This blog is about my son, Thomas Marshall, and his story is our story. He is an amazing child and I think his story needs to be shared.
My husband and I were elated when our son, Thomas, was born. He is our first and only child. But while we were still in the hospital we knew something was different by the way the staff was treating us. And before long we had a bunch of doctors in our room all trying to examine Tom. At birth the doctors noted that Tom has Microcephaly (a smaller than normal head size.) Microcephaly can just mean your head will be smaller than everyone else in your class or it can be associated with mental retardation and other health concerns. At this point I can tell you that I do not think Thomas has any signs of mental retardation and neither do any of his therapists. And he has five therapists and has seen a troupe of specialists.
When our pediatrician visited us in the hospital she noted that Thomas did not have a red light reflex when she shined a light into his eye. You know the red eye that shows up in pictures? That is a reflection of the vascularization in the back of your eye. If you don’t have that it spells trouble.
A developmental specialist from the NICU examined him and told us he had no visual response. We were quite simply crushed. However, during her exam she said, “Mom, Please call out to Thomas.” So I did and he practically lunged as he turned to the sound of my voice. This was an indication that our Thomas was in there and he knew what was going on. After the parade of smiling, nervous doctors had thoroughly exhausted us, Thomas himself gave us hope in that small gesture.
Later we stood outside of my hospital room and listened to Thomas scream while his eyes were examined by Pediatric Ophthalmologic fellows. That is the most helpless feeling. As a new parent, it was just anguish to hear the baby I had waited so long for scream like that, and be powerless to help him. After this heartrending eye examination was over, we were given an appointment at the Eye Center at the Children’s Hospital of Pittsburgh. We didn’t even get to go home from the hospital with our new baby. It was straight to another hospital.
At the eye center, Tom had an examination and an ultrasound of his eyes. Dr. Leann Lope, his Pediatric Ophthalmologist informed us that she believed that Thomas had detached retinas and told us we needed to see a retinal surgeon ASAP.
So when Thomas was five-days-old we took him to a retinal surgeon in Pittsburgh. We were told that Thomas has bilateral (both eyes) detached retinas and would most likely be blind. This doctor gave us the best possible gift when he told us we should go to see Dr. Capone, an expert in the field of infant retinal surgery. We waited on pins and needles for him to say where this surgeon was located. When he said Royal Oak Michigan I was flooded with hope and relief. This was possible! My best friend lives just outside of Detroit and Royal Oak is also a suburb. Coincidences like this don’t just happen.
We were very lucky that my friend and her fiance opened their home to us. Can you imagine that call? Can I come stay with you and your fiance and, oh yeah, I’m bringing my my husband and my two-week-old infant?
We stayed with them six times during Thomas’ first eight months. Through five vitrectomy surgeries to reattach the retinas and once where they did not end up doing a surgery. We have been extraordinarily blessed because Tom has almost full retinal attachment in his right eye and a small attachment in his left eye. By the spring of 2010, we could see the red light reflex in his eye in pictures. It was so exciting!
Now Thomas’ eyes never formed normally so he will never see like the average person. But it is astonishing to come from no visual response to having some sight. And yes, I consider the ability to see light some sight. It can be incredibly helpful for moving about. Every time Thomas can reach out and grasp an object by sight it is a miracle. And I mean MIRACLE. Every time he tries to follow an object it is a complete victory because he is using the vision he has in a way that is meaningful for him.
Now don’t get me wrong, my son is still blind but he is learning to use the bit of vision he has to make his life easier. Every day we are teaching him the blindness skills he needs to survive and thrive in a sighted world.
My job is to get Thomas what he needs to be the amazing man I know he is. I created this blog to share that journey with you.
I am re-reading this several years later. Tommy is four years old and a happy preschooler now. He is brave and confident. He can count to 15 and knows the alphabet. He is learning Braille. Tom was about a year and a half old when I began writing this blog. His health was still very delicate because of his food refusal issues. His milestones were quite delayed in some areas and we were very worried.
I wish I could give 2011 Jessica a hug and let her know it would get better, much better. It took a lot of work and a lot of therapy to get where we are. The journey made us all strong. It made us who we are today. I continue to blog because Tommy is going to be a happy little boy who just happens to be blind. He cannot follow objects like he briefly seemed to after his initial surgeries. Tom developed Glaucoma which further damaged his eyes.
My perspectives on blindness have changed over time. Tommy has no useful vision and he will be a Braille learner. That honestly scared me so much when we learned that Tommy would be severely visually impaired. I didn’t know how to raise a blind child. But that’s the difference. I don’t have a blind child. I have a Tommy and I know how to raise him. We are learning together! I hope you join us in this adventure.