When Sophie was diagnosed with Cri du Chat Syndrome I felt as if the world had stopped spinning for me. The list of medical complications began to overwhelm me to the point where I shut down. While Sophie was in the NICU I did not talk about any of it, the syndrome or medical issues. I was on auto pilot. I woke up, took care of my kids and the house and headed to the hospital to be with my baby. After six weeks in the NICU she came home.
Despite having four children previous to Sophie I found myself scared and insecure about how to care for her. She was so small and fragile and I was terrified. She was not your typical baby, she was hooked to monitors with alarms going off constantly; each time her heart rate fluctuated or she held her breath too long. She choked constantly. I became distant and withdrawn. I lost my hope, hope for her and myself.
With each passing day I saw the syndrome more and more and it terrified me. I became angry, I yelled at God and was horrified that he would do this to me. “Why me?” I remember crying out with a heavy heart as I tried to make it through one more day.
I fell into a deep dark place, I was certain I could not do this. I did not want to do this, I could not be a mother to a child with medical complications and disabilities. My hope was gone before I had even begun to build on it. I doubted Sophie would ever reach any of her milestones, I fed in to all the negativity the doctors gave me about her life expectancy. I did not eat or sleep and all I did was cry. Those were some of the worst days in my life.
People always tell me how much I have helped them on their journey and that is one of the reasons I share my journey. I want everyone to know that I was not always so hopeful, the truth is the strength I have now was built up it was not always there. It was built up with hope, love and trust.
Hope. I found hope one wonderful night when I came across another family’s blog, that moment changed my life forever. I log into facebook (my support group) and see all the wonderful pictures of other individuals with CDCS and their accomplishments; this just fuels my hope. It helps to keep me strong.
Love. The love I feel for my child and the love that surrounds her and my family everyday. This love gives me strength and hope for the future.
Trust. The trust I have in God and my family and friends that support us everyday. When Sophie was baptized the bond between God and myself was sealed, I trust that she is in his hands and he will do his will through her.
I no longer focus on what the future will bring. I focus on today, the wonderful blessings I do have and the privilege I already have of watching my amazing child flourish despite all the challenges that continuously try to stop her from blossoming.
I wasn’t always this hopeful or positive. I had to travel down a difficult road to get here but it is possible to overcome the hopelessness. We live on borrowed time, life is too short to dwell on the what if’s. I no longer feel guilty about having felt that way because having gone through that helped me ge to the place I am today. A place with immense hope for tomorrow. A place where I can live each day focusing on all good. A place where I can experience all the emotions that sometimes flood my soul with no guilt. I am in a good place and although I was not always hopeful I am now and always will be.