Our daughter, Mary Addison, is now 26 years old. She is mentally and physically challenged. She has skills of a 12-year-old but enjoys the innocence of a small child. That being said, you can imagine her love of all things “Christmas.” (She and Buddy the Elf have a lot in common.) We start listening to Christmas carols right after Halloween. We patrol neighborhoods in the car at night looking for Christmas light displays. With each new discovery, we shout and high-five like we scored the winning touchdown.
The absolute best part of Christmas for Mary Addison is what I call “The […]
The holidays can be difficult and depressing. Shorter days, gloomy weather, family chaos with everyone at home, and changes in schedules can intensify our challenges of caring for a family member with exceptional needs. The complaint I hear the most is, “Christmas and all its traditions no longer bring me joy. It’s just extra work and stress – financial and emotional. They just remind me how much our lives have been changed by this disability, how different we are from other families.”
Galatians 1:10 Am I now trying to win the approval of human beings, or of God? Or am I […]
A sweet friend that I met during caregiver small groups gave me permission to share it this you. Her mother has Alzheimer’s and is quickly declining, and my friend had been struggling with feelings of impatience and inadequacy. She confessed she’d had a “sit down” with God asking if He was sure He picked the right person for this very difficult job?
Then yesterday her daughter posted this “Heroes Around Us” contest entry from her granddaughter. “My Granny loves me so much and helps protect me too.” Wow!
God’s Word tells us that how we love one another is the way others […]
My daughter’s seizures dramatically escalate with every big storm. Hurricane Florence’s scope is so big, there is nowhere within a 5-hour radius we can drive to get her out of the pressure. We resigned to just stay in Charleston and be near our familiar docs and hospital. Watching her seize with increased frequency and intensity had me feeling so hopeless, as we will be trapped by this storm for a while.
Then I read this scripture this morning.
Daniel 6:22 My God sent his angel, and he shut the mouths of the lions. They have not hurt me, because I was found […]
My website was recently hacked and infected with a terrible virus. My webmaster and hosting service eventually got everything cleaned up and back online, but when I typed in the address, I kept getting the same error message. It was so frustrating – they could see the new and improved, cleaned up site, but I couldn’t.
My webmaster realized I had not enabled automatic updates on the back-end of my website because it was just so much easier for me not to have to learn newer and better ways to do things. He also told me to do an advanced clean-up on […]
I was reading the book of Ruth in the Bible the other day. It really touched something deep in me I want to share.
My mother died very young, before I had children. It seemed so premature and unfair, but like this story of Ruth, I have come to realize it wasn’t the terribly bad thing that it appeared to be.
Here is a brief recap of the story. Naomi is a married woman with two sons. A famine hits her town (Bethlehem) and her husband moves her and her sons to a new place (Moab). When they get to the new […]
When we realized that no surgery, no med, no therapy was going to fix Mary Addison – that this was our new normal – I felt like we’d been given a sentence of life in prison. To accommodate her daily seizures and her mental and physical challenges, everything about our lifestyle would have to change and all our plans were scrapped. It was back to the drawing board to design a new life within our prison walls.
The monotony, the lack of progress, the daily routine and the isolation nearly drove me insane. Those images of chained prisoners shuffling around in […]
You become a better caregiver when you realize what a gift you have been given to find out who you really are and what you are capable of — your power to love, the deep satisfaction that comes from humble service, the exquisiteness of fragility, and our marvelous connection with the Divine.
It’s not about the disease or disability. It about a life changing journey – like scaling the sheer face of a mountain with a helpless person strapped to your back. People below are watching and commenting but no one is helping. Your hands are raw on the rope. Your […]
Each January, millions of us make resolutions. We examine ourselves and our lives and decide what needs to be improved. The idea is that a resolution is an optimistic way to approach each new year, but in reality, it’s the perfect set-up for failure.
Studies have shown that fewer than 20 percent of New Year’s resolutions are followed through, and then for only a limited time. Why? Because rarely do resolutions really get to the root of dissatisfaction – self-judgement and loathing.
This year, as I sat down to draw up the list of things about myself that need to change, God […]
It sounds crazy, but early in life I learned that Time was my enemy – cramming school, homework, and activities into every second of the day. In college, I began to wage war on what I feared Time would eventually do to my body – diets, potions, gyms and a race to find a mate – all before Time turned me into a hag. Professionally, I learned to live by time sheets, billable hours, productivity charts as I frantically tried to beat competitors to the top of the career heap.
