Where Special Needs and Easter Meet

by jphilo | Mar 27, 2017 | Different Dream, Encouragement, Spiritual Support

Where Special Needs and Easter Meet

Some of my earliest memories are anchored in the sensations that accompanied our family’s Easter observances. Scratchy petticoats under new spring dresses. Bonnet straps tied too tight under the chin. The tickling ruffles of white anklets and toes crammed into shiny new Mary Janes. The smell of ammonia rising from Dad’s urinal zipped into the black leather bag tucked under the pew. Dad, not sitting beside his family, but behind us in his wheelchair.

I would steal looks at Dad during the sermons. More than 50 years later, I can close my eyes and see his expression as he listened to the pastor. That memory brings me to tears–and yes, I am crying while writing these words–because his expression is not joyful or hopeful. It is resigned. It is sad. Even sorrowful.

After the service, his expression always changed. Eyes twinkling, Dad would position his wheelchair in the middle of things. He greeted every person who passed by, shaking hands, sharing stories, wishing them a happy Easter, refusing to leave until the crowd dispersed, and Mom was fretting about the ham burning in the oven. Dad’s good mood lasted through Easter dinner with our relatives, the egg hunt with our cousins, and the card games that followed. But after the company left and Mom shooed us to bed, the sadness and resignation settled around my father once again.

When I was a little older, we attended Maundy Thursday services, and I sat up straight when the pastor read from Isaiah 53.

To read the rest of this post about where special needs and Easter meet, visit Key Ministry’s blog for special needs families.

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Jolene Philo is the author of the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She’s also the creator and host of the Different Dream website. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and at Amazon.

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6 Special Needs Caregiving Lessons from my Father

Front row: Me (age 7), my father (35), and brother (5) Back Row: My paternal grandfather (66), sister (10), and mom (35) in 1963

Special needs caregiving has always been part of my family’s life. Guided by our determined and capable mother, we cared for Dad in our home for over 2 decades after he was diagnosed with multiple sclerosis in 1959. When he moved to a nursing home in the early 80s, Mom fed him supper every night. We brought his grandchildren to visit as often as possible. My father, once a gregarious and outgoing man, quickly lost the ability to walk. By the time he died in 1997, Dad couldn’t talk and required total care. Even so, he passed along some special needs caregiving lessons I treasure. This month, in honor of the 20th anniversary of his passing from this life to the next, here is the caregiving wisdom I gleaned from him.

Lesson #1: Don’t Waste Your Health

Good health is a gift from God. We are called to steward our health by eating healthy food and getting enough sleep and exercise. We are also called to use the gift of good health to make this world a better place. When I’m tempted to sit by the pool and eat bonbons, the image of my father laying in his nursing home bed for 14 years compels me to get up and get busy.

Lesson #2: Children Add Sparkle to Life

Whether my siblings and I brought friends home to play after school, or years later, when his grandchildren visited him in the nursing home, children brought sparkle to Dad’s life. We can bring sparkle too, by inviting children into our homes to visit the loved ones in our care.

Lesson #3: People Matter

My dad was well-known in our community before his illness. Many friends, family, and people from our church family visited him faithfully for years. He welcomed every visitor (and unsuspecting strangers) with love and gusto. His response said that people matter not because of what they do, but because they are.

Lesson #4: Presence Is Important

My dad couldn’t get out and about for the last two decades of his life. As his speech failed, he couldn’t contribute to conversation either. Even so, several faithful men continued to visit. Sometimes, they would sit beside his bed and reminisce or talk about current events, as Dad gazed at them and grinned. Sometimes, they would sit quietly and return Dad’s smile. Even when loved ones can’t talk, the presence of others is a gift we can encourage others to share with them.

Lesson #5: A Smile Speaks Volumes

My memories of of conversations with Dad are growing increasingly dim. But his smile–all I have to do is close my eyes and there it is–an indelible memory to cherish. If his smile holds such power in my memory, did my smile do the same for him? Can the smiles of caregivers carry a similar impact? Just the possibility that it might have such power is reason enough to smile at loved ones often!

Lesson #6: Love Endures

Through our parents, my siblings and I experienced the beauty and pain of enduring, selfless love. My mother loved and cared for Dad for 38 years. Those years were hard, selfless, exhausting, and rewarding. To the end of his days, Dad’s face lit up when Mom walked in the room. He couldn’t remember his children or friends, but he knew and loved his wife. When I contemplate the love of Christ for those He calls His own, I thank God for my parents. Because of them, I know what it is to fully love Christ my caregiver who loves and cares for all His children.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

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Jolene Philo is the author of the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She’s also the creator and host of the Different Dream website. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and at Amazon.