When I found out you were growing inside of me I was so excited, my heart was full of happiness. I knew deep down you were a little girl. I was scared because I somehow knew you would change my life forever. I almost lost you in the beginning but I prayed everyday and God heard my pleas for you. He answered my prayers and blessed me with your life. I was not happy when the doctor pushed for an early delivery for you but I just wanted you here safe. After you were born and we realized your umbilical cord was malformed and beginning to detach we realized had I not delivered you then you would not be here today. I believe everything happens for a reason, proof that you are my little miracle..
I was so afraid when I saw you, you were so small and fragile. When I finally heard you cry my heart sank. I knew deep down in the depths of my soul something was different about you. You became very sick. I was very upset because no one could tell me why. You developed pneumonia and sepsis which is why you have never been able to stay healthy. You had horrible tremors, you could not breathe and had the list of medical complications continued. After a blood transfusion you started to improve. I was with you everyday, I fed you, changed you and held you when I could.
The hospital told me I was too involved in your care but I knew I had to be there. You were transferred to another hospital after I had an ugly episode with the doctors and nurses NICU. Doctors who acted like you were a guinea pig and were upset I would not let them take over. I was tired of them running test after test with not one clue what was happening to you.
The new hospital was the answer to my prayers. I knew you were strong, I never lost hope you would get better. The new hospital worked with me to get you better and that they did.
You were a little over 2 weeks old when we were told you had Cri du Chat Syndrome with an array of other medical complications. We were told you would most likely never talk, walk or have a healthy productive life. We were told to enjoy you but be prepared for the inevitable. I refused to believe them because you are my daughter and a fighter like me.
I focused on getting you out of there, getting you home with your family. There was that one nurse, the older woman who had been a nurse for a very long time. She cared for you during the day her name was Margaret, I will never forget her. She was so loving and positive and told me only God knows how long you will live or who you will become. And she was right.
At 6 weeks old you were finally able to come home. You were still very sick but it was time to meet your family where we would fight for you together.
I was not prepared for what life had in store for us. I was so happy to have you home but the days began to blur together and I started to wonder if I could do this. Was I strong enough to be your mother? You left the hospital on a monitor, it beeped almost constantly because you choked and would stop breathing all the time. It was heart breaking. It became too much for your Godfather to watch he became weary of visiting you for a while. I was afraid of going anywhere with you alone, you were so sick. I was so scared.
Doctors visits were an almost daily routine for us. I quit my job to stay home with you, I was determined to help you live. I rarely slept, I cried a lot and wondered where our lives would lead us. When you were three months old I sent a letter to our friends and family where we finally shared the new of your diagnosis (Sophie has Cri du Chat). It was obvious by then that you were not a “typical” baby.
Your immune system was greatly compromised this created a severe problem. You could not escape any virus or cold. You developed chronic RSV and asthma had become an issue. The nebulizer became our best friend.
When you were five months old you started therapy Physical therapy. You had no range in your ankles and your feet were always pointed. I had to stretch them throughout the day, It broke my heart to see you in pain and daddy could not watch. And then one day you did not cry anymore, you were able to move your feet and ankles freely. That was a glorious day!
You were baptized a 5 months old. It was an amazing day, something truly incredible happened that day. Before your baptism you were in your own little world. The next day it was as if you had woken up.
As we approached your first birthday we had hoped your health would improve but it did not. This did not stop us though, we kept moving forward and welcomed your first birthday surrounded by Love, friends and family.