I've been reading blogs for a few months now and had toyed with the idea of writing one. Seeing as I'm still having a hard time adjusting to life with Sweet Pea, I thought this could be therapeutic as well as a great way to let our not so close relatives and friends keep up with Sweet Pea's life. I plan to write about the good, the bad and the ugly here so you've now been warned.
Let me start off by saying a huge thank you to all the ladies out there who have been so open and honest in their blogs about raising a child with Down syndrome and all the good and the bad that comes with it. Your honesty and courage has helped me get through these past few months.
The long story (I originally had this titled brief history...then I started typing and typing and…)
9 1/2 months ago we went to the hospital in labor. We were excited to finally get to meet this little person that had been growing inside of me for 9 1/2 months. We didn't know the gender as we wanted to be surprised and we really didn't care if we had a boy or a girl...as long as he/she was healthy is what I had always said. Once Sweet Pea was born my husband (let's call him Daddy in these blogs...creative I know!), was able to announce the gender once he spread her legs as she was being bashful. She was put on me as far up as she would reach as the cord was short. I was in awe that I was holding our little girl. Daddy cut the cord and Sweet Pea was brought up to my chest. I was holding her as the nurse was working with her. I was obviously high as a kite because I didn't realize that she was turning bluer by the second. Thank goodness for pictures to help me remember reality (thanks Mom for being so wonderful during the labor and after)!!!!!! The nurses took her over to the warmer and gave her oxygen and that is about when the extra staff started to come in. I wasn't really worried about her as I knew she was in great hands and she probably just needed a little extra help getting started. I had the best pregnancy and couldn't imagine that anything was actually wrong. Well, they worked on Sweet Pea for what seemed like ages, but were probably 15 minutes or so (haven't been emotionally able to watch the video yet to determine actual timelines) and then they said they needed to take her to the NICU. They brought her over to me to say goodbye and I jokingly thought, "Daddy's going to be mad" as I must have slept with an Asian man because Sweet Pea's eyes were slightly off from what I expected. I just laughed at the idea in my head and kissed Sweet Pea and Daddy and they headed off.
My mom brought in my dad, sister, brother-in-law and 2 nephews and they kept me entertained and happy for goodness knows how long. Then Daddy came back in followed by a doctor. His demeanor was completely off from what I was expecting. He didn't look at me and he didn't say anything, but there was something about how he put down the camera that made me freak out. My family very quickly exited stage left and the doctor asked Daddy if he wanted to tell me. At this point I thought Sweet Pea had passed away. I had no idea what was about to be shared. Daddy said no to the doctor so the doctor said, "Your daughter has Down syndrome". We thought that the world ended for us at that moment. Daddy and I just clung to each other in disbelief. I have no idea when the doctor left or if she said anything else, my world had stopped. Luckily, the doctor did go down the hall to where my family was and break the news to them so that we didn't have to. Warning: I'll be really honest here so stop reading if you don't want the truth...I wasn't sure if it was better that she was still alive or not. I had no idea what Down syndrome meant, I mean, yeah, I had heard of it and I knew that it was one of the things that we had gotten tested for early on in the pregnancy, but that was about it. In my head it meant nothing good at all. I cried and cried and cried as our perfect baby and the perfect life that we had known came crashing down all around me. Eventually I was able to go into the NICU to see her and this "lovely" photo was taken. You can see the shock written all over our faces! I'm glad now that this picture was taken, but at the time I was not so sure. It was about this time that I asked the nursing staff if they had any documentation on what Down syndrome was and to our shock they didn't, but they printed out some Google pages for us to take back to our rooms and read. I mean, this is a MAJOR hospital in Southern California and Down syndrome is the most common genetic disorder and yet they have no information to provide to new parents?!?! Wow! (Yes, this is something that I want to help change along with so many others of you out there!)
Anyway, those few google pages were the very beginning of what has been 9 1/2 long months of endless research and learning everything that I possibly could about Down syndrome, its effects on the body & mind and what we as parents can do to assist our Sweet Pea to achieve everything she wants to in life. I'll be continuing this quest for knowledge for the rest of my life, but I sure got a great crash course in those first few months. For those of you that know me, I'm a very analytical person and I make lists and spreadsheets and plan everything! Down syndrome was not in the plans! We have come a long way in our acceptance of reality, but I can't say that I'm across the finish line yet. I have my good days and my bad. I was actually able to write this entire entry without crying (my eyes wanted to a few times, but I never got past that very first step in the crying process) and that is a HUGE milestone for me. I'm a crier...what can I say.
Now I can say, at least most of the time, that I'm very glad that Sweet Pea lived and she brings so much joy to our lives! One big smile from her and all the worries and cares just disappear.
I'll be sharing more on her health as time goes on, but the short version (I promise this time) is that she is pretty darn healthy. No major problems just a few minor ones that we are working through.
Hugs & kisses to all,