Ethan's Web (Part 8)

This entry is a turning point in the web that Ethan has created. You see, I am a part of this web and so is Ethan's family so we also have a part in this story to tell that indirectly has to do with Ethan and his incredible healing. Ethan's journey is not just about Ethan healing but it is about our entire family's healing right besides him. Especially his Mom. 8 years ago I had a little boy in my arms that I was scared to death for. What would the future hold for this little guy who I was told would never walk and have multiple problems in his life? And how could we be given such a situation to behold? "Why? Why!", is all I could ask. There had to be more. There had to be. So, began my search for meaning in all of this and the meaning of life and why we come to live our lives the way we do. Ethan's healing has not just been about him but it has a significant purpose in my own healing as well. With each step he has taken it has taken me to a new step in my life. My faith shines strong when I see the miracles happen in his life. I will never stop believing that Ethan is on a path of miracles to show us all that anything is possible. But how did I get to this point in my faith? It has been a long and arduous process that I will tell you about if you care to listen.

When Ethan was born I was a recent graduate of Occupational Therapy and just beginning my career. Everyone thought that if there was anymore perfect of a mom for Ethan it would be me. My experience and knowledge of the body and physical healing was vast and brand new. But the prognosis for a child with spina bifida is not good. It is very text book. They tell you what level they are on the spine where the spinal nerves did not close and then from there they guesstimate what type of functioning you will have. Ethan's level meant that he would have trouble walking and need to spend most of his life in a wheelchair, that he would have cognitive difficulties, hydrocephalus, bowel and bladder incontinence, etc., etc. The prospect of having a child with multiple problems was overwhelming. I was not ready or up for the challenge. I did not want to be Ethan's mom. I wanted to be the mom of a 'normal' child. But my husband and I found out the night before Ethan was born of his condition and we had no choice but to have this new baby. I remember crying in my closet that night and falling into a deep depression with the thought of what our life would be like from then on. "How could this be? How could we be given such a child?", I feared. I felt so ill equipped to handle this life long situation even though everyone thought I was the perfect mom and I certainly did not want to be the mom of a disabled child. It is difficult to admit this out loud when you have gone to school to work with people who have disabilities. But, to me, that was not my life...I was just the therapist that would help them on their way...that was not what my life was about...that was somebody else's life. Oh, how wrong I was. And how much I was going to learn.

On March 24th, 2001, Ethan came into our lives with a bang. His birth was bitter and sweet. Bitter at the scary idea of having a child with a disability as 'big' as his and sweet when I took one look at him for the first time in person and realized a love that can never be compared to anything on Earth. A love of uncompromisable enormity. A love so huge that it could move mountains. A love like this that would create miracles. When my eyes settled on his little new born body I immediately lost all control to hold back any emotions that had been lingering inside me. A wave of tears came over me and a strength to heal came from me that I can not explain. This strength of healing was so strong that within hours of our surgery (my c-section upon Ethan's birth) I was up out of bed determined to get myself to the NICU (Neonatal Intensive Care Unit) where Ethan was being housed in order to see and touch him. It took three people to get me into my wheel chair and whether or not my newly formed stitches would hold tight or burst had no concern to me. Pain and all, I made the nurses get me in that chair so that I could be wheeled over to see my newborn child. Ethan, himself had gone through some incredible surgery just hours after he was born. He had a 'hole' in his back where his spine did not close and the nerves had collected. The surgeon had to go in, put the nerves where he thought they should have gone in the first place, close him up with his own extra skin (since he was a well endowed infant) and hope that the nerves would continue to grow on their own. The surgery was a success. I remember the surgeon standing at the foot of my bed telling me that he would be able to walk one day while the rest of the doctors told us that this was not the case. I would never speak to or see this surgeon again and I do not even know today what he looks like. It was the first of a series of miracles that would set me on the path of believing that Ethan's life had an alternate plane. Like the song from Natalie Merchant's "Wonder", FATE would have other plans for Ethan. The angels would hold him in their arms and grace him with a miraculous life full of wonder and unexplainable events. This is what I believed, this is what I knew, this is what I know.

