The Beacon 2019 | Issue 2 the beacon 2.2019 | Page 5

The Student Spotlight
going on, but we quickly placed him on the 2-3 year waiting list and took our first tour of the school. My heart and my head were in such
a blur. I remember two distinct things about our tour. First, that I cried the entire time. Bawled is probably more accurate. I was in denial
that our perfect, HEALTHY Matthew was now heading down the road of special needs. Secondly, I remember literally being held by the
loving staff while we watched children play in the gym. They explained that this was a place of hope and that no matter what we were
facing they could help us! We felt right at home and knew this would be the place for Matthew should he need it.
August 1st, 2013 was MRI day. Matthew was quickly checked in. The nurses cooed over him. Who wouldn’t? He was 4 months old and
wonderful! Because he was an infant, he had to be sedated for the procedure, and an hour or so later we were told everything went
smoothly. After the MRI, Matthew recovered and we asked the nurse for a copy of the results. She handed them to us on a disk and said
“We’ll be praying for you…” Odd. But nice. We headed home.
As Matthew and I napped, my husband popped the disk in to the computer to check things out. The official report was on there along
with pictures of his brain. He did his best to decipher the medical lingo, googling each word. Slowly, the diagnosis started to emerge:
Lissencephaly (meaning smooth brain). He woke me up and together we read. With each click our world unraveled more.
"We 'tried out'
several options and
finally decided on
Matthew. It means
"Gift from God" and
it seemed to fit him
perfectly."
Lissencephaly not only affected the shape of his brain, but everything that the brain does. We discovered what we could expect with this
condition: children rarely surpass a 2-3 month ability level, severe developmental and physical disabilities, non-verbal, eating problems,
vision impairment, seizures, and a life expectancy of 2-3 years. It felt like a bomb had just torn our world apart. The deep “mother’s
instinct” panic I had felt was justified. How did we just bring home a completely healthy child only to be told 4 months later that he was
going to die? Our pediatrician, in shock herself, called several hours later. She stayed on the phone with me as I cried and tried to make
sense of things.
The next few months were filled with doctor appointments and tests. We were told seizures would start at any point and on Thanksgiving
Day 2013 they did. We held him and cried as the seizures took over his little body. It was just another sign that things weren’t right and
that we would have to adjust the expectations for our family’s future. Accepting our new normal wasn’t going to be easy. All hope was not
lost though! Each month we would attend the class that the Little Light House hosts for all the waiting list families. This class provided an
opportunity to meet other families that had special needs children as well as interact with the staff. For a couple of hours each month, our
family was normal and Matthew was accepted and loved just the way he was. One day in late July 2015, we received the call we had waited
2 full years to get. Matthew had a spot at the Little Light House! We were ecstatic!
Matthew will turn 6 years old this month and is in his fourth year at the Little Light House. He has exceeded the doctor’s expectations and
we have enjoyed seeing him thrive. Matthew works hard each day. We have seen improvements in his neck control and communication
abilities. The Little Light House is such a blessing to him and our entire family. At school, Matthew isn’t viewed as disabled. Rather, they
see him as capable and celebrate each accomplishment, no matter how small. We will forever be grateful for our time at this school, the
love and compassion the teachers and staff have shown, and to the countless donors who have made it all possible. We couldn’t think of a
better place for our sweet boy.
4 | THE BEACON