When Disability Reveals the Depths of My Dependence

When Disability Reveals the Depths of My Dependence

When Disability Reveals the Depths of My Dependence

This year, I cooked Thanksgiving dinner in a wheelchair.

Not to raise funds for my favorite disability organization. Not as a show of solidarity with my friends who get around in wheelchairs. Not in memory of my father, who used a wheelchair to get around for 38 years.

No, I cooked Thanksgiving dinner in a wheelchair because I’m clumsy.

So clumsy that I fell getting out of the car, thanks to malicious purse straps that wound themselves around my leg, and broke my right foot. Since that day in early October I’ve had surgery, worn a boot while the foot heals, and am using crutches or a wheelchair to get around.

Mostly the wheelchair because crutches are not a safe choice for people who trip getting out of cars.

After the doctor pointed out the break in metatarsal #5 and issued strict non-weight bearing orders for what seemed like (and still seems like) an inordinate number of weeks, I vowed to do as much for myself as possible. As a result of that vow I can now do the following:

  • Bump up and down stairs on my behinder
  • Housecleaning chores such as sweeping, vacuuming, scouring sinks, scrubbing toilets, and emptying garbage cans in a wheelchair
  • Entertain a 2-year-old with wheelchair rides around the house
  • Cook meals, bake cookies and muffins, make granola in a wheelchair
  • Empty the dishwasher and do dishes at the sink with my trusty wheelchair right ready to catch me if I fall
  • Exercise for 30-60 minutes a day to Caroline Jordan’s hurt foot videos
  • And of course, cooking Thanksgiving dinner

To read the rest of When Disability Reveals the Depths of My Dependence go to Special Needs Parenting.

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Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.

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I Want to Come Home

I Want to Come Home

I Want to Come Home

My longing to come home intensifies each time my body fails me, when loved ones die, and upon hearing of another child receiving a different special needs diagnosis. One day when the longing was especially strong, I tried to explain the source of my growing desire to come home. Words failed in the end, but the longing remains. Perhaps you feel it, too.

I Want to Come Home

The news wasn’t what I’d hoped for. After three weeks of pampering, the broken bone in my right foot hadn’t healed much. The polite, young doctor didn’t say the lack of progress is age-related, but I’m pretty sure it is. He advised surgery as the next step (no pun intended), which means five to seven more weeks with a boot, wheelchair and crutches as unwanted companions.

The day after the diagnosis was difficult. I pondered two more months of relying on others to take me to appointments. Two more months of carefully maneuvering a wheelchair into the bathroom and bedroom. Two more months of waiting for others to open doors to get into bathrooms labeled ā€œhandicapped accessible.ā€ Two more months of the foot injury exercise video created by a woman who thinks the human body can bend in ways mine never has.

I scrolled through Facebook as a distraction and clicked on a post about a cancer run dedicated to a dear friend who lives in northwest South Dakota. She had been treated for breast cancer a few years back. In a phone call early this summer, her husband said her prognosis was good. Two months ago, someone posted a picture of my friend in glowing good health. But the picture of her at the cancer run was a different matter. She was in a wheelchair, on oxygen, her head covered with a floppy hat.

I messaged a mutual acquaintance to learn more, and the reply was sobering. This dear friend–who befriended me when we moved far from home after college, who lost a son to a freak accident when he was 17–is now battling brain cancer. ā€œShe is in good spirits,ā€ our mutual acquaintance said, ā€œand she’d love to hear from you.ā€

Surprisingly, I felt no guilt about being discouraged earlier in the day. My feelings are valid. The next few months will be difficult. My situation isn’t as serious as my friend’s, but it is an unwelcome reminder that my earthly tent will need more and more repairs as the years go by.

My heart ached for her and her husband, who is my husband’s dear friend. A longing for heaven welled up inside me, the longing that comes to all who are separated by distance and death from those we love. I wanted to throw off the chains that bind us to this earth and to be finished, once and for all, with this temporary life. I yearned to leave behind the good things of this world, none of which compare to the good things waiting in heaven–reunion with loved ones, restoration of relationships, and best of all, eternity in the presence of our Savior.

I want what we all want when life is not as it should be, what all who love Jesus desire as they complete the years ordained for them. At the end of all things, what we as believers truly want, what we want forever and for always, is simply to be where we belong. We want to come home.

For we know that if the earthly tent which is our house is torn down,
we have a building from God,
a house not made with hands, eternal in the heavens.
2 Corinthians 5:1

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Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.

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I’m Just a Carpenter

I’m Just a Carpenter

I’m Just a Carpenter

Guest blogger Scott Newport often introduces himself as “just a carpenter.” But he’s also a man of great dreams, and today he shares a story of an act of kindness that is encouraging him to be “just a carpenter” and much more to parents of kids with special needs.

I’m Just a Carpenter

Even though I’m just a carpenter by trade, on occasion I spend time working in a pediatric I.C.U. setting with doctors and nurses. I know it sounds crazy, but I have a son, Evan, who had Noonan’s syndrome and is now waiting for me in heaven.Ā  Because of my seven years with him, I use that experience to mentor other families of sick kids.