So, I was wheeled up to the NICU, managed to scrub, and made it over to Ethan's crib side. He was in a bubble type of environment to keep him warm and risk free of infection. You could barely reach in to touch him and wires draped and covered his body with little tiny pads that stuck to him to monitor his every move. His arms were tied close to keep him from grabbing and tugging at things and his back had a large bandage covering him from the surgery. More tears began to flow as I sat there and watched my baby. All I wanted to do is hold him, cuddle him, and have him nurse. This could not be done. None of those things could be done and my heart ached with the longing to be a mother. To do the things a mother would want to do. All I could do is stroke his little arm, his little nose, his forehead or his leg and watch as his slept. At least I could sit there and be next to him. It was not long before my therapist instincts took control of the situation before me. I immediately wanted the nurses to position him correctly and to pay every attention to not just his vitals and the doctors orders but the orders form his therapist/mom who wanted Ethan to get the best of care. I had learned a thing or two from my internships in NICUs and I knew how important it was to position a baby such as Ethan correctly to limit any orthopedic and developmental problems in the future. So, I made the nurses take pictures and print them out on little cards with explanations demonstrating how Ethan should be positioned during the day to best help his development. It was all I could do and all I would know how to do in the beginning of his life. I took what I had learned and applied it to my first born in hopes that he would never journey down the path that the doctors were telling me he was destined for. Several times a day I would check on Ethan. I wanted to be sure that he was getting the best care and when I saw that a new nurse did not follow my orders I was sure to let her know and teach her what I wanted. I was supposed to be resting and healing but my healing was only dependent upon my sons healing. My life had been instantaneously transformed into a life that was determined to heal my son. I would not let go until I knew that he was on this path that I instinctively knew was his.

I remember sitting in the car on the way home from the hospital with Ethan in the backseat. We had waited a week for this day. Finally, we had the opportunity to bring our baby home and become a family. We stopped to get gas and I sat in the car watching from a distance as a man was running and my husband was out filling the gas tank. This man was out for a jog and it was a beautiful spring day. I sat there wondering to myself, "If that were Ethan running, how could I make that happen for him? How could I help him run one day?" I imagined Ethan running down the street. My life was consumed with healing and wanting a miracle for him. At times my behaviors would get the best of me and I would live my life daily on the thought and idea that maybe, just maybe, this would be the day he would be healed. I had allot of my own healing to do in the process. Ethan would not be healed by an all consuming miracle where he would rise up and walk like the stories of Jesus and the miraculous healings he performed. Although I admit I dreamed of it to happening this way. I wanted to wake up and have the whole thing just be a dream. I wanted the BIG miracle. Ethan's soul would have other plans. Ethan's plan was to bring all of my healing to the fore front and every step of healing I would take Ethan would match. Every time I made a giant leap of my own emotional healing from my own past my son would have his own physical healing. Ethan would have motor control that would never be there before; or he would say 'apple' at one years old in the grocery store as I was putting apples in the cart when the doctors said he would have cognitive problems; or he would begin to crawl like a normal baby at 12 months when I was told he would never be able to do this. These miracles that consistently corresponded to my own healing would keep me going, keep me believing, and reassure me to never give up.

I remember one day when Ethan was sitting in a neurology office waiting for the neurologist to finish his exam on how Ethan was doing. He was 5 years old and we had only been in Michigan a little over a year. The doctor was testing his reflexes and tapped his knee. All of a sudden his leg jerked forward. "Oh my gosh", I exclaimed. "He has never done that before!" Then the Doctor tapped his other knee. It jerked forward. "He has never done that before", I exclaimed again. "How do you explain this", I asked the doctor. "He has nerve connections now where they were not before", he simply stated. "You mean he is growing nerves", I asked excitedly. "Yes, his nerves are still connecting", he confirmed. The doctor was so 'matter of fact' about the whole thing and I could not resist the urge to jump up and down and celebrate. I immediately called Andy (my hubby) to let him know the miracle that had just occurred. Again, this added fuel to my fire and my quest to heal myself and my child.

So, our journey continued and continues today. Every effort Ethan makes with his own healing journey is felt deeply by all of us; especially me. When he heals, I heal. When I heal, he heals. So as we step closer and closer to Ethan's trip to China and the healing that will occur abroad I feel us healing at an ever more rapid pace. His life is coming together and balancing in ways that I could have only imagined. That I have imagined. I see the number '8' every where I turn which reminds me of balance and the significance that Ethan is 8 years old and his healing is coming full circle. A figure 8 is completely balanced from top to bottom and inside and out. His energy is flowing and creating healing in and throughout his being in every moment of every day and as is mine. I feel more alive than ever before and full of hope like I have never felt before. We have come to a time where we are completely accepting of where we are and what we are doing in every moment knowing that we are exactly where we always need to be. We continue to heal to move on and know that of course it is never about the destination and always about the journey and what a wonderful story we get to write and reflect upon along our way. I will continue to reflect upon this in these writing and of course bring up new happenings in Ethan 's life and all of our healing as a family. But have you know that Ethan's Web Part 8 is a turning point. It is a reflection of perfect balance coming into existence for Ethan and our whole family. It is a place of complete acceptance because we know what the future holds; a continued path of healing, rejuvenation, and miracles. How could it be anything else when we are living our heaven right here on Earth. Amen!