults can do. I saw some were married and have kids. Some have jobs and live on their own. Some were in sports like playing baseball or competing in swim competitions or running or rolling in track. Some were walking on their own legs or prosthetic legs. I was so amazed. This showed me that my baby could have a wonderful life, just in a different way. I saw that there are people out there who would be more than happy to adopt these beautiful kids. But I chose to keep my baby. I am so glad I did.

I have to thank God now for shining through during the hard times. Though I hate to admit it, I was able to get government assistance for housing and food, although that didn’t come till after the baby was born. But, my mother’s church and Life Skills Pregnancy Program helped me with gas to my appointments. My mom helped with whatever else I was lacking, and she was wonderful in making sure she went to all my appointments with me. And she was there during my delivery, too.

The day I delivered my baby, I got a call from the doctor. The amniocentesis I had done a few days back showed the baby was under stress. He told me to not expect to have a baby to bring home. I couldn’t believe it. After all I had been through and just as I was finally coming to accept and love my precious baby, I was going to lose my baby. All I could do was to pray that I could stay pregnant a just little longer before the Lord came to take her home. I watched through the metal reflection of the light above me as they delivered my little angel by C-section. As they were pulling her out, I was trying so hard to hold in the tears. I thought this would be the first and last time I would ever see my baby . . . but then she started to cry. The nurses checked her over, cleaned her up and then brought her over to me for a moment. I got my little girl. I was so happy that she was healthy after all. Within an hour, she was off the oxygen; she was holding her own temp and she didn’t have to have surgery to create an opening to poo like the doctor said would happen. I named her “a miracle,” “born on Friday.”

Now that she’s here, I don’t see her as having any kind of disability. She can do anything she sets her mind to. She isn’t a monster or a half of a person after all. She has legs and feet, even though she may never use them, and a soul just like everyone else does. She is such a wonderful person. I don’t think I’ve ever seen anyone as full of life as her. I now know I can handle anything that comes my way with her. I can’t even imagine my life without her. She makes me laugh and fills my heart with joy every day. Everywhere we go, people stop me to see her. They’re always telling me they have never seen a baby so beautiful. People seem to think she’s a doll until she moves. She brings light into so many people’s lives. Everything I went through during my pregnancy was well worth it and I’d do it all over again. I just hope the good Lord allows me to live long enough to watch her prove the doctors wrong, to see her get married and have her first baby. I know she will live a full and happy life. She is strong mentally and physically. She is also very determined and learns new things with ease. There is no doubt in my mind that she will be just as successful as her mentors. I am so glad God chose me to guide and take care of an angel.

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