The way we see some silver lining in an otherwise crappy situation is to look for opportunities to help others. Whether they are going through what we have with Avery, or have a child with other special needs, we hope that by sharing our story, being someone to lean on, and getting information out there, we can help others get through terrible times. Hearing from another mom that I've made her feel better, or that we brought something to their attention that they wouldn't have otherwise known, gets me through and makes me feel like we're giving back after receiving so much help from others.
Recently, Children's Hospital of Michigan, where Avery receives the majority of her care, contacted us after reading a "thank you" post I had put on their facebook page. They wanted to share Avery's story on their website so other families searching online may stumble on it and take something away from it. Of course, I jump at any chance to show off Avery's smiling face, but am so happy to do anything we can that may help other families. The article also serves as a public thank you to our amazing doctors; Dr. John Roarty, Dr. Steven Dunn, and Dr. Sandeep Sood, as well as the nursing staff at CHM. They've become part of our family, and have brought Avery to where she is today.
http://www.childrensdmc.org/AveryDevereux
Honestly, it is only recently that I feel confident enough to serve as a dedicated resource to other families regarding these medical conditions, and being a parent of a special needs child. The first 6 months of Avery's life, I was pretty much a recluse - afraid to go online and read something that would scare me, afraid to spend time with others, whose children I compared to Avery, and afraid to answer to the stares and questions of others. Then I progressed into the "anger phase," when I wanted someone, anyone to blame for what was happening to my baby. I turned my back on God, and felt some resentment toward everyone who had a healthy child. Each time one of Avery's conditions landed us all in the hospital, I would become this numb person, so helpless and confused. When things are good for awhile, it's easier to reflect on what you've truly accomplished, and focus on how you can make your mess your message. This past year, Avery's conditions have been stable for the most part, but there is still a daily worry as I watch her struggle to learn things, to communicate, use her limited sight, and keep up with her peers. Despite this, I've really improved my ability to take one day at a time, and not to think too far into the future about the "what-if's." That has allowed me to reach out to many families just starting the journey, and try to do what I can to help. Because not long ago I was in their shoes, and someday, we will be back in a not-so-great place. It's just a fact of this life, and acceptance is the key to getting through it. It won't be easy, and I'm sure I will still be upset and angry, but I will take it as it comes and make sure Avery knows that first and foremost, she is loved.
Although Avery's conditions are a daily battle, we are in a good place today, and if we are not tomorrow, we have an amazing team at CHM to rely on. I call ours a success story in that we weathered many, many storms as a family, remain strong, and have a very happy little girl to show for it. Avery will never let her medical issues hold her back, and we will encourage her to do whatever she wants to do, and to push her limits.
