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