TJ's Story

written by BVCC member, Susan Roberts, TJ's mom 

 

The word polymicrogyria first entered our family’s vocabulary on June 28th, 2010 when our son TJ was 6 months old.  We had begun searching for an answer 2 months earlier as to why TJ wasn’t reaching his milestones.  His hands were constantly clenched, and he wasn’t rolling, babbling or reaching out.  An abnormal EEG led to an MRI which gave us the news.  When we received that phone call his pediatrician couldn’t give us any information besides the name of the brain malformation.  He had never even heard of it!  And so our journey with polymicrogyria began.  Now, hardly a week goes by when that word doesn’t escape my lips in a conversation with a doctor, a therapist, a family member, a friend or even a stranger. 

 

Our amazing son is now 2 ½ years old, and he can melt a person’s heart with his smile and laughter.  His official diagnoses are spastic quad cerebral palsy, epilepsy and microcephaly with the underlying cause being bilateral generalized PMG.  “Team TJ” has grown tremendously in the past 2 years as we seek out the best treatments and therapies for him.  We currently see a developmental pediatrician, a neurologist, and an orthopedic surgeon.  His therapy team includes a physical, occupational and speech therapist who work with him for 3 hours a week in each area of need.  We also recently began ABM therapy and hope that this will help him learn how to move his body more effectively.  TJ attends a developmental preschool from 7:45-2:45 each day where he learns through exploration and socialization with other children.  He wears ankle/foot orthotics, Joe Cool hand splints and uses a stander and a gait trainer.  We are anxiously awaiting the arrival of his first wheelchair too.  His tonic clonic seizures have been controlled by Keppra since 6 months of age with no side effects and he takes Prevacid to help with his reflux.  We recently added Clonazepam at bedtime to help control his irregular brain spikes which increase during sleep.  

 

 When I look at my son, I see a boy full of fight.  He wants to do so much and that desire drives him to learn how to control his body enough to accomplish his goals. He is 100% G tube fed, immobile and nonverbal, but is very cognitively aware.  We see his brilliance shine every day!  TJ is learning to communicate with us by using an IPad app called My First AAC.  He also uses communication switches to make choices of toys and activities at school.  Unlocking his ability to “talk” to us has been a primary focus for our family.  We feel this is the key to giving him the highest quality of life for however long God wants him to be with us.  

For those of you on this website looking for help because someone you know is affected by PMG I will share what I have learned through my own experience.  First, don’t believe everything you read on the Internet.  Each PMG child is a unique gift and comes in a different package.  According to my initial research done after hanging up the phone on June 28th, 2010 my TJ shouldn’t be with me today, much less reaching out to pull my hair while laughing or playing games on the IPad.  Looking back, I am glad that I closed my laptop that day and told myself that I would do whatever I could to give him a good life.  Because of this promise to him, my second piece of advice is to act early and to push for what you want.  Early intervention and continued therapy are vitally important!  Research what your state offers and take advantage of all of it.  Apply for any assistance that you can even if you think you might not qualify.  And apply as quickly as you can because many waivers have waiting lists a decade long.  Even if you think you don’t need it now, down the road it may be your lifesaver.  And lastly, take it day by day.  There are good days and there are really bad days.  There are days of extreme happiness and days of despair.  If you are a parent, learn to ask for help when you need it and be honest to those around you as to how you are doing.  If you are a family member or friend, that “I’m fine” answer might not always be true. Sometimes just reminding them that you are there is enough.  

I know that TJ is my “forever boy”.  Our family is dedicated to keeping him in our care for however long we are able to do so.  I won’t lie.   It is exhausting physically and emotionally at times.  I went through times of grief and depression where I thought that I couldn’t do this, and that God’s plan for our family was unfair.  But as I watch his face light up when he sees his sister, hear him laugh at his daddy being silly, or listen to squeals of delight when I rescue him from his bed, I know in my heart that I was chosen to raise him for a reason.  I am his strength. I am his advocate.  I am his voice.  I am his mom.