Ethan's Web (part 3)

Tonight, Ethan, my husband, and I consulted with the Doctor at Beaumont who is leading the research being done in the US for the nerve rerouting surgeries pioneered by Dr. Xiao from China. He was very honest and very thorough. In all honesty, it is a difficult decision to make. We could have the surgery done in China but the risk of having loss of motor functioning is pretty high. Most of the children in the American study have had to work hard with Physical Therapy to get back to baseline (where they were before the surgery). Meaning, during the surgery they have to take part of the nerve that helps us to walk and reroute it to where we need to have bladder and bowel functioning. This means that you can have anywhere from a slight lower motor function loss (ie weakness) to the inability to walk. Despite this, many of the children have had increased bowel function & some increased bladder functioning. One child has had a very promising outcome.

There is something inspiring about this child. She was someone who had one functioning nerve to use for the surgery. The doctors wondered how she was able to walk in the first place with one nerve. She walked with arm crutches and the Doctors believed that if there was someone that this procedure probably would not work on, it would be her. She had many factors working against her. Despite this, her parents still wanted to go through with the procedure. It took her the longest of all the participants to recover and after the surgery she could not walk. But, she worked hard for a year and returned to baseline (where she was before the surgery). She is the only one that has complete bowel and bladder functioning. I remember talking to the research coordinator over a year ago about this child and how passionate her parents were about going ahead with the procedure. Now, I did not talk to these parents myself but I felt a sense of 'belief' among them as the research coordinator explained the situation over the phone. I never forgot their story and always wondered how she did. I believe these parents knew something that most of us fail to recognize many times; they had faith. They went with their inner voices and insisted that their daughter have the surgery. They worked hard and the outcome was phenomenal.

So, tonight, we sit on the fence. Debating back and forth in our minds the pros and cons. There is a real chance that this could work and there is a real chance that it could not work. There are so many factors that have already lined up for us.
1. The fact that my sister in law lives in Shanghai where that surgery would take place.
2. It would be at the most technologically advanced hospital in China.
3. The man who has done over 1,500 surgeries would be doing this himself.
4. The Doctor who is researching here in America would help do the follow ups we would need when we would get back.
5. We have the best Physical Therapist in the country to help Ethan out after surgery recovery.

OK... the cons...the doubts...the fears...
1. We don't know for sure if this will even work.
2. Ethan could loose motor functioning that we worked so hard to get in the first place.

So, tonight, tomorrow, and the next day we wait patiently to keep gathering information to make the best decision we can. We have a meeting with Dr. Xiao next week. He 'just happens' to be coming to America for more surgeries about 25 minutes away from where we live. When I called him last night (morning time for him) he 'just happened' to pick up right away and be available to talk, answer some questions, and set up a possible time for us to meet next week.

Today and tonight, and every day I pray for clarity. "Dear God, Please give me a clear sign so that we will know with out a doubt that we should follow through with this surgery or that we should not. I need clarity here! Thank you, Amen"

On the drive over to our appointment tonight and on the way home it seemed like every song we listened to on the radio had the words, 'faith, love, believe, and healing' in the lyrics. Of course, I just listened and took it all in.
When I was preparing my youngest one, Eleanor, for a bath tonight I turned on the Celine Dion CD that 'just happened' to be in my CD player in my bathroom. I have not listened to this CD for many months and had forgotten it was in the CD player. The first song went like this...

The Power of a Dream
Deep within each heart
There lies a magic spark
That lights the fire of our imagination
And since the dawn of man
The strength of just "I can"
Has brought together people of all nations

There’s nothing ordinary
In the living of each day
There’s a special part
Every one of us will play

Feel the flame forever burn
Teaching lessons we must learn
To bring us closer to the power of the dream
As the world gives us its best
To stand apart from all the rest
It is the power of the dream that brings us here

Your mind will take you far
The rest is just pure heart
You’ll find your fate is all your own creation
Every boy and girl
As they come into this world
They bring the gift of hope and inspiration

Feel the flame forever burn
Teaching lessons we must learn
To bring us closer to the power of the dream
The world unites in hope and peace
We pray that it will always be
It is the power of the dream that brings us here

There’s so much strength in all of us
Every woman child and man
It’s the moment that you think you can’t
You’ll discover that you can

