This is a story about an amazing little girl and how she changed our lives…
It is difficult to know where to begin, as it seems that Sophia has always been a part of us – she was destined to be our daughter….
Dave and I tried for many years to have a baby. We went through years of infertility treatments and three heartbreaking miscarriages. We always wanted a family and we couldn’t imagine our life without children. So we decided that there was another plan for us…a baby waiting to complete our family. We opted for adoption. We went through all of the meetings, paperwork and red tape. Then we waited and waited…
We waited for two years with no responses. Then one day, I received a phone call from a doctor at the hospital where I worked. He told me that there was a young woman who came into the emergency room in labor. She had decided to place her baby up for adoption. He wanted to know if we were interested. I was ecstatic! I immediately said YES!!! I called Dave and my mother to share the news. Then we waited….
We learned that this young woman had made the courageous decision to give her baby life and a family that would love her. She is a very nice woman who loved her baby and wanted only the best for her…and for that we are eternally grateful. I hope that someday she knows what a beautiful gift she gave to Sophia and to our family.
We anxiously awaited Sophia’s birth. I was standing at the nurses’ station when Sophia was born. I heard her first cry. It was the most beautiful sound! Then we found out she was a girl! We didn’t get to see her until the next day. We anxiously awaited her birthmother’s decision to place Sophia with us. Once she placed Sophia into our care, we were able to be with her. I will never forget the first time I saw her sweet little face. She was the most beautiful little angel I had ever seen. We spent the next week in the nursery with her awaiting her discharge home with us. On the day of her discharge, I sat rocking her in the nursery and the song “In My Daughter’s Eyes” played on the radio. I sat and rocked my precious baby girl as tears streamed down my face…I had never felt so complete as I did in that moment with her in my arms. I knew she was everything I had waited so long for- she was my purpose in this life.
We were finally able to bring her home after one week. She was having some feeding problems from the beginning. She would take a really long time to eat and cry when she would eat. The pediatrician diagnosed her with reflux and tried her on several different formulas – finally settling on a lactose free formula and Zantac. Otherwise Sophia seemed very healthy and happy. She was growing and gaining weight normally.
Over the course of the next three months, Sophia was developing into a beautifully sweet little person. She was always ahead developmentally in terms of her interaction and communication, but she lagged on her motor skills. At three months, she was still not able to hold her head steady upright for very long and she could not raise her head on her tummy. We could tell that she wanted to, but she just could not do it. We began to be very concerned. The pediatrician told us we needed more ”tummy time”. She was also very congested especially in the mornings. Over the next month or two we noticed that Sophia was not doing things she should be able to do. She still could not sit unassisted and had trouble reaching for things. She simply didn’t have the strength. The pediatrician continued to tell us that she was “normal” but we knew in our hearts that something was seriously wrong. We had early intervention (EI) come and have a physical therapy evaluation of her motor skills. They told us that her motor development was equivalent to a one month old. Sophia was about 4 months old at the time. We immediately took her to see a neurologist in Chicago who suspected SMA immediately. I think at that point we were in denial – I was expecting her to need some physical therapy and she would be okay. I never imagined what was to come. When he came back into the room after her exam, he told us that Sophia probably had SMA (Spinal Muscular Atrophy). We had no idea what this meant or how serious it was. He told us that she would never walk and maybe never sit alone. He told us that 50% of children do not survive to their 2nd birthday. He gave us a pamphlet, drew some blood to confirm the diagnosis and told us he would call us in 6 weeks. We were devastated. We couldn’t say a word all the way home. We just cried and tried to find some way to accept this devastating news. It felt as though someone had ripped my heart out of my chest. All of our hopes and dreams for Sophia were being torn away from us. It felt like too much to bear. Sophia kept me grounded during this excruciating time. She was always so happy. We knew that the most important thing to do at that point was to learn as much as we could about SMA and keep Sophia healthy and happy. We scheduled an appointment with a pulmonologist in Chicago just to “establish care”. We took Sophia to see her and told her that she was getting congested and waking up a lot at night. She was very concerned about her breathing and wanted us to be admitted to Children’s immediately for tests to evaluate her for aspiration. We went in and had a swallow study and sleep study. The swallow study showed that Sophia was aspirating. She wanted us to put an NG tube down and began talking about G-tubes. We weren’t prepared for these things at all. We thought Sophia was eating fine. She never had any obvious signs of aspiration. We saw a surgeon at Children’s who wanted to put a G tube in the next day. Everyone was pushing us for surgery. We tried the NG tube but Sophia let us know that it was definitely not an option. She never stopped crying until we took it out. We did not feel comfortable with the doctors at Children’s and took Sophia for a second opinion. We did a second swallow study with thickened feeds but Sophia was still “silently” aspirating. We did