We have never met and you do not know who I am, but your son and his story has made a significant impact in my and my family's life. On November 12, 2009 my fourth child and only son was born. His name is Caden. Prior to his birth we knew he had a bilateral cleft lip but we were assured by extensive testing that there appeared to be nothing else wrong. When he was born things start to unravel in a really scary direction. We were informed that he had some heart issues, kidney issues, needed a g-tube for feeding because of swallowing difficulties and he was deaf. My husband and I were devastated. We were prepared to deal with the cleft, but we were so overwhelmed by his encompassing diagnosis.
I did some research on my own and learned about CHARGE, a syndrome I had never heard of before. He wasn't officially diagnosed, yet, but I needed to get some answers. I came across your blog through the CHARGE listserv. Learning about Malachi and seeing you and your husband's amazing faith and dedication to your son gave ME the strength to walk through this uncertain journey. I would say to myself, "If they can do it, then I can do it." The "they" was you and your husband.
Weekly I would check in on your family to see how things were going, and many times I was brought to tears. I talked about Malachi and your family to my family and we prayed for him, too. I so admired your family's commitment to your son and all of his needs. When I was unsure how to raise our own special needs son, I would think about how you were just wanting to take your son home. Our son spent six weeks in the NICU. It felt like eternity, but I knew you had been on the journey much longer.
You and your story inspired me to start my own blog; http://sweetcaden.blogspot.com. It has been an open journal for me that has helped to push me forward.
When Malachi passed I was so sad. I truly felt so connected to him and your family. Malachi seemed like a "brother" in some ways to our son. When I had days that I was down and depressed about our situation I dug deeper and part of that was because of your son's life. I related to so much of what you were going through. The surgeries, fears, unanswered questions, the undying mother's love. Your son was blessed to have such a devoted family.
I think of your family often. I know Malachi is watching over all of you with a big smile on his sweet face. His life was a true blessing to us and our son. It gave us the strength to carry on.
-fellow CHARGE mom-