Last month I spent time with first-year medical students, teaching them about the patient and family side of medicine. Yesterday, though, I was at a training session for parent and professional teams. The two-person teams were either from health care organizations or state agencies that help kids with special needs.Ā  The purpose of the all-day event was to develop stronger leadership abilities.

I didn’t know anyone there except for Dr. D’Anna Soul, a young physician who agreed to attend with me. D’Anna and I had never spent much time together, even though we share a common mission of helping families of terminally ill children. Our team represented C.S. Mott Children’s Hospital at the University of Michigan. A prerequisite was to identify a project we are working on, which for us is to rename our hospice and palliative services at the hospitalĀ  as Stepping Stones.

The meeting started out with an ice breaker—you know, one of those activities with the purpose of getting folks acquainted and making people feel less nervous.

ā€œOkay, teams,ā€ the facilitator said, ā€œI want you to interview someone in the room you don’t know and find out what their likes, dislikes, and hobbies are. When you get done, you will introduce your new friend to the group.ā€

Across from D’Anna and I were two ladies. Before I knew it, one of the women said, ā€œHi Scott, my name is Linda and I’m a speech therapist.ā€ While I listened to Linda, Dr. D’Anna listened to the other woman who wore a yellow, flowery dress.
When it was time for the woman in the yellow dress to introduce D’Anna, it became apparent that the middle-aged woman had a severe speech impediment.Ā  I found out later that this woman had had a stroke and struggled to form the words her mind wanted to convey.

I immediately became nervous and felt helpless, though in my heart, I felt I should doĀ something. Afraid to even look around the room, I knew everyone probably felt the same. It was like someone had shut the windows and the room would soon suffocate us.

ā€œD’Anna go—,ā€ she said. She tried to form a sentence , but it was like shoveling out heavy concrete that was now setting up, with no way to slow down the solidification.

ā€œD’Anna go—,ā€ the woman tried again. There was more silence, then more struggling for the right words.

Within seconds D’Anna helped her new friend articulate words in a gentle voice.Ā  I’d never seen anything like that. The woman’s eyes tilted up slightly in acknowledgment. Her yellow dress seemed even brighter than it had been before.

Every time the woman said, ā€œD’Anna go—”, D’Anna filled in the blanks.Ā  ā€œD’Anna likes to read and help heal sick children.ā€

When the two sat back down, it felt like a window had been opened and a subtle September morning breeze had entered the room. I desperately wanted to write down a reflection of that moment; to write something I could share with D’Anna one day. I learned so much about D’Anna and how proud I am she took time to attend the training.

I’m just a carpenter but D’Anna and I share a passion for families. Today I feel like I have a true partner that will never let me down. She will surely fill in the blanks when I get jammed up and don’t know the rights words to say. And I hope to become a person who opens a window for families when they suddenly find themselves feeling suffocated by their child’s diagnosis of a complex medical condition. Together I think we can do it.

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Scott Newport is a carpenter who has a vision for unwanted, damaged wood. His finds are treasures to his soul. Each discovery he makes unfolds into a beautiful piece of furniture for which he finds a home, usually with a child or caregiver of a child with special needs. He writes about the life lessons he learns from his 3 children, especially from Evan who died in November of 2009 after 7 years of joyful life. To access all of Scott’s guest posts, click on the magnifying glass at the top of the page and type ā€œScott Newportā€ in the search box.

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Hope When It Hurts

Hope When It Hurts

Hope When It Hurts

Hope when it hurts. Guest blogger Sarah Walton has learned where to find hope when it hurts, when she and her children are overwhelmed by what Lyme Disease has done to her family. Please welcome Sarah as she debuts as a Different Dream guest blogger.

Hope When It Hurts

I sat quietly, listening as each family went around and shared stories about their lives. Children with autism, Down Syndrome, ADHD, paralysis, behavioral disorders and undiagnosed but devastating symptoms. Each family had a story — a heartbreaking, but beautiful, story.

I tried to give my full attention to each speaker, since this was our first time attending a special needs support group, but I found my mind spinning with doubts, denial and fears.

How did we end up here? Do we really belong?

Even after seven years of seeing doctors and searching for answers to our child’s neurological and behavioral challenges, I was still struggling to accept that I was living a life I’d never imagined or expected.

In fact, life has been nothing like my dreams. Instead it’s brought special needs, financial loss, chronic pain and our family of six all suffering with the painful and devastating symptoms of Lyme Disease.

However, this is the life God has lovingly and purposefully chosen for me, and each and
very aspect of it contains an eternal and glorious thread that’s woven into the tapestry of God’s sovereign plan.

One of those threads weaves in the truth that circumstances we never would have chosen for ourselves may be the very platform God uses to bring the hope and comfort of Jesus to others hurting in our sphere of influence.

For example, while I never would have chosen to be thrust into the world of special needs and Lyme Disease, it’s allowed my family the unique opportunity to offer the comfort and hope of Christ to many people who suffer in a similar manner.

While sharing Christ’s comfort is not limited to those suffering in the exact way we are, it’s a unique blessing when the Lord brings someone alongside us who can understand our specific pain and bring the comfort of Christ they’ve received as they’ve walked a similar road.

