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.