Abundant Peace

Thursday was Thanksgiving Day here in the States. Like other days of thanks around the world it is a time to gather with family and friends and eat and drink ourselves into a happy stupor. This we did! It is also a day to remember the gifts in our lives for which we are thankful. This year our 8 year old Malia and the daughter of some good friends drew a banner with the many things they are thankful for. The banner was covered with cute, happy animals and written prominently in the middle were the words "Abandon Peace, Abandon Mercy." Really? These were not the sentiments I had expected. So, I asked my daughter how she picked them. She said, very proudly, "This was the song we sang this morning at church." It took me a few moments of thought before I realized the song that she was referring to was "Abundant Peace, Abundant Mercy." "Yes," she said "that one." I suppose the choir will have to work on our clear pronunciation.

After the friends were off to their homes and the dishes were put away, I started thinking about what I was thankful for this year. Of course there are the obvious: family who are so supportive, friends who surprise me with their care and health which has stayed strong. But, since starting this blog I've begun thinking about those things we truly take for granted, the ones that we don't realize we have until we really need them.

So, this year I am thankful for courage to face the unknown, hope in my darkest hour and faith that with one foot in front of the other I will get to the other side.

My Knight in Plastic Armor

Raising children is definitely a lesson in patience and perseverance. But, I thought that my job was to be the teacher, the wise sage that helped my kids through life, that is until I actually had kids. Now I'm learning that I am very much the student and there's so much to learn.

Our September trip to the Pediatric Orthopedist revealed that although his hips were in better alignment, Matteo's scoliosis had worsened. I always thought of scoliosis as something that happens to you when you get old, or at least older. Not so. In my son's case the low tone in his torso has impacted the strength in his muscles such that they allow his spine to curve in an "S" shape from left to right. In order to stabilize his spine while the back muscles are strengthening, our doctor prescribed a soft brace for him to wear while he sleeps. Now a soft brace doesn't sound so bad, so I was a bit puzzled when the doctor started going on about how it was natural for it to take several weeks before a child will wear a brace all night. If he woke up every few hours I should take it off and if he absolutely refused to wear it we would do something else.

As the doctor went on with the difficulties of getting a toddler to wear said brace, my puzzlement turned into worry. Was I going to be fighting Matteo every night? He's a good sleeper and will sleep 11 hours at night. These 11 hours are like gold! They allow me to get things done and get a good night sleep myself. The thought of giving them up, and replacing them with crankiness put me on edge. But I told myself, if it helps - that's what we'll do.

More than a month later, Matteo and I were driving back down to Oakland to pick up the brace and get it fitted. If you've never seen a brace like this before, which I hadn't, it comes as a bit of a surprise. The name "soft brace" is a bit of a misnomer. It certainly has a thin soft foam liner. But it most resembles a flesh-colored suit of armor that covers the entire torso from the hips to the arm pits. It is made as a single piece with an opening in the back that securely closes with three large velcro strips. As we fitted it on my son, I started to worry about getting him to sleep in something so heavy and confining. I just couldn't see how a 16 month old would tolerate it all night.

Driving the hour and a half back home, I started to fear that my sleep would be permanently disrupted and my happy baby would become a cranky baby. Fear changes you as it takes up residence in your heart. It creates worry and anxiety that would not otherwise exist. Worst of all, my fear would have no effect on how Matteo slept except in the case that he picked up on my anxiety.

When it came time to putting the brace on Matteo, I was surprised when he really didn't seem to mind. It's not that he just put up with it. He really didn't mind at all. He just smiled up at me and gave his usual giggle as he tries to wriggle off the changing table. When I put him into bed he went straight to sleep. I guess in my fear I had forgotten about the angel that I have in Matteo. Matteo takes everything in stride with a smile and a laugh. There is no fear in him about the future, he lives only for today and loves every minute. In many ways, Matteo is the teacher in this journey. I hope I can learn all the lessons.

Going Postal

First off, I want to thank all of the people who have been so supportive of this blog. It's encouraging to hear from so many people. Thank you!

Sometimes things happen in your day that reminds you that what you think of as normal is not other peoples "normal." For me it happened in the post office this week.

One of Matteo's on-going issues is excessive spitting up. I say it's an issue because it's an issue for me, he doesn't mind at all and rarely even notices. I notice! I've never been good with bodily fluids. I'm just not that kind of mother. But after 16 months of being spit up upon several times a day, you get a bit desensitized.

