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.
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Thank you for sharing your story. Calvin is so very blessed to be in your family. I’m of the belief that up in Heaven these spirits choose the family they would like to be in. I’m sure Calvin how no doubt when your family was an option. Our oldest four year old daughter has autism and reading stories like y’all’s bring me more hope and peace knowing that we are not alone. Cali’s challenges are different from Calvin’s but the challenges are still real. Thanks again for sharing.
Hi Kara,
I loved reading Calvin’s story, as well as the rest of your blog. My daughter has Lissencephaly as well as Polymicrogyria, and I too share your joys, worries, struggles and fears. It is amazing the joy our children can teach. You and your family will be in our thoughts. God Bless.
Hi Nicole, thanks for your note. I’m sorry to hear your daughter suffers from Lissencephaly as well. I am going to pop by and visit your blog. May God bless and keep you and your little one.
Thank you for sharing your story. Your love for the Lord and for your family is so evident here. Your words have touched my heart and given me reason to praise Him through whom all blessings flow!
God bless you!
Terrie
I am always blown away by families affected by disability. I always hear awesome stories like yours of God’s work and provision. Our Daughter Ana has Down Syndrome among other problems. I always hear stories like yours and think, “wow we have it easy”. I am sure you have also heard other people’s stories and say, “wow we have it easy”. Thanks for sharing it gives me great hope to persevere and trust in God’s good for our family.
Hi Kara…
I’m a Kara with a “K” as well.
Your love for Calvin shines through in these words, but your pain and heartache is also shared in a very honest, open way.
Calvin’s story makes me long for Heaven and makes me thankful that God knew which family Calvin was meant for.
Stopping to pray for you this morning…
Hi Kara. It was a delight to stumble across your story. I am Mom to Brian, who is 29 years old and also has (bilateral perisylvian)PMG. He is non-verbal, has seizures and asthma and got a g-tube 5 years ago, but lives on his own in an apartment with 24/7 caregivers. He requires full care, but I believe he understands so much of life and he definitely has preferences. He loves Star Trek, Star wars and John Wayne movies.
On occasion he approximates words, and I can usually understand him. When he was 6 years old his sister Anna was a new baby. It was Thanksgiving and his dad was feeding him as I finished up the meal preparations (he couldn’t wait.) When we sat at the table as a family with my older daughter Katie, who was 4, I told the children we were each going to tell something we were thankful for. I asked Katie what she was thankful for, as she was the only verbal one of the 3 children. She paused to think a few moments, and I prompted her several times. As we waited for Katie, out of the blue Brian said “Ahna”. We all were thrilled and knew exactly what he’d said! As we applauded and cheered, Katie said, I am tankful for our new baby. (little sisters can be such copycats!)
One night a few years ago,I slept in his room and woke to hear him praying for Anna, saying “deah Gah, Ahna” (dear God, Anna)over and over, at a time Anna was going through some terrible troubles. I wept thinking of the effort it takes him to form a word and although we have taught him that God understands the thoughts of our hearts, he chose to pray aloud. And many people who have no special needs never utter a prayer or have faith in God.
I don’t know what God has in store for your Calvin, but I do know He will hold you through it all.
God bless your family, Carlene
Nothing comes by chance – beautiful that you could relate to and encourage this family
God bless and strengthen all of you!
Well done again Kara. Thanks for the succinct summary of Calvin’s life to date and his special needs. I love the photo on the sidebar of your four kiddos. It’s gorgeous. Well done on the new site, and I love Darryl’s artwork on the new header. Thinking of you often and praying for you in the coming weeks as you deal with Noah’s health needs as well as Calvin’s. Love you. Karen