Ethan's Web (Part 7)

The past couple of weeks has been filled with hard work and determination. Ethan goes to therapy every Tuesday and Thursday and works incredibly hard at his ultimate goal; walking. For 90 minutes he works each and every muscle group; lifting, stretching, climbing, pushing, pulling, etc. He has the type of workout that would put me on the bench. This is him working in 'the cage'. He is working on all the muscles he needs for walking; all of those extensor muscles along your spine, hips, and legs that help you to stand up straight and balance. The lovely woman with him is Heather, his physical therapist. Just below are Kevin and Heather who are in the midst of talking about how they can work Ethan in a way that will target his muscle groups that still need to be strengthened. They are always coming up with fresh ideas that help Ethan to get stronger.
And it is working! We are beginning to see results. Ethan is standing taller, walking stronger, and improving the way that he walks. Before therapy Ethan would always walk with his right foot to the side and push off on the inside of his foot. Just within the past week he has been relearning how to walk from heel to toe and keeping his feet straight. At first, we were reminding him all the time through out the entire day. I sounded like a drill sargent constantly telling the soldier to 'keep his foot straight'. But by weeks end he was walking with his foot straight and the drill sargent was able to rest her voice. We are constantly working towards our goal. In the past (only about a year ago) Ethan would complain and whine about having to do therapy. This time it is different. There is a determination in his eyes that I have never seen before. Every time he is able to do something he has never been able to do before he smiles. It is the kind of smile that starts out small at the corners of his mouth and then when he begins to realize he is REALLY DOING IT (whatever it may be, ie. lifting his leg to the side, standing for over a minute, keeping his foot straight) his face just explodes with light and a giggle that is trying to contain his excitement. I'm not sure why but he is very humble about his accomplishments. Maybe it is because he is embarrassed by his Mom who is usually the one in the background jumping up and down and cheering like her son just scored the winning goal for the Stanley Cup! But seriously, there is a light in his eyes that I have never seen before. And he is constantly showing his determination every day, wherever we may go and with whatever we may be doing.

For example, Aiden (Ethan's younger brother) had soccer camp this week. On the first day of practice we arrived at the field to find that in order to get to the area where he would be playing soccer we would have to walk down 25 steps on a large steep hill and across a field about the size of a football field away. My first thought was, "Oh my, Ethan is going to have to wait at the top of the hill while I take Aiden over with Eleanor." But Ethan declined the offer to just wait and tried his hardest to keep up with us. Of course he did too. Every day thereafter became an on the spot therapy session. Ethan was determined to walk down the steps and sometimes walk across the field and every day he would have to walk back across the field and back up those 25 steep steps. Not only did he just have to walk up those steps but he had to consciously think about where he was placing his feet and arm crutches in every moment. Remember, he had a habit of placing his foot to the side when he walks so every day and in every moment he was consciously choosing to straighten his foot and relearn the pattern of walking that he had been using for so long. It was amazing to watch the strength and determination resonate from this little boy. Of course, he had his mom back there cheering him on and telling him when his foot was crooked or straight and Eleanor (Ethan's 3 year old sister) even cheered him on to keep going when he was getting tired. She would come over to him look him straight in the eye as she crouched down to get right in his face and say, "Come on Ethan, you can do it!" I would just smile and thank God that we never have to do this alone. By the end of the week Ethan was beginning to master his new walking pattern and the steps had become allot easier to climb. Ironically, Ethan was rewarded in a most unusual way!

