Multi-complex congenital abnormalities, Tracheo-esophageal fistula, esophageal atresia, blind pouch, imperforate anus, tethered chord, fatty filum terminale, pneumothorax, gastro-esophageal reflux, caudal regression, anorectal abnormalities, general pediatric surgeon, anaesthesiologist, radiologist, urologist, cardiologist, ear nose & throat specialist, audiologist, neurologist, physical therapist . . . That’s just a sampling of the litany of terms that have been used to describe some of the things that have gone off kilter with my child’s little body, along with the fancy titles of all of the wonderful medical professionals that she’s visited along the way. If it weren't for her scars and all of her follow up appointments, it would all seem like a distant memory - almost like a dream . . . or a nightmare, depending on how you look at it.
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.
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.