Most parents are familiar with newborns spitting up, which usually does not last very long. But in Matteo's case he has two things working against him. First, he was born 6 weeks prematurely, so the muscles that regulate his stomach (chiefly the pylorus) were not mature at birth. This causes food to stay in his stomach longer than normal and to digest more slowly. Second, Matteo has what is called low tone in his trunk. Low tone is lower than normal reflexes and is common in Cerebral Palsy children. This manifests in low muscle strength, not just in his back and chest, but in all the muscles from shoulder to hip. The muscles that regulate his stomach and esophagus are maturing much more slowly than normal. All this leads to a lot of food going in the wrong direction.

Over the last 16 months I've worked hard "fix" this problem. I'm a mom and an engineer, I like to fix things. I've tried all sorts of things: soy, no soy, lactose-free, milk-based, solid food, liquid food, small meals and big, and the list goes on. Nothing I've done has made much difference. So slowly, ever so slowly, I've realized that I can not affect his spitting up. With the Gastroenterologist's help, I can lower his acid level. But the fix can come only with time and maturity - things over which I have no control. I've had to let it go and give up my worry and anxiety about this one thing. It's harder than it sounds, to let go. There is a very real liberation in accepting that when there is nothing that you can affect, you must let the stress go. I have, and I feel better for it.

Now, back to the post office. Matteo and I were in line when it occurred to me that I didn't have a burp cloth, just in case. (Note to self: just because you've let it go doesn't mean you shouldn't be prepared!) That's when it happened. I heard the little sound that sometimes precedes the spit up and I caught it with the only thing I had - my hand. Fortunately it wasn't more than a hand-full, but I couldn't go up to the counter like this, and there were no bathrooms. Something had to be sacrificed. It turned out to be Matteo's sweatshirt, which after wiping my hand I promptly took off of him and turned inside out. And then I continued on like nothing had happened, like this sort of thing happens every day because it does. I posted my envelopes and carried out my child desperately hoping that nobody saw our little incident.

As I got behind the wheel of the car, I realized this doesn't happen to most people. This isn't a normal occurrence in the lives of most parents. But, my life isn't "normal" anymore and that's ok. My life is happy and that's what really matters.

A Place To Start

It has taken a full year of friends and family telling me that I should write down my experiences to get to the point of creating a blog. At first, I thought I'd keep a journal, but I've never really been the type to write in a journal, although I've had several over the years. They all end up with three full pages of writing in the front and blank pages to the end. A blog is more my speed; it's more useful. I like useful. My hope is that this will be both cathartic for me and helpful for other parents who are dealing with the disability, disease or chronic illness of a child. And maybe just helpful for people who sometimes wonder how to get through this thing we call life.

I suppose, since this is the first post, I should tell you who I am and how I got to today.

My name is Genevieve. I have two children and a wonderful husband. I have done many things in my life: I've been an automotive engineer in Dearborn, MI, a project engineer in Portland, OR, and a winemaker, consultant and business owner in Healdsburg, CA. But my biggest challenge came the day that my youngest child, Matteo, was born on July 9, 2009. This was the start of my journey with a child with Cerebral Palsy. Cerebral Palsy is a motor condition that occurs because of damage to the motor center of the brain. It can happen before birth or after. In my son's case the damage was done in utero. CP encompasses a large range of disabilities from severely disabled, to mild disability. Matteo is blessed to be on the mild side of that scale.

It has taken visits to eight pediatric specialists over the course of a year to get to the diagnosis of Cerebral Palsy. But now all his physicians agree that his condition is most likely CP. I say most likely because the diagnosis can only be confirmed with an MRI of the brain which is done around the 18th month. There is some comfort in a diagnosis, though, because now I have some idea what we're dealing with. But what awaits us ahead is unknown. All the questions a parent would normally ask "When will he walk?", "When will he start talking?" become "Will he walk?", "Will he be able to talk?" And, the answers are "We will have to wait and see."

So, we are on a journey, Matteo and I. I'm sure the journey will have it's ups and downs and I'll learn a lot along the way. I hope what I learn can be helpful for others and that writing my journey down will help me get through the rough spots so that the ups can truly be enjoyed.