Several of the coaches had noticed Ethan throughout the week. One day, one of the coaches asked if Ethan would be interested in a mini private soccer lesson. "Just to kick the ball around", as he said. I asked Ethan that day and he seemed very hesitant. He didn't want to have a lesson. I think he felt pretty self conscious about the whole thing. So, I let it go and prayed that if this was supposed to happen that it would come together easily. The next morning, Ethan asked me, "Mom, do you remember when that man asked if I wanted to do that thing you were talking about?" "You mean the soccer lesson?", I replied. "Yeay", he said. "I want to do it." He remarked with a tiny smile beginning to form on the corners of his mouth. "Ok, let me see what can be done." I said. By this time it was the last full day of camp and everyone was busy trying to finish their agendas. I just prayed again asking for this to be done if it was supposed to be and the opportunities began to fall into place for Ethan. The camp director approached me about an email I had sent the night before, thanking him for the offer and declining the invitation for a mini soccer lesson. Ironically, I had confused one of the coaches as the camp director and sent the email to the wrong person. Well, the director approached me and started talking about how they wanted to start a soccer program for kids with special needs and that he knows I had mistaken him for someone else but that this had sparked his interest in the possibility of developing a program. I told him that Ethan had changed his mind since yesterday and that he now wanted to kick a ball around. Before we knew it, Ethan had 5 coaches around him teaching him some key soccer techniques and Ethan taught them how much he really CAN do. Ethan was thrilled! For 20 minutes he was surrounded by a bunch of guys eager to see him succeed. It was thrilling and inspiring to watch. They were amazed at what Ethan could do and Ethan was amazed at what they could do. By the time they were done Ethan went home with a camp t-shirt (just like all the other campers) and a camp soccer ball. You should have seen his face when they told him he could have a soccer ball. At home that evening soccer camp was all we could talk about at the dinner table. Both Ethan and Aiden couldn't wait to get done with dinner so that they could take their Dad out to the back yard and play 2 on 1 soccer. For almost an hour I heard screams of laughter as the kids continued to play and finally won the soccer game against their Dad. The next day Ethan wore his soccer camp shirt to the family day and final day of soccer camp.

These past couple of weeks have been full of wins for Ethan. His wins have helped our entire family. There is no doubt that Ethan will achieve everything he sets out to do. Every time I question whether or not we are on the right path or if Ethan will ever walk, run or have bowel and bladder continence I am given a rose in some form. I ask God to show me clearly and the roses come. They come when I least expect them and then I suddenly remember that I had just asked for confirmation 15 minutes ago, an hour ago, or earlier that day. It is an unexplainable 'feeling' inside a 'knowing' that it will all work out and that Ethan is miraculously healing before our very eyes. Six years ago, I had a vision of a little boy about 8 or 9 years old running down a ramp to a man in a canoe. I was across the lake watching from the shore as this young boy climbed into the boat. When I took a closer look I saw that the boy was Ethan and the man in the canoe was my husband, Andy. This vision has kept me going and it has kept me believing all these years. Jesus once said, "Don't be afraid; just believe." With this, we put all our fears aside and we know that all we have to do is "just believe".

Ethan's Web (part 6)

It is very quiet this morning as I write this blog. My kids are sleeping and the day is just beginning. There have been many more changes in our lives the past week. The kids finished there last week of school for the summer. We had Ethan's final Individualized Education Plan (IEP) meeting for the coming school year in 2009-2010. This takes place every year in order to prepare for the following school year and all the extra services he may need. In the past we would talk about how Ethan's education is going and what extra support services he would need and how to incorporate them for the coming school year. Usually, we had physical therapy to help him out with any school issues of getting around and becoming independent with classroom management such as opening and closing doors, carrying items, etc. All things you have to think about a little more when your hands are tied up with holding arm crutches while walking. We also use the social worker to help with social skills and establishing relationships with other children. This is a tricky task, in my opinion. Somehow, you show up as an adult in the school and teach kids how to cooperate, make friends, and interact with each other. Ethan was always a bit shy about making friends with other kids his age so we thought this would help give him the extra boost he needed to stretch his limits. Then there is the resource teacher that helps Ethan catch up on some of his academic skills. I believe he is behind because of having to learn how to move the past 8 years instead of an inability to learn. While most kids were learning their ABC's Ethan was learning how to walk. But this year, Ethan has made tremendous gains. He has grown and blossomed in astronomical ways. He is functioning like a typical first grader entering second grade even thought he is truly a second grader who is supposed to be entering third grade. For this reason and many others that would take me pages to talk about we decided to give Ethan 'another year of growth' as they call it. He will be repeating second grade. For good reasons. He has all the skills of a typical 1st grader and I would like him to, for once in his life, be at the top of his class. He has friendships with children that he has never had before. He is reading and writing just like his typical 1st grade peers and he is finally very independent in the class. All of our hard work the past three (academic) years is finally 'paying off'. He is just like all the other kids except he is only one year older. Goodness, if I had to walk with arm crutches all day I too would be a little intimidated the first couple years of school life. So we are giving him a chance to excel socially and emotionally which will definitely help out his cognitive and physical growth. Kids as well as adults all have social, emotional, mental and physical layers that all need to be balanced. We are giving Ethan the opportunity for all his layers to come together and finally integrate. It is this balance that is a part of his healing and with this balance he will be even stronger than ever before in all areas of his life. That is what the present and the coming year of his life is all about; balance and integration.

