I stumbled upon..

“I am just as deaf as I am blind. The problems of deafness are deeper and more complex, if not more important than those of blindness. Deafness is a much worse misfortune. For it means the loss of the most vital stimulus– the sound of the voice that brings language, sets thoughts astir, and keeps us in the intellectual company of man.

"Blindness separates us from things but deafness separates us from people" - Helen Keller

Tonight, I stumbled upon a blog about a boy named Mathew, a two year old boy with CHARGE. Mathew's father started the blog about his son and his journey with CHARGE syndrome. I immediately was intrigued and couldn't stop reading, crying, and smiling. Many of the things he describes in the daily life of Mathew and their family are very difficult to read... Difficult to read because I cannot help but to think is this a glimpse at what our future may hold with Sophia...for Sophia's future. As difficult as some of the reading may have been, it was also enlighting, hopeful, joyous....and proud. It is not only a blog about a boy but a blog about a family and their true testament of faith and family. It was inspiring to read how a man was making a difference in his world and the world of others through his gift... his son. I hope too be as strong and courageous for Sophia and my family. I hope to see the same achievements and gifts Sophia will bring to our lives. I hope I can make a difference in Sophia's life. I hope to inspire and educate people about charge. With this same hopes I also carry fears.  I  still fear for her hardships and the challenges her syndrome may bring to her and our family.  I pray that as fast as these fears overcome me they are  quickly layed to rest by HOPE. The unknown is scary. CHARGE is a very rare syndrome that was only recently discovered in 1979 and named in 1981 and linked to the chromosome mutation in 2004. There are so many unknown variables in involved in this young syndrome. Many of these answers will not come until Sophia grows or until modern medicine evolves again and again. CHARGE is a disorder that affects one in 12,000 children a year. Statistics say you have better odds of getting struck by lighting in your lifetime. Who knew John and I were so lucky. I guess it is time to start playing the POWERBALL, right? So as we continue on this journey, I hope to find answers but mostly I hope to find joy, strength, pride and wisdom. I hope that Sophia can inspire and change the world as Mathew's story touched and opened my heart tonight. As I end my blog for the night, I will leave you with a quote that Mathew's dad listed in his blog...

“Character cannot be developed in ease and quiet. Only through experiences of trial and suffering can the soul be strengthened, vision cleared, ambition inspired and success achieved.”  Helen Keller

John and I's character and faith is being tested and shaken to the core. Our hearts have been broken and are aching for the things we cannot control. Our minds swirl with questions and fears. BUT our SOULS will withstand these trials and tribulations. Our SOULS will conquer and our spirits will sour. Our hearts will be full again. And our love for Sophia will never waver.... And when we forget how strong we are...please remind us.