Raising a child with Congenital Unilateral Perisylvian Syndrome, Polymicrogyria and Epilepsy
Friday, September 24, 2010
“Strength does not come from a physical capacity. It comes from an indomitable will.” ~ Ghandi
I thought the best way to start my new blog was by telling Jackson's story. Jackson attends the Spokane Guild School and Neuromuscular Center in Spokane, Washington. He was featured on the cover of their quarterly newsletter at the beginning of 2010. This is the article I wrote for the newsletter, which essentially tells Jackson's story:
Jackson Edward Darwin Klim was born on April 24, 2008, weighing in at 8 pounds, 1 ounce, 20 ¾ inches long, and with an Apgar score of 8.We had ourselves a son!After a completely normal and healthy pregnancy, our baby boy was delivered without complications and was very healthy and handsome.We brought him home and began dreaming of the days when he would say his first words, take his first steps, play in dirt, build a fort, ride a bike, start kindergarten, graduate from high school, and go off to college.
Although Jackson was born a fairly normal sized baby he wasn’t that way for long.He was an eater and that is all he ever wanted to do.By three months he was 17 pounds, and by 9 months he was 32 pounds.He was quite the chunky monkey.We always knew he was behind developmentally, he wasn’t hitting those milestones, but our pediatrician reassured us that this was normal for larger babies.By the time he was 10 months old, things just didn’t seem right.He was barely rolling over, he kept his left hand in a fist, and he didn’t look at us or respond to his name.After sharing our concerns with our pediatrician he agreed something just wasn’t right.He suggested we first take Jackson to see an eye doctor.If his eyesight was alright then we would have an MRI done on his brain.We got right in to see an eye doctor and Jackson was diagnosed with astigmatism and far sighted-ness.We ordered his glasses and had high hopes that he would soon catch up developmentally.Unfortunately it took 6 weeks to get his glasses and once we had them we had to go through a month or so of civil war in our home trying to keep the glasses on.Finally with the help of a bungee strap Jackson gave up trying to take his glasses off.While progress with his eyesight was slow, he was, and continues to, make it.
While he was adjusting to the glasses, and we were waiting to see if it would help him catch up developmentally, we contacted the Spokane Public Health District and had a developmental specialist assess him.She found that at 14 months he was at the level of a 6-8 month old.She suggested we start Jackson in therapy.Meanwhile, Jackson began having startle spells.He would throw up his hands and arms in surprise as if he was scared.Afterwards he would get very tired and fall asleep.We knew something just wasn’t right.We took Jackson to the pediatrician who ordered the MRI on his brain.The day after the MRI we were called to the pediatrician’s office and tried hard to pay attention to the life altering news he was delivering.Jackson was diagnosed with Congential Unilateral Perisylvian Syndrome with Polymicrogyria.Basically one side of his brain, in his case the right side, did not fully develop.Jackson’s condition is extremely rare and there isn’t a lot of information or research about it.He also has epilepsy, and his seizures are proving difficult to control.
What Jackson will or won’t be able to do in life is a huge question mark.He may walk, he may not.He may talk, he may not.He will have some form of retardation but we aren’t sure to what degree.That’s probably the hardest part for us.When your child is diagnosed you want to know how it will affect his quality of life, not knowing is difficult and frustrating.We do know that Jackson will continue to develop, just at a much slower pace than other kids his age.After his assessment and diagnosis, we found ourselves touring the GuildSchool and were drawn to the welcoming and comforting environment.Jackson quickly began physical, occupational, and speech therapy along with seeing a special education teacher.He also receives aquatic therapy (he loves water!) once a week at St. Lukes.He is now 20 months old and has been receiving therapy for 5 months.He is making progress, albeit small and random.But it is exciting for us to see even the smallest progress.
We know Jackson is faced with some huge challenges and it is not the road we wanted for him.We spent a few weeks grieving for our little boy, and we still have our tough days, but we realize it doesn’t help us or Jackson.So we just move on, day by day, loving our little boy, getting him the best services possible (Thank You Guild School!) and celebrating the littlest progress.Brain damage, neurology, seizures, special needs, therapy, and developmental delays are not words we imagined would become part of our lives when we were pregnant.But they are nonetheless here and encompass our lives.We’re sure there are more terms in our future, but what we are beginning to understand is that the label "special needs" mostly just means that these children offer us something a little more "special" than other children.And while it is hard to face sometimes, our love for our son is much more overwhelming.