So, getting back to the IEP meeting...
As a parent it was my responsibility to convey this 'knowing' to the faculty that governs his IEP and gives him the support services. I think of the support staff as angels that stand behind Ethan encouraging and nudging him to grow and prosper. On the physical layer of his development were the angels of physical therapy, his support aide (to help him get around school with confidence), and occupational therapy. On the social/emotional layer was the social worker helping with his relationships with his peers and his self confidence. His support aide, Ruth, also helped him out with this during the day as well. Actually, she has been his ARCH ANGEL as we should call her. Her job was to float in and out of his life daily helping him with various events through out the day such as getting on and off the bus (yep, I made Ethan take the bus with arm crutches, back pack, and all), helped him get used to going to the bathroom and changing his pull up regularly, with learning how to manage and carry all of his books and papers throughout the day, etc. etc. Whatever he needed to work on, Ruth made sure it was carried through. She was not by his side all day (this would be too distracting and he did not need someone there all the time)but like I said, she would come in and out of his day and help out at certain recommended times. Lastly, the teachers and the resource room teacher of course would help Ethan out with his mental layer and the development of his academic skills. All of these angels would help him daily trying to figure out the best ways to encourage and help him along. Other angels would float in and out of his life through out the school year to help us determine more of his strengths and needs but overall it was everyone working together that had made the year so successful. I had made it clear to the staff that Ethan was to remain in the classroom this year and not be pulled out for any services. This took some time and some out of the box thinking but in the end they pulled it off and showed that keeping Ethan in the classroom this year was even more beneficial to him than years passed. You see, Ethan is just like any other kid and just has some extra development to accomplish. So, lets treat him like any other kid by keeping him in the classroom (because eventually he is going to be in the class all the time anyway) and have the services come in and out as they are deemed necessary to work on the specific goals we want Ethan to achieve. But taking him in and out of the classroom to provide services would merely stunt the growth opportunity of his younger years. As a parent, you have to think about what you want for your child and how to go about obtaining those future goals. Getting Ethan to function typically in the classroom was not going to happen if we had to pull him out of the classroom all the time in order to learn. He needs the opportunity to learn just like any other kids in the classroom. I have always envisioned a typical life for Ethan where 'struggle' is not in his vocabulary. These services are here to help him break out of his cocoon that he feels so 'safe' inside, dry off his wings, and push him to fly. So far, we have helped him break out of his cocoon and he has dried off his wings. He knows how to fly and next year is the opportunity to do this.

So, in his IEP I wanted it stated that he would NOT be pulled out of the classroom for ANY support services except in the hallway or to the side of the class in case we needed to have 10-15 minutes of individual time to focus and reconnect with one of his angels. For some reason, this became a big problem for the support staff. They could not envision not having the luxury of taking Ethan out of the class room if they needed to reach one of their goals with him. I insisted that they keep him in the class and that it was in Ethan's best interest not theirs that should be keeping him in there. I also had the support of his fabulous regular education teachers that could 'envision' this for Ethan and wanted him to stay in the classroom. They had been educated in Educational Kinesiology like me and shared the same philosophy when it came to children and learning. So, this particular morning I knew I would be walking into an IEP meeting that was resisting my request. Just 2 weeks ago we had already met to discuss this and had to break to meet again at another time after almost 2 hours of debating the issue.

