Kids Say The Darndest Things

Computer technology can be wonderful and maddening.  This week it's been maddening. In the midst of writing this post my 5 year-old computer gave up the ghost.  Try as I might, I could not get everything working.  Fortunately I have another laptop computer, a donation from my Dad.  It works well if you don't count the fact that the screen is broken.  But, I was able to hook it up to an old desktop screen that I have and now (six days later) I'm back in business.

While I generally write about my journey with my son Matteo, occasionally my daughter Malia says, or does, something that I just have to share.  This was one of those weeks.  My daughter Malia is generally described as a "lovely girl."  And she is.  She can be the sweetest most generous eight-year-old you've ever met.  She has no lack of self-esteem and is confident in her ability to express herself.  This she does often, or more precisely, whenever she is awake.  Malia loves sound and is happy to supply it when it is in deficit, like when I'm sitting quietly with a cup of tea.  She talks, sings, hums, drums, taps and has now taken up playing the violin.  She is a whirlwind of sound and energy.  She also says the darndest things.

Malia is in third-grade, and this week announced that she was selected to be on the student council for her grade.  She was thrilled to be part of the group that decides when "crazy hair day" or "wear your pajamas to school day" will be.  I asked her how they select kids for student council at her school.  This is what she said:

             "Well my teacher picks the two smartest kids in our grade.  But they weren't available, so me and (friend who won't be named) are doing it."

Really?  The two smartest kids weren't available so Malia got it?  How does a mother respond to that?  Now it's true that Malia is not the smartest kid in the grade.  She still struggles with math and it's also true that "being the best" is not her goal.  Still, I was surprised by her frank admission.  In deference to her teacher, I'm sure that she did not put it this way when she picked my daughter for student council.  But still she was very proud of herself so Patrick and I did our best not to laugh.

As I said, Malia still struggles with math.  Her teacher has been working with her and has asked us to  concentrate on her multiplication.  So, every night for the last few weeks we've been going over the multiplication tables.  I thought she was finally getting them memorized.  I was wrong.  Every week they have a test that checks their understanding.  This week Malia said she did really well on the writing.  "Great!" I said.  "How was the math?"  This is what she said:

           "It was good, but I still have to work on my multiplication."          
So I asked her which multiplication tables she still needed some help on.  Her answer:

          "Well, mostly the bigger numbers like 5 to 12.  And the 3's.  I'm good with the 4's."

Ok, so at least she's got the 0's, 1's, 2's and 4's. Only nine more to learn.  (sigh!!)  I suppose honesty is a good thing.

When it comes to boys honesty is a very good thing.  Which leads me to the thing I most did not expect to hear:

         "Mom, (boy who won't be named) gave me this note.  He wants to go on a date!  I said yes."

What?  A date?  This was very unexpected.  So I asked Malia what a date was, given that she's 8.  This is what she said:

         "You know Mom, it's what teenagers do."

I am sure that the image in her mind is vastly different than the image in my mind.  But just to be positive that we were on the same page I informed Malia that she was welcome to go on a "play date" with him to get an ice cream and sit in the plaza with us and his parents.  She then informed me that it was not a date if parents were there.  I informed her that it was not a "date" and parents would always be there.  I am totally not ready for this growing up thing.  Fortunately the talk of "date" disappeared right after Valentines Day.  Thank God, because I am not ready for this growing up thing!

This weekend I am off to a Knitting Convention.  I've never been to one, but I am going with twelve friends from my knitting group and NO CHILDREN!  I am looking forward to a weekend of just being me!

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!

Going Up the Down Escalator

You know when you have one of those weeks that is so rough that you breath a sigh of relief when it's over? That was last week. Nothing terrible happened - just a whole lot of little things that could have been terrible. It felt like I was trying to go up the down escalator. In fact, life feels a lot like that right now. But some weeks it seems like the escalator is going down faster, leaving me running just to stay in the same place.

The week started with an upper-respiratory cold running through the family, leaving us cranky and achy. Then my husband's asthma-like symptoms flared up, sending him into coughing fits, and gasping to the doctor. Wednesday evening, my School Board meeting went on for 4 1/2 hours. The following morning I did the 6 hour trip down to Matteo's urologist and back. And then, to top off the week, our car (the one we rely on) had a spectacular overheat as Patrick was getting off the freeway.

In many ways we were lucky. Yes, lucky. Everyone got over the cold and no school or work was missed. Kaiser gave Patrick an inhaler and told him that he may not have full-blown asthma and he should hopefully start to feel better. While the school board meeting was long, the district finances are getting better and the community is getting more involved in what's going on in our schools. On Thursday we saw the urologist for a 30 second check up to see how everything was doing after Matteo's October surgery. Matteo had surgery to correct his undescended testicles (a fairly common occurrence in premature babies). And while a 140 mile trip is long for a 30 second appointment, it wouldn't have seemed so long if the doctor had found something wrong - which he didn't. Finally by some luck when the coolant and oil sprayed all over the inside of the hood, the engine did not seize.

By the time my Saturday morning knitting group rolled around, I was feeling pretty sorry for myself. It was there that I ran into a friend that I hadn't seen for a while. She and I met when my daughter and her son were in Kindergarten. She has a special-needs child whose needs exceed those of Matteo. While she was still sorting out his needs, she developed cancer. A terrible reaction to the treatment left her with constant, intense pain and almost took her life. The pain keeps her from sleeping and her ongoing treatments leave her exhausted. I was astonished on Saturday when even with everything she was going through, she was so concerned about me and my struggles. Reality Check. How can I waste time feeling sorry for myself. I may be going up the down escalator, but while I'm jogging, my valiant friend is at a full-out sprint. And she's not giving up! I know that I'm not giving up either. At some point I'll get to the top of that escalator. I don't know when and I don't know what's at the top. I do know that the trip will leave me changed -- for better or for worse is up to me.

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.