Time Just To Be

I went to a Knitting Convention last week.  It was called Stitches.  While I've been knitting for nearly nine years I've never thought of myself as one who would go to a convention just for knitting.  I mean, what would I do all day?  I'm not much for sitting in a class of a hundred and learning how to form the toe of a sock (although now that I want to make socks I see that it would be a good thing to know). And really, how long can you look at yarn?  (It turns out you can look at yarn all day.)   But it wasn't the yarn that really appealed to me it was the time away.

I left on Friday afternoon and returned on Sunday.  I spent three days and two nights without having to be MOM.  Now I love being a mom.  I am at my core a nurturer and the joy that I get in helping my children grow and seeing my son progress is something that I never quite experienced in my work.  But when you spend your days caring for others, especially those that need a lot of care, you can forget to care for yourself.  Your identity becomes wrapped up in the other.  I am Mom, Matteo's Mom and Malia's Mom.  I am rarely just Genevieve.  This was my time to just be me.

When I left the house on Friday I told myself that for the next few days I would not worry about the kids, Patrick is a more than capable father.  I would not worry about my friends with me at the conference, they are all capable adults.  I would not rush or worry about being at the right place at the right time or seeing everything.  I would take my time and enjoy each moment.  If I missed a beautiful skein of hand-dyed yarn it would be ok.  There would be more yarn next year.  And as you can see I found plenty of beautiful hand-dyed yarn.

It was easier than I thought to let go of being Mom for a few days.  I left the worry and stress that goes with it at home and for three whole days I was just me.  I was still a mother, you can never give that up, but I was also a knitter, a friend and a woman.  I was able to visit with those parts of me that aren't wrapped up in being Mom.  It was refreshing.  I came back happy and recharged.  It reminded me of the importance of taking time  just to be.  I will endeavor to visit with me more often and not wait until the next knitting convention comes along.  I will take more time just to be.

Outwardly Mobile

Thank you! Thank you for all of the encouraging words and comments.  Knowing that my blog is appreciated helps me keep writing.  I'm going to ask (a bit self-consciously) that if you like my blog you please share it with friends who might like it also?  Thank you.

Last week Matteo tried out an assisted walker for the first time.  It enables him to get the idea and motion of walking without having to balance at the same time.  He did really well in therapy, so we were able to bring it home for the week.  It's been a great week!

Matteo has always loved to be outside.  No matter where we are, if there's a door, he's heading for it.  But, being outside with him has meant him sitting in the stroller or crawling on the grass.  While he loves the stroller,  it doesn't do much for getting out his boundless energy.  And while the grass is fun to touch feel and eat, he is always trying to crawl to the driveway which is really hard on his knees.  I was thrilled to try out the walker.  So, while the rest of the country has been snowed in, we've had spring-like weather all week.  It's been a perfect time to get out.

I think my expectations may have been a bit high on our first outing.  Somewhere in my mind I envisioned us walking up the street, visiting a neighbor and maybe having a nice stroll around the block.  Reality was somewhat different.  We went for a 45-minute outing and got all the way to the corner and back. We live one house from the corner.  That means we averaged one house every 22 minutes, give or take.  At that rate our stroll around the block would be an all-day affair.  While we wouldn't win any races, Matteo had a wonderful time.  He laughed every time the wind blew his hair and did a little dance when a car went by.  It was magical to see him so happy.

The best day came on Sunday.  We went to our neighbors' house to watch the Super Bowl.  They have a long, flat and gated driveway that's perfect for little ones to ride their scooters and tricycles up and down.  Matteo had his walker and for the first time he was able to interact with the other kids.  He laughed when they wheeled around him and followed after as best he could.  He was so happy!  It also gave me some relief.  I didn't have to carry him or follow after him as he crawled around the house.  He could play and I could visit with friends. In many ways it lifted a burden from my shoulders and allowed me to just be me.  We had a great day!

Matteo's Resolutions

Last week I wrote about my three resolutions for the year, so this week it's time for Matteo's.  Since Matteo is not quite speaking yet, I've had to guess at what he'd resolve to do this year.  Here are his (my) three:

1.    I will sit unsupported.  In June of last year Matteo's rehabilitation doctor told me that 80% of children who sit unsupported by the age of two will walk.  The likelihood of walking then drops to 20% for children who don't sit by age four.   Right now, at 18 months, Matteo can sit only for short periods of time before falling over.  His difficulty stems from very tight hamstrings, hips and adductors.  Most of his therapy centers on stretching out those muscles and improving his balance.  We have a lot of work to do to get his muscles relaxed and stretched so that he can straighten both legs at once.  This is our number one goal this year.

2.    I will use a spoon.  Matteo would much rather be served than serve himself.  He's very content to just open his maw and wait for the food to arrive.  This is not what I have in mind for the next several years.   His Occupational Therapist has a plan.  It involves a strap that goes around his hand and holds a neoprene tube that I can slide a spoon into.  That way when he lets go of the spoon the spoon stays in his hand.  In theory it works great.  Not so in practice.  Matteo, in this short week, has learned that when I say "give me your hand" he hides both hands under the tray of his highchair.  On the rare times that I can get the contraption on he has learned that if he slides his hand across the edge of his tray it pops off.  Then he opens his mouth and waits for the food.  But, we are resolved to use a spoon.  Or, I am resolved that he will use a spoon.

3.    I will say "mama" or some semblance of the "m" and "ah" sounds together.  Is this too much to ask?  I take care of him all day, change his diapers, feed him, bathe him and all I ask is to hear this sound pointed in my direction.  Instead my husband, after watching him for a few paltry hours on the weekend, says that Matteo is saying "papa" every time he leaves the room.  I go away for a few hours and he's saying papa.  I almost cried. (Note:  I should say at this point that my darling husband gets up in the morning, changes him and gets our daughter ready for and to school while I sit in bed with the cup of tea that he brings me every morning.  If you know my family you will know that I am just carrying on a tradition started by my Great Aunt Una.)  But, really that's no reason for his first word to be papa and not mama. Words will come next, and hopefully soon because the whole screaming thing is getting old.

Matteo and I have a lot to work on this year but I am confident that with daily practice and perseverance we will meet all of his resolutions this year.  I hope you can meet yours.

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.

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.