Sounds of a Sleeping Child

I'm sitting in Parker's room watching him sleep, listening to the rhythm of his breathing, and feeling quite blessed that there are no other sounds except the noise from the table top fan which is a constant presence. There are no beep, beep, beeps and click, click, clicks of the heart monitor. No whooshing of the ventilator he was hooked up to when his lungs failed last year. And on this floor there are no bugle sounds which means another patient has stopped breathing. Just the sounds of my son sleeping peacefully.

The surgery went as well as they had had hoped. Before the surgery he had a 13" circle where the skin graft and mesh covered up the opening in his abdomen. (See April 12-May 21st posts for all the gory details of his surgeries last year). Two surgeons worked on him yesterday, Dr. Garcia who was his primary surgeon last year, and Dr. Turner who was the plastic surgeon who did the skin graft in July.

Yesterday they removed the old mesh, cleaned out the scar tissue from all the procedures last year, sliced his six-pack muscles horizontally and slid them over in front of his stomach. They used a collagen mesh material (no, they ended up not using the pig and human cadaver dermis), pulled his abdomen back into place and stitched it all up from the inside out. So now instead of the big circle of skin graft on his belly, he has a 1" wide scar down his front about 15" from top to bottom. Kind of like a zipper.

He is still sad over the loss of his belly button, but maybe we can make one for him like you do for a teddy bear. Parker said only aliens don't have belly buttons. But to be honest, what he has now is going to be so much easier to look at than the huge skin graft he's had since July.

And there I go sounding so ungrateful, worrying about appearance. I'm not ungrateful. In fact, I am so grateful he lived I have changed my entire life. This event has changed me, changed my life (www.literacyforhope.org), changed both my sons, and I am told has changed almost everyone who knows Parker. It is a miracle he is alive, a miracle and a blessing.

Yesterday when he first got up to his regular room from post-surgery, he got teary eyed and his first words to me were, "We did it Mom. It's over! We're done!" We both cried. It has been such a long journey.

His second words were, "Oh *#$%!!! This hurts!"

Yes, it is going to hurt. A lot. But he is alive. Thank you God. My son lives.

Prayers

Parker's big abdominal repair surgery is being done a week from tomorrow. We are all nervous yet excited, relieved yet anxious. But one thing I know without any hesitation is that we continue to be so grateful for his life, and humbled by the efforts and work going into getting his body 100% healthy again.

Please keep us in your prayers once again. Thank you!

Full Circle

On January 24th I will return to Austin for Parker's final big abdominal repair surgery. We hope it is his final surgery, but as this last year has shown us, expect the worst, hope for the best.

Parker will be back to work and ready to start his life again exactly one year after this ordeal started. Full circle.

After he has recovered, I will move to Bay Head to care for my elderly parents. It might be for 6-8 months, it might be permanently. There is so much to do to help them, and while leaving my home, my friends and my life in MD was one of the hardest decisions I have ever had to make, it was also the easiest. A no brainer. These are my parents, and they need me.

As I said to my Dad, "Isn't this the way it works? When I am young you change my diapers, then when you are old I change yours?" We both got a chuckle out of that.

In the middle of all this, James is planning a move to Austin sometime in the next few weeks, hopefully to get there before Parker's surgery. It is time for him to move away, as well. He and Parker are so close, that was a real no brainer, too. Their love for each other shines a bright light in the middle of everything else about my life.

There is a lot of stress and organizational details to be worked out and very limited time in which to accomplish it all. But after what we have been through this past year, it will be a walk in the park. Regardless, prayers are always helpful. :-)

Midnight New Year's Eve

When the clock struck twelve and we entered 2010, Parker and I were both crying. All I could think was, "We made it!"

Ode to Mom and Dad

Not bad for a couple of old folks in their 80's, eh? That's my Mom and Dad. My Dad is 84 and has two kinds of cancer which he has miraculously made temporarily disappear. My Mom is 82 and still hopes to dance in the living room if my Dad can ever remember to come when she calls. :-)

My father is a retired advertising man who was a Managing Director of Ogilvy and Mather, where he worked for almost 30 years. That was back when being an ad man was a good thing. During the Camelot years, as they call them. He taught me about honor, and about how to use my curiosity to keep learning, and how to use that learning to develop tolerance and compassion. That is the legacy he will leave behind when he goes.

My mother was a concert pianist before she married and had a family of six kids. Yes, S-I-X! When I think about how hard it is to raise one or two children, I am filled with more admiration for her than I can possibly express. She did it with her eye focused on our becoming good, educated, healthy, talented and productive adults. She never once let her guard down, and if you look at my family you will see her work continues to this day.

I think it is fair to say her job was more important than my father's, although without his we wouldn't have had the music lessons, the sports, nights at the opera or symphony, or the lovely home with a library filled with books and music.

This post wasn't what I sat down to write, but as a writer I know, sometimes you just have to let the juju work and it will be good. Here is why I ended up writing about them. I was thinking about how Parker's final surgery has been postponed to February. Then I was thinking about the blessings that have occurred in my life as a result of that terrible, horrific time spent earlier this year while he critically ill.

Then I thought about how over the past few weeks I have had two complete strangers email me after they found this blog. One had a father, another a husband who was someones son, who were in the midst of very similar experiences with severe pancreatitis. They wrote to tell me my writing had given them peace and comfort and hope. I can't even express to you what that meant to me, to Parker and to James. That what we endured made a positive difference to someone else.

