"The only way out is through"

As I was sifting through old boxes, playing a game of keep or toss, I came across a stack of calendar scraps saved from years ago. A little 2005 square Mary Engelbreit desktop calendar, drawings with accompanying quotes to be torn off as the days go by. I don't know if I believe in coincidence anymore. Irony and deeply layered meanings, yes, I see it everywhere. Even in the form of a quote which surfaces the moment inspiration and soothing words are needed. Distracted from sorting, I absorb the pages, reading between the lines, dissecting text as if it were freshman literature. In the absence of an ocean, some words roll off the tongue and wash over us providing a similar comfort, renewal, and empowerment to take another step forward.

"Be not the slave of your own past ~ plunge into the sublime seas, dive deep, and swim far, so you shall come back with self-respect, with new power, with an advanced experience, that shall explain and overlook the old." Ralph Waldo Emerson

"To see a world in a grain of sand & heaven in a wildflower, hold infinity in the palm of your hand & eternity in an hour." William Blake

"The only way out is through." Robert Frost

I wonder if there really is another end of grief, a way out, a way through. It's hard to imagine my days without grief, but then again it was impossible to imagine life without Cooper. Why is it so hard to let go. I don't think letting go of grief is synonymous with letting go of memories, but I'm having a hard time picturing it. I can't quite wrap my head around it.

Blink

Four years old in heaven today. It still feels as if I'm caught in a time warp, a wrinkle. His blankets have lost their scent & I can no longer feel the weight of his body in my arms. I can't imagine what he would have been like at age four. I see my friend's children at this age and try to picture Cooper running around, talking, playing, eating off my plate, but the image just isn't there.

Yet, in this space between yesterday and years ago our memories with him are very real and I find myself hanging onto them, gripping tightly.

ONE

TWO

THREE

FOUR

Happy Birthday baby boy.

Sitting. Thinking. Waiting.

My Grandmother "Mawmaw Eva" is dying.

She is 94 years old. Nearing the end of life is not a surprise, but I am so sad she will be gone. She called me her namesake, Eva Michelle, and liked to use my full name often. We lived with her for a short time when I was young and I have lots of happy memories helping in the kitchen, snuggling up in her lap, reading stories, and taking naps or as she called it "resting our eyes." Mawmaw was the greatest nap partner because she didn't sneak away after I fell asleep. She actually napped with me and I loved that we would wake up together. Even now, all I want to do is whisper for her to scooch her over so I can lay beside her, staying there until she wakes up, but I know I can't make that promise.






She doesn't have the strength to say much and what is said lacks context. Staring in the direction of the window she asked "will he be there?" I don't know to whom or where she was referring, perhaps her late husband (Pawpaw) Doyle, her son (Uncle) Van, her great-grandson Cooper, her brothers, her friends, or even God? I have no idea, but yes, I'm sure he will be there.

She is and has been such an important influence in my life, present for so many milestones. I am elated that she was able attend birthdays, violin concerts, graduations, to know my husband, witness our wedding, hold her great-grand baby.

Grandma, Michelle, Mawmaw

Mawmaw & Cooper

Her breathing has slowed and I know she and Cooper will be together in heaven soon.

I went to visit the Gardens today, to sit on the rocks next to Cooper's spot. It is always so peaceful there and with much on my mind was a great place to just be. I was reminded instantly why we chose this place for his ashes. One of my favorite things is just past the roses and over the creek. There stands a statue of a family and a father holding up his son playfully. Reminds me of someone.




It feels strange to see her stepping out of this life and into heaven. There is so much about dying that I associate with Cooper and it brings all those memories rushing back. The smell of oxygen on her breath, making sure she's comfortable, pain free, lips aren't too dry, no bed sores or skin breakdown behind her ears where the cannula sits, listening to her breathe. It's all so familiar and not so scary this time around. I know what to expect and that makes me feel somewhat hardened.

During our visit Mawmaw kept trying to sing something and no one could figure out what song it was. She loves gospel music and hymns and since then I've had the children's bible song stuck in my head... Deep and Wide, Deep and Wide, There's a fountain flowing deep and wide.

I love you deep and wide Mawmaw. It's ok to rest your eyes, he will be there.

Mother's Day

For me it feels complicated and confusing, unsure if I still belong amid this hallmark day. A reminiscent, joyful, memorable, bittersweet, significant day. I remember the excitement, anticipating Cooper's arrival. I was going to be a mom and what an amazing high to think that this was the first of many Mother's days to come. I don't know if there is an antonym to describe the polar opposite of "on cloud 9," but I certainly felt it the following year. Devastating, yes, yet unable to derail the unconditional, unending love that is motherhood.

