Calvin is the youngest of our four children and has special needs. The reason we like to share his story is not because he is any more or less special than our other children but because it is an exceptional story. We share Calvin’s story in order to create an understanding for the unique challenges he (and we as an entire family) face in living life full of extraordinary needs. We share it not to trophy our faith but rather to showcase the Lord God, the giver of our Faith, as He constantly supplies for our every need. It is in Christ that we live, move, breath, hope, and can face the next day.
Darryl and I left for Cambodia in 2005 to serve at an international school in Phnom Penh. We went with the organization Asian Hope and joined the Mission to the World Team in church planting work in rural areas. Our family grew quickly and in 2009 we were expecting our fourth child, Calvin.
I left for Thailand when I was 38 weeks pregnant. Cambodia did not have facilities and Bangkok was the closest urban area that did. When I met with Dr. Sankiat in Bangkok he was excited to show me his new big screen on the wall and asked me if I wanted to do an ultrasound so he could showcase it. I’d already had a 20 week ultrasound and everything was looking good but any look at your baby is always exciting so I agreed.
I’ve heard other stories about the “moment” but I never could have been prepared for mine. He tried for a very long time to measure and remeasure and finally told me something was very wrong with the baby’s head, it was much too small. After various tests and sleepless nights Calvin decided to arrive right on time, on his due date of November 24, 2009. We were nervous, devastated, hopeful, and overwhelmed as we headed into the delivery room.
Calvin was born wailing and beautiful. Darryl was sure he was fine, and it did indeed seem so, his apgar was 9 out of 10 and he acted just like a typical baby even though he had a much smaller head (microcephaly). After a few days in the hospital they did an ultrasound on his head and found evidences of calcification (scar tissue from where the brain has been damaged) and white matter loss. Although it was very apparent something was wrong we were told to wait and see.
At six weeks Calvin lost the ability to nurse. It was like he couldn’t remember how anymore. I noticed he never looked at me when I nursed him. At that point I didn’t even realize he could be blind. Then it became more and more difficult to get him dressed, his limbs were becoming very rigid. The months that followed are a blur. He was constantly screaming–later we found that it was probably from the ulcers in his esophagus which were there because he stomach muscles had no control and were allowing acid to flow back and forth constantly.
We left Cambodia after five wonderful years to pursue treatment for Calvin when he was six months old. When we arrived in the States Calvin had an MRI and in addition to microcephaly was diagnosed with polymicrogyria. It is a very rare neurological disorder that results from the neurons in the brain not migrating properly to the top of the brain to create the folds (gyria). Typically this happens in the womb between 10-13 weeks. This lack of migration of the neurons left parts of his brain malformed, other parts with small tiny folds, and overall underdeveloped. There was no obvious or known cause.
Calvin will be two in November of 2011. He has severe visual impairments and loves to find the sunlit windows. He cannot move any part of his body in a purposeful way which leaves us providing all his movement. Yet he loves his family, harmonicas, yippy little dogs, bells, stroller rides, singing, swimming pools, and more. It is painful for us to see his discomfort and disabilities. Not because his value is any less because of them, but because we can see the little boy in there who wants to come out and play, snuggle, swim, run, and interact with his world.
Calvin’s airway has also been affected and it collapses under pressure (crying, etc.). Respiratory infections are very difficult for his lungs to handle. We are constantly on alert, checking to see if he needs suctioning, opening his airway with positioning, preventing aspirations, giving meds, etc. His reflexes are extremely over active, making it difficult to leave him in most positions.
Diagnosis aside, he is our son. He is Calvin Luke Dedert. Brother to Sophie, Noah, Evie. Grandson to Oma and Opa, Grandma and Grandpa. Cousin and nephew to many. Created by Almighty God. No one, save God, knows how long Calvin will be with us. Although we struggle to care for his many needs our hearts are full of love for Calvin. We look to our heavenly Father and faithful Savior to carry us through each day.