National Down Syndrome Awareness Month #1 of 31 of 21

I realize this is also Breast Cancer Awareness month, but it is also Down Syndrome Awareness month. A lot the DS mommies that I have met are doing 31 of 21 on their blogs, facebook..etc and I thought I would follow the trend.  So this is #1 of 31 of 21. The word retarded.  I personally have been guilty of this using this word and various versions of it on occasion.  I didn't think about the impact of the word until I found out that I was having a "reatarded" baby.  I put that in quotes because I never ever considered Olivia retarded. She was my baby...plain and simple. That is how any mom looks at her child regardless of any labels society decides to put on them.  Yes technically children with Down Syndrome are considered mentally retarded. When this term was applied to them it was not a negative term. It just meant that they were slower at accomplishing things sometimes than a typical child. Society changed retareded into a negative term.  Just like the words bitch, ass and bastard.  Each of those terms are now considered curse words that are used to insult someone. Bitch is a female dog. Ass is a donkey. Bastard is a child without a father.  So my challenge on this first day of NDSAM to teach your children, friends and family not to use the word retard to insult one another.  Stop and think about each and every child or adult with special needs (not just Down Syndrome).  How would you feel if it was your child or loved one? Its one word but it does a lot of damage.  Olivia was not "retarded". She was a beautiful loving little girl who earned her angel wings too early and she was is and always be my sweet baby girl.

Olivia Jean Edge

My sweet baby girl Olivia Jean earned her wings on July 13, 2011.  I found out I was pregnant with Olivia on December 10, 2010.  I was excited and scared all at the same time.  Anyone who has had a miscarriage understands this feeling. I had 2 prior miscarriages to this pregnancy so it was a scary thought, but we wanted this so badly so it was also so very exciting.  To add to the excitement was the fact that her due date was Aug 17th....what would have been my parent's 40th wedding anniversary. I also knew that mom was living on borrowed time at this point. She had begun to lose her battle with cancer at this point. So this was a very overwhelming point in our lives. David was so excited. However we were on pins and needles until we saw her heartbeat for the first time on January 11, 2011.  That was the most amazing feeling. The ultrasound tech told us it was a fast strong heartbeat 155 per min.  My friends teased me that it was a girl since the heartbeat was so fast..... they knew I wanted another boy.  Tanner was 11 at that time and so all I knew was how to raise a boy.  Well because I am 37 I was sent to a high risk doctor at 18 weeks along in March.  Just so happened to be March 21st.  That is important because that is National Down Syndrome Awareness day.  That also happens to be the day we found out we were having a little girl and that she had Down Syndrome. I knew this was a possibility due to my age. There was the initial shock and sadness over the loss of what we thought was suppose to be our "perfect" baby. How wrong was our view of "perfect".  It was a fleeting moment of sadness that was quickly replaced by the joy of being pregnant with the girl I never knew I so dearly wanted. Sadly on that day we also found out that mom wasn't responding to chemo anymore and that borrowed time had run out. I think the thing that most impacted me was what my mom said when we told her Olivia had Down Syndrome...she said " Laurie, now don't borrow trouble. The first thing I thought when you said Olivia had Down Syndrome was...who better suited to have a child with special needs than you. Even as a child you have always had a soft spot for children with disabilities."  What a compliment for my mom to have that much faith in me.  Even more was for God to trust me that much. So the "issue" of Down Syndrome became a "non-issue" really fast. David struggled a little bit more with it but it was more that he didn't want other people treating Olivia different and that he didn't understand why others (meaning druggies, child abusers etc.) were able to have children that were "perfect" (once again with that pesky word - remember I said how wrong we found out what we had been taught "perfect" was) while our daughter would not be.... I told him to imagine Olivia being born into that family and what her life would be like... she was going to be born into a loving and accepting family who loved her period! He smiled and told me thank you for the reality check...after that it was a part of Olivia not what defined her.  I went to the doctor pretty much every week after that. The pregnancy took a huge toll on my body.  I was not able to travel to Texas to see my mom and I had to make a decision as to whether to see my mom and chance losing Olivia or stay home and not see her before she passed away. Mom made that choice and it was Olivia. While mom fought to live I fought to keep Olivia alive. We knew she had a congenital heart defect.  On June 6th I had two doc appts.  My bro sent me a text letting me know mom was getting really bad and she might not make it through the night. David and I met with the pediatric cardiologist and he told us that Olivia did have a heart defect but it was common in children with Down Syndrome and that he didn't think she would require surgery until she was 3 or 4 years old.  I asked him if I could travel to see my mom or if that would hurt Olivia. He said as long as I took it easy then Olivia would be fine. David and I decided that we would leave at 4 am and head to San Antonio. My mom died that night. We still went to see dad and for mom's memorial service.  Next appt was the following Tuesday. Miss Olivia still looked good. Now that I look back I knew something wasn't right. Her heartbeat would drop significantly on the monitors but would always spike right back, but I remember feeling like something was off but I just ignored it.  I went on bed rest because I was in a lot of pain. On July 12th David was going to Tulsa to get Tanner from the airport after his visit with his Dad for the summer and I had a regular scheduled appointment with my doctor. I woke up in a crabby mood which wasn't like me and I made a comment that I was crabby because I woke up pregnant still... not knowing that our baby girl had died.  I even said it to the receptionist and the nurse.  I had been scheduled to be induced on July 27th. So I was at the appt by myself which normally David went to all of them but he had to get Tanner that day. Almost immediately I knew something was wrong. I didn't see her heartbeat. I ask the tech and she said I am so sorry Laurie. I just sat up and screamed NO. I couldn't believe that I had just lost my mom and now Olivia. Was this a cruel joke????  And on the one day David wasn't there. I got my phone and frantically dialed his number but he didn't answer. He was in the shower. So I called my best friend and told her to keep calling him so that he didn't go to Tulsa and leave me alone.  All I could think was why me...why now... I did everything right.  God why??? Then I stopped right there one the ultrasound table and said outloud...NO I am not blaming God for this... he had a reason and I trust him.  I was able to get ahold of David and he rushed to my side and we cried together.  I delivered her the very next day. I am not sure what I expected but the blessings that God gave me from that point on have been nothing short of amazing. I will post more about the delivery in another post!