As much as we struggle to understand why God allows certain circumstances in our lives, His ways and purposes are often far beyond our limited understanding.

However, we can be assured our suffering will not be wasted as we walk with Christ. He will use it to make us more like Him and bring Him glory. Second Corinthians 1:3-4 promises God will comfort us in our affliction as we trust in Him and, in the overflow of our own comfort, we are able to bring that same comfort to those around us.

Friend, if we who are Christians never suffered or found hope and comfort within it, how could we bring any real hope when it hurts?

Though we may not understand why God has allowed certain trials into our lives, let’s trust He has chosen our path of suffering for His greater purpose of drawing us near to Him in comfort, while bringing that hope when it hurts to those He’s placed in our path. And ultimately glorifying Him through it.

This article first appeared at Proverbs31.org.
Ā 

 

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Ā Sarah Walton is a stay-at-home mom with four kids under ten years of age, all who suffer with Lyme Disease. She is the author, along with Kristen Wetherell, of Hope When It Hurts: Biblical Reflections to Help You Grasp God’s Purpose in Your Suffering. Follow Sarah at her blog Setapart.net

 

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Just As I Am

Just As I Am

Just As I Am

I was not a fan of Billy Graham as a child. My dislike had nothing to do with him or his message. Rather, it had everything to do with the disruption his televised crusades brought to our family’s TV viewing schedule. Mom, a school teacher who wanted her kids to be active readers and not passive consumers, controlled how much television we watched at our house. However, she granted Dad control of what we watched.

Because, as his multiple sclerosis progressed, the television screen was his primary link to the outside world.

Dad was a big consumer of the nightly news, football, variety shows, and hokey sitcoms. As a former county extension agent, he especially loved the bumbling county extension agent on Green Acres. He would laugh until he cried as Hank Kimball’s meandering answers left the farmers who consulted him more confused than ever.

“Jo, get Harlan a tissue,” Mom would order when Dad’s nose began to run.

“Make that two,” Dad would gasp between chuckles, “no, three.”

As much as Dad loved Green Acres, he loved Billy Graham more. While my sister, brother, and I grumbled when Graham’s crusades preempted our favorite shows for three or four nights in a row, Dad anticipated crusade weeks with delight. Every night he rolled away from the supper table early and positioned his wheelchair in the center of the living room directly in front of the TV. We three kids, on the other hand, dragged into the living room, rolled our eyes and assumed our best martyred children poses after flopping onto the couch and easy chairs.

To read the rest of this post, visit Key Ministry’s website for parents of kids with special needs.

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Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.

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The Caregiver’s Treasure

The Caregiver’s Treasure

The Caregiver’s Treasure

This morning, in the chilly half dark, I passed the houses along the route that leads to my favorite path. The acrid odor of burning electrical wires grew strong when I neared a ramshackle, uninhabited house that is the neighborhood eyesore. Yellow fire scene tape, barely visible in the dim light, stretched along the chain link fence surrounding the property, and I resolved to retrace my steps and get a better look near the end of my walk.

The clear light of day revealed the extent of the damage. The roof of the small, ranch house had caved in. Two sides of the house were burned away. The interior walls had collapsed. The house’s contents were unrecognizable, melted lumps of goo.

Yesterday, when I walked by, the house had been standing–in need of paint, sporting several broken windows, the yard shaggy and neglected–but it was still there.

This morning it is gone.
Dead.
Finished.
I am once again aware of how quickly and completely life can change.

I stared at the house and thought of when I first learned that lesson: the day my father died. For 38 years, my mother, my siblings and I watched multiple sclerosis rob Dad of the ability to walk, to write, to read, to control his bodily functions, to think clearly, to speak, and to feed himself.

The changes were small and incremental, sometimes barely discernible. They came so slowly and so gradually that for years it felt like nothing would ever change. Dad was trapped in a body that continually betrayed him. We were in limbo, waiting for the end we all knew was coming. But when he began to struggle to swallow, we knew the end was near.

On Sunday, Dad was fine when I took my 7-year-old daughter to read a story to him.
On Monday night, we received a call that Dad was running a fever.
On Tuesday, he died before noon.

One day Dad was there–his body compromised, his mind weakened, his spirit calm–but he was there.

The next day, he was dead.
His life was finished.
He was gone.
I experienced, for the first time, how quickly and completely life can change.

I stared at the burned out shell of the house. When the officials complete their inspection of the fire scene, there will be little for the demolition crew to do but cart away the rubble and smooth the ground. The house will be gone forever.

But, I realized, the same can not be said about Dad. My father is still here. He is part of who I am. Because of him, my perception of what constitutes a good life is quite different from the world’s view of a life well-lived.

For caregivers, a good life isn’t measured in major accomplishments–
Races won.
Money earned.
National acclaim.
Education achieved.

For caregivers, a life well-lived is measured in the small things–
A delayed milestone reached.
A tender moment shared.
The squeeze of a hand.
A fleeting smile of recognition.

These are the things Jesus teaches his people to treasure.
These are the things that matter.
This is the jewel caregivers carry with them when their loved one lives and when their loved one dies–
the unchanging value of every broken life.

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Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.

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