Tuesday, January 26, 2010

Heartache 101

Meet Ethan Conner, my first grandson. Pictured in his wheelchair (I'm holding his hands), as a baby, and in his Halloween pirate costume.

At two years of age Ethan had a seizure and stopped breathing in his daddy's arms. He was clinically dead for several minutes. They got him breathing again in the ambulance. They lost him once more at Children's Hospital but brought him back. He was in a coma. I was there when they told his parents he would be a vegetable if he ever woke up. The brain damage was too severe.

I am doing my best to make a rather involved and tragic long story short.

Ethan had been misdiagnosed. After making so much progress he had another seizure after he had been home for a few months. He was rushed to a different Children’s Hospital. This time they got it right. Funny, this new group of doctors knew what the problem was straight away. The ventricles of his heart weren’t working, so they installed a defibrillator. Which was akin to closing the barn door after the cows had gotten out. The poor little guy had suffered even more brain damage. All the progress he had made was virtually erased. When it comes to writing about my grandson and what happened to him I am reduced to a puddle of emotion. It’s beyond difficult, trying to express the heartache of watching a child you love go through so much pain and agony. Not to mention the suffering of his mom and dad, and extended family members.

He can’t sit up on his own. He has a permanent feeding tube and has to wear diapers. He’s going to turn five in April. He loves to listen to Curious George and Sesame Street, as his vision is impaired. They really can’t determine just what he can and can’t see. Therapy has been cut off because of the budget cuts in California. He does go to school five days a week.

He has problems with extreme pain in his legs due to atrophy, and mucus is a constant problem.

But he’s here. With us. Now.

I don't suppose it's surprising that I’m fed up with shallow people, people that complain all the time about trivial matters, people that are self-centered and petty. When I'm exposed to such people I can’t help but think about Ethan’s mother and his maternal grandparents. You see, my son, and Ethan’s mother had a fling, they were together a very short while. In fact, she didn’t know she was pregnant. Seemed she was on some sort of experimental birth control and it took the doctor’s several months to figure out why she was so sick, that she was actually growing a human being inside her. My son didn’t find out until she was eight months along. He offered to marry her, but she didn’t want to get married. She didn’t want him to have much to do with the process at all. Later on, after Ethan was born and a few months old, she eventually consented to let him take the baby at regular intervals. I think it dawned on her that it wasn’t going to be so easy to raise a child on her own.

The reason I have come to admire Ethan’s mother and her parents (until all this happened to Ethan I didn’t know them at all) is because I have never met such selfless, wonderful people before. Taking care of Ethan is a twenty-four hour a day job. And the entire family accomplishes this without protest, with love in their hearts. As he gets older it becomes more difficult to manage his needs and they never complain.

I’m driving up to see him this Friday. They live about seventy miles away. I’ll post a new picture and you’ll be able so see how big he is now. Their whole family is made up of super-sized people, on both sides, so he’s getting huge! I can't even pick him up and he doesn't fit on my lap.

Until my late forties, tragedy had never really found me. Then all hell broke loose. I had to take care of my father as he deteriorated from heart disease and Alzheimer’s. My stepmother was a juvenile diabetic with myriads of health problems, and she could no longer drive so I had to take her numerous doctor appointments several times a month. As her illness progressed, her own kids were conveniently MIA, so I had to take care of her, and she eventually died in my guest room of breast cancer. I was holding one of her frail hands and Dad was holding the other, when she went. It was not a pretty death. Then came Ethan’s calamity. Dad died a little over a year ago, and that was not a pretty death either.

I have become intimately acquainted with sorrow and loss—and it’s changed me immensely. For the better. I wake up and I am happy to be here. I strive to see the beauty around me. There is no time for whining. I strive to be like Ethan’s family when I grow up.

All Rights Reserved. © 2009 by Elizabeth Bradley.


L.T. Elliot said...

I'm both awed and humbled. Kudos to you for seeing beauty like this--in others, in yourself, in hard situations. My heart is with you and Ethan and I'll pray for your family.

Elspeth Antonelli said...

We have had a rather dark saying going around this house lately: "It's all death, all the time." My kids' grandmother finally succumbed to Alzheimer's about a month ago. Another family member lost her battle with breast cancer last week.

Sometimes you just want to scream 'enough already!'

Ethan's family has my endless admiration. I don't think I have a good enough soul.

Becca's Dirt said...

Wow what a load to carry. You have certainly had more than your share. You are a special lady to look past it all and to take care of so many. What a sweetie Ethan must be. I have a grandson - Ethan - who is a special needs child.

I am praying for Ethan and for you sweetie. Can't wait to see

Angie Ledbetter said...

We're walking similar paths. It's hard, but you're exactly right, there's no time for whining. Humor and gratitude are CHOICES we make. Great post. Beautiful child. :)

Helen Ginger said...

Ethan is so beautiful. I love his smile.

It seems the older we each get, the more pain we experience in our lives. The more heartache and tragedy...the stronger we become. Doesn't mean it's less painful. Does make us value life, family, love, and friends more than ever.

Thank you for sharing this with us.

Straight From Hel

Kim said...

Oh I'm so glad he has a wonderful support system. I just can't imagine and you are right it takes truly selfless people to raise this child. He is as cute as a button! Looking forward to seeing more pics and hearing an update.

Joanne said...

You and your family have travelled such a difficult road, yet your inspiration that shines through is commendable. You mention how his family is made up of super-sized people ... In heart, as well. Enjoy your visit.

Stacy Post said...

I'm not surprised by your super-sized heart, Lizzy. :)

Enjoy your visit with Ethan. He's a lucky kid to have lots of caring people to be with him. Many blessings to you and your extended family!

lakeviewer said...