Feel the flame forever burn
Teaching lessons we must learn
To bring us closer to the power of the dream
The world unites in hope and peace
We pray that it will always be
It is the power of the dream that brings us here

Feel the flame forever burn
Teaching lessons we must learn
To bring us closer to the power of the dream
The world unites in hope and peace
We pray that it will always be
It is the power of the dream that brings us

The power of the dream
The faith in things unseen
The courage to embrace your fear
No matter where you are
To reach for your own star
To realize the power of the dream
To realize the power of the dream


WOW! Was this the clarity I had been praying for? All I know is that there is a little boy named Ethan who has given the world a gift of healing. He is bringing people together from all over the world. I thank him for this and I honor him for this. And I thank you for joining us. We could not do this with out you.

As Celine sings it best,
"There’s so much strength in all of us
Every woman child and man
It’s the moment that you think you can’t
You’ll discover that you can"

Thank you & please share our story

To continue...

Ethan's Web (part 2)

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".

Ethan's Web (part 1)

Ethan's Web (part 1)

Due to a series of events lately, it has become very apparent to me that I need to share some happenings in our life. If I don't share I may just either 'go crazy' trying to figure this all out on my own or I will 'explode' with the amount of thoughts growing inside my head from all of the events that have been taking place. It concerns our son, Ethan. You see, 8 years ago, Ethan was born with a condition known as Spina Bifida. If you have never heard of this before, it is a deformity of the spine that happens in the womb the first couple of weeks of life (gestation). My husband and I had no idea that Ethan had spina bifida until the night before he was born. Since conception, his life has been a series of unexplainable synchronicities. It is as if something has been guiding him on a path of community healing all of these years. I truly believe he was born with Spina Bifida for no other reason than to bring people together. I am going to begin writing about these happenings over the past 8 years as much as I can.

Lately, we have had some more incredible synchronicities in our life that just can not be explained. You see, with Spina Bifida comes a life of irreversible bowel & bladder incontinence. This is only one of the many hurdles these children have to live with every day. For our Ethan, he has been incredibly lucky so far. He has lead a life filled with daily diaper and pull up changes. We are the lucky ones. Most kids have to be catheterized every 2-3 hours, take medications to paralyze the bladder, and use enemas to clean out the bowels every night. These can take up to a 1/2 hour every night of sitting on the 'potty', flushing the bowels with water, and just waiting for the stools to pass. I have spent years trying to figure out ways to help Ethan 'feel' and gain bowel and bladder control. We have had glimmers of hope along the way, just enough hope every time to keep us going and trying to find a way. Until recently, I had just 'given up' and decided we were finally going to get set up with a catheterizing and enema program for Ethan. We even still have an appointment in the next couple of weeks to follow through with this kind of program. But in the meantime, something incredible has happened.

For over a year now I had been trying to get Ethan into a nerve rerouting research study at a local hospital. I had given it my all and tried every angle I could to get him in. But, because he walks with arm crutches they would not consider him. This was his only disqualifying factor. We have never done any other interventions that would have crossed him off the list except for getting him to walk confidently with arm crutches. He is very good at walking too. He can climb snow mounds and use his crutches as parallel bars while he does acrobatic tricks with his legs. The research study uses a procedure developed by Dr. Chuan-Gua Xiao of China where he takes spinal nerves and reroutes them in order to help with connections needed in the sacrum area for emptying the bladder completely on your own. Dr. Xiao claims a 87-90% success rate. These kids are often able to 'pee' on demand after a period of time. Their bodies just adjust and heal on their own making volitional bowel and bladder control possible! Well, I found out about this study over a year ago and had tried every angle to get Ethan included. But, they would not consider him. So, I let go.

Until, something extraordinary happened. About a month ago I received an email from my sister in law, Holli, who had just moved to China in December due to her husbands company. She had just finished working with Doctors at a hospital in China through a program call 'Love without Boundaries'. During her volunteer time she helped out any way she could with Chinese children who received cleft palate repairs for free. In the process, she became friends with one of the Doctors who knew Dr. Xiao. Through their conversations together this Doctor learned about Ethan who then offered to connect Holli to Dr. Xiao to see if he would do the 'Xiao procedure' on Ethan in order to help him. Holli had no idea that I had been trying to get Ethan in on this study back in America over a year ago. She was just thrilled that someone may be willing to help Ethan with something that promised bowel and bladder continence success! So, when she emailed me with the news I almost fell over. Actually, I began to cry. I cried allot. My husband and I were at dinner and I could hardly contain my feelings. Could this be the answer to our prayers? Because, God knows that I pray every day for Ethan to have bowel and bladder continence and to walk independently one day. I didn't know for sure if this was everything we had hoped it to be but you could not deny the divine synchronicity of the whole thing.

