Sunday, December 26, 2010

My Pounding Heart

The day finally arrived. Today we would get a sneak peak of the babe growing in my belly. I was anxious. As I climbed onto the table and felt the jelly squirted onto my belly, I found myself thinking, "Breathe. Just breathe." Rob, on the other hand, could have dozed off on the small couch in the exam room (which made me jealous!)

As the technician began her exam, I found myself relaxing. She was a wonderful tech who enjoyed her job. She was talkative, which made me more comfortable. One of the things I had been particularly nervous about when I had thought about this appointment were the doctors I would see. First off, the ultrasound was being done in the "Genetics Ultrasound Suite" - which was just unnerving. Second, I found out I was being treated as a "high risk pregnancy" - the pregnancy itself wasn't high risk, just the kids I seemed to birth! Third, in the ten years since Dylan's birth, I had met a lot of doctors, many who had hideous bedside manner and were often down right rude and obnoxious. Over the years I have become numb to most of it, but I am pregnant and emotional! The tolerance I have built over the years has become nearly non-existent during this pregnancy and I am constantly being challenged by the Lord to hold my tongue and be Christ-like.

Shortly after the ultrasound began, the perinatologist came in and introduced himself. Once again, I was put at ease. He was a gentle, soft-spoken, friendly individual who seemed to genuinely care about why we were there. As he asked questions about our other children and their diagnosis, it was done in a "non-robotic" manner - always a welcome relief. Sharing our family history can be quite the task!

As the ultrasound progressed, the tech verbalized her frustration that the sweet boy in my belly wouldn't keep his right hand open - he was determined to keep it in a fist. She also voiced that while she had taken a measurement at the neck numerous times, it was consistently measuring "just outside the normal range". My heart began to pound. I was unsure of what the hand-fist issue was, but I knew exactly what an inappropriate measurement at the neck could mean.

Before the ultrasound tech and perinatologist could explain their discussion, they were called out of the room briefly too another ultrasound where further assistance and expertise were needed. While we were alone for just a few, short minutes, Rob asked what my thoughts were. I shared my suspicions and informed him that the neck measurement was generally considered a "soft sign of Down syndrome while in utero", but that clarification was needed in regards to the hand.

When the docs returned, they explained their findings. Overall, the baby looked great - his heart was perfect, as well as all other internal organs. However, as I had suspected, the measurement at the neck was just outside the normal range - one of the seven soft signs of Down syndrome. In addition, our sweet boy had opened his right hand a few times, but did so very quickly, making it difficult to verify their concerns. It appeared that although all of the bones of the right fingers where present and appropriate size, there was a possibility that the little finger and the ring finger were fused together. The perinatologist said that the only way to confirm the Down's would be through an amnio, which he knew we were against. In regards to the hand, it wasn't uncommon for babes at this stage of development to act in this manner, but they did have to inform us that when our boy was born, there was a chance that these two fingers may be fused together with extra skin. If so, we would have to decide whether or not we wanted the fingers separated. It would be a simple procedure, but still something that we may face.

My heart was still pounding as the ultrasound wrapped up, but the pace seemed to be returning to a normal....just at a snail's pace. Rob and I left the office, sharing our thoughts openly and honestly. We were relieved that the anatomy of our boy was healthy. On the other hand, there were still unknowns. Honestly, we joked and laughed. Had we really thought we would go to that appointment and get news that our child was picture perfect? Who were we kidding? We are the Stewart Family and there is always something...or at least the potential of something. It just seemed to be God's way of keeping us dependent on Him. There was no question we were annoyed. Everyone we knew - friends and family - were aware of this appointment. Over and over again they had all said everything would be fine - no way would the Lord put us through more. But here we were....again!

I sighed. I had no desire to explain potential defects. The thought alone overwhelmed and exhausted me. It was actually one of the key reasons why we did not share with immediate family that Savannah might have had DiGeorge syndrome - it was just a maybe and we simply didn't have the emotional stamina to share about something that may or may not be present. Maybe it was selfish of us, but we had needed answers prior to talking about "what if's" - and looking back, I know we made the correct decision. However, this time around, it wouldn't be that simple. We would need to share. Many people were praying specifically for this ultrasound and the things that it would show.

The Lord was clearly asking for our undivided attention and patience. He was challenging our faith and the desires of our human hearts. The days and months to follow would be rocky ones, but once again we had each other. Even more importantly, we were beginning to only see one set of footprints in the sand.

Monday, December 20, 2010

To Be Human

Most expectant mothers look forward to the "big" ultrasound that is typically done during the fifth month of pregnancy. I used to be one of them. Unfortunately, with each passing pregnancy and excessively long ultrasounds, the joy had faded. These feelings have been especially strong during this pregnancy.

I know all the percentages and have done mountains of research on each of my children's various diagnoses. Yet, as my fifth "big" ultrasound was approaching, I must admit I was a ball of nerves. I wouldn't exchange any part of our life. It's far from perfect and certainly complicated and challenging, yet it's the deck of cards I was dealt and I've embraced it. No, I don't always enjoy every card I'm given and how they play on one another, but with each hand I'm dealt from this deck, my relationship with Christ grows in ways I never imagined.

Since becoming a mother of a special needs child, I have met a wide variety of people. I have been exposed to forms of disability and heartbreak that are unthinkable to most around me. My family as a whole has also been exposed to many of these same individuals. I often find myself thinking, "What do I have to complain about? What these other folks are dealing with is so much more complicated than the diagnosis my children carry with them."

Meeting these amazing families along my journey as a special needs mama has turned my world upside down in the most amazing way. Yet, as my ultrasound approached, they were also the individuals that consumed my thoughts. I thought of the diagnosis they had been given, the years of turmoil they had faced and so much more. The bottom line is that I realized just how much I knew about birth defects and everything that went along with each one. Some of the things I've seen are scary - not the individual with the disability - but the complications that can arise as a result of the disability, both medically and developmentally.

With the exception of Rob, explaining these feelings to those around is nearly impossible. Just as there are aspects of other people's lives I will never be able to relate to, it is the same with the life I lead. As I got closer and closer to my "big" ultrasound, I was a train wreck. There is no doubt the Lord was testing my faith during this time. When I sat down at the computer, it took everything in me to not research various special needs. I knew this was Satan at work. I was scared, there was no doubt about that, but I held the power of how much I was going to let him in. I'm human and have fears - but only I can decide who I'm going to depend on during these moments.

It was difficult to walk away from the computer in those days just prior to the ultrasound. When I found myself wanting to research this or that, I forced myself to grab my children and hug them. I would look into their eyes, especially those of Dylan, and remind myself that they were each created by Him, in His image. Each and every child that I bore was being born for a purpose - to be a vessel of the Lord - and as His vessel, regardless of their genetic strand, was His definition of perfection in the moment He allowed their heart to beat.