I don't fit into the commercial mold that is Mother's Day and have been struggling with this question of identity since Cooper passed away.  I came across a blog post by Carmen's Mom, Lana, that had me in tears yesterday as she has so eloquently shared her experience, feelings which mirror my own.

Blessed Are Those Who Mourn (on Mother’s Day)
May 8, 2011 in Lana's Journal

This post is dedicated to all the moms out there who have lost babies through miscarriage and still birth, lost children young and old, and had failed adoptions. Special hugs today to the moms who have lost their only children and find themselves in the strange place of being both a mom and childless. You ARE a mom.

To all the women who have never been able to have children and find this day especially painful, my heart goes out to you.

Blessed are those who mourn, for they will be comforted. Matthew 5:4

***

Nine years ago, Dave and I were visiting relatives on Mother’s Day. I had recently suffered my second miscarriage and was feeling vulnerable and emotional on the day dedicated to moms. As we sat in church that Sunday morning, I was hoping that the pastor wouldn’t make a big deal about all the moms. I thought I might sink into the ground when he asked all the moms to stand up and the ushers passed out pens decorated with flowers and “Happy Mother’s Day.” Everyone smiled and clapped. I was on the verge of tears.
As soon as the service ended, my father-in-law disappeared. A few minutes later he came back into the sanctuary, handed me one of the Mother’s Day pens and said, “You are a mom. I want you to have this.”

I felt like a mom but I didn’t think anyone else viewed me as one.

But someone did.

Thank you Doug.

Since that day, I’ve never been able to fully enjoy Mother’s Day. I feel for all the women who are hurting on that day.

And now I’ve joined another group of women, those who have loved, cared for and said goodbye to their child or children way too early.

Today is my first Mother’s Day since Carmen passed away.

I have my two bundles of joy who will make this day extra special. Lauren will be ecstatic to give me her Mother’s Day school project and the present I bought for myself but that she thinks Daddy bought (hee, hee!). Hope will be her usual ball of energy and exuberance. And Dave will do all sorts of things to make the day wonderful for me.

I am thankful.

But someone is missing.

Etymology

Lack of a word for bereaved parents has become a perseveration and just this morning it occurred to me, perhaps there hasn't been the need for such a definition until now. The word orphan for example dates back to the late 1400's, and it appears the term orphanage wasn't documented until the late 1800's amid the industrial revolution. What to call an institute for parentless children seemingly created out of necessity for the time. Even more recent words like parentcraft from the 1930's evolved into parenting, which wasn't recognized until the 1950's. I know, fully aware of my geek out moment and moving on.

I was thinking about the mortality rate of children during or within a year of childbirth 20, 50, 100 years ago and how our expectation of life saving measures morph in perpetual motion with medical advancement. As our knowledge of disease and genetics improve so does the potential treatment. In this day and age it's hard to imagine that yes, there are still diseases, conditions, syndromes, without a cure. I think about my grandparents who grew up on farms and their understanding of death at such an early age. The circle of life was a fact of life, may not have made it any easier to cope with loss, but it wasn't a shocking or unprecedented event either. As we become more urbanized, sheltered from the throws of nature, I'm willing to bet more people look to "The Lion King" for explanation rather than draw from an actual experience with death. Yes, bereaved parents are less and less common {thankfully}, which also means fewer people are able to relate. A vicious cycle.

If trends in music, mashups, create new sounds by blending pre-recorded tracks together, surely there is a similar market for new words too. So here goes. 

Starting with the definition: 

bereaved parent, to mourn the death of a child

Origins: 

Bereaved from Latin orbus, Greek orphos "bereft" and PIE (Finnish) orbh "to change allegiance, to pass from one status to another." 

Parent from Latin parentem (parens, pare) "to bring forth, give birth to, produce."

Mourn from Old Norse murna "to grieve over the dead," PIE (Finnish) smer "to remember," and mer "to die, wither." 