Then I started thinking about the Literacy for Hope Project that was born from my need to do something to give back after what we went through. I thought of how excited my 82 year old mother is to be a part of this, how it has given her a new purpose when she really needed to feel needed again. And I thought about how I will take her on my birthday next week to deliver books to a homeless shelter in New Jersey, because that is how I want to spend my birthday.

And then I thought about how it was my parents who gave me the ability to get so much joy from spending my birthday that way, and I realized how incredibly lucky I was to have those two people, with all their flaws, and all their dedication, at the helm while I was growing up.

Thanks Mom and Dad. It made a difference.
P.S. I just realized with surprise that today is the 14th, which is the 8 month anniversary of the first time the doctors told me to say goodbye to my son. For the first time since then, I didn't spend the days before this with that burning feeling in the pit of my gut. In fact, I might not have even remembered if I hadn't been writing this post.

Blessings

As I watch this year draw to a close I am tempted to give it a swift kick in the rear. This was not an easy year. But sitting this morning ready to write and listening to Let There Be Peace On Earth, I realize it has been a year filled with more blessings than angst, hidden in the layers of torment. Through quiet reflection I understand I have much to be thankful for.

~ My father lived another year with two kinds of cancer.

~ My mother put away the demons that have made parts of her life so agonizing.

~ My oldest son survived when the doctors said he wouldn’t, and I will spend Christmas night with him.

~ My younger son showed incredible depth of character, lifting me up with surprising strength when I needed him most, and I will spend Christmas morning with him.

~ My breast biopsy was negative.

~ Complete strangers reached out and surrounded me with love during the darkest hour of my life.

~ I lost my job which humbled me and opened many doors to new opportunities.

~ I followed a calling and started an organization that will bring hope to the homeless through the gift of books.

~ I made friends with people across the country who have touched my life with wonder.

~ I rediscovered the gifts of my siblings and put to rest the burdens of the past.

~ I reconnected with God, who sat by my son’s bedside while his brother and I cried, then took our hands and walked beside us every step of the way.

Thank you God, for all these blessings that have given new purpose to my life. Thank you for the gifts of my family, the love of my two sons, and the hope I hold in my hands. I am one lucky girl.

The Literacy for Hope Project

I knew it would come to me, I knew one morning I would wake up and would know what it was I was supposed to do. I am so proud of the result and the work ahead of me, and all the possibilities that that can come from The Literacy for Hope Project.

Below is what I wrote this morning to post on the web site to explain to people who don't know me how this all came about. Please check out the web site: www.literacyforhope.org.

Two things happened in the last few years that brought this project to life. First, I interviewed a woman for a position at my job who had a touching story to tell. Karen was modestly dressed, literate, drove a car, had two children and a husband who worked full time. Unfortunately she didn’t have the necessary skills and I wasn’t able to hire her. But in the course of her interview we began talking and what she said astounded me.

Karen and her family had been homeless the entire time her children were in high school. No one knew, which made the kids lives even more awkward as they tried maintain friendships without revealing their secret. Living in a county where the median income is $76,000 per year, and with their combined incomes of less than $35,000, it took them four years and the generosity of a stranger to help them climb out of homelessness.

I was very touched by Karen’s courage and endurance and what I perceived to be the uniqueness of her situation. In fact I was so moved I made the main character of the novel I was writing a young homeless girl.

This past year my older son spent 4 ½ months in a hospital in TX, eight of those weeks clinging to life in the Critical Care Unit. I lived in the ICU waiting room for many weeks, praying, writing a blog and finishing my novel.

During that time I made friends with a homeless man who showed up a few minutes after 6:00am every day and poured himself a cup of coffee. He was so thin he had to hold his pants up when he walked. I knew he had to be hungry, and while there were many days I lived on peanut butter and graham crackers from the ICU refrigerator, I started leaving him granola bars propped up against the coffee pot. The first time he looked over at me and I nodded. He grabbed the bar and his coffee and left without saying a word.

I left him granola bars everyday, or sometimes when I didn’t have any money I left him the peanut butter and crackers the nurses had given me. He never said a word. One day when he lay his back pack down on the counter, it fell open and I saw a stack of books inside. I thought that was rather curious, but since my perception of the homeless had already changed by Karen’s story, this just added another dimension.

A few weeks went by and one morning the security guard said to me, Lady, don’t feed the homeless.

He isn’t like a wild animal you know, he’s a human, and he’s hungry, I said. By this time my son was getting better and I knew we would be moving out of ICU within a few days, so I kept leaving the granola bars.

On the last day I left the granola bar sitting on top of two books. One was s from Obama’s Dreams from My Father, and the other a more sophisticated book called Angle of Repose. My friend came in, saw the books, looked at me and I nodded. He read the titles and then walked to my table where I was writing and laid Angle of Repose in front of me.

I’ve already read this one. Thank you, he said. Then he turned and left.

That was the last time I ever saw him.

When you go through a life altering experience like my sons and I did, when you think you are going to lose your life, or your child, or your brother, something happens and all the rules change. Normal is redefined. All three of us came away with a strong sense we needed to do something to give back in a way that could be magnificent. We didn’t know what it might be, but I had faith we would be led in the right direction.

Because of our belief in the power of books I wanted to use the written word as a vehicle to offer hope to the weary. The fact that doing this could make even a tiny dent in the decline in book sales our country has experienced over the last few years is an added bonus. It's a win-win proposition.

We have been enormously happy at the response we’ve had in such a short time. It shows a genuine benevolence from people who understand the power of making a difference, one book at a time.

Thank you for your interest. Keep reading, and remember “There but for the grace of God go I.”