Life is a very funny thing. If you’re anything like me, you’ve got it planned out to the nanosecond. My husband, Stephen, calls it either Type-A or anal. Nonetheless, I knew what I wanted, when I wanted it by and exactly how I wanted it. Fortunately, fate stepped in, took me by the hand and said, “Sometimes you don’t get what you want, you get what you need.” Thus, upon beginning a new teaching job, I became pregnant with twins.
My pregnancy had all the curiosities that one can imagine: pregnant on the pill (yes, I did take it religiously), having a miscarriage (yes, I became pregnant on the pill with triplets) and finally what seemed like a “normal” go of it (is there actually normal)??
Well, fate stepped in again and decided that my children needed to come just a bit early—actually 31/2 months early. My twins Cameron Alexis (1lb 13 oz) and Brandon Francis (2lb 2oz) were born at 25 weeks gestation. Thus, they required all the help that modern technology could give just to keep them breathing.
I didn’t get to see my children after they were born. Both needed immediate intubations and I was flying high on morphine (although I did have the presence of mind to scream repeatedly that I not only wanted everything pulled but also that I expected a tummy tuck).
The next day, I was allowed to get out of bed and visit the twins. Stephen kept telling me that they were the most beautiful babies he had ever seen. As I anxiously entered the NICU, I found myself in a foreign land, surrounded by beeps and flashing lights. I was then sent to an area to scrub my hands and put on a clean hospital jacket. Confused from both the situation and the many drugs, my resentment was just beginning to form. This was not the situation that I had hoped for. I should be sitting in my hospital room with two beautiful children. Yet, here I was scrubbing off layers of “germs” just to view (forget touch or hold) my children.
What I saw next no mother should ever have to witness. My children were bright red (I found out later that it was due to fact that they had no fat) with every imaginable tube attached to them. Not only that—they were hairy! Now, with both my husband and me from a Mediterranean background, hairy is part of the package. Yet, this was too much to bear—here I was staring at my newborn children: red, lobster looking, hairy babies.
I was startled to say the least. The longer I sat and looked at these children—my children—guilt, fear and anxiety began to take hold and I lost my self control. Doctors were telling me about brain damage and chance of survival and all I could feel was anger. At everyone: the doctors for speaking to me, my husband for not giving me a clearer picture of the situation and most of all at myself for doing everything wrong. I figured that it had to be my fault because someone must be to blame.
I couldn’t wait for my bouncing babe(s) to come screaming to the world. My reality was a far cry from my dream and my reaction was violent. As I looked at pictures of my children I cried over and over—not for them, for myself. Selfish as that may seem I pitied myself. Why did this have to happen to me? It was my son, Brando who taught me a lesson that I’d never forget. I went to see the children in the NICU and the doctors decided to take Brando off of a breathing tube to see how he would do. When I walked in, there he was breathing as though he were running a race. His struggle was evident by the furrow of his brow. I sat and stared at my son in awe—what is wrong with me?
Here was my son fighting for his life while I was fighting myself on a daily basis. I vowed to overcome the constant negativity that surrounded my daily life. With new resolve, I started to become a mom.
Easier said then done—of course. As a woman and a mom I felt the need to persist over the feelings that came to me—my children needed me, my husband needed me. Most importantly, I needed me. My focus became myself and my family.
I’m a talker by nature and really needed the companionship of others. Yet, there was no one I could speak to about my situation. For example, when I spoke to a close relative I was told, “I know exactly what you’re going through—my children had the flu.” Good one. Better yet, that there was no such thing as post partum depression and I was being not only overly sensitive but also selfish.
My husband was a very positive force throughout all of this, but he had his own emotions to deal with. When we did have a conversation about the twins he basically alluded to the fact that it was about them and not about me—deal with it.
Loneliness became my new friend and I sat for many hours writing in a journal. You see, not only did I not have a family (my parents had passed away quite young) but also no one understood the depth of despair one endures when babies are taken from their mother far too early—not even my husband. Putting my feelings in a journal allowed me to take all of my negative emotions and put them into writing. Thus, while I was with Camy and Brando, I could be full of love and hope.
Fast forward 21/2 months and my twins came home. It was a joyous occasion for all of us. We were thrilled to have them home. Yet, with premature infants, a smooth transition is impossible. Brando used to turn blue when feeding ( a pretty blue though). He also lost most of his sight for a period of time (this was due to something called retinopathy of pre-maturity—ROP).
Camy progressed smoothly, but seemed to move really slowly. Both needed various therapies that began a month after arriving home. Life became a series of doctor’s appointments. Although you expect issues with premature infants, nothing can prepare you for the letdown of needing to go back to the hospital. All of my negative feelings were beginning to resurface and I became desperate to meet someone who gone through an experience with premature infants. I needed someone to say that it would be OK.
I finally began attending the monthly mothers’ group in our area. I have to say that it was a very disconcerting experience to stand up, introduce myself (speaking about the twins, of course) and have no one either say hello or welcome. People were afraid of me as they didn’t have any idea what to say. So, in the one place that I assumed would give me support, I was rejected. Crazy as it sounds, I needed to get out of my house and so I continued to attend the meetings.
Finally, I met a woman who had been down the same path as me. Her boys were born at 25 weeks as well. She became both a mentor and a personal friend. We both agreed that more needed to be done for families of premature infants. So, what began as a conversation between friends ended in the formation of the non-profit organization appropriately named The Tiny Miracles Foundation—for parents of premature infants (www.ttmf.org).
Through TTMF, parents of premature infants have the opportunity to work with “graduate parents” either in or out of the NICU. We also run support groups both during the day and at night. We’ve gone to houses, cried with parents, given financial assistance and most importantly we listen. It is through listening that we truly thrive as an organization. It is what I wished that I had when my twins were in the NICU.
TTMF began when my twins were two and is still helping parents today. It has become a passion of mine as I have two tiny miracles. Every time I have the chance to work with families of premature infants I’m given two things: the opportunity to help them thrive in a very stressful situation and the opportunity to heal. You see, it is through my work that all of the writing that I had to do becomes the words that I give for advice. With that, another place in my heart is healed.
I’m proud to say that Camy and Brando are now five years old and have started Kindergarten. They are truly the reason that I work as hard as I do both as a mom and as a volunteer for TTMF. I’ve learned that in life there is no perfect way, but if we follow the path in front of us we grow and become far more than we could have ever dreamed.
Meredith Daniels received her Bachelor of Arts degree in Psychology and Elementary Education from Manhattanville College and obtained advanced training in teaching children with ADHD at Fordham University. She taught elementary school for 11 years, finishing at Westover School in Stamford, CT. Presently Ms. Daniels is a Pilates Trainer at Equinox in Darien, CT. She holds various sports training certifications including NASM, Yogafit and Powerhouse Pilates. Ms. Daniels has volunteered extensively with the March of Dimes as an Ambassador Family and with the Epilepsy Foundation of CT. Ms. Daniels co-founded TTMF with Gwendolyn Noto in 2003 and served as the organization’s first president in 2003-2004. Her twins, Cameron and Brandon, were born at 25 weeks gestation in 2001. Ms. Daniels lives with her husband Stephen and their two children in Stamford, CT.