Well, I said in my last blog that I would explain how I came up with the title of this series called "Ethan's Web". For a long time now I had been trying to make something out of everything that has happened in Ethan's life. I would try to find the jewel in every obstacle and every hurdle that we have ever had to overcome. One of those jewels is the amount of self reflection and self healing that comes with having a child that is different or has special needs. All children have lessons to teach us adults and my relationship with Ethan has been no different. When Ethan came into this world 8 years ago I had no idea of the tremendous amount of responsibility it would entail to raise this child. Or the stress that could come from people constantly knocking us down and telling us that there was one more thing that he could not do or that he would always have problems with. What I have come to understand that is that the healing comes in your child when you learn to do your own healing. When you can change your perception of your reality is when the real miracles begins.
I never have agreed with anyone who has ever said that Ethan would have this difficulty or that problem. Countless hours have been spent in my life debating over whether or not Ethan would fall into the category of limitations that are put on a child with Spina Bifida or any other diagnosis. Labels have a sense of limitation attached to them. They are chains that are put on your child that can be very difficult to break. People look at you differently and feel a sense of 'giving up' and the expectation is just not there. So, each person that comes in contact with Ethan I am sure to ask, "Do you believe in miracles?" With this question often comes a look of shock or disbelief. "What do you mean?" is often the response. Or they will reply, "Well, yes, miracles happen all the time but this is different." What is so different about believing that anything is possible for your child versus believing that spring will come or that the sun rises in the morning and that the moon shines at night? What is so different about expecting a flower to open or a tree to instinctively grow leaves in the spring from a mother's knowing that her child can do absolutely anything? The only difference I see is the courage to believe. The courage to believe that absolutely anything is possible. The courage to believe that one day my little boy will have bowel and bladder control. The courage to believe that one day he will walk with smaller braces than what he has now and that he can walk with a cane and possibly nothing in the future. Am I crazy? No, I am just a believer. You see, life is not worth living if we can't believe that anything is possible. We must believe that only good can come from anything that is seemingly bad. I have to believe that my son can learn in school just like any other child. That there is no disability that could ever hold him back. I have to believe. And thus to support this vision I have always created a web of people around Ethan who also believe. Like a mountain lion who will protect her cubs...I will not allow you to look at my son with limitations. Because when you see limitations in others it is only limiting yourself.
Ethan's Web began after a series of synchronicities related to the book Charlotte's Web. For the past three years this book has come in and out of our lives several times. It all started with the movie and the song 'Ordinary Miracle'. The movie was popular back then and the song by Sarah McLaughlin played on the radio frequently. It was then that I had been given plenty of hints that we needed to take a trip to Shriner's Hospital for children in Chicago to see if they could help Ethan in any way. Whether it be with walking, hydrocephalus, or bowel and bladder issues. I had a hunch. My main reason for going was the bowel and bladder issues. What came from this trip was a doctor at Shriner's giving me a tip of another doctor back here in Michigan about 20 minutes from where we lived who knew about a nerve rerouting procedure being done in China. I had come all the way to Shriners in Chicago to get a name of a doctor that could help us back near our hometown. That was my intuition talking. So, when Ethan and I returned back to Michigan I looked up his name in the phone book. Of course, he was not listed but a listing in the book jumped out at me. It was the name of a urology clinic near our home. I called, and it was the same office of this doctor who we hoped would have more information. It turns out that it took several visits to see this doctor and several phone calls later to the research coordinator to find out that Ethan would not qualify for the study. The same study that we now have a direct link to the doctor who came up with the technique in China, three years later. Back then I knew. Now, I know for sure.
Since this time, my children have taken a special interest in reading the book Charlotte's Web (we have had several weeks of reading one chapter per night before bed), watching the older and newer versions on our DVD player in the car (thanks to Eleanor's persistence, my three year old), and recently going to see the live performance at a local children's theatre. I have always asked what else can I do to help Ethan and to help anyone out there who struggles with similar issues. Now, I know. During the theatrical performance, it occurred to me, "Ethan's Web". Just as Charlotte, the spider, wrote words in her web to save Wilbur's life, I can use the web to help Ethan. It was crystal clear to me. Charlotte saved Wilbur by just writing. I can help Ethan by just writing. Ethan's Web is about bringing people together to believe. Mr. Zuckerman's farm became a place of miracles. "Some Pig, Terrific, & Humble" were the words that graced Wilbur's pig pen and brought a community of people together that were thrilled to see this pig thrive and live an incredible life. So in something as simple as writing on a spider's web I am here to write on Ethan's Web. Ethan's Web is here to help everyone believe that anything is possible and that miracles do happen. Nothing is too small and no task is too large. Miracles come in all sizes. This one is about 4 foot tall, 53 pounds, and happens to go by the name of "Ethan".
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