A year ago today, I got startling news when going to what was supposed to be a routine prenatal appointment. The ultrasound the day before had found that the baby growing and moving in my belly had enlarged ventricles in her brain and signs of Arnold Chiari Malformation. Before I even left the building, I was scheduled to go to Sacramento to meet with a geneticist and have a level 2 ultrasound. Luckily, my mom was already on summer vacation (she's a teacher) and had come to the ultrasound with me the day before and the appointment on that day, so I didn't have to drive myself. Instead, I called my husband and got on a 3 way call with the geneticist who asked us a million questions, but didn't really tell us much. My mom drove to Sac, while I cried worrying about this long awaited baby. Aaron left work and met my mom and me for lunch where he tried to convince me to have an amnio if they couldn't tell what was wrong from the level 2 ultrasound and let me tell you.... that was NOT going to happen. No offense to anyone who has had one, but I WAS NOT going to risk this pregnancy just so we could be "better prepared" for what was to come. Not happening. We headed over to the genetics dept to meet with the geneticist for a few minutes before heading to the level 2 ultrasound. The tech was awesome and obviously very experienced. She printed a TON of pics for us, which was really nice. Here are a couple of my favorites
The baby was sitting up really high with her butt pressed into my ribs, so the tech was having a hard time getting a image of her full spine. She had me get up and move around, use the restroom, etc. After a bit of what I like to call ultrasound yoga, we were able to twist my body, the bed and ultrasound wand into just the right position so they were able to see just what they needed to see. The tech went out of the room while the perinatologist viewed the images. Aaron and I waited in silence (except when he again mentioned an amnio.... still not happening) until the perinatologist came in to give us the news. Our daughter had a neural tube defect- Spina Bifida. We were told she would probably not be able to walk, would have urinary and bowel incontinence, and depending on how bad the extra fluid got in her brain, she could have brain damage and cognitive delays. We were crushed... absolutely crushed. We went back to the office with the geneticist who gave us the option to terminate. Really? We were not going to throw away this baby that we longed for. We were given a lot of bad (incorrect) information from the geneticist and were told we would be getting lots of calls and appointments set up in the coming days. We all left with lots of questions, fear, sadness, and, honestly, some anger at God. What had we done to deserve this news after trying and praying for this baby for so long? It was not fair. That night and the next couple days were filled with lots of tears and anxiety. I had always felt like I was supposed to be the mother of a child with special needs, but had told God on several occasions, "anything but Spina Bifida." But, here we were... God had given us a child and she was going to be born with Spina Bifida. It took me only a couple days to get to a much better place. I realized rather quickly that God had made me with certain gifts and given me specific life experiences because I was meant to have this precious girl with special medical and physical needs. I could do it and everything was going to be ok. My husband has taken a lot longer to come around... honestly I don't know that he has really. He's still pretty angry at God and not happy with life in general. Don't get me wrong... it is horrible to watch your child go through painful surgeries and really hard trying to weed out what is "normal baby stuff" and what is symptoms of Chiari compression, syrinx compression, shunt failure, etc. It's hard, stressful and heartbreaking. But, the overriding feeling I have when I look at my daughter is joy and love. She is beautiful, strong and so full of joy. I look back now at how I responded to the news that my daughter would have Spina Bifida and I'm quite disappointed in myself. Natalie is perfectly and wonderfully made just the way she is. And I am perfectly and wonderfully made to be her momma and meet her needs just the way SHE is. Why did I ever doubt God and His perfect purpose for our lives? This life will continue to be harder than I could have imagined, yet more wonderful that I could have imagined as well.