I wanted to share C's birth story out here in cyberspace. I found the stories that others share so helpful. Especially when they described the true emotions they felt. It let me know that my feelings were ok and that it would get better.
We were so happy to be expecting our baby. We had 6 pregnancy losses and finally we were down to the end of the pregnancy. A date to induce had been set and I was wrapping up everything at work to be ready to stay home on maternity leave with my healthy baby.
It was decided to induce early due to very low amniotic fluid. The induction dodn't go very long before the baby was in distress due to cord compression because of low fluid. The dr. recommended a C-section and I didn't care how the baby got here as long as he/she was fine.
At 12:19 am C was born. That cry was the most beautiful sound I have ever heard. She was brought to me quickly and then wisked off to the NICU. She was 3 1/2 weeks early so we knew she may need a little oxygen.
45 minutes later our whole world came crashing in. The neonatologist came in and told us that C was breathing well. I was so glad... she was fine. He then went on to say the worlds I will never forget. He told us that our daughter, the one we had waited for for over 6 years had facial features consistent with Down syndrome. I remember shaking my head over and over and over. I just covered my eyes crying thinking could shake my self awake, shake the words out of my head. I looked at my husband and he had no color left in his face. I was telling him to sit down. I was so afraid he was going to faint. It was all so surreal. It was a true out of body experience. The drs left us alone and my husband asked the nurse if we could have the room to ourselves. She brought me a box of hospital kleenex and I remember thinking that the box was way too small. I needed a lot more kleenex. She left the room and waited in the hall. I cried harder and more than I ever have in my whole life. I had lost pregnancies but this loss was 1000 times worse.
The nurse came back and said our room was ready. They said they would take us to the nursery on the way up to the room so we can see her. In the moment I regret more then any other, I said no, I didn't want to see her. The baby I waited for so long, prayed for, the one whose heartbeat I listened to with a smile everyday for the last 5 months, I didn't want to see her. What kind of mother doesn't want to see her own child?
I remember the lights going up to the room. light, ceiling tile, light, ceiling tile... all the way up to the room. The nurse taking us to our room asked what we had. Obviously she didn't know about the ds right? If she did, why would she ask. We had the "Down syndrome baby", the imperfect baby. Through my sobs I told her we had a girl. I was now forever denied the joy that I had wanted. We did not find out if she was a boy or a girl so that we could have that joy of saying "it's a girl". There was no joy.
Up in the room it was all so surreal. The room seemed so small. My husband was laying in a chair. We were just in shock. He said "I though this was the one for us". He left the room to get some fresh air and I made the call to my parents. It was about 2:00 am. My mom answered so excited and I tried to sound happy and upbeat when I said it's a girl. Having mother's intuition she said what's wrong. I told her they think she has Down syndrome. In disbelief she said what, so I repeated it and just fell apart. That would be the first of many times I would have to say she has Down syndrome and I thought at the time that I would cry every time I said it for the rest of my life.
The nurse came in and told me to get some rest. It was such a stock line to use, like I was going to get some sleep. My head was spinning, my eyes were burning and my nose was raw from the cheap hospital kleenex. I laid there wondering what people would think if I put her up for adoption. What would happen if I just walked out of the hospital without her. I hate that I had those thoughts now but it was an irrational time. For me, those were not an option but I sure did think it. I was not thinking clearly. It was fear, sadness and confusion taking over my head.
At 11:00 am we went to the nursery. They were doing an echo on her so we had to wait. I kept watching the techs face looking for any sign of if her heart was ok. He gave me no expression. My brother in law came in then. He is a perfusionist at the hospital where C was born. He waited until the tech was done and went in to look at the echo with the neonatologist. They came out and the dr. said the heart was clear. I looked to my brother in law not believing the dr. but yes, her heart was fine. I was so relieved. I was then able to go in and hold her. I went in with a nurse but didn't want anyone else in with me. She carefully picked her up from all of the wires and put her in my arms. I was waiting for that moment in the movies where our eyes meet and I am forever in love. It didn't come... it was like I was holding just any baby, not my baby. C did so well in the NICU. She was able to come home with us on the fourth day.