Possible Words: 

Parorbus

Paromer

Parormer

Parorm

Parorhm

Parorphem

Who Am I



I often wondered about my role, my title, my purpose since Cooper passed away. In the years before Cooper, I would have described myself as a confident twenty-something, a wife, aspiring to do good in the world, following my dreams and creating a family. I turned 30 the year Cooper was born, and my ideallic swan-dive into motherhood looked more more like a cannon-ball. After a long stay in the NICU we managed, as most new families do, to find our own rhythm and jump back in to the hustle and bustle. It was when Cooper was 10 months old that he was diagnosed with an incurable and fatal childhood disease. All of our planning for the future; moving to a "good" school district, dreaming of a house on acreage for Cooper to run and play, only to learn that he would never walk and he wouldn't be alive long enough to ever attend school. Enter the first of many waves of grief, loss of a future with our son. At that moment, however; he was still alive and I was still his mother. We were incredibly blessed to have Cooper with us for 2 years and 11 days.

Now that he is gone, I wonder, am I still a mother? Those who lose a spouse become widows, and those who lose a parent become orphans. What becomes of a parent who loses a child?

When we meet new people and someone inevitably asks, "So, do you have kids" sometimes I freeze up, unsure of what to say. I don't always feel comfortable saying (some version of) "No, he passed away" because experience has taught me most people either instinctively withdrawal, feeling badly that they have asked in the first place, or become curious as to the cause of his death. I once tried to just say, "No, I don't have any children." Instant pangs of guilt ensued as if I had completely denied his existence which felt worse than the latter. Sometimes I wish I could respond with "No, I am a ____" and then divert the conversation elsewhere without having to go into a long explanation, but I am left searching for a word. Of course, I am {was} more than just Cooper's mother and he is {was} a gianormous part of me. That piece of me is missing and no one knows what to call it.

Today I am a childless mother taking it one day at a time, trying to remember who I was in order to learn who I have become.

Silent Night

This post was also shared as an article on Hello Grief

My mother gave me a ticket for tonight's Christmas Sing Along with the Symphony. This was her second year to sing with the choir and she was so excited. I was happy to go, excited about singing some old favorites and who knows, maybe it would help my Christmas spirit. The music was wonderful and the atmosphere inspiring. There were people of all ages singing, laughing. When the orchestra began to play "Frosty the Snowman" a person dressed as a Snowman came out into the audience. The kids went nuts, rushing down the isles to see him and parents were snapping pictures like crazy people, and then it hit me. It hit me that Cooper would be 3 1/2 years old at this very moment, just like the little ones clamoring to meet Frosty, just like the little boy sitting behind me saying "look mommy!" My throat started to get that hard to swallow feeling and the silent tears began to fall. I was never more thankful to move on to the next song, to see Frosty exit, and the children to return to their seats. During the next few numbers I was able to pull it together and enjoy the music - 12 Days of Christmas, Rudolph the Red Nosed Reindeer, a reading of The Night Before Christmas, Silent Night. Oh, Silent Night and here come the tears. I just can't control it. I have no control over my emotions and I fear I will not be able to sit through Silent Night anytime soon. It's not that I in any way compare my son to baby Jesus, it's just the soft, somber, reflective tone of the hymn and the first verse which stirs me up. Even as I type, my eyes well up. Again.

Silent night, holy night
All is calm and all is bright
Round yon virgin mother and child
Holy infant so tender and mild
Sleep in heavenly peace
Sleep in heavenly peace

At this moment, it reminds me of Cooper's passing and not the birth of Jesus. It scares me that I felt like I had pulled myself together for awhile and now, suddenly, it feels as if I'm falling apart all over again.

This would be the point where I reason with myself and try to balance my emotions with logic. The reality, yes, Cooper would have been 3 1/2, but not like the other children who were running around tonight. Cooper could not walk, or talk and he would not ever have had that ability. He had a progressive disease which does get worse over time, not better. Cooper died peacefully and I was ready to let him go, it was time, but that doesn't make me miss him any less. It's been one year, and I have to remind myself that it has ONLY been one year. There have been so many positive things that came from Cooper's life. I try so hard to focus on the good stuff and most of the time I feel like I do a pretty good job of it. Tonight is just one of those nights.

Last year my husband and I didn't "do" Christmas. We did put up the tree and our stockings, but we didn't go crazy with decorations. We didn't buy gifts or even go to either of our families homes. Instead, we both took some time off and put together a puzzle of the beach because it reminded us of our last trip with Cooper. I'm sure it sounds lame, but it was what worked for us. Christmas is a lot harder this year than I expected it to be. It's hard to be out there finding a way to be okay everyday. It's exhausting.

Sandscript

I love to write. It helps me release the adrenalin born with a new thought. I suppose writing in the sand has become my own variation of message in a bottle. I'm able to let it out and let it go.