I mean...just think about it...I had been working on this for quite some time back here in America and I had given up trying everything I could to help Ethan out. My sister in law moves to China in December and unknowingly makes contact with the man who invented the procedure that claims bowel and bladder continence for kids with spina bifida. One can not deny how incredible this was. When my sister in law found out we had known all about the procedure and had been trying to get Ethan in the study in America, she began to cry with joy. Now, we had contact with the very man, Dr. Xiao, who agreed to do the procedure on Ethan if we brought him to China.

Currently, we are in the process of deciding what to do next. Dr. Xiao has agreed to do this procedure in China at his new hospital that is opening in Shanghai in August. Our sister in law lives 15 minutes from the hospital and we obviously have a place to stay if we decide to do this.

Bowel and bladder continence would be an undeniable tremendous gift to Ethan. He struggles with this every day. This would help his self confidence and self esteem tremendously and we could go places and do things as a family we ordinarily could not do before. Most importantly, Ethan would have a new sense of freedom that was never there before. How wonderful that would be for him.

For now, we have allot to sort through and we are just looking for more guidance and direction as to what to do next. We were told to have a neurophysiological test done and the synchronicities that lined up to have this procedure done were incredible. At first, the secretary did not want to let us have the test done and insisted that we go through 'the study' here in America in order to get signed up for the test. Well, this would have just put another hurdle we would have had to get over in order to get Dr. Xiao the information he needs. The next day, after our prior phone conversation where she sent me away, the secretary called me up and apologized for refusing to set up an appointment and said, "God has laid his hands on you and has brought this opportunity so we will do whatever we can to get you in to see the doctor and have the test done." She told us that the soonest appointment would be within a month but she would put us on the emergency list in order to get us in as soon as their was a cancellation in the schedule. As I heard her words, my throat began to close up and I began to cry. I told her thank you as best as I could behind my tears of joy.

The next series of synchronicities was when Ethan's former physical therapist just happened to call and check up on how we were doing. His name is Kevin. Their is an incredible history their that I will have to save for another blog. But, I had been thinking of Kevin for weeks now and had not seen him in over a year with Ethan. We had become good friends after spending many therapy session getting Ethan to walk and working together (because I am also an OT). That day, I had my hand on the speed dial button to call Kevin twice. For some reason, I knew I had to speak to him but was not sure why. I said a prayer to God, "If Kevin is supposed to be a part of this whole chain of events for Ethan than connect us together." I refused to call him myself because I wanted proof that I was not making all these synchronicities up in my head! SO, later that day at about 4:50pm guess who calls me on my cell phone? Kevin!!!!!!!! I could hardly believe it when I looked at my phone! So, immediately I told him EVERYTHING! What I had been trying to do the past year with the nerve rerouting study, my sister in law making connections in China, the fear of loosing lower extremity motor control in exchange for Bowel and Bladder control, etc. etc. Kevin was so calm and just matter-of-fact about it that it put my entire mind at ease. "You just collect all the information you can and make the best decision you can." So, in the mean time, we decided we would get Ethan into physical therapy as soon as possible and make him as strong as possible in order to get him to walk independently and/or just in case we decide to go to China.

There is so much more that I could go on and on to explain here in this blog, which I will continue to do. I will continue to write as much as I can whenever I can because as for now, this is the only thing that is keeping me sane through this whole thing. But truly, I know that this is a blog that is filled with connections, healing, and joy. There is something incredible that is happening and that is coming out of all of this. This series of Blogs will be titled Ethan's Web (parts 1, 2, 3 , 4, etc. etc. etc.) And how did I come up with the name? Well that in itself is a whole other story for another blog. Let's just say that there is divinity working here and that nothing else can explain all of this and everything else you will be reading. With that, I hope you keep checking back and I hope you tell others to come and read. God knows that I could use the support. We have allot to look forward to and remaining present in the moment is really difficult right now. Thank you so much for taking your time to read this and for sharing if you decide to share. We are truly grateful.

Love, Jennifer