Before Finn was born I had all these fears and thoughts about his future, about my future. Would he make friends, go to school, hold a job, move out of our house? He arrived and my fears and thoughts had to change to focus on what was immediately in front of me. How long would he stay in the hospital, would he have lots of health problems, require all of my time, would I be able to meet all his needs? Accompanying Finn’s prenatal diagnosis was a litany of possible health problems, some more likely than others, some more concerning that others. My OB felt good about me delivering at the same hospital we’d had Liam at which gave me a sense of security that Finn was going to avoid those tough health problems. Whoops! When he was born the team quickly realized that he needed to be transported to another hospital because he needed a more intensive level of care than was expected.
Babies born with DS often have some daunting health issues. One of the most common is heart defects. 1% of chromosomally typical babies are born with a heart condition, but approximately 50% of babies born with DS do. It’s unclear why so many babies with DS have heart problems, but we know quite a few children with DS that required open heart surgery as infants. Finn was born with a hole in his heart that thankfully closed on its own within his first year and did not need invasive medical intervention.
Finn’s stay at the ISCU (infant special care unit) was only a few weeks, but they were some of the longest weeks of my life. You can’t stay at the ISCU 24/7; leaving at night to go home was tortuous. He was so well cared for but you can just imagine what it was like leaving the hospital without him. On one particular night when Ryan came down to get me (I’d had a c-section and couldn’t drive) a massive thunderstorm was raging. We took this picture right before we had to leave. There we were- holding on tight to one another, sheltering together while the storm raged outside. Adversity either brings people together or rips them apart. Finn’s DS diagnosis has lots of challenges, and sometimes I feel like the world is stacked against him. When my fears, worries and questions resurface, I hold on tight to Ryan and we make it through. On those tough days when something seems impossible and completely insurmountable, I am reminded of this little story:
The devil whispered in my ear and said “You’re not strong enough to withstand the storm.”
I turned around and whispered right back, “I am the storm.”
~ Elizabeth Ray, Finn’s Mom and Deerfield Board Vice President