Fall, 2005

CROSS YOUR FINGERS AND PRAY

Paul’s Story

              We all have had to make tough decisions about what is best for our kids.  Our decision to adopt a baby was our first of many very difficult decisions in regard to our son.

              Our son, Paul, was abandoned at the hospital because he was “not perfect”.   He was born with Hydrocephalus.  We had been waiting for such a long time to have a child of our own, but did we want to begin our family with the uncertainty of what Paul’s life would be.  The doctors gave us percentages like 65% normal, 15% above normal, 15% below normal, 5% retarded.  Al and I talked it over and decided with any child you don’t have much better odds- so we crossed our fingers, prayed, and decided to bring Paul into our family as our son.

              As it turned out, it was a journey we were not prepared for, but wouldn’t change.  Paul had a difficult 1st year with 5 shunt revisions in his first 8 months, along with meningitis, a severe shunt infection, and 2 hernia surgeries.  But, we were certain that this baby was meant to be with us.  Paul has had 11 shunts to date.

              As Paul grew, he thrilled and filled our lives and hearts with such love and pride.  He was the happiest, easy going baby and toddler.  He was very bright, then, at 26 months, Paul had his first seizure which lasted 20 minutes or so.  We were taken to Children’s Hospital by ambulance and were told he had epilepsy.  We were shocked and devastated!  The seizures continued and the lengths became longer, some as long as 3 hours.  We visited Dr’s and tried one medicine after another to try and control the seizures.  They continued to get worse and began affecting his life significantly.  His speech began regressing, and he began to have trouble with mobility. It was very hard to watch this, we felt so helpless.

              We were sent to the epilepsy center at Harborview Hospital to see if Paul would qualify for a surgical procedure to remove the focal point of the seizures.  What a tough decision we were faced with.  This surgery meant they would be removing part of Paul’s brain.  How do you make a decision that could possibly disable your child even more that he already was?  We wrote a letter to an epilepsy magazine, asking other parents who had faced this surgery for advice.  What a help that was!!  They gave us great insight, information and support.  Again, we decided we had no choice but to give the surgery a try.  Again, we crossed our fingers and prayed and at age 6, Paul had the surgery.  Our prayers were answered!!  Paul has been seizure free since Aug. 1999.  He still takes seizure meds, but no more seizures!!

              Paul has grown into a great young man.  He is now 18 yrs old.  He had been enrolled in the local school district until Jan 2005.  Al and I have tried to be the advocate for Paul in all aspects of his life.  We worked very hard with Dr.’s, Psychologists, Psychiatrists, and other specialists to help him with his anxiety and worry.  We have tried to be involved in his education and tried to work with the schools to make sure he was included as part of his class and his peers. 

              The grade school years we felt were successful, but when he transferred to middle/high school, we felt that they were not able to provide what he needed to be included and to be successful.  We looked at our options over the years, but we had a tough time finding something that offered much different, and/or some place that we felt comfortable sending him to.

Last fall, when we met the transition teacher at AHS, I was so impressed after our first meeting that I was crying by the end of our visit.  We finally found someone who truly understood what having a disability is all about. He believed they should be included in all aspects of the school.  He said “these students with disabilities were the teachers in our community, not the other way around.”  He felt that the student needs to be the focus of the program and that we needed to remember what is best for him, not the staff or parents.  I thought to myself, “my goodness”, this is what we’ve been looking for.

              Al and I talked it over and decided to follow up on the program at the high school.  Paul and I went to visit after Christmas break.  I was impressed and comfortable with what was going on.  More importantly, Paul was feeling comfortable in these surroundings.  I had thought I may be going back to high school for a while, helping Paul with the transition, but he seemed to be doing very well.  So….we crossed our fingers and prayed that this would be the right decision again.  When people started commenting on the change they could see in Paul, he was more mature, more calmed, less stressed, we felt we had done the right thing.

              Al and I have seen the changes as well.  It has been exciting to watch this change take place.  He is now given the opportunity to be the decision maker.  He is given choices about how is day is planned.  He is being included with his peers and given more responsibility.  These are the things we were looking for before.

 It has not always been a smooth path to put this in place and at times we wonder if we have made the right choice, and are somewhat apprehensive about when or what the next occasion will be when we will have to cross our fingers and pray for the answer, but so far it has worked in our favor.