This is the Story of Sydney, written when she was one month old…
Randall and I were delighted in November 2006 to find out that we were pregnant. We decided to wait the typical 3 months to share our news. In the meantime, we went through the usual series of tests for a pregnant woman of “Advanced Maternal Age” i.e. 35 years old. The 13 week ultrasound revealed nothing, but the blood test revealed a high level of HCG and high probability for the baby to have Downs Syndrome. We were told that we needed to see a genetic specialist for additional tests. We were worried and full of fears as to the possibilities. Neither of us have any experience with Downs Syndrome nor did we have a clue what Downs really meant.
Well after 5 weeks of worrying and waiting and postponed appointments, we ended up in the genetic specialist’s office. We started off with a one hour ultrasound with three different technicians (Sydney was not very cooperative). There were around 20+ different measurements and “markers” they were searching for that would indicate Downs Syndrome. Of all of the markers, only one minor thing showed up, a “bright bowel”. This is where the bowel area on the ultrasound is atypically bright in color. It was not a major indicator as around 40% of non-Downs children have the same thing. Despite her positive ultrasound, we decided to go ahead and get the amniocentesis.
Now you need to understand that I absolutely ABHOR shots, so the idea of a three foot needle being put into my stomach was not only nauseating, but a tad terrifying. At this point we had been thinking about Downs Syndrome for five weeks and I really needed to know. Deep down, I just KNEW that this test was going to come out positive for Downs, so for my sanity I needed positive confirmation or denial. The doctor prepped me for the Amnio and I lied there on the table with my arm crooked over my eyes and silently cried through the procedure. The initial “prick” through my stomach muscles was the worst part. Although the Amnio was physically painful; it was the emotional aspect of what it could reveal that was the hardest part. All in all, the test was only a few minutes and then it was over quickly. We would have about a week to wait for the results.
Well, as luck would have it, I was home that fateful Thursday when the doctor called me. I was having a rough pregnancy day and decided to work from home. I innocently answered the phone and when the doctor identified herself, I immediately held my breath. “How are you” I managed to say in as casual a tone as I could produce. She was very soft spoken and quickly, but gently got to the point. She said that the results had come in and she was sorry to say that the baby was positive for Trisonomy 21. I sat down and just said “okay”. It was as if the breath had been sucked out of my chest. She let the pause continue for a few minutes and then proceeded to tell me that since I was now 19 weeks, she needed to tell me about my “options” if I was interested in terminating the pregnancy. I immediately said that “There are no options, she is our baby and she is coming as is.” The doctor let out a relieved breathe and said “Well, I am very glad to hear that”. I couldn’t help but instantly feel sorry for her. What an awful job she has, not only to tell people this kind of news, but to have to discuss the alternatives. Although I knew that there was no other decision, my mind did run past the thought of “Is it cruel to give her a life with pain?” The decision was to walk in Faith that our baby was a gift from God, whether or not we understood the gift.
The doctor then said that I should make a follow up appointment with her office and we can start talking about what Trisonomy 21 means and to follow the baby’s progress through ultrasounds. At this point and time it was taking every ounce of my strength to stay calm and in control. I thanked her for the call, then told her that I needed a little time to absorb the news and would call back at a later date to arrange the appointment. I got off of the phone and completely fell apart. This was probably the hardest cry I have ever had in my life. After a few minutes, I called Randall and told him the news. I honestly cannot remember what he said… The next hour or so is a blur. Randall got off the phone and flew home. In the meantime, not wanting to be alone in my thoughts, I called my mom and my best friend Kim and cried with them. Randall made it home and wrapped me in his arms and we cried together.
I felt like my heart had been ripped out of my chest. I was sad for myself and my unborn daughter. All I could picture was the “typical” Downs face and I could hear echoes of my childhood past and the taunting of mean kids. My thoughts were focused on all of the things that I thought she wasn’t’ going to be able to do in her life because of this extra Chromosome. I also sat and worried about how this would affect my other kids. Would they be neglected, would they resent her, would they love her? Of course the unforgivable entered my mind… would I be able to love her? Although these thoughts seem silly now, they were VERY real fears at the time.
Luckily God has phenomenal timing. The Women of Faith conference was scheduled for the following week and my mom was flying in a few days to drive with me to San Antonio for the conference. This was exactly what a girl needed after getting difficult news that her life was taking an unexpected path… her mom coming to visit and four days with her church sisters.
With my heart freshly torn and full of fears and questions, we headed to San Antonio and found out immediately how miraculous God is!! Within 15 minutes of the conference starting, Lisa Smith walked up on stage and I knew immediately who she was, remembering her from the year before. Lisa is a woman with Down syndrome who signs worship songs. Like I said, I remembered her from the year before and was touched by her performance, because I sign songs at my church. This year however, it was a whole new performance for me. I was instantly reduced to tears, weeping like a child. Before I knew it, I had a host of arms immediately wrapped around me and patting my shoulders, as the women around me knew as well as I did, that she was a DIRECT message from God! All I could manager to say was “She is so beautiful!”. All I saw in her was HOPE and LOVE!! What a great gift, It was exactly what I needed!!!! How perfect could it be?? A beautiful DS woman who signed of all things! Something I can share with my daughter Sydney! It was the most powerful feeling; I wish I could accurately describe it! Every time she went on stage for the rest of the weekend, I was in tears. They were tears of pure joy! What a blessing she is!