At home there were visitors and many phone calls. I had a phone tree set up and we told our contacts to please tell everyone about the Down syndrome. We didn't have it in us to tell everyone. We settled in. C was feeding well, sleeping well and was a very good baby but I was still so sad. People would come over to visit and I would put on a strong face. When the would leave, I would just cry and cry. I would cry through my whole shower, I would jut go in the bathroom, close and lock the door and cry. I thought maybe I had depression but I knew I didn't. I just had to grieve.
Yes, I had a living and healthy baby but she was not the baby we were expecting. She was not perfect. I was grieving for that perfect baby. I was sad for her future, I was sad for my husband and I, I was sad that we were the ones that got the handicapped baby, I was sad that I didn't know if my marriage would make it over this latest hurdle. I found it easier to sleep on the cough because laying in bed was hard on my c-section incision. I would lay there with my hand touching my daughter and I would just cry. My husband and I never talked. He would just hold her and say "poor C". It became something that made me so mad. Everything made me mad. I was very angry and I can say that I hated God and blamed Him for giving us so much heartache. I compared it to a tennis game. That God was serving up the ball and we were hitting it back each time. We'd hit it back and he would serve it harder and harder wanting us to fail. I was mad at the drs. for not finding out she had Down syndrome. I was mad at each person that told me "we" would get through this. I hated hearing how happy "Down syndrome children" are. I hated having people make it seem like such a small thing. I hated that people made me feel bad for feeling the way I was.
I would wake up every Friday at 12:00 am or so and think about how happy and excited I was only 3 weeks ago, 4 weeks ago... then I would watch the clock tick by and around 1:00am I would think about how my life had change so much in that 10 second moment. Time went on and finally the day came, after about 2 months, where I didn't cry. I remember even thinking, I didn't cry that today. I was getting through grieving. Like any grieving process, there are stages. I went through denial and slowly came acceptance. I was going to request a re-test. I was sure they were wrong. The reality hit me that they weren't wrong, she did indeed have Down syndrome. Each day was better than the last. I would cry a little less and be a bit happier to have my daughter.
I will say that I still have sad times. They are when I try and look too far into the future. I have come very far in learning to take each day one at a time. It's easy to say but very hard to do. I am learning and she is teaching me.
Today, almost one year after C's birth, I am in a much better place. C is doing so well and progressing well. Now I can say she has Down syndrome and be proud that I consider her an ambasador. A little perfect being to show how wonderful people with Down syndrome are.
I have learned to embrace her accomplishments and not let anyone tell me what age level she is compared to. I know we can't compare C to a child without Down syndrome. She will always appear to be failing on that scale. I just help her to do as much as she can and compare her to nobody. She is my daughter and she is perfect. There is no comparison.
Edited after the second year
C is such a fireball and has such an great personality. The sad times are VERY few and far between. Maybe once every few months if even that. She has very clear likes and dislikes, she is happy then having a full blown tantrum cause she didn't get her way, she is very much the 2 year old. She started walking right before her 2nd birthday and now she doesn't even want you to hold her hand. Her attitude is that she can do it all by herself and you know what, usually she can! Life is AMAZING!
Lately I have just had so much fun watching C change. Last year, she was not walking until the end of the summer. It is so fun now. She hears the back door open and off she goes. She always wants to go and play outside. Today after we got home it was nice and sunny and warm enough to head outside. Well, her new playhouse house is a hit. Just when I think she is all girl, she shows otherwise. Rocks in the driveway are just fascinating. She picks them up and looks at them like they are little gems. Just seeing her little hands working to pick them up and carefully place them in just the right spot is amazing to me. I just am always in awe of my little girl, even with something as simple as a pile of rocks.
