We were enroute to Schneider’s Childrens’ Hospital, my wife and son in the ambulance and I by car. I was feeling a bit hungry so I decided to stop at Wendy’s before heading there. I had my usual # 1 with cheese and ate quickly knowing I had to get there. I knew my wife would be expecting me soon after they set Matthew up in a room. I wanted to speak to Matthew’s doctor to ask him what we can do to help him and keep him safe during the period he is having a seizure. The year was 2005 and at this point in time I have yet to see him have a seizure as this was his second that we were aware of. I know it would be difficult to see him going through it and naturally I would react to protect him. I was concerned for him and wondered why he had such obstacles to face. I sometimes feel that there are reasons for this and not really sure why but I knew my son was very couragious and such a wonderful child. As I left Wendy’s to go to see my wife and son I wanted to make sure I was addressing all my concerns with his doctor and staff. We needed to do everything possible to help him and wondered how children are able to experience a normal life with these unexpected occurences. I am very worried for my son because first of all I have no real understanding as to why he has seizures. Secondly, since Matthew is autistic I also wanted to explore further the connection between autism and seizures. Based on our last visit with his doctor we learned that many autistic children also experience seizures. To me this whole diagnoses of autism is a mystery and I am not even sure how really to explain what autism is. A seizure I can understand and explain because it is a physical thing and it affects the body if it is a grand mal seizure. Autism to me seems more like a severe form of shyness. I can somewhat relate because I suffered from extreme bouts of shyness throughout my life and felt a great deal of anxiety in social situations. So I really could not make the distinction between shyness and asperger’s syndrome which is Matthew’s diagnosis, since there seems to be some similarities.
As I arrived at the hospital I parked my car and headed over to emergency to be with my son. My wife was by his side and we were very concerned for him as we were learning each day of his medical condition and trying to provide him with the best medical care. As a parent of a young child it is very emotional when your child needs emergency care. I was very much looking forward to meeting his doctor so we could find out what was causing these seizures and what we needed to do to control them and keep him safe from his surroundings in the event he continually has them. My biggest fear is that he has a seizure and no one is around to see it or help him. It is for that reason that we have a very difficult time having him sleep alone.
When Matthew’s doctor read the report from Long Beach Hospital’s staff doctor on our son’s condition upon being admitted and his recomendation he spoke to us and told us that we would need to have Matthew stay the next couple of nights so they could observe him day and night and see how he reacts to the medication that would help in controlling the epilepsy and monitor him for any additional seizures that may occur. The doctor also suggested that Maria stay with him overnight and I agreed that was a good idea and Maria expressed that she would wish to stay anyway.
They then proceeded to find a room for Matthew to stay for the next 2-3 days and I felt this was important as we were traveling a road with some uncertainties but were looking for answers and hopefully this would help provide some of those answers.
Matthew was sharing a room with a little girl who also suffered from a seizure disorder but her seizures came with more frequency and she was on a much stronger dose of depacote. She was so sweet and she enjoyed having Matthew as her roommate. We talked with her parents and felt we had a lot in common and were greatful to find someone else dealing with what we are. I just felt so sad that she was having seizures just about everyday and I just could not imagine what she and her parents were going through. We also felt their pain and offered our love and support and held out hope that their precious little girl would be ok.
After our visits at the hospital with Matthew I remember seeing kids of differing medical diagnoses at the hospital and I remember being touched by a young child being treated for cancer. It was so sad to see this cute, lovable little girl being treated for leukemia. I remember she wore a hat to cover her head since she recently lost her hair from her chemotherapy treatments. I had the priviledge of meeting her and her parents and I just felt so inspired by her innocence and her strength and knew how much her parents loved her and all I could do was to hug them and wish them my heartfelt best wishes. It broke my heart knowing how sick this cute little girl was and I realized how fragile life is and that there are no guarantees. The parents were seeking a donor so she could have a bone marrow transplant. It really tugged at my heart. I said a prayer for that little girl and her family as well as the little girl with the daily seizures.
I gave my wife and son a big kiss goodnight knowing I would see them in the morning and told Maria to protect Matthew and hold him tight.
I left for home and felt sad leaving my wife and son behind but knew we needed to find answers and needed to help our son. I also thought of those other families and their beautiful children and just felt sometimes Life seems unfair when young children have to have such struggles.