Our Story – Lisa and Lily – a Story of Fear Turned into Love and Hope and Acceptance
Completed November 5, 2005
Pages: 1, 2, 3, 4, 5
We went back to my sister’s house for a little bit and I told her how I had cried because Lily might not ever be able to dance. She was like – of course she is going to dance – she will dance no matter what! I was like really are you sure? I was worried about what if people don’t want to teach her how to dance – maybe she would be a burden – I was so worried about everything…
The rest of the weekend I spent doing lots of research. I spent a good deal of my time on the Baby Center website just searching for any little bit of hope that my results were just another false positive. I had posted my story and was reading all of the posts that responded. Everytime I saw someone who had a ratio close to mine and ended up having no problems I felt more positive that all would be well. I also went to the Down syndrome message board on baby center and read a lot of posts there as well. I went to websites of people who had children with Down syndrome. I found one that really stuck out for me and that was for Alexandra Rose – I remember there was a picture of this beautiful little girl sitting at the piano playing. And being a piano player myself – I thought oh I could see this being my little Lily. Her parents had a beautiful post about her and there was so much hope that it made me a little more peaceful. It was sites like these that helped ease my fears about Down syndrome and gave me a little voice inside that said I can do it if this is Gods’ will. Thinking about her actually having Down syndrome made me cry – one minute I was at peace, the next minute I was sitting in front of the computer balling my eyes out. It was such an emotional time. But, I still held onto the fact that lots of people had a 1:10 risk and turned out fine. So, for the rest of the weekend I hoped, I prayed, I cried and I plugged myself into the computer away from the world searching desperately for an answer to make everything all right with my world again. I held onto hope – that was all I felt I had to hang onto – it kept me going when I felt like falling apart.
Before I knew it, it was Monday the day I dreaded and hoped for so much. Dreaded because I was afraid of the news I might get, yet hoped for because maybe I was going to get good news and be able to put this whole prenatal testing nightmare behind me. I knew for sure that if I ever were to get pregnant again (which I knew this was my last one) that I would never put myself through this testing again – I would either forgo all testing or just go straight to the amniocentisis. I kept busy all day and kept myself out of the house running errands and shopping. I thought if I was not at the house when she called then I did not have to talk to her. I had so much fear surrounding that call that I felt like I was walking around with 100 lbs of bricks on my shoulders. I would pop in at home every once in a while and every time I did and there was no phone call – I felt more relieved. For every minute that went by with no phone call made me feel that it must be good news. I would leave the house again though just after a few minutes for fear the phone would ring – my stomach felt like there was a storm brewing and I thought I was going to be sick all day long. Finally, it was close to 4:15 and I was really tired. I decided I better just go home and take it easy and deal with whatever were to come. I was relieved once again that there were no phone calls. But, just a little after 4:30 the phone rang. My heart felt like it was going to burst out of my chest and I was so afraid to look at the caller I.D. and see who it was – I picked up the phone and looked and sure enough it was from Oakwood – my heart sank even further…
I answered the phone and on the other line it was Brianna. She said is this Lisa? I said "yes" and she said "Hi, it is Brianna from Oakwood and we just got the preliminary results back from your amnio. I said "yes"? My heart was pounding so hard. I knew my life could change forever with the words she had to tell me. And then she said - "It appears your baby does indeed have Down syndrome, I am so sorry". At that moment it felt like the earth was spinning out of control and I was somewhere way far away. I was like what? I was in shock and the tears just came streaming down my face… I tried to talk – I could not – I tried to stop crying uncontrollably, but I could not stop crying!!! She said, "I am so sorry to have to call you with this news, I know this is not the news you were hoping to receive". And I said no, no it was not! I was thinking of course this is not the news I wanted to receive please please please let me wake up – please tell me this is all just a bad bad dream. Please God – please let this not be true.
Somehow I got it together enough to speak and so, I said, "Well this is just the preliminary results, right"? They will finish the test and then give me the real result in a couple of weeks to be sure, right? And she said, of course, they will complete the test, but they had tested 15 strands of DNA and were comfortable enough to say that this would not change and indeed my baby did have Down syndrome. She set up an appointment for me to come in and talk to them; she said I know you plan on keeping the baby. And I said yes of course; I told her that when we met and she only had the most positive things to tell me. And so it was at that point we said our good byes and hung up.
As soon as I clicked off the phone, I broke down completely – face down in the couch crying like I had never cried in my life. Crying like I had just received news of a death of someone who I loved so very much. That is the only thing I can relate the pain to is it was the same pain I had when my father died. I felt so out of control and I just could not fathom that this could be happening. I was hysterical and all alone. Dustin had been staying at a friend’s for a few days and I was all alone completely lost and broken inside. I wanted to be alone though – I wanted to just crawl in a hole and go away forever. I was so sad for Lily – I kept apologizing to her and telling her how sorry I was that she was going to have to go through all this and that this had happened to her. I felt sadder for her than I did for myself – it broke my heart that my beautiful baby would have to be born like this. I was so afraid for Lily and all that she might have to go through. I wanted to call someone yet I could not speak. I went to the store and bought a pack of cigarettes – I had quit when I found out I was pregnant. I went back to my house and sat on my bed and cried and cried and smoked a cigarette. But, then I felt even worse for smoking while I was pregnant and I cried even more… I was mad at God and I was mad at the world and I was mad and hurt and sadder than I have ever been in my whole entire life. I asked why me – why this beautiful innocent baby – why would things never be the same??? Why, why, why???? Nothing had ever broken me the way that the news of Lily having Down syndrome did and I realized this was even worse than someone dying. At least with death it just ends and you go on. What was I to do with all of this? How would I ever heal my baby – was it my fault? And so I just lay in bed and cried and cried and cried some more..
Pages: 1, 2, 3, 4, 5
