Puzzled

A Christmas wish for peace, for the pain to lessen, and be filled with happy memories. We have opted out of a celebration this year, no decorations, no family gatherings, no gifts. Just the two of us, David and I, working a puzzle in unison, neither feeling the need to talk, appreciating the silent reprieve which allows us to grieve together. I wish there was such as thing as true bereavement leave. I'm not talking about taking a day or week off work to plan a service. I'm thinking more like the three months or more someone can take off work after having a baby. I would love nothing more than to hide out in a remote cabin in the mountains somewhere far away, to escape the forward movement of time for awhile, returning when I'm ready not when someone says my time has run out.



Ninety to Nothin'

It feels like forever and yesterday all at the same time. In our house time stands still... we still have poster size cut outs of Cooper lining the walls of our living room from Cooper's service, his bathroom and bedroom remain unchanged, and his car seat is still visible in my rear view mirror. Outside our walls it feels like everyone is moving forward, ready or not. Everything still feels upside-down most of the time. Old routines just don't feel right without Cooper and it hurts to create new ones without him.

He has been gone a month.

Signs Everywhere

Wednesday was hard, harder than most days. I have yet to find the word which adequately describes the emptiness. I park the car and automatically open the back door, reaching for Cooper, but he isn't there. To take Abbi for a walk leaves my hands searching for the stroller and Cooper's face looking back at me. The day is no longer full of therapy, floor time, meds and feedings. We still say goodnight to Cooper every night, but there is no more bath or bedtime routine. Each day is just another day. 

For some crazy reason I thought it would feel better, maybe even good, to put Cooper's crib back in his room. The DME company came to pick up all of the borrowed medical equipment on Tuesday and I wanted his room to feel like it did before the gm1 became more intense. Once we had the twin beds back in the guest room, the crib in Cooper's room and the doors back on their hinges, I knew it was wrong. I was thankful for David's patience and that he just quietly helped me put it back the way Cooper left it. 
This week I tried out an adult horseback riding class. For one hour it felt good to focus on the movements of the horse and let go of my thoughts. On my way home I was flooded with memories of Cooper riding with me on his first birthday and the look of content and enjoyment on his face when riding (hippotherapy) with Mrs Jennifer. 

This morning I woke up longing for morning time snuggles and the smell of last night's bath. What I wouldn't give to feel the weight of his body in my arms and his head on my chest. 

Little reminders of Cooper are everywhere... the bluejay feather we found on a walk, the butterflies that tease each other above our swing, the dragonfly that welcomed me home from the grocery store... maybe it's just me missing him so badly which makes me hold onto this feeling that everything has a deeper meaning. It certainly helps me get through the day to think so, even if it sounds a little crazy. Maybe it's all perspective, seeing what we want to see, but at times those little reminders make me smile so I'm not going to analyze it.

The other day I went to visit Cooper at the Gardens and just as I was sitting down a little frog popped up! It surprised me a little but then it just sat with me as if to say don't worry, he's never alone. Cooper's little frog was still there when I left.



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.

Angel Wings

Cooper peacefully earned his wings this afternoon as the three of us sat on the swing under our tree in the backyard. We were talking and rocking, and he just decided it was time. We are so thankful that he chose the time and place. It couldn't have happened that way if we'd planned it... just as it should be.

Goodnight Cooper. We love you.

Baby Book Remodel

I am often asked "how are you doing?," and occasionally my stock answer doesn't cut it because that question is followed by "no, how are you Really doing?" So, here goes...

I was looking around Cooper's room while he was getting a vest treatment and found myself staring at his baby book. The realization hit me that I haven't picked it up or looked at it since the day he was diagnosed. I can't believe it's been almost a year. How can one little book bring back so much? It was all part of planning for our baby to be. I remember how excited I was when we found it... the perfect book to document our adventures... full of milestones, firsts, favorites and room for lots of pictures. It even matched the theme of his room; a room decorated with bugs and trees, bold classic colors in the likeness of Eric Carle and all things boy.





When we created his room I imagined him climbing trees, camping out, fishing with David... I could just picture it. I picked up his baby book this morning and started flipping through it. His NICU pictures are there and the pages signed by all the nurses who took care of him in the moments after he was born. His tiny little footprints and the festive name tag that claimed his spot in the nursery. Pictures of putting Cooper in the car seat for our long awaited trip home from the hospital. The story of 'Our first night home'... we had bad storms and tornadoes in the area... I called the NICU and asked if we could come back! After that page I'm at a loss. It's blank. The next section is full of milestones and firsts... things like rolled over, held a bottle, sat up, waved, clapped, crawled. I think it's true that grieving begins the day you get the diagnosis. For us, for Cooper, these pages are somewhat a reflection of our reality and they will never be completed.


There is one page near the end of the book titled 'Keeping You Healthy' which leaves a two line space for First doctor visit, Immunizations and Tests, Illnesses and Mishaps. I don't really know what to do with this section either because there aren't enough pages. I am seriously thinking about sitting down with my label maker and creating new titles because we still have adventures and milestones, even if they aren't the ones we imagined.

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.