I watch my 11 year old son swim with his age group in swimming and my heart swells until it feels like it will burst. The parents around me are reading, chatting or watching their own children practice. However, to me, watching Joshua swim and blend in with everyone else on the team is akin to being the mother of an Olympian swimmer watching her child compete with the best. You see, Joshua was born with a congenital abnormality in his brain.
As a school social worker in Illinois, I worked with children with disabilities. I never dreamed that any of my children would be affected. I had my Master's Degree in Social Work and my husband had his PhD in Electrical Engineering. I envisioned perfectly healthy children in the not too distant future. I was 27 and I couldn't wait to begin raising a family.
In 1992, I gave birth to my first, a wonderful little girl who was the spitting image of her Daddy. In 1994, my second child was born; a son. Blond haired, blue-eyed, he was the image of my side of the family. Then, in 1996, my third child was born. He had the physical features of his sister combined with the fair coloring of his brother. It was a happy, yet busy time. I was living my dream and cultivating my young children's minds by providing them with a variety of stimulating educational opportunities, play groups and even sports activities.
Joshua reached his initial developmental milestones, such as rolling over, sitting independently and babbling as quickly as my other two children. When he turned six months things began to change like a light snow builds into a blizzard. It started with an infection in Joshua's little toe on his right foot. We were told he had a little infection due to an ingrown toenail that would get better on antibiotics. He didn't get better. He started running fevers, he stopped developing language and even after fifteen months he was unable to walk.
After a year of agonizing over what was wrong with Joshua, through a series of medical tests we found that he had an arachnoid cyst in next to the right temporal lobe in his brain, as well as a problem with his immune system. Apparently, when he was in-utero, his arachnoid membranes (the lining of the brain that creates cerebral spinal fluid or CSF) split into two near his right temporal lobe and then filled up like a balloon with CSF fluid, creating pressure in his brain. At one point we were told he didn't have a right temporal lobe as the cyst compressed it!
Although family life had already become filled with tension, things became worse. Life for everybody in our family became an endless parade of doctor's appointments, hospitalizations and emergency room visits as Joshua developed seizures and sometimes after a seizure,temporary paralysis. My two older children had to grow up quickly. They were frequently dropped off with friends, family or just picked up from school to accompany us on our medical emergencies. Outside activities came to a standstill. Luckily our family pediatrician was a strong Christian and really helped us through the medical mazes and was an amazing support. However, our search for answers continued for four years and in the midst of this craziness, we had our fourth child, another son.
When my fourth child was born, I was pretty sure I would have a nervous breakdown. The pregnancy had been unplanned and I was scared. However, Zachary was an easygoing, flexible baby. He hung out at doctor's visits, occupational therapy, physical therapy and teacher visits. He and Joshua seemed to develop at the same rate. By the time Zachary was able to walk and talk, Joshua was reaching the same milestones and they developed a strong friendship. To this day they call each other "best buddy."
As Joshua grew older, the doctors were better able to diagnose him. We moved from California to Loveland, Colorado and The Children's Hospital in Denver had a neurosurgeon who was able to figure out the elusive problem that had interfered with all of Joshua's treatments. Dr. Handler identified that Joshua had hydrocephalus as well as an arachnoid cyst. He replaced the single shunt in Joshua's arachnoid cyst with a shunt with two ports (cysto-ventriculo-peritoneal shunt.) Finally, at four years of age, Joshua began to take off and develop both intellectually and physically.
Now, seven years later, I watch my son blend in with everyone else. What used to seem like a tragedy has turned into a blessing. My husband and I feel like, without us knowing, God had prepared us for Joshua. My years as a social worker enabled me to to advocate for my son, not only medically, but educationally as well. With the training and work experience I had received I was able to make my way through the mazes of doctors, therapists and teachers and keep sight of our ultimate end goal, to help Joshua live a quality life. Ironically, though arachnoid cysts are recognized as rare disorders, we have met families of at least three other children with arachnoid cysts and have been able to offer them our knowledge, experience and support.
The life I imagined at 27 is certainly not the life I have lived these past 17 years. However, our experiences have provided our family with a great appreciation for the little things in life. My husband and I actually smile when Joshua is arguing with his siblings, because he can. And in the end, we have something better than a perfect family, we have a family that, although we have our share of arguments, loves and appreciates each other. We know that in spite of bad things that happen to us in life we can get through anything together...as dealing with a disability has taught us.
No comments:
Post a Comment