In preparation for the day's event I had done something that I had not done in the past; prayed for help. I 'asked' to be provided with everything Ethan would need for the coming school year and to help me 'get' what we were searching for if this was the best thing for Ethan. I then 'let go' and trusted. I prayed this prayer for 2 weeks. Slowly, the information came. I was given contacts of people that had experience dealing with this before and who encouraged me to press on with my requests. I was even given information on what to do if I needed to appeal the process and leave another meeting without signing any papers for the following year. This information came through paying attention to the signs. Casual conversations would lead me to the answers and I would have a sense of 'knowing' that the information that I needed was being given to me. I did not have to force anything. Through prayer and 'letting go' it came. Of course I did the work but the work was not as difficult as it had been in the past. In the past, I would worry and spend an enormous amount of time and energy calling, researching, and investigating every aspect of this as I could to see how I would be able to get what I wanted. This time I decided that with all the time and energy I had been spending on so many other aspects of Ethan's life and my other 2 kids I simply had no energy left to do what I thought was required in the first place and I would have to just leave it up to the universe to help me out. I say universe because I use the terms 'God' and 'universe' interchangeably sometimes. Not that I am disrespecting the divine but that I have beliefs that there is not just one path to 'God'. Anyhow, back to letting go...

That very morning, I woke up and meditated/prayed just like any other morning. I was consumed with some anxiety that morning about how the meeting would progress. I opened one of my inspirational books and turned to the page that talked about 'Listening to the Word'. I resisted this and quickly tried to turn to another page but knew that 'Listening' was my message that I was supposed to embrace for the day. I could not understand why. I am not going in there to listen I am going in there to fight for what my son needs for next year! Listening was not what I 'thought' I was supposed to be doing. I needed words to inspire me to press forward with my beliefs not to be told to listen! I was taken back by this idea and kind of mad that I was being told to listen. But, I went forward with my day.

When I arrived at the school for our meeting I was told that we would have our conference in the teachers lounge instead of the usual conference room. I had to ask where this was because I had never been there before. I was directed into the room. When I entered I was greeted by the Director of Special Education sitting just behind a flowered centerpiece filled with all types of purple and yellow flowers and PINK ROSES. I greeted the director, went to put my hand bag on the ground and noticed, as I glanced at the very spot I was to drop my bag, that a small spider crawled across the floor. I immediately thought of Ethan and the WEB he had been creating. Suddenly, I was filled with calm. I knew that I really was just supposed to LISTEN. So, we sat making small talk as we waited for the other participants to arrive. Eventually, we were all there. Ethan's regular education teachers and his special education teachers and support staff. The director began the meeting. I listened. As she spoke, she explained that after careful review they had decided that writing in the IEP that Ethan should remain in the class was possible and that they would be willing to do this on the condition that they could pull him aside for 10-15 minutes within the classroom or the hallway if necessary and that we would reconvene if the situation does not seem to be working out after a period of time. As she spoke, I felt that little girl inside me start to jump up and down with excitement and shout, "Hurray! Hurray! We asked, we believed, and we received!"

Of course, I was incredibly relieved that we did not have to continue to fight and that 'letting go' and 'trusting' had worked. We spend far too much time worrying and 'thinking' we have to do it all instead of 'listening' and feeling what we are being called to do. Personally, I don't call upon the universe, the angels, and God for help enough. I spend far too much time worrying and trying to figure it all out when it has already been done for me. All I have to do is ask and pay attention to the signs. So, finally, I think I have learned an incredibly valuable lesson. To ask and have faith that I will receive. Wow! There is so much that goes into that statement that I can not even begin to wrap my mind around it in this moment. For now, I choose to follow my purpose in life and trust that when I ask I will always receive. There is one thing I do know, Ethan has played a large role in teaching me this.

With that thought I lead to another... We have decided that Ethan will have the surgery with Dr. Xiao in China. We are just waiting for confirmation on the exact date so that we can start planning our trip. Ahhhhhhh! FAITH & TRUST, faith and trust, faith and trust. I am, I am, I am. WE ASKED AND NOW WE WAITE TO RECEIVE!