Beautiful child; wonderful resilient families here. God bless you all.

She Writes said...

This had me in tears immediately. It is humbling to be reminded of the true heartache some of us carry.

Sometimes we don't know what is in someone until they are in their hardest days, and sometimes it turns out they are beautiful and that is what rises.

staceyjwarner said...

Bless you and thank you for sharing such a personal story...Ethan is beautiful and I'm sorry for all the loss you've had over the recent years...

much love

Jemi Fraser said...

What a cutie! Love the pirate outfit!

I'm glad Ethan has such wonderful people surrounding him. He's brought joy to many and has received love. Lucky boy in spite of the difficulties. Good luck & take care.

Elizabeth Spann Craig/Riley Adams said...

Ethan is beautiful, Elizabeth. And he's so fortunate to have such a loving, caring family around him.

You're so right...life's too short to be petty. Every day is a gift. Thanks for the reminder and know I'm thinking of you and your family...and Ethan.

Mystery Writing is Murder

ellen abbott said...

How heartbreaking. I am amazed and awed at the love and devotion and selfishly count my blessings.

Fireblossom said...

Nothing I can say will be adequate. But I wanted you to know that I was here, reading, and caring about you and yours.

Cloudia said...

Truly inspiring.

Thank you for shining so brightly!

Aloha, Friend!

Comfort Spiral

Lori said...

We all do. When we grow up or when it comes to us. Sometimes grief strikes like that, in a number of subsequent blows, one after the other. I feel scared and in awe of people who rise higher in grief, more beautiful than ever before.

colbymarshall said...

So sorry your family is going through such a rough time. Will be thinking about you guys.

Marguerite said...

Ethan is such a beautiful child. He looks like an angel in the pirate costume. It is so wonderful that his Mom's family can provide such loving care for him. Blessings to all of you, my friend.

Alix said...

No death is ever pretty, but life on the other hand...

Your little Ethan is just the most precious little thing. Those sparkling eyes! That smile! Those dimples!! I cannot even imagine the work and commitment and perseverance required just to keep his little body working and as comfortable as possible. It touched me not only that Ethan's mother and maternal grandparents are so dedicated to the little guy, but that you ALL are. Ethan may have had a rocky start and may have significant limitations throughout his lifetime, but he will never lack for love.

When you wrote this: "Until my late forties, tragedy had never really found me. Then all hell broke loose," it gave me pause. I too have been so lucky up until now. Have had very little death and loss to deal with - which of course is a double edged sword because someday it might all come at once and I will hardly be prepared for it.

Here's hoping we wring out all the joy we can in the meantime. Lots of love to you Elizabeth and to adorable Ethan. And thank you for this beautiful story.

Nezzy said...

Ethan is just a little doll. You must have great peace in your heart knowing how well he is loved an taken care of. This Ozarks farm chick knows first hand how a sick child will put thing into perspective. Our baby girl, now 35, spent most of her first year in intensive care, the many procedures and surgeries during her growing years.

We were thrown into elder care with aging parents several years ago so I retired from my Special Ed classroom to be available. It's hard an as life consuming as a ill child.

I admire you for finding the beauty. From the hills and hollers of the Missouri Ponderosa, ya'll have a wonderfully blessed day!!!

The Victorian Parlor said...


This is such a beautiful and touching post. Ethan is adorable and I can't wait to see some updated pictures of him. I work with chidlren like Ethan and they are truly beautiful, loving kids. They are like angels on earth and they can teach us so much.



Mr. Shife said...

A very inspiring and beautiful post. Thank you for sharing. Ethan is a beautiful little boy and he is blessed to have some wonderful people in his life. I am sure everyone feels blessed to have that little man in their lives as well. And thank you for reminding of what is really important in life and getting past the silly little things that bog us down for no reason. Enjoy your visit and take care.

Nezzy said...

I just wanted to thank you for popin' over and hoppin' on my blog. I sure hope you enjoy the ride.

God bless and in the words of old Granny Clampett," ya'll come back now, ya hear!!!"

Hilary said...

I'm so happy to know that Ethan has such wonderful parents and grandparents. What a beautiful boy. I'll send my best healing thoughts his way.

♥ Boomer ♥ said...

Absolutely beautiful -- both the boy and the post. The tenderness in his face. The trust. The truth that life is not fair at all.

Journaling Woman said...

My heart is breaking for you. My heart is rejoicing for Ethan's life. He has the best people around him. And I bet he is very happy. He looks it.

He is so precious. Can't wait to see the new pictures and to hear your experience with your little man.

Praying for strength and wisdom for all of you.


Cheryl said...

Argh, I admit I was one of those people going on about trivial matters yesterday. Put myself into a really good funk, grieving friends I've had to distance myself from and feeling very lonely as a result. Depression and anger has infected some in my circle with a vengeance and over what? Age, a job one hates, no job, not enough money, too out of shape, too many wrinkles, or because one is still single. I want to shake them, tell them to snap out of it. It's all temporary, the wrong perspective, blessings in disguise, excuses not to try.

Your post puts it all into perfect perspective. If I bought into the way my friends who are depressed think, I would be in bed curled up and with no hope. But there's so much to look forward to! Just being alive is enough to make one happy (esp. after a mild heart attack). Ethan's family is amazing, a lesson in how to love and how to face life. Love and hugs to you, xx

Angie Muresan said...

Oh, Elizabeth. Words fail me. Ethan's story moved me to tears. What a beautiful boy he is!

Cricket said...

Hi Elizabeth,

Thanks for your several visits. I'm trying to make the rounds. So many blogs, so little time...

Of course, I never know what I'm getting into until I click. Wow. What a post. I could attempt a comment but I have nothing to tell you that you don't already know. God bless you and your family.

Respectfully Yours,