our own research and found Dr. Schroth’s name and called her. She agreed to see us the next day. We knew immediately that this was where Sophia belonged. She explained everything to us and gave us all of our options. We struggled with what to do. We knew if we waited that Sophia would probably develop pneumonia, but we were so afraid to put her through surgery and take away the one thing that was still “normal” and gave her comfort. The thought that I would not be able to hold her and feed her again was heartbreaking. But the thought that I was “pouring” milk into her lungs with each feeding was equally as difficult. We talked to other families and ultimately decided that the best thing for Sophia was a G-tube with nissen to be able to feed her safely and protect her lungs. We scheduled the surgery for the next week. I cannot explain how terrified and torn we were taking her into the operating room that morning. We prayed that we were making the right decision for her. Her surgery took 4 1/2 hours. It felt like an eternity. When she woke up in recovery we were able to be with her again. She was on bipap for the first time. It was difficult to see her attached to so many tubes and machines. When we finally were able to bring her home, we were unprepared for all of the things to come. I think that we were expecting to feed her like we always did except through the G-tube. I had envisioned holding her while she received her feedings. Sophia’s condition was not at all what I had anticipated. She had to stay “vented” (have her G-tube hooked up to a syringe) at all times for several weeks. I couldn’t even hold her anymore without worrying about pulling something out. I was terrified of pulling out her G-tube. And we noticed immediately that Sophia could not manage her secretions after the surgery. Before the surgery she could sit in her reclined high chair for most of the day to play and interact. After the surgery she could not breathe without choking in any position except lying flat on her back. She never required suctioning until we brought her home from her surgery. We were so sad. We wondered if we had made the wrong decision. We felt like we took away the things that she could still enjoy. Now she was confined to lying flat on the couch attached to tubes and we couldn’t even hold her without making her cough and be uncomfortable. So we would lay with her and hold hands. We watched movies and read books. We tried to keep her happy and her mind active. We slept next to her on the couch. It would break my heart to see her hooked up to so many tubes. I missed being able to put her down in her crib to sleep and see her drift off to sleep peacefully. I would cry thinking that I could never have her climb up in bed with me to cuddle, or run and jump and play outside, or give me a hug, or never eat a meal together as a family….I was so angry at all the things she so deserved but may never be able to do.
We had enormous support from our family and friends to get through the initial times. Sophia was my biggest source of strength…she is the happiest little girl despite all of her daily struggles. All I have to do is look in her eyes and my world is right again. She keeps us together and reminds us of all that is important. We started her on a special amino acid diet and kept up with therapy. It took about 8 months before Sophia could begin to be up (on an incline) at all. We started with 1 or 2 minutes at a time. Slowly she began to tolerate being in her Kid Kart and reclined high chair for longer and longer periods of time. Then we made the decision that we needed to start leaving the house. That was a major undertaking that we had been avoiding because of a fear of exposing her to an illness and not having adequate access to all of her equipment. We started with the local petting zoo (which she LOVED!!), then with bigger trips to the aquarium and such. It is difficult to go out – there are always people staring, especially with suctioning. I just want people to be able to see her for the beautiful little person she is. I don’t ever want her to feel any less than “normal” or get her feelings hurt. So, we continue to go outside our comfort zone to give her the experiences she so deserves.
Sophia is so bright! She always has been. She started to talk before she turned two. She knew her alphabet, she could count to ten, name all of her animals and sounds and so much more! At 2 years old, Sophia was talking in sentences! She has the most hilarious sense of humor. She always makes us smile – from the moment she wakes up she has us laughing. Sophia is now 3 ½ and continues to amaze us on a daily basis with her wit and intelligence. She started homebound preschool this fall and is really enjoying her teacher and all of the challenges that school brings. She enjoys working on the computer, reading her books, listening to music, singing, swimming in the swimming pool, playing in the toy box, and is quickly becoming an expert driver in her power chair. She loves to give butterfly kisses - she has these beautiful long eyelashes and the most beautiful eyes you have ever seen.
Now, rather than thinking about the things she cannot do, we celebrate all the things that she CAN. If you ask Sophia, she can do anything, and do it with a smile. She is the most beautiful, courageous and loving person I know. We are so blessed to have the privilege of being her parents. I could never imagine my life without her in it. Sometimes life isn’t what you plan, but I believe it leads where you were meant to be. She gives me faith and hope and fills my heart with more love than I ever could have imagined…
In the words of Martina McBride in the song I so dearly love, …“When she wraps her hand around my finger, you know she puts a smile in my heart…everything becomes a little clearer, I realize what life is all about…It’s hanging on when your heart has had enough, it’s giving more when you feel like giving up….I’ve seen the light… it’s in my daughter’s eyes….”