Ethan's Web (part 5)

The synchronicities in our life just keep coming. There are so many that I have to keep writing in order to keep up and keep track of them all. Yesterday, I took Ethan to his Neurophysiological appointment. It was a 2 hour appointment where the Doctor put Ethan through a bunch of testing in order to determine which of his nerves were functioning 'the best' and which were not. When we walked into the waiting room we were immediately greeted by a vase of a dozen pink roses. I was happy to see the roses but could not understand why I needed this further confirmation why we were to be there. We had this appointment planned for several weeks now, Dr. Xiao needs this information in order to do the surgery, and I felt confident about what we were doing. So I made not of the roses and said a quick 'thank you' in my head.

Everything seemed to be going fine during the testing. The Doctor did a whole bunch of standard neurological testing. Curious, as I should be, I asked the Doctor if this was all the information he needed for Dr. Xiao. He said that this was only part of the procedure and that he had more testing to do. 'OK', I thought. At the end of the first part the Doctor said that it was now time to go into the other room to do the electrical testing and the pin pricks. Mind you, he said this OUT LOUD in front of Ethan who FREAKS at the thought of getting a shot in the Doctors office. He freaked so much one time that he manged to head butt me in the nose while I was trying to hold him so that he could get a shot done quickly. We managed to get Ethan into the other room and up on the testing table. But then it was time for the electric current testing. After, much consoling and talking we finally were able to get Ethan to do the test but he still cried and resisted and freaked every time the machine buzzed. It was a small current that they would send through you skin to get your muscles to move. Yes, I would be freaked too if I was a little kid. But I had remembered the roses in the waiting room and finally understood why I had been given that last minute confirmation. Next came the pin pricks. Unfortunately, the Doctor had shown a needle that he kept some sticky gel in in order to keep the electrodes moist and able to stick to the skin. Ethan absolutely went crazy when he saw that needle! I would too if I thought someone was going to stick that into me. We tried explaining to him that he was not getting the shot and that it was just a gel inside the needle used to make the electrodes moist. I don't think he heard us amongst all the crying and screaming. So, I stood there and just prayed. I prayed for God to take over this situation and to have the angels surround us and calm us down. Of course I did this all in my head. I wasn't getting down on my knees asking for divinity to come in and make this situation miraculously get better. Although, that would have been nice, I did pray for guidance and a miracle. It took a couple of minutes but Ethan began to calm down enough that he could hear us over his yelling and crying. He now knew that he was not getting that shot. But then the Doctor pulled out what he actually did need to do. He had a small needle about 1 inch long and the thickness of a small paper clip that he needed to stick into Ethan's left leg in 5 various positions in order to confirm the health of his lumbar nerves. Again, Ethan began to cry, yell, and carry on. So much that I started to feel that we were not going to get the information we needed and this really wasn't worth it in the first place. I asked the Doctor if we had to have this done and he said that the surgeon needs this information to be sure he was taking a healthy nerve but he did not know if he could do the surgery with out it. He was just following the research protocol and that every child had received this test.

Once again, I began to pray and once again Ethan began to calm down enough that I could talk to him. But now I was getting anxious or had already been anxious but was doing a nice job of containing it. I began to get irritated and loud and at one point told Ethan to "forget it and to get his socks and shoes on because we were leaving." Then Ethan said, "No, I want to do it but I am scared." With this, I saw hope. So, I pressed on. It took 15 minutes going back and forth of me saying we were going to leave and Ethan saying no that he wanted to stay and do it and then another moment where the Doctor walked out of the office out of complete frustration but some how some where Ethan found the strength and the courage to actually lie down and let this complete stranger stick a 1 inch needle into his legs in 5 different places. I cringed watching this and had to turn away several times. Of course, I did not let Ethan know how I was feeling I just stood by the head of the exam table and held his hand and stroked his forehead. By this time he was covered in sweat and had hair sticking to his forehead like he had just run a 5 mile race. Within 5 minutes the testing was over. Ethan was given 2 stickers (a small reward compared to the task he had just overcome) & we went out into the waiting room to wait for our report. I saw the roses again and now finally understood exactly why I had been given this confirmation in the beginning.