The last trip we took with Cooper was to the beach in celebration of his second birthday. On the last day of our trip David, Cooper and I took pictures of our feet in the sand; our little family of three. We wrote Cooper's name in the sand and said goodbye to the beach. It was later that day when we arrived home, not yet unpacked, Cooper turned shades of blue all the way down to his belly button. He stopped breathing for five minutes. It was terrifying and we thought he had earned his wings at that very moment. I started to cry, holding him in the rocking chair with David kneeling beside us. Cooper took in a giant gasp and started to breathe again on his own. He stayed with us for eight more days. In a quiet moment of retreat, David, Cooper and I were swinging under the tree in our backyard. It was there that Cooper peacefully took his last breath.













Writing Cooper's name in the sand has stuck with me. Perhaps that day was a bridge connecting one chapter to another. Something we did only once together, yet a way to continue to remember. If I'm holding onto something, I feel like I can write it in the sand and let the waves literally wash it way. The waves, symbolic messengers that will carry my thoughts to the point where the water meets the sky.


I have been fortunate to visit the beach a few times since then, but never put the messages together until today.  By starting with Cooper's name it's much like the beginning of a letter, waiting to be written.

The Roller Coaster & the Theme Park

So many of us, parents of a child with progressive disease, refer to our daily existence as a roller coaster ride which given some thought, is very fitting - the constant ups and downs, unexpected twists and turns, sudden loops, dips, and maybe even a brief pause when you think that last drop had to have been the biggest only to learn that there is another and another and then it stops. It stops abruptly. It jolts you forward, slamming you into the safety harness, but your adrenaline is still pumping as you try to figure out which way is up. Your knuckles are white from holding on so tight. Someone releases the safety harness and although you don't know how, it happened none the less. You are free to go, but still you sit, dazed. There is a lot of confusion, clusters of people getting off and new people getting on. You slowly stand up, legs feeling like jello and heart racing. When you got on the ride, you knew it would end, but ride itself is a blur with random moments of clarity. You wonder where you're supposed to go now. Some follow the arrows, some ask for directions, and some seek out those who have who have been on the ride before. Somehow, we all end up corralled in the same gift shop looking at the pictures from each strategically placed camera. Our priceless expressions come into view on the monitor for all to see and a momentary glimpse of the ride has been capsulated in time.

And there it ends, right? The ride is over, the story has ended, but you realize that you're still at the theme park. When does this place close? Where is the exit? You consider the options; try again, try a different ride, maybe you find a park employee and let them know you are lost or just sit tight and wait until it's time to go.

Quiet Celebration

In anticipation of Cooper's 3rd Birthday and the 1st anniversary of earning his wings, I was fortunate to be granted a few weeks off work. We headed for the solace of the sand, the waves, the breeze, and the fish. David and I spent Cooper's birthday in Cabo, and went on a snorkeling adventure. We visited the place where the Sea of Cortez meets the Pacific Ocean, saw manta rays, a guitar shark, dolphins, held a few starfish and swam with hundreds of fluorescent fish. It feels weird to call it a "celebration" without Cooper here to actually be turning 3. We wrote Cooper a birthday message in the sand which quickly washed away by the gianormous crashing waves, as if the ocean were the messenger. Our adventure seemed more reflective of the things reminding us of our little boy, a quiet celebration, and that felt good.





Today has been a year, one whole year, since Cooper earned his angel wings. It was hard to sleep last night just thinking of how different things were on this day, down to the hours. Images of what we were doing the night before he died drift in and out of my mind; David, Cooper, and I had all taken up camp in our living room sleeping together in shifts on the hide-a-bed because it was easier to access the oxygen concentrator and the kitchen for mixing meds. It's still all very surreal. We choose to focus the good times, and the happy moments, so today is especially hard because it's the day our light went out.
It will be a hard day, but I know we will get through it. These are the memories that hurt, yet they are the memories that compel us to live each day to the fullest, for Cooper.

A full moon every night. Goodnight Moon, Goodnight Cooper

Peace & Wonder

Approaching One Year

It is only the beginning of June, and I'm sure these next two months will bring out the emotions in all of us. May was rough enough on it's own and I must say that I was glad to see the month come to an end. I expected that the one year anniversaries would be hard, but I didn't expect to feel knocked off my feet. It's not like we didn't know it was coming, yet the lull wasn't long enough between waves to stand back up. Every week in May revealed a giant waving red flag reminding us that Cooper was gone.

