I have a son named Joseph. Joseph is 10 years old. He was struggling to live before he was even born. I think that Joseph has always innately known that struggle is a part of life. That it is the struggle that builds the character that gives us the strength to go on.
Joseph came into this world via an emergency C-section when it was discovered that he was dying. I saw him for only a brief moment before he was whisked away to the NICU. I then descended into a drug-induced sleep. When I awoke, I could see that my husband had been crying. It was then that I learned that, while I lay sleeping, my son had been dying, organ by organ. But Joseph was a fighter and he, along with the talented medical personnel in the NICU, decided that his story would not end in the NICU on that day. Joseph came home with my husband and myself on his fifteenth day of life.
Joseph’s development was deemed to be slower than other children his age, so he was sent to see a neurologist when he was three months old. That doctor, after examining Joseph for only ten minutes, told us, “Get rid of him before you get attached. You’re young. You can start over. Joseph will never walk, talk or show emotion.” The only problem here was that we were already “attached.” We had started to fall in love with Joseph the second that we knew that he was going to be a part of our lives. We vowed that, with Joseph’s help, we would prove this doctor wrong.
We showered Joseph with love from the very beginning. I held him when he cried, even after being told by numerous people that this would spoil him. I think that, by answering his cries, I helped to build his confidence that he was loved and that he would be kept safe. I kissed his little face all the time and must have told him a hundred times a day how much I loved him. I would kiss his forehead when I gave him his bottle and he grew to believe that this was a part of the feeding experience because, if I was distracted and was not kissing his forehead, he would extend his head towards me as if saying, “Mom, did you forget? This is how this is done.”
Joseph was seen by a group of psychologists when he was three years old, after being diagnosed with autism. We were told that he did not know that he was different. This was because we did not see him as being different, at least not in the way that most people did. We saw him as a child, an individual, full of possibilities.
Joseph was born with a seizure disorder. He started having grand mal seizures when he was nine months old. He would have seizures weekly, sometimes daily, which could last anywhere from 10 to 30 minutes. When he would have a seizure, after performing the medical procedures that we had been taught, I would kiss his little face, tell him over and over again that I loved him, and beg him to come back to me. When he finally came out of the seizure he would give me a weak laugh and “pat” me. I know that his little body was hurting from head to toe, but his first conscious thought was to comfort me.
He had a particularly bad seizure on October 15, 2001 between 12 noon and 12:30 p.m. He had been sick for five days with a high fever. His temperature had been normal that day, so we had begun to back off on Motrin and Tylenol. He began to shake somewhat violently around noon, so I took his temperature. It was 103 degrees, up from normal about one-half hour earlier. I picked him up, ran to the bathroom and ran tepid water in the bathtub to cool his body. He was crying and shaking, so I was hugging him and talking to him as I splashed water over his little body. His eyes then rolled up in his head and he started convulsing. I grabbed him and ran with him to get his oxygen and Diastat to stop the seizure. After giving him the medication and oxygen, I started hitting him on his back. He didn’t respond though and proceeded to become more and more blue until his lips and nailbeds were black. It was then that I could feel myself beginning to panic. I found MYSELF unable to breathe as fear constricted my throat. I picked up the phone and called 911 while continuing to work on him. He then went still. I put my head to his chest, but could not hear a heartbeat. I put my face to his mouth and could not feel his breath. I tried to find a pulse and could not. I screamed, “He’s not breathing”, and then “Please, God, no.” He then coughed and came back to me. He did not give me a weak laugh or “pat” me this time. THe ambulance arrived shortly after he came out of the seizure and he was taken to the hospital.
I knew that, as Joseph got older, people’s perception of him would change. I saw the looks on people’s faces as he ran towards them. He looked uncoordinated, but I wonder if they knew how hard he tried. He had been through hundreds of hours of therapy to walk/run as well as he did. I saw the looks on people’s faces when he tried to speak, but I wonder if they knew how hard he tried. He had been through hundreds of hours of therapy to speak the few words that he did. He has had to try so much harder to do everything that most children do with ease, but has never given up. I saw the joy in his eyes as he saw another little person that he might play with. I also saw the hurt in his eyes as these children were herded away from him by their parents.
Life with Joseph has not been easy, but I would not trade Joseph for the most normal and healthy child in the world, although I keep praying that God will grant Joseph those particular miracles. When I heard about a child being abused in any way or beaten to death, I am thankful that God entrusted my husband and myself with this most precious of souls and not to someone who would have abused him, ignored him, not loved him, or thrown him away, as we had been advised to do. I shudder to think of what Joseph might have become had we tossed him aside. That doctor might have taken away Joseph’s smile.
If it is true what the Bible says that each of us sit down and plan each day of our lives with God, then Joseph knew that he would be facing not only very serious medical problems, but also a society which he, for the most part, would be shunned by and, yet, he still decided to come here. What courage that must take to throw oneself willingly into a seemingly unwinnable battle. I believe that he felt that he could make a difference.
He has not only made a monumental difference in my husband’s and my life, but has also had an impact on the lives of many others. He has played a part in keeping families together and has brought family members back together. He has contributed to helping others to find the courage to face unpleasant situations that they might otherwise have had trouble facing. It is hard to see the courage that Joseph exudes and not be changed by it forever. There have been a great number of times when we have been approached by strangers, or people who have previously met Joseph, who will hug Joseph and say things like, “I love this child” or “Don’t give up on him.”
Joseph is made of the stuff that heroes are made of, the stuff that gives us the courage to face what seem to be insurmountable situations. I know that, having known Joseph, I have known greatness. A greatness of the soul and spirit that I might have otherwise never been witness to. He has made my husband and myself better, stronger and more kind human beings.
My husband and I love and believe in Joseph. He has a very strong spirit and is a very loving and happy child. This little boy has taught us much in the short time that we have had him. He has taught us how to be strong, maybe even brave. He has taught us to stand up and fight for ourselves and for him and to do what is right and not necessarily popular. He has taught us to appreciate the little things in life that most people take for granted. He has taught us that life gives us no guarantees. He has taught us to love like there is no tomorrow. He has been our greatest life lesson.
I think that people need to understand that none of us are immune from having something that is considered “life altering” happen to any one of us. Anytime, anywhere, something could happen that could make any of us significantly, irrevocably different than we were before. We, therefore, need to treat those people who have experienced “life altering” events as we would like to be treated were the shoe on the other foot.
There was recently a movie, “She’s the Man,” in which it was said, “Be not afraid of greatness. Some are born great, some achieve greatness and some have greatness thrust upon them.” I believe that Joseph was born great, a soul hand-picked by God for a very important mission.
