A Special Chain Reaction

When Mary Pat was born with Pierre Robin Sequence we didn’t know if her physical deformities were the extent of her problems, or if she had other potentially associated disabilities as well.

In truth, we didn’t know if she would ever walk, or talk, or eat on her own, or even survive. It was harrowing for a few weeks, scary for a few months, and then for years we fell into a routine of care that was full of unknowns. She had multiple appointments each month, and therapists who came to the house two to three times per week.

A good friend of mine has six wonderful children. Her youngest was born with Down Syndrome about a year before Mary Pat. Quite a few times at a moment’s notice, she drove half an hour to help me replace Mary Pat’s tiny nasogastric tube. In tears, I felt as though I’d entered a new world — a new “club” — of parents with special needs children. Early on, though, my friend pointed out that the way she saw it, each one of her children had “special” needs. Each had needs quite unique to them. I was blessed by her wisdom.

I have referred to Mary Pat as our “special needs child” but perhaps I should rephrase this to “our child with special needs.” Why is it that I need to distinguish her at all from the others? Sometimes it is to emphasize her extra-ordinary needs, but I suppose it is often for ease of description. We have six daughters and four sons. The oldest four girls are sometimes referred to as our “oldest, second-oldest, third-oldest and fourth-oldest.”

Our sons are described similarly, and then Mary Pat as our daughter with “special needs” and Margaret as our “youngest.” Again, they each have their special, unique needs, and we love them dearly. Energy and time can be spread thin in large families, but the love multiplies exponentially.

If it is true that every child has their unique and special needs, then that oft-heard sentiment that only “certain types of parents” do well with such children is unfounded. We grow into what we are given or challenged with. I understand fear and even panic when learning that a child in the womb has a certain diagnosis which will significantly impact the course or length of their life, and which will significantly impact the family. But the truth remains that every single person I have known who raised such children, even those who lost them early, professes immense blessings, and gratitude for the effects of their children on their lives.

Just as profound are the effects of these children on others. Mary Pat wheeled herself around her elementary school when she became ambulatory with a walking device. She would visit the other classrooms and became known to all the other children. They learned about her, and her differences were demystified. She was welcomed and loved.

Mary Pat received handwritten cards from schoolmates throughout the years. One third grader told her that she wanted to be like her–happy all the time. Another said over the loudspeaker during morning announcements, that he was inspired by Mary Pat to go to college so that one day he could work with children like her.

Each of her caretakers have been touched by her life, and love her dearly.

Yes, it is true that more time, energy and resources are often needed for children like Mary Pat. But the world is a better place because of her, and those like her. They are endowed with grace that holds the potential to bring out the very best in us. They teach us about what is important in life. They evoke compassion, and spark an unstoppable chain reaction of love.

Autumn and Life

Yesterday was the Autumnal Equinox and wow, did it deliver the perfect weather here. My favorite cool, sunny weather continues into today. A woman I passed this morning said that she would always wish to live in a place with all four seasons. While I love the fresh colors of Spring and the lush green of Summer, the deciduous trees are in their glory in the early Fall.

I have always lived in this latitude of North America. The cyclical four seasons truly become a part of you. Perhaps being acclimated to these cycles prepares one to navigate the changing seasons of life. When I was young I would hear the “old people” talk about how fast life has gone. At that time I looked so forward to being an adult. I could not imagine that it would arrive so swiftly, and along with it so many responsibilities. Parenthood or career consumes us and in a moment decades have passed. Retirement looms, maybe even disability and great losses. Our children grow up and move on independently with their own busy lives. The “young” co-workers become in-charge of the business. Even some of our physicians look as young as teenagers.

The biggest difference with these seasons of life, however, is that they are not cyclical but linear. We do age and, God-willing, we grow old. As Autumn, Winter, Spring and Summer hold their negative bits like wind, ice, days inside when it is either too frigid or too hot, aging has its challenges and losses.

Like these first crisp days of Autumn, focusing on the beautiful things in our lives, the laughter, and the blessings will keep us more positive, more productive, generative, and most healthy. Like it or not we affect others. While working on ourselves, honoring grief and healing from our challenges and losses, our example speaks to others. Our thoughts and prayers become mighty.

Some of life’s seasons are more pleasant than others, but each day holds the potential of grace, of gift.

Better There

The loss of a loved one can really only be fully comprehended if you have gone through it. Even well-meaning folk do not know what to say. Those of us who have suffered tragic loss know that they don’t have to say anything–just be near, give a hug, or tell you that they are thinking of you, keeping in touch, available in case of any need.

I have known suffering souls who felt no other recourse in life but to end their lives prematurely. One friend tragically left her husband, two boys and all who loved her. A loving and decorated war hero left his children and his Mom and Dad shockingly bereft. Another kind soul, an Army Major succumbed, leaving his wife and children, family and friends. They were each people you would have loved to know. Fascinating, warm, inspiring, but their internal pain was agonizing, and too much to bear. But they underestimated the grief, despair and devastation that their final actions would wreak, and the life-changing, excruciating holes left behind in their loved ones’ lives.

I wrote this for my friends left behind.

Better There

I know,
Our eventuality, each soul,
But prematurely, by their own hand?
Too much to bear
And I wear it

Daily

Can you see? It is me
Walking Pain.
Behind the convincing smile that I am alright
Though in truth not fully,
Until I am with my loved one again


Few
None?
Can escape loss.
But prematurely, by their own hand?
Dimensions painful beyond imagination

One more step, one more step
One more smile, one more day
Traversing the dark tar pit of pain.
Full of questions and remorse
And memories.
Molten innocence turned torture

One more step, one more step
I go, Lord, I keep going
I must reach the other side
Must “be” for others, for You.
For now, however long, despite the burning
Despite the scars that form
In an effort to numb the next step
That will make it possible


It is for You, for others
That I push on
Bearing this pain
This must be enough for now

You will be my strength, give me grace
Until in Your time
I too will be
Better there