I thrived on being busy. If I was busy, that meant […]
“Compassion fatigue” is usually referred to when talking about nurses, doctors, soldiers or professionals who help others who are suffering, but it’s also very real among friends and family caring for someone with exceptional needs or who is suffering.
Even though compassion fatigue is common, it can be difficult for those who suffer from it to accept that it’s happening to them because empathetic and giving people may find it hard to admit that their needs are important too. The realization there is a limit to compassion (even if that limit is shared by all other people) can induce guilt and […]
As we prepare for the impact of ANOTHER deadly storm while watching the aftermath of Hurricane Harvey, the content of the blog I posted nearly one year ago still rings true. I’ve posted it again and am praying for guidance and wisdom for all.
Riding the Storm Out (10/05/2016)
Our family lives on the East Coast, and we have been warned of a very big storm – a deadly hurricane, as a matter of fact – that is about to impact our lives. We have lived in this place a long time and been through many of these big storms, even a […]
“Be_________ so that you can be loveable.” We send this message to our children, our neighbors, the people we hire, our spouses, etc. Be a certain way so that I can love you, employ you, marry you, etc. That’s the criteria we use to make decisions. I will choose it if it conforms to what I like – whether it’s a dress, a neighborhood, a political party, a cookie, a friend. That’s not an unreasonable way to live, but what do I do with the things and people that don’t fit my criteria and expectations? Not seeing any value, we […]
We’ve been through a lot of changes recently as we sold our home and moved into a more wheelchair-friendly place to accommodate our daughter’s declining condition. Things did not go smoothly. Well, that’s actually an understatement. Chaos, confusion, grief, disappointment and trouble had us hemmed in on every side. Nothing was working out, yet it was so evident from our daughter’s failing health that we had to leave our house in order for her to continue to live with us. I described the three months of searching, negotiating, packing, unpacking – all while watching our daughter decline – as feeling […]
I am STILL learning this: To love someone is not first of all to do something FOR them, but to reveal to them their beauty and value, to say to them through our attitude – “You are beautiful. You are important. I trust you. You can trust yourself.”
We all know well that we can do things for others and in the process crush them, making them feel that they are incapable of doing things themselves. To love someone is to reveal to them their capacities for life, the light that is shining in them.
As a new year begins, I find myself a bit overwhelmed. Mary Addison broke her “good” arm and is more helpless than ever. Her seizures have gotten worse and she’s had several bad falls (hence the broken arm). To top it off, we lost our beloved caregiver to a job that offers better pay and benefits and we haven’t found a replacement. (Yes, she bailed on us, but do you blame her?) We are limping along financially. (What’s new.) There’s that extra weight I put on over the holidays and the Looming List of all the things I didn’t get […]
I think one of the most destructive emotions a caregiver can have is hopelessness. If there is no hope, why do we do what we do? And hopelessness is contagious. When we’re defeated and full of despair, our words and actions can be discouraging to everyone around us.
Advent is supposed to be a time of preparing our hearts for the greatest source of hope – a Savior who came to show us The Way to live in peace, love, joy and abundance. Yet I find as the year winds down, I’m so tempted to succumb to hopelessness.
Our family lives on the East Coast, and we have been warned of a very big storm – a deadly hurricane, as a matter of fact – that is about to impact our lives. We have lived in this place a long time and been through many of these big storms, even a direct hit by Hugo.
I am struck by how similar our responses are to all the “storms” of life.Whether it’s an approaching hurricane, a bad health diagnosis, impending financial doom – most of us follow the same patterns.
First, we ask the “experts” for their opinion. Usually, they tell […]
In my first 30 years, I was a “frequent flow-er.” I’d always look for the flow and go with it. I was relaxed about everything and just let things happen (even college and early career). Then real life hit – big job, marriage, mortgage, kids, etc.
For my middle 30 years I began planning and pushing my plans through – come hell or high water. Somehow, I believed if I didn’t push, we wouldn’t get anywhere (notice the “we”). I thought my spouse, kids, co-workers all needed me to come through for THEM. (I think that is called being narcissistic and […]
Summer brings to mind all those great family vacations. My mom didn’t like to fly so we always traveled by car – reptile farms and mermaid shows, waterfalls and caverns, old railroads and battlegrounds, Stuckey’s Pecan Logs and Callabash shrimp.