A couple hours later after Ethan and I had lunch together and an opportunity to bond again after I had taken him through this terrible ordeal we drove over to Pee Wee Patch for a meeting. I am still trying to keep my therapy practice going and we had plans to develop a program at a near by day care/after school care/summer program. I spent some time in the front lobby talking to a friend of mine about the appointment we just had. We talked about 'the roses' and how they seem to pop up and confirm things for us concerning Ethan when we need them too. My friend agreed that I needed to keep writing about this and with that I looked down at a small hand held calendar on her desk and saw a very tiny rose. I showed it to her and we laughed! Then later on the same day after Ethan and I had taken our daily 40 minute drive over to Physical Therapy I sat in the waiting room and watched as a 5 year old girl ran into the waiting room back to her mom after completing therapy. On her left pants leg were three roses near her ankles. I just smiled, took note, and was thankful for the continued confirmation.

These three roses had reminded me of a dear friend back in Pennsylvania who had given me an angel with three pink roses 8 years ago after Ethan was born. Her name is Kay and she had been on my mind for quite some time now. So often, that every time I passed by a building in our area named 'Kay Industries' I thought of her and knew that I had to call or write. Last minute, during this same day in one of my quick stops home before running off to the next appointment, I had looked in a place where I store old letters and journals from years past. I found one of Kay's letters with her address on it and decided that I would write her while I was waiting for Ethan during his therapy. These three roses on this little girl's pants leg reminded me to follow through and pull out some paper to write. I opened the letter Kay had written me years back and found not only her address but her phone number! At first, I tried to write her a quick note but the folks in the waiting room happened to be very chatty that day and I knew that I would not be getting anything done. So, slipped out the door into the hallway and gave the phone number a try.

Kay picked up immediately and she was so EXCITED that I had called. We talked for some time and I was able to tell her everything that had been going on in our lives. Kay is a beautiful woman who believes with out a doubt that Ethan will walk independently (without arm crutches) and have bowel and bladder continence one day. She felt this from the beginning. We used to work in the schools together in PA. I was an Occupational Therapist and she was the support staff for one of the buildings. She would pray daily for Ethan and she said from day 1 that she would pray for him for the rest of his life. I knew she always had because I would think of her often and feel her praying for him. She is always so firm in her beliefs and convincing. She 'knows' with out a doubt and she will not hesitate to tell you so. I have always needed the support of Kay by my side. I believe that Ethan will do all of these things too but when you have a friend like Kay who believes as well it makes it all the more powerful!

So, Kay prayed for Ethan and our family on the phone and committed to getting all of her friends and family to pray for him too. She said that she is so happy that I called because she would pray for Ethan daily but she now knew exactly what to pray for. We finally hung up and I was relieved that more people (especially Kay) would be praying for our son.

This morning Kay called me with some exciting news. She told me that she had prayed last night and this morning for Ethan and she had told several others to do the same. Kay loves to watch certain Christian shows on TV and on this particular morning was looking for a particular show but settled for a different channel when she could not find what she was looking for. The woman on the channel announced, "I love what we are going to be talking about today. Today we are going to be talking ALL ABOUT CHINA & HOW GOD LOVES CHINA!" Kay nearly fell over. She remembered one of my past blogs and how I had described how awareness comes to us in many forms and often when we least expect it. Now here she was experiencing exactly what I had talked about. She then knew that she needed to call me and tell me what had happened. I was certainly glad she did. Now, it wasn't just me who was getting confirmation it was others as well. As we spoke on the phone I had music playing in the other room and I could hear "Calling All Angels" by Train playing in the back ground. The line goes something like this..."I need a sign, tell me why I'm here, the lines seem so unclear." Then I looked over and saw one of my favorite books on the shelf "Love, Medicine, & Miracles" by Bernie S. Seigel, M.D. Lastly, before we hung up, Kay prayed for us again, and in the back ground played "Suddenly I See" by KT Tunstall. It went, "Suddenly I see, why this all means so much to me, suddenly I see, suddenly I see why this means all so much to me".

With this I suddenly 'see' why this all really means so much to me. Why it has always meant so much to me that Ethan walk with out arm crutches and physically be completely healed. Why? Because I believe in the power of God and I believe that Ethan was sent to us to show us that the power of God is limitless and that with him anything is possible. We are given the answers to our prayers every day. Are we awake enough to notice the signs and follow the path? I don't always think that I am and I certainly do fail often but every time I pray and meditate I am able to keep going and 'see' why this really all does mean so much to me!!