The whole weekend was AMAZING, the music, the testimonials, and the fellowship. As if that wasn’t enough, I was handed an envelope by a friend on Friday that contained back stage passes. We had no idea who we would meet, we just knew that it was someone from the Women of Faith panel. Lo and behold we were going to meet and talk to the Sandi Patty. For those who are not familiar with her, Sandi Patty has been in the Christian music industry for over 20 years. She is also the one who brought Lisa to the Women of Faith circuit. Her story is amazing, and will have to wait for another time. Anyway, someone in the meet-and-greet group mentioned how inspiring Lisa was and she thanked Sandi for introducing her to the WOF tour. As soon as those words left her lips, I of course am reduced to tears (AGAIN). All I manage to say while pointing to my stomach was “That’s my baby girl”. Sandi hugged me and told me how Lisa is a pure joy! She told me to try and meet Lisa and her mom at the autograph signing. Well, that wasn’t to be, due to a family emergency, Lisa left early, but I had already received a lifetime of blessings that weekend!
Well, the time flies and we are proud to announce that our daughter Sydney has arrived! She decided to make her appearance a few weeks early. She showed up at 37 weeks on July 16th at 4:00am. She was in such a hurry to arrive that we almost didn’t make it to the hospital. God made sure there was no construction blocks that night on the toll road!! The poor OB delivery staff was given quite a task that morning. She delivered within 20 minutes of arriving at the hospital.
Her early and quick arrival resulted in a large lump on the top of her head and a two week stay in the NICU. Her lungs were not quite ready for outside air, so she needed to be on O2 and monitored closely. After two weeks, we were allowed to take our precious baby home, but she still needed oxygen assistance due to pulmonary hypertension. The good news is that her heart looked fairly healthy, as it did while pregnant. Although at birth, she had a small hole in her heart and a leaky valve, they weren’t severe. Two weeks later at her cardiologist appt, a dozen or so tests showed that they are fully healed!
She remained on O2 at night for two weeks, but otherwise, she was finally a wireless baby! She is doing well and I have to say that she is the most precious baby ever (not that I am biased!) I wanted to share how wonderful and truly celebrated she is! After looking at her precious little face, it is hard to believe that I was once afraid of my baby girl. Looking back, it seems rather silly! =0)
Life in a Snow globe written when Sydney was 6 mths old
This year has been quite a whirlwind. I think I have experienced some of my life’s highest and lowest points this year, none of which I could have made it through without God, Randall, my family, my church family and my friends.
I think of this year as a snow globe. Here I was in my comfy little setting, pregnant with my daughter and had finally got my snow all beautifully settled just where I wanted it, when God picked it up the globe and SHOOK it! The news of Down syndrome had entered my life and now I was blind in the snow and couldn’t figure out where anything was, yet alone know what I was going to do with it. For a brief moment, it felt like the snow blizzard was eternal, but luckily that moment was ever so brief. I am SOOO blessed to have a support network around me that only God could have built. Inevitably the snow settled and God laid it back on the ground in an unrecognizably new landscape that was more beautiful than I could have ever imagined. Go figure, MY way wasn’t the best way.
I look back on the world that I created. “My snow” was laid out just perfectly so that the world saw a perfect little house with a perfect little family. For crying out loud, we even have a picket fence in the back yard, ugh. Getting my world to appear just right was a long and arduous process that took years. After a divorce, remarriage and having a step-child situation that up to that point was rarely ideal, it took some creativity and diligence to arrange my snow to be “just so”. Over the years, the snow had grown so thick and had absorbed so much of my attention that I never would have seen what was hidden underneath.
Well, one good SHAKE and God uncovered my world and revealed a whole new perspective. This new frontier brought fears that I never had to face before. First of all, he uncovered my Vanity, wow that’s one I hate to admit. I feared that my vanity would get in the way, and that I would not be “able” to love my daughter unconditionally. What a crock that was. I love her so much my cup runneth over. God covered my vanity with fresh snow and I am eternally grateful. Pride, that’s another tough one. I was so proud that my son crawled early, walked early, has a great vocabulary for a 3 year old and is an all around sweet and smart little boy. I am still proud of him, but I am also humbled. Sydney will not be the first to do these things, but boy will I rejoice in every little milestone she reaches. Acceptance, boy these don’t get any easier do they? I never considered myself judgmental. That is until my shake. Since the news of DS, I have seen so many children with disabilities in my community that were not there before. Wow, was I really so blind? Did I really gloss over people? Thank you God for opening my eyes. God’s shake brought me humility and a sense of Gratitude that I never would have experienced without my sweet angel, Sydney.
With this shake also came the call to advocacy. I see a niche that my experience and skills can fill. I look forward to the coming years to see where He leads me. I feel like the luckiest woman in the world to be living my life. I have a loving family and I walk everyday with Christ. What more can I ask for?