And all along the way were Gift Shops – marvelous, magical places full of coon skin caps, sling shots, plastic snakes and the ever-popular ship in a bottle. We were allowed just one souvenir per trip, so we weighed our options carefully and were often heart sick as we pulled out of the parking lot leaving behind that special “something” to […]
I just learned of a woman who took the life of her 24-year old daughter with special needs and then took her own life. Friends say she was very depressed and overwhelmed. She had not been receiving much help. How can caring for a family member with exceptional needs drive a person to such desperate measures? People are in shock. I am not. I get it.
When one becomes selfless, caring so intensely for another, there is an insidious darkness that creeps around looking for a place to take up residency in your soul. Loneliness, fear, guilt, resentment and inadequacy constantly […]
This morning I was feeling especially “put upon,” full of self-pity, exhausted from a night of no sleep, tired of the daily grind that faced me again today. I exploded on everyone in my path, which sent them scurrying off mumbling, “What’s up with her?” which left me feeling alone, misunderstood and unloved. Ever been in that downward cycle?
Mercifully, I know that in times like these, I just need to get alone with God. But I wasn’t prepared for what He so clearly spoke to my heart.
“What if the one who needs a healing miracle is not Mary Addison (our […]
This is an old photo of my daughter, Mary Addison, and her friend Joseph. I love this photo for many reasons – mostly because our dear friend, Joseph, always saw angels and now he is with the angels. But this story is about an encounter Mary Addison had with a young homeless man and the blessing of never being in a hurry. For those of us who are often frustrated by how our loved one slows us down, I hope you enjoy!
Each Advent, our family prepares for the birth of Christ by re-committing to focus on the purpose and meaning […]
The post read, “We’re looking for people of peace to join us in this project.”
People of peace? What does that mean? Would I qualify? Am I a person of peace? Why a person of peace? What difference could that make as long as I’m qualified? But that was the only qualification. I was captivated and determined to know what a person of peace was and why that was so important.
I read that post over 30 years ago when I was young and starting out in the world, looking for my first “real” job. I quickly lost interest in “people of […]
As caregivers, we can easily become overwhelmed because we believe it is our job to fix, heal, protect, comfort and sustain the person for whom we care. We may find ourselves in the role of primary caregiver, but the truth is, only God has the ability to fix, heal, protect, comfort and sustain the person for whom we care.
With all that we do, it is easy to feel like the full responsibility has been put on us, that we are in control. We bathe, feed, and transport – to doctor’s appointments, therapies, school, etc. We develop schedules to keep it […]
Be joyful in hope, patient in affliction, faithful in prayer. Romans 12:12
Easier said than done. We’ve been through a very dark time. Mary Addison has had seizures almost daily for 23 years, but recently, she would come out of seizures unable to walk, talk, even swallow. Just when she was making a little progress, another wave of seizures would hit, rendering her incapacitated again. We actually thought she’d had a stroke. Terrifying to say the least.
During this scary time, our regular caregiver had to leave us due to government red tape. So our normally active world shrunk down to […]
Then he said to them, “My soul is overwhelmed with sorrow to the point of death. Stay here and keep watch with me.” Matthew 26:38 (NIV)
Jesus’ words here resonate with me. There have been so many times when I just wanted to scream “I feel so alone! I can’t do this by myself.” I have a wonderful husband and loving friends, yet I can still feel so alone.
The key word here is “feel.” Mary Addison’s seizures seem to have the power to consume me to the point of losing everything else – my identity, my social life, my health, etc. […]
I went to visit my most favorite teacher ever – my third grade teacher, Mrs. Hasell. I had not seen her in over 40 years, but fate brought us back together on this steamy Saturday afternoon.
She seemed like she was 103 years old when she taught me, but she really was 103 upon my visit. I hadn’t even known she was still alive. On this day, I visited her in her home where her daughters were caring for her. She was in a hospital bed, set up in the downstairs den. Her small frail body was all clenched up like […]
Love can get so complicated. So much fear of giving love and losing a bit of ourselves if we get hurt. So much manipulation – I will love you so that you will love me. So much disappointment – You don’t love me enough.
Our daughter, Mary Addison, is mentally and physically challenged and she has shown me how to love.
One of Mary A’s favorite past times is to go to very busy places and say “Hi!” to people – total strangers. Her “Hi!” or “Hello!” is very exuberant and is often […]