Once a Mighty Ship

Rodney Rowen, a software engineer, lives in Redmond, Washington with his wife, Pat, and 5 1/2 year old son, Geoff, and his 1 1/2 year old daughter, Katie. Both Geoff and Katie have unbalanced translocations on chromosomes 11 and 13. Currently, there is only one other known case of Geoffrey’s syndrome, no known others of Katie’s. Rodney is an active member of the Fathers Network in Bellevue, and in his "spare" time plays volleyball, basketball, and enjoys doing woodworking.






  Once a Mighty Ship
by Rodney Rowen

Looking back at the birth of my son, I think that I envisioned a mighty sailing ship being launched into the sea of life. My son would proudly command this sleek, beautiful vessel, forged of my own hopes and dreams; deftly trimming the huge white sails that would catch the winds of opportunity. We would journey together for a time while I showed him places he could go and help him when the need arose. Eventually, I would leave the ship and let him sail alone.

Two years after my son was born, my wife and I noticed that he was not doing things that most kids his age were doing. The doctors started running tests, and he began physical, occupational and speech therapies. At first, I wanted to believe that they were all wrong since I could still see my son on his mighty ship. Later, I realized the doctors were right, and there was something wrong.

A storm of emotions raged within me, engulfing my son’s ship. Rain pounded it from the terrible sadness I felt. Thunder clapped in anger about having an abnormal child. Fierce winds of grief drove my son’s mighty ship, crushing it upon the rocks. Worst of all, I "lost" the son I both wanted and expected.

Over time, the storm lessened, and the clouds cleared. I saw the ship had survived, but now it had been transformed from a sleek, racing machine that easily sliced through the water to a barge laboriously slogging through tough currents. The once mighty sails had been replaced with small tattered ones, and the hull gaped with large holes. I marveled that the ship could even float.

My son still proudly stands at the helm, unaware anything is wrong. I wonder if he will ever understand that his ship doesn’t look like the others. As I look at the ship now, I see many other people at work. Some are patching the massive holes which everyone knows can never be fully repaired. Other people are just painting small spots or offering encouragement whenever they can. Still others think all this work is excessive. We constantly battle government agencies, insurance companies, and schools to make sure our son gets what he needs and deserves. My wife and I find ourselves acting as supervisors trying to make sure everyone is doing what is best for him. People suggest we try "this" and "that," but there is only so much time and money. We constantly judge which things help, which do not, and if it is time to try another "something new." It is difficult, because everything seems to help a little, but nothing helps a lot. Hope comes and goes, as do feelings of guilt for not doing more.

I realize that my job as guide and teacher is going to be much more difficult. Over and over, I teach him to do things that other kids pick up naturally. I feel such despair when I see other children half his age doing things that I only hope he will do some day. But, there IS hope, since improvement does happen, however slowly. I still have the same pride that all parents feel when their child finally accomplishes a task which they haven’t been able to do before.

Lately, I have begun to wonder what the future will hold for my son, and there are many questions. Will he live independently? Will he have a job? Will he have any friends? It becomes clear that I may never be able to let my son sail his shop alone. In horror, I realize I may even die before my son completes his journey, and then I start to worry about the special wills and trusts which need to be created. I am haunted wondering who will take care of my son when I am unable. I find it difficult to even ask others to do this job let alone imagining anyone accepting it. Sometimes it seems so overwhelming, all these extra things I need to do.

Then I look at my son, and I see a little boy who seems so happy and content. He does not understand that he is different, and for that I believe he is lucky. I think I am lucky, too, since he is teaching me some important lessons. I believe all children are born with a kind of innocence that is quickly shattered as they grow and learn about "life." The life my son faces becomes a kind of blessing, since he will radiate that child-like innocence for a much longer period of time. In many ways, I also believe he exemplifies how everyone in the world should act. When he is happy, he smiles or laughs; when he is sad, he cries. He does not understand the societal rules which mask so many of our thoughts and feelings, nor does he exhibit any trace of the greed, dishonesty, racism, or bitterness so prevalent in today’s world.

My son also gives to the world without expecting anything in return. While walking with him in the shopping mall, I have watched him look at people, make eye contact, and cheerfully say "Hi." Invariably, the person smiles back, and he has, for the moment at least, given them a small gift of kindness. He has also helped me question what is important in life. Is it really important what school a person attends, what job they have or how much money they make? I am beginning to realize that the most important things in life have more to do with just enjoying life.

Having a child with special needs is a strange gift. It is not one I would ever wish on anyone, but would never give up having received it. Taken individually, the additional challenges seem small, but the collective whole seems immense at times. The storms of rage and emotion still blow through, but now I wait to see where we will end up, knowing that my son’s ship will indeed survive, and that we will journey to some unanticipated but exciting ports.

Rodney Rowen, a software engineer, lives in Redmond, Washington with his wife, Pat, and 5 1/2 year old son, Geoff, and his 1 1/2 year old daughter, Katie. Both Geoff and Katie have unbalanced translocations on chromosomes 11 and 13. Currently, there is only one other known case of Geoffrey’s syndrome, no known others of Katie’s. Rodney is an active member of the Fathers Network in Bellevue, and in his "spare" time plays volleyball, basketball, and enjoys doing woodworking.

This article was originally published in "Fathers Voices," Exceptional Parent magazine, May, 1997 and "Connections," Washington State Fathers Network Newsletter, Spring, 1997 (2:3).