There are so many memories of that first year.
I remember being forced to leave Tatiana at the hospital after my recovery. I remember feeling like I had been robbed of the joy that rightfully belonged to me in those early stages – not by anyone in particular, but by the circumstances that not even medical research could explain . . . and by insurance policies that are, in short, not very people-oriented. I remember being exhausted and overwhelmed, as my body tried to repair itself from the cesarean and I tried to divide my time between visiting Tatiana at the hospital and caring for Natalia at home. I remember feeling guilty and frustrated. I remember our economic situation forcing my husband to be apart from us because he had to take work in other states. I remember feeling like there was no one who could truly understand what I was going through. I remember wondering how my then 3 year old handled all of it - there were no big sister books to prepare her for all of this. I remember Tatiana’s swollen little face and wondering how she could look so different from one day to the next. I remember hating that I had to leave Tatiana every evening, and that I would sometimes cry myself to sleep.
I remember people asking about Tatiana's condition and I remember their faces when they heard the watered-down cocktail version - they were faces of deep sadness, and some couldn't hold back the tears. I remember staying composed through all of this because really, there was no other choice for me. I remember people asking me "How do you do it?" and honestly, I still don't have an answer.
But, I also remember those moments of happiness like being grateful that I could just sit there and hold my baby for hours at a time (after not being able to even take her out of her incubator for over a month). I remember the first time I saw her without tubes connected to her face and of how she would react to my voice. I remember how happy I was when I finally got to take her home. I think it was those moments that helped me keep it together.
Throughout all of this, I also remember refusing to remain a participant of my circumstances. I began putting this website together, and I put as much energy as I could into other efforts that I considered “productive.” Part of that effort included coordinating a fundraiser to help cover portions of the costs that the insurance company denied coverage for, participating in the March for Babies, and learning how to make crafts I could sell to supplement our income - those medical bills are still haunting me.
I learned quite a bit from keeping myself busy. I learned that there are several positives that came out of this situation. I learned about my strength as a mother and an individual; I learned I have the powers of a magician when it comes to time and money; I learned that strangers could be moved and inspired by my words and by Tatiana’s story; I learned that some people will lend a hand to help you in times of need, while others will kick you when you’re down.
More importantly, I was reminded of the monumental difference we can make in each others lives. I believe that the power of positive energy, prayer, good will, and physical effort all played a role in Tatiana’s recovery. And, I am thankful for the tremendous show of love and support we received, and continue to receive, from family, friends, and even strangers.