Spina Bifida Awareness: Charlie's Journey

I (Gretchen) "met" Larry a few years ago when he found my blog in his research for bringing Charlie home, and I have been blessed to call him friend since. I am really happy that he chose to share some thoughts with us about bringing Charlie home, and I hope you enjoy hearing from him! I know I did!

I am often asked why.

Why did you do it?

What made you decide to do this?

Why from China?

What I don’t get asked is “What’s wrong with him?

Why does he walk like that?

My wife and I decided in the winter of 2008 to attempt to adopt a boy from China. We are a mixed family living in Southern California. I am Caucasian and my wife is Japanese. We have two biological children 1 son and 1 daughter. They are 7 years apart in age and there was a spot right in the middle for Charlie, who was referred to us by an adoption agency in Delaware.

 Charlie was born in Tianjin China. Tianjin is a mid-sized industrial city one hour south of Beijing, which is the nation’s capital. I left Southern California to pick up our new son in February of 2009. My wife stayed home with our daughter. Our oldest son was in Northern California at college. I kept a journal of our travels in China. Some of the journal I will share with you here.

The first entry describes our first 24 hours together, which we spent in Tianjin in February, 2009.

This 24 hour period is the “Time of harmony” which means, do we get along? How can you honestly tell? He is 13 almost 14, and that’s a clue right there. Of course we get along… …if he does what I say. No really, right now we are getting to know each other. We are doing that in a quiet way. He has a small net-book computer. This was a gift from his foster family. I know he misses them. It is a great leap he is taking to leave what he knows, and go to America where nobody speaks Chinese.

Charlie is spending his time online with his new toy. He is content and I’m ok with it, for now. The jet lag is still with me. It’s harder than usual to shake off. The weather outside is FREEZING! A Southern California boy doesn’t belong in China in the winter.  Tianjin is a grimy industrial city. There are smokestacks throwing something up in the air, let’s hope its steam.

We ordered room service for dinner. It’s just too cold outside and I have no idea where to go to eat. Tomorrow we go back to the civil affairs office. This is when Charlie decides if he wants to go ahead and accept me as his new father. If he does, then away we go on with the rest of the adoption. If he decides not to proceed, well I don’t know.... that thought hasn’t entered my mind.

My wife and I both knew Charlie was born with Spina Bifida, however we were not 100% sure of the severity. We received detailed information and medical reports, in Chinese, and had them translated. Doctors here examined the documents. I had a feeling, a hopeful feeling, that we could manage whatever came our way.

When Charlie and I were in China, there was a period of adjustment. I was learning about all of the defenses and methods he had built up over the years to manage his different abilities.  He was learning about mine.

…..one stop in our afternoon consisted of going back to the welfare home and settling a few outstanding issues. We pulled up outside the gate of the welfare home and I sensed Charlie’s apprehension. Using our point and hand gesture language I assured him it was a short stop and he had nothing to worry about. Charlie saw the familiar guard at the gate of the orphanage, and was told by the man to be a good boy, and have a good life in California. We went on to the Admin. Offices. A few of his teachers, and admin staff members were there. We took some pictures, and made pleasantries with them.

As we were leaving the relief of the short visit was on his face.  I hope it will give him closure, and in the future will settle his mind. I asked him, through translation by our guide Elinor, if he felt there was a difference between the time he left the orphanage with me on the first day, and today. His reply was “on the first day I went and followed because I was told too. Today I WANT to go with you”.  This made me tear-up just a little. He added that he is both happy and sad to be leaving this home he has known for all his years. This is a very healthy way to feel and healthy to articulate. He is starting to feel safe with me and that is a very BIG start.

Charlie has Myelomeningocele. His level is S1 thru L 4&5. He had a de-tether operation in July of 2010. This had mixed results; in short it was a push. His cord wasn’t completely de-tethered but it did rise back up some. He does not have hydrocephalus and that’s a good thing. He walks but tires easily and has a wheelchair for distance. He wears AFO’s on both feet. He is scheduled for orthopedic surgery on both feet this December. His bowel and bladder are at times an issue but he has some sensation, and thankfully no kidney reflux.

My wife and I have learned a great deal in the short almost 2 years that Charlie has been with us.  It seems as though he has always been with us. He is our child and always has been. I asked the question at the beginning of this essay, and I had partially answered it when I was in China with Charlie.

…I have mixed feelings on leaving Tianjin. It’s Charlie’s birthplace, his world. Perhaps we will return someday.  I hope he will, but under totally different circumstances.

In the Buddhist faith one believes that you have lived on this earth before.  As you pass through each life experience you build upon your karma. The ultimate achievement is to gain enough wisdom through these life’s experiences to reach enlightenment. Perhaps Charlie was a part of one of my former lives’ or a part of my wife’s and it has taken 14 years for us to find him through the fog of time and distance. Maybe we are just meant to carry him part of the way to a further destination. We move on no matter what now and the hard part of the journey will start once we get home to Los Angeles.

Till then dear friends and family, please comment and see you in a week plus a few days............

We are still on that journey. My family is stronger from this experience. I wouldn’t say that it’s for everyone, but our answer to the question asked at the beginning of the journey was, “Because we can”. It’s not a flippant answer, it’s the only answer that we can truly offer you. It’s our answer that fits the question.

Be well…

The story of Charlie and Larry's family truly touches my heart, and I hope it touched yours too!