Where to start

This year is probably going to go down in the books as the best/worst year of my life. Let me start with the end of 2010. The end of September David, Tanner, my mom and I took a trip to Disney World.  This is significant because the September prior my mom had been diagnosed with stage 4 colon cancer in her liver.  This was her second bought with cancer so we knew that we were living on borrowed time. So David and I decided that we wanted to spend some quality time with her and we knew how much she loved Disney....of course that gave us the perfect excuse to take a trip we had also been wanting to take.  This also happened to be Tanner's 11th birthday so it was perfect timing. We had the best time. Mom tired out a lot but she was so happy. I knew that she wasnt going to be with us much longer so after that vacation David and I decided we would try and get pregnant again. This was a scary prospect since we had already had a miscarriage that almost killed me in December 2008, but I wanted my mom to see me pregnant and have something to look forward to as she continued to fight.  So I became pregnant with Olivia in November 2010.  In December mom took a turn for the worse and we knew this was it....even if we weren't ready to admit to ourselves.  That was the beginning of the best/worst year of my life. Throughout all the events of this year God has shown me his grace and blessings.  Keep reading my future posts and I will share with you the events of this year and also my daily life. It is much too long for one post. :)

Ripping the final bandaid

Two weeks ago today I gave birth to the most beautiful little girl. This was suppose to be a joyous day for me and my husband but instead we knew that our little girl we had been looking forward to for 8 months had already died. Today was the day we were going to induce and have her. So we were 2 weeks from realizing our dream. A lot has happened in the last two weeks and I finally feel like today I have ripped that final bandaid.  That is a term David and I came up with when we had to deal with something we didnt want to and knew would be painful but knew was absolutely necessary and had to be done. Nobody likes ripping off bandaids because it hurts but we also know that it has to be done and the quicker the better. In the last 2 weeks we have had to tell our family that Olivia had passed, make the decision on when to deliver her, decide what we wanted to do as far as burial or cremation, I had to acutally deliver her, go to the funeral home, open up her bedroom, and the list goes on. This is something that I would never wish on anyone else. In one single moment our lives were forever changed and will never be the same.