Ethan's Web (part 4)

So, much has happened this past week and 1/2 that I need to list all the events. But first, I must say this...The reason I have not been writing more often is because I am exhausted. I have been physically and emotionally tired. But today, I feel that I have been given the energy to write, so here I am.

Recently, after writing the last blog I had been overwhelmed with support from all of you. The prayers and healing have been heard and felt. People have written me emails and letters telling me that they are reading Ethan's blog and praying for us daily. For this, I am so grateful. I know that prayer heals. And your prayers are working. The road to Ethan's healing is getting easier. Clarity has come into my eyes. I see us going to China to have this surgery for him. I see an incredible purpose behind this journey. I can not tell you what it is but I can tell you that I now 'know'. I had been praying for clarity, like many of you, and with the recent events (that I will explain) clarity has come. I must say that my clarity is 'my own'. It is not completely shared by our entire family. For some there is still doubt and some fears and I respect and honor this. I know that if we are to go that everything will fall into perfect divine order. It is my job to simply be aware of the signs and to follow the path. Simple, right? Ha! We'll see how simple it is when I talk about all my emotional breakdowns and insecurities I have had. (; But seriously, I have Faith.

On May 26th, I sat in my living room filled with doubt again. I knew we were supposed to be meeting with Dr. Xiao (from China) sometime this week to talk about the surgery for Ethan. He happened to be visiting the states to be involved in the research that was being done at a hospital close to home. We had given him our phone number to call us when he had a spare moment to meet. We had given the research coordinator our phone number to give to Dr. Xiao to call us so that we could meet. We had talked with the American Doctor about meeting with Dr. Xiao and that we hoped this could be arranged since they were working together this week. It was out of my hands. There was nothing more I could do, but wait. So, there I sat, and began to pray. I was filled with so much anxiety that I knew of nothing else that could calm me. I told God, "Please let this work out if this is supposed to be. Please have them call me today and let us meet with Dr. Xiao. I am having trouble God, help me through this." I kid you not...10 minutes later...the phone rings...it is Detroit Medical Center calling to schedule Ethan's Physical Therapy evaluation to begin therapy next week. (Kevin has a habit of calling with such divine timing). Then after I hang up the phone...the phone rings again...it is the research coordinator asking if I can bring Ethan to see Dr. Xiao now and when can I be there. Ahhhh!!!! Ironically, my husband calls on my cell phone a few moments later and before I know it I am on the land line with the research coordinator planning our time to meet and on the cell phone with my husband so that he can 'listen in' and make plans to meet us there. Incredibly, the baby sitter came to pick up my other kids at the bus stop and I took Ethan to go see Dr. Xiao with my husband.

On the car ride over I am filled with excitement and anxiety. There are so many questions, would we be able to get our answers? We walked into the urology office at the hospital and were introduced to Dr. Xiao. We sat down together and he explained what he would be doing during the surgery, the risks, and the benefits. He is a calm and assured soul. It turns out that he feels that the surgery will most likely give Ethan bowel and bladder function and that it is a simple procedure that he will do for us in China. As I watched him talk I could feel a sense of 'knowing' come through my body. I just knew.

And my husband, who was still doubtful, expressed his greatest fear of Ethan loosing motor control due to the surgery. And the possibility of the surgery not even working. Dr. Xiao believes that this will not be the case for Ethan and in the end when we were leaving explained that he feels that the surgery might even help him to walk better. There are nerves that have been restricted due to scar tissue in the area that they would be working and through the surgery they may be able to free up those nerves and thus allow the nerves to do their job and help Ethan gain more lower motor function. Several times, Dr. Xiao looked at Ethan and watched his walking and repeated that the surgery may even help his walking too.

We left encouraged, thankful, grateful for our meeting. We even found out that Dr. Xiao would rather do the surgery around Christmas break due to his schedule. A part of us was relieved at the idea of waiting until December. We could have even more information by then to help us make our decision and it gives us more time to prepare.

