Our twins, Violet and Augustus entered this world in the summer of 2013. Although we expected they would be born early, we did not fully grasp what being a new family in the NICU would look like. We would soon find out. Needless to say it was daunting, at first.
We visited everyday for 10 weeks; I pumped; we ate microwave dinners; and watched as these two little miracles grew stronger and bigger until they could eventually join us at home.
These early struggles taught us about patience and how to love deeper than we ever thought we could.
At 6 weeks old our daughter was diagnosed with Prader-Willi Syndrome. The diagnosis scared us. However, we learned to move forward and learned what we needed to do to ensure that she would live a quality life, one equal to her brother's (no diagnosis).
When our babies finally came home we had the typical first-time parent insecurities and laughs. In addition, we had a feeding pump, therapy appointments, an apnea monitor, etc. On top of that we had to learn how to drop an NG tube (!!!).
Although we were unsure of what the future would hold for our daughter we learned to be her advocate. We learned how to work on "her time." Sadly, that time would be too short. Violet passed away, unexpectedly, at 8.5 months old.
Her passing shook us more than any diagnosis could. In death as in life, we are her only voice. We continue to talk about her with her younger twin brother and honor her memory. We choose to tell the story of our twins by supporting those organizations that were a part of their lives.