Our Story – Lisa and Lily – a Story of Fear Turned into Love, Hope and Acceptance
Completed November 5, 2005
Pages: 1, 2, 3, 4, 5
So, the following week was my scheduled appointment with the High Risk doctors and the Genetic Counselor. I could not decide if I would have an amnio or not – I kept going back and forth and back and forth on the idea. I thought that if the level II u/s looked great then I probably would not have an amnio – I feared having the amnio… But, I remember clearly the midwife telling me that she had seen many level II ultrasound’s look great and the women still went on to have a baby with Down syndrome. She said that it was just a diagnostic test – the only way to be 100% was to have the amnio.
I talked Dustin into going with me to the doctor’s office. If nothing else we were at least going to be able to see the baby on the big screen and find out if I was having a boy or a girl. I so wanted a little girl – Dustin was adamant that he have a little brother – haha! But, I had visions of this perfect little girl who would go on to take all kinds of dance lessons and excel in school – Dustin had always struggled in school – I thought at last I would be able to have a child who hopefully school would come with no struggles whatsover! I had big dreams for this little girl I had envisioned I would have…. I dreamed of her being an honor student and a cheerleader and the girl everyone hoped to be around – I guess as parents we sometimes dream things for our children that maybe we hoped we could have been growing up. Oh yes, I had lots of dreams!
So, it was the big day – we were at the office and going to see the genetic counselor first and then after that we would meet with Dr. Bork. I had visions of the doctor from 9 and ˝ months (where Robin Williams played the Gynocologist) and me and Dustin laughed about it and Dustin made jokes about what this Dr. Bork might be like! Hopefully, he was American we joked! Finally, they called my name – my nerves were shot – my hands were shaking…. Brianna was the Genetic Counselor – she was so young I thought! She explained what the results of my Quad testing meant and explained how having an amnio is the only way to be 100% sure. She also explained in detail what having Down syndrome meant. She showed me Karyotypes of someone with 46 Chromosomes and then showed me a Karyotype of someone with 47 chromosomes. She explained that they are not sure why it happens, but by all means was it anything that I had done to cause this if it were so. She explained to me all of the things a child with Down syndrome would do – explained how a child with Down syndrome would do almost everything that a typical child would do, just that they may do it a little slower. She explained that there would be some type of mental retardation, but that there would be no way to tell – only time…. She was very hopeful and positive. I told her that no matter what I had no intention of terminating because I loved this baby more than anything already – nothing could take that love away. I would accept whatever God had given to me although I really believed that all would be well.
They took me into the room for my ultrasound and we met with the tech who would do the ultrasound and she explained Dr. Bork would come in after a little bit. I was so excited to find out if my gut feeling was right – I just knew I was having a little girl! She started the ultrasound and it was such an incredible feeling seeing my baby on the big screen. Dustin was even amazed! We saw her little fingers and her toes – she kept curling up – I was in love! Dustin was in love as well – he could not believe how well we could see the baby! The tech then started to look to see the sex of the baby and at first there was no cooperation! Then she was able to get a great picture and she said are you ready??? And I was like "YES!" and she said I would have to bet 99% that you are having a little girl! I had tears in my eyes – I was so very happy! I said I knew it – I knew it! Dustin even handled it well! I was on cloud nine – nothing could take that away! Finally, Dr. Bork came in and he was nice and polite and made me feel very comfortable right away. He did the ultrasound and looked at different things and made a couple of comments to the tech, but I did not really know what he was saying. Then he told me that it looked really good. I felt so relieved… He did say that the baby had a nasal bone which was good and that there was no nuchal fold or thickening. The only things that were noted was hydronephrosis which he said a lot of babies in utero have and usually it resolves on its own – also he mentioned something about an echogenic bowel – but, was even less concerned about that. I was probably going to refuse the amnio, but he was getting it all ready and so I figured well I might as well do it. It was probably a good thing that he was just prepared to do it, otherwise I might have refused it – so, I believe that happened for a reason. He explained what they were going to do – my nerves were in a ball and it felt my whole body was so tense. I had such a fear of that needle going in… Actually, it was over really quick – thank goodness! It was not really too painful, more of just a really sick feeling going in – I was glad to have it over. They told me that I should have the preliminary results on Monday – it was Thursday when I had the amnio.
I went home and took it easy… I kept looking at the ultasound pictures and called everyone to let them know I was having a baby girl! She was perfect and I loved looking at her pictures. I analyzed them and analyzed them for any sign that she might have Down syndrome, but I could not find a one. She was just a beautiful little soul living and growing inside of me – I was so happy! That weekend I took the pictures over to my sister’s for everyone to see – they were all amazed at how good they were. Everyone agreed – she was perfect! Anytime I brought up the fact that she might have Down syndrome – everyone was just trying to hope for the best and be positive for me. I was worried of all the things she might not do if she were to have Down syndrome – I tried not to worry, but it was there every second – every waking hour. I kept telling myself – it would all be fine – she would not have Down syndrome and this would one day just be a bad memory of prenatal testing. I would cry at night in bed when I was alone or when I was home by myself and no one could see me crying – I prayed to God every second of every day to please let her be ok – please let her have just 46 chromosomes. I never knew that one word "chromosomes" would ever come to mean so much to me in my life. I felt like I was just walking around in space somewhere. It was the weekend of my neice’s dance recital and I never knew how that night could make me so emotional. As soon as we got in there the little ballerina’s came out. They were all so adorable and beautiful – immediately it hit me like a ton of bricks. I had tears streaming down my face – I kept trying to wipe them away so quickly so that no one would notice – my whole family was there! But, all at once when I saw those little girls – my heart melted and my heart sank – all’s I could think was that if my baby does have Down syndrome then I would never ever get to see her on the stage. A stage I dreamt of over and over before I even knew she was a girl. It was the one thing I was excited about – putting my little girl in lots of dance classes and watch her up on stage dancing her little heart out! But, I was devastated that night – for I knew (or so I thought at the time) that if she did have Down syndrome then she would never be able to take dance lessons – it made me so very sad…. At one point Dustin had noticed I had tears down my face and he was like "are you crying?" and I was like no! But, he said yes you are – why are you crying? And I whispered in his head that I was crying because if Lily (oh yes we had already named her Lily Marlene – a name Dustin and I had picked out together) were to have Down syndrome then she would never be able to dance… And he was like "oh" but, even he thought I was in left field – Dustin always had all kinds of hope about Lily and Down syndrome – he never was sad for a moment about it. As the evening went on – I noticed sitting right in front of us was a middle aged woman who happened to also have Down syndrome – I thought it was so ironic. Dustin nudged me a little bit after I noticed her and he said hey – doesn’t she have Down syndrome? And I said yes I think so.
Pages: 1, 2, 3, 4, 5