On Friday, May 29th, Ethan and I drove to the University of Michigan in Ann Arbor to meet with Dr. Park for a previously scheduled urology appointment. We had scheduled this months ago when I had 'let go' and decided it was time to start learning to catheterize and do enemas to help Ethan remain dry. My reasoning for keeping the appointment was that at least we would have another option if the Xiao procedure was not for us. Amazingly, Ethan had a very tough time this day. He DID NOT want to be catheterized and to do the enemas and he made it VERY clear. We had a 90 minute appointment that turned into 3 hours due to his perseverance. We finally were able to get the testing we needed to be sure his bladder and kidneys were functioning normally but by the time it came to teaching us how to catheterize and perform enemas we were both so emotionally exhausted that I could not even focus. We were still given the information and some of the supplies we needed but have been unable to follow through with the recommendations. I am just too tired to fight.

Dr. Park did have some encouraging things to say about the Xiao procedure and he was very excited for the possibility and our opportunity for Ethan. He is very supportive.

Tuesday, June 2nd, we went for Ethan's Physical Therapy evaluation with Kevin and his assistant Heather. You will be hearing a lot about Kevin and Heather in the future because we will be seeing them every Tuesday and Thursday for at least the next 3 months. Kevin will be 'the guide' & Heather will be doing most of 'the work' with Ethan. They were both very encouraged and impressed with Ethan and how far he had come since the last time we had seen them (over a year ago). They were impressed with Ethan's strength, flexibility, sensation, and determination. He has muscular strength in places he did not have before, he has sensation in places he did not have before, and he is incredibly mature and determined which he was not before. All factors, that will help him to walk without arm crutches one day. Ethan's goal is to walk with one arm crutch for now and our goal is to get him strong, flexible, and able to do so; if he so chooses. So, every Tuesday and Thursday Ethan will be 'working out' for 90 minutes to increase his chances of walking independently one day. I believe we are in the best hands and I know that he will do it. "Roses" have always been a them with Ethan and his healing. I always know that I am on the 'right path' with him when I see roses, see the word 'Roses', or hear someone refer to it in conversation. I have many journal entries in which I write about roses and how synchronistic events revolve around roses and Ethan's journey of healing. On our drive home, I glanced to the right to look for on coming traffic and from the corner of my eye saw the street sign "La Rose Blvd". Then, I knew that driving 40 minutes to and from therapy every day is exactly what we are supposed to do. So, please feel free to remind me of this later in the summer when we are exhausted and wondering why we are doing this!

Ethan also decided to watch 'Evan Almighty' on the way to and from therapy in the car. There is a line in that movie where 'God' says to Evan's wife, "If you pray for patience, God gives you the opportunity to be patient. If you pray for courage, God gives you the opportunity to be courageous, etc. etc." All I could think of was "I pray for Ethan's healing every day and every day he gives us the opportunity for Ethan to heal." Amen.

Also, in the past week I had made contact with an old friend, Kaz. I have blogged about him before in the past and how he was raising money for a special needs camp through a Harley Ride here in Michigan. He used Ethan as his 'poster child' for the event. He is such a kind hearted soul and we are blessed to have him a part of our lives. 'For some reason' I had been thinking of him A LOT and decided to finally make contact with him over email. 5 minutes after I sent my email to him he called me on the phone and said, "I can't believe you just emailed me! I was just thinking of you and Ethan and wondering how you were doing!" "Here we go again", I think in my head. Another link in the web of Ethan's healing. I don't know what part Kaz will take but I have a feeling he is going to be a special part of our journey. Thank you Kaz, for coming along for our ride!

Lastly, I have been given daily confirmations that we are on the right path, the path to China and Ethan's continued healing. For instance, our good friend and Naturopath (Hallie) was thinking of Ethan the past weekend & knew she had to tell me that Ethan should be taking a certain supplement that will help with nerve connections. Or, I will be climbing the StairMaster at the gym and I will glance across and see that someone is reading an article on China with big red headlines "China's Strength" written across the page. In a moment of doubt I will receive a letter in the mail of someone praying for our family or an email of continued support. There is no doubt in my head that we are all connected and that the web that Ethan is weaving is bringing us all closer together. As one heals we all heal. I know that our family could not take this journey with out you. For you, I am grateful. Thank you.