The Moral of this Story

It is not uncommon for me to read something and ponder it for days, thinking about how it relates to my life, looking for connections and a bit of profound advise. I feel like there is always room to grow and perhaps see life through another lens, another vantage point, to actually walk a mile in someone else's shoes. I used to lie on the floor with Cooper as close as possible, our heads smooshed together trying to see the room, the lights, the fan as he saw it. Perspective intrigues me. There is no contesting life with a special needs child and the loss of a child are difficult roads. Our perspectivies and philosophies may differ, but we all grieve, we all search for understanding and we all celebrate the little things. Each in our own tidepool. 

"Shoes" 

Author Unknown

I am wearing a pair of shoes. They are ugly shoes. Uncomfortable shoes. I hate my shoes. Each day I wear them, and each day I wish I had another pair. Some days my shoes hurt so bad that I do not think I can take another step. Yet, I continue to wear them. I get funny looks wearing these shoes. They are looks of sympathy. I can tell in others eyes that they are glad they are my shoes and not theirs. They never talk about my shoes. To learn how awful my shoes are might make them uncomfortable. To truly understand these shoes you must walk in them. But, once you put them on, you can never take them off. I now realize that I am not the only one who wears these shoes. There are many pairs in this world. Some woman are like me and ache daily as they try and walk in them. Some have learned how to walk in them so they don't hurt quite as much. Some have worn the shoes so long that days will go by before they think about how much they hurt. No woman deserves to wear these shoes. Yet, because of these shoes I am a stronger woman. These shoes have given me the strength to face anything. They have made me who I am. I will forever walk in the shoes of a woman who has lost a child.

"God’s a Zebra Too!"

Rev. Ron Campbell

I noticed a zebra figurine sitting on my pantry door-frame this morning. It reminded me of the only time I’ve ever written a preface to a pastoral prayer. It was Easter Sunday, 1999. Although it’s not Easter now, this might be a helpful word of comfort for some of you.

     “I feel led to share with you the context of the formulation of this Easter Sunday pastoral prayer. On Thursday afternoon I was standing in the checkout line at Albertson’s. In my basket I had several containers of vitamins. The lady behind me asked me if I were a doctor.  I said, ‘No, I’m a pastor.’ After a brief exchange she said she hadn’t gone to church in over two years. I invited her to attend our Easter Service. She said she might come the Sunday after Easter, as it would be too difficult to be in church on Easter Sunday. She was still grieving her son’s death. Her son had died two years before from meningitis at 18 years of age. She was grateful for the six weeks they had together to say goodbye, but now church was too painful an experience for her to bear.

     Tears welled up behind her eyes. I told her that I couldn’t relate fully to her pain as I had not had to make a place in my heart for this kind of loss. My son was alive. But I knew people who did understand her pain. One of my friends, whose daughter was tragically killed when she was 20, told me that although we’re all in the horse family, those who loose a loved one tragically or outside the expected life span are a sub-group. They’re zebras, with strips that can only be recognized by other zebras.

     The lady behind the woman who’d lost her son had been listening in. She looked at us with tears in her eyes and said ‘I’m a zebra. I’ve lost two sons.’ We shared a moment of quiet empathy, and then I inadequately expressed my hope that this Easter God would comfort them with his assurance.

     Later in the parking lot it came to me what I could’ve said and wish I’d said; ‘Although I can’t fully relate to your loss, there is someone who can. God knows your pain. He also lost a son. He knows what that’s like. And God also knows what the joy of reunion is like. That’s what we celebrate at Easter. God’s a zebra too. He has the same kind of stripes as you.’

     Church should be a place where zebras can come and feel God’s comfort in their pain. I offer our prayer today with these two mothers in mind as we pray as Jesus instructed us, not for the well, but for those who truly need of a word of assurance and hope from God.”

Waterbugs & Dragonflies

The day after Cooper's Memorial Service we had a private family service at Remembrance Gardens. It is a beautiful and inspiring Garden in the hills, full of shady trees that wander down to Lake Austin. Our pastor gave us this children's book afterwards...it was too fitting not to share. 

Waterbugs and Dragonflies
By Doris Stickney


Down below the surface of a quiet pond lived a little colony of water bugs. They were a happy colony, living far away from the sun. For many months they were very busy, scurrying over the soft mud on the bottom of the pond. They did notice that every once in a while one of their colony seemed to lose interest in going about with its friends. Clinging to the stem of a lily, it gradually moved out of sight and was seen no more.


'Look!' said one of the water bugs to another, 'One of our colony is climbing up the lily stalk. Where do you suppose she is going?' Up, up, up it went slowly. Even as they watched, the water bug disappeared from sight. Its friends waited and waited but it didn't return. 'That's funny!' said one water bug to another. 'Wasn't she happy here?' asked a second water bug. 'Were do you suppose she went?' wondered a third. No one had an answer. They were greatly puzzled.


Finally one of the water bugs, the leader of the colony, gathered its friends together. 'I have an idea. The next one of us who climbs up the lily stalk must promise to come back and tell us where she went and why.' 'We promise', they said solemnly.