May is a pretty rough month for us. It has been two years since Cooper was diagnosed with GM1 and as much as I'd like to, I will never forget that day. Last year we held the first ever Cooper's Quest event and it was the only one Cooper would be alive for. One year ago, on Memorial Day, was the last time we heard Cooper laugh out loud. I think that because laughter as a first was so significant, it makes the last time much more poignant. It's one of my most favorite and coveted memories, to think Cooper so giggly over silliest sounds and noises. He would laugh so hard pausing only long enough for you to do it again and again creating a never ending cycle of laughter.

Oh month of May
You burn, you sting, you left a scar.  

Diagnosis Day lay stagnant,
within these walls of May.  

Two Mother's Days I had with you,
and now there are no more.  

A founding quest amongst these Days,
bittersweet memories.  

Memorial Day on summer breeze, a smile, a laugh, the last of these. 

All these memories are still so close to the surface and I find myself still trying to obtain that elusive {balance}. A way to grieve and the space to feel sad while relishing the joy he brought to our lives. I still try to live life to the fullest even in his absence, one of the top lessons learned from my little one. Most days the good memories take over and I find myself remembering laughs, and hugs, a family surrounded in love.

Memory Quilt

We received a beautiful memory quilt on Saturday from Over the Top Quilting and the timing could not have been more perfect! We will be moving the week following Mother's Day and I have been really apprehensive about packing up Cooper's room.





It will feel so strange to live in a new place that Cooper never knew, but it doesn't feel right to put his room back together in a new place either. There were certain pieces of clothing and bedding that were just so Cooper and I couldn't imagine passing them on to someone else. Taking those pieces and turning them into a quilt has kind of created an adult size security blanket. I can't stop touching the blocks or running my fingers over all of the loopty-loos! The whimsical stitching reminds me of a roller-coaster, which is more than fitting. When I'm all snuggled up it almost feels like I'm just hanging out in his room.

I think that all quilts tell a story and this one certainly doesn't lack in content as it was created from Cooper's t-shirts, onesies, socks, diaper covers, his bath towels, sheets, crib skirt, and even the dragonflies off of his baby mobile. Chris and Susan handled Cooper's things with such respect and care, and I was so touched by their genuine interest in his life. They have done a remarkable job! As I wrap myself up in memories so many different things seemingly jump off the quilt... of course there are the obvious things like where we went or what we experienced, but there are also things that no one else would know like how many different brands of shirts we had to try before finding one with a big enough neck hole to fit over his head! There's the mobile that I just had to have for Cooper's room which wouldn't you know, was backordered. It finally arrived in the mail two days before Cooper was born. All of these little things bring on the happy tears, laughter, the warm and fuzzies and memories that will forever be a part of us.

Chris and Susan blog about the stories behind the quilts they make. They recently posted more pictures and a bit about the creation that has become Cooper's Quilt.

Nostalgia

January 8th marked six months since Cooper has been gone. In my nostalgia I started flipping through pictures and was honestly shocked at how fast everything changed. Some days it feels as if 10 years have passed me by and I'm still trying to figure out what happened during all that time. This picture of our happy little boy was taken January 2009, just one year ago. He was 18 months old; eating gourmet purees by mouth, smiling, laughing, and cooing. He was so expressive and still had the ability to wave his arms and kick his feet when he was excited. His eyes were so bright. He could still see and turn his head toward things of interest. If someone would have asked at the time this picture was taken ... I never would have guessed that within a month Cooper would have lost the ability to swallow; that the NG tube feedings, respiratory issues, and seizures would follow so closely or he would be gone 6 months later.  Looking at these pictures from one year ago, I am reminded of all the little things, laying outside under the trees, dancing to silly music, splashing in the bath, bouncing and marching around the house, the hours spent rocking in the rocking chair. He loved to be snuggled up close to me in the sling/carrier while I vacuumed the house and I think about that every time I pull out the vacuum. I could go on and on, but my ultimate thought is that the good memories outweigh the bad ones by a mile and short of a cure, I wouldn't change a minute of it for anything.

Over the weekend we went to visit Cooper's spot, as we so often do. It always feels good to just go and sit for a little while and listen to the creek. I have been trying to sort through the "storage room" where we have all of Cooper's therapeutic equipment along with the baby gear, car seats, strollers, etc. Last week we emptied Cooper's drawers and put all of his clothes in storage bins. I though it would be a lot harder than it was, so I guess that means it was time. I kind of rationalized with myself (big surprise!) that he would have outgrown them by now anyway. Only now the drawers will stay empty instead of being replenished with the next size up.

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.

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.