One spring day, not long after, the very water bug who had suggested the plan found himself climbing up the lily stalk. Up, up, up he went. Before he knew what was happening, he had broken through the surface of the water, and had fallen onto the broad, green lily pad above.


When he awoke, he looked about with surprise. He couldn't believe what he saw. A startling change had come to his old body. His movement revealed four silver wings and a long tail. Even as he struggled, he felt an impulse to move his wings. The warmth of the sun soon dried the moisture from the new body. He moved his wings again and suddenly found himself up above the water. He had become a dragonfly.


Swooping and dipping in great curves, he flew through the air. He felt exhilarated in the new atmosphere. By and by, the new dragonfly lighted happily on a lily pad to rest. Then it was that he chancd to look below to the bottom of the pond. Why, he was right above his old friends, the water bugs!. There they were, scurrying about, just as he had been doing some time before. Then the dragonfly remembered his promise: 'The next one of us who climbs up the lily stalk will come back and tell where he or she went and why'.


Without thinking, the dragonfly darted down. Suddenly he hit the surface of the water and bounced away. Now that he was a dragonfly he could no longer go into the water. 'I can't return!' he said in dismay. 'At least I tried, but I can't keep my promise. Even if I could go back, not one of the water bugs would know me in my new body. I guess I'll just have to wait until they become dragonflies too. Then they'll understand what happened to me, and where I went'.


And the dragonfly winged off happily into its wonderful new world of sun and air. 

A PRAYER
Thank you, God, for the story of the water bugs and the dragonflies. Thank you for the miracle that makes shiny dragonflies out of water bugs.
Please remember Cooper who has left the pond we live in. Give him a good life, too, in a wonderful new world of sun and air. And then remember me, and let me someday be with him.
Amen.

A Glass 1/2 Full

There are so many things that we wanted to experience with our little boy, so many things we dreamed of and hoped for from conception. As the anticipation of Cooper's arrival drew near, our visions became more tangible. Thoughts of laughter, climbing trees, playing tag, building pillow forts, catching bugs and splashing in the rain. I could just see David and Cooper throwing a ball in the front yard, or taking in a baseball game. It was all very Normal Rockwell and wonderful.

The dreams of our growing family have held fast and may have even strengthened knowing what we had already overcome. Of course there are sleepless nights and awkward moments, but overall bliss. When it became evident Cooper wasn't reaching milestones, of course we worried, and devestated after receiving a fatal diagnosis. Our plane had changed course without our consent and was completely out of our control. In this day and age, yes, there are still diseases which have no cure?! We have numbered days with our son, a narrow crack in time to fill with experiences which will soon become memories. Cooper will not ever be able to build a pillow fort, but I can build it complete with strings of Christmas lights, and we can lay in it together. A realization hand in hand with the acceptance which allows us the enjoy the time we have, and a new family motto of living life to the fullest. 

“Welcome to Holland”

©1987 by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy.  You buy a bunch of guide books and make your wonderful plans. The Coliseum.  The Michelangelo David.  The gondolas in Venice.  You may learn some handy phrases in Italian.  It's all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy!  I'm supposed to be in Italy.  All my life I've dreamed of going to Italy."

But there's been a change in the flight plan.  They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language.  And you will meet a whole new group of people you would never have met.

It’s just a different place.  It's slower-paced than Italy, less flashy than Italy.  But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips.  Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there.  And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever  go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Strength of an Egg

Original copyright 1902 by William Wallace Denslow

This article was passed on to us by another mom. I think its a very relatable description of what we endure and feel as we face day to day challenges.

The Strength of an Egg

by J. Freitag

Parents of children with a terminal illness are often referred to or viewed as having strength “like a rock.” Albeit flattering, it isn’t quite true. It is more like the strength of an egg. An egg, you ask? Yes! If you’ll think about it, you’ll see my point. An egg has a polished, smooth outer appearance, with no cracks or weak spots visible. It seems almost inconceivable that the inside might not be so smooth or solid. Most children, at some point are shown the famous egg trick. An egg set at just the right angle can withstand enormous amounts of pressure and cannot be cracked or broken. Yet the same egg, tapped gently at an ever slightly different angle, will break. The contents, once so neatly concealed, will come spilling out. The no longer perfect shell will be crushed. It looks so fragile that it seems inconceivable that it ever held any strength. A rock, on the other hand, is solid all the way through. To break it is almost impossible. If you succeed, you will find that there is nothing inside but more rock. It takes a lot more than pure hardness to hold the hand of hope. Parents of [medically fragile] children are not solid all the way through. We hurt, we fear, we cry, we hope. It takes a very careful balancing act to keep the shell from being shattered. “Balancing an egg” while running a household, going for doctors’ visits and hospital stays, keeping the family together, and holding on to the constantly unraveling ties of your sanity can be very tricky indeed! Occasionally, the angle will be off and the shell will break, shattering hope and all the neatly secured appearances of a truly fragile existence. Unlike Humpty Dumpty, though, parents of medically fragile kids will pick themselves up and put themselves back together again.