Child Who Can Not Talk

A year and a half ago, I read this poem on a friend of a friend's blog.  Their unbelievably precious little one has a fairly uncommon genetic disorder as well.  Although they have stopped posting on their blog, I do think of this family often and of this beautiful poem they posted.  I think I posted part of this before, and now it resonates with me as much or more than it did 18 months ago. 

The Child Who Can Not Talk

I am the child who can not talk.

You often pity me, I see it in your eyes.

You wonder how much I am aware of - I see that as well.

I am aware of much - whether you are happy or sad or fearful,

patient or impatient, full of love and desire,

or if you are just doing your duty by me.

I marvel at your frustration, knowing mine to be far greater,

for I cannot express myself or my needs as you do.

You cannot conceive my isolation, so complete it is at times.

I do not gift you with clever conversation, cute remarks to be laughed over and repeated.

I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world about me.

I do not give you rewards as defined by the world's standards -

great strides in development that you can credit yourself.

I do not give you understanding as you know it.

What I give you is so much more valuable - I give you instead opportunities.

Opportunities to discover the depth of your character, not mine;

the depth of your love, your commitment, your patience, your abilities;

the opportunity to explore your spirit more deeply than you imagined possible.

I drive you further than you would ever go on your own,

working harder, seeking answers to your many questions with no answers.

I am the child who cannot talk.

I am the child who cannot walk.

The world seems to pass me by.

You see the longing in my eyes to get out of this chair,

to run and play like other children.

There is much you take for granted.

I want the toys on the shelf, I need to go to the bathroom, oh I've dropped my fork again.

I am dependent on you in these ways. 

My gift to you is to make you more aware of your great fortune,

your healthy back and legs, your ability to do for yourself.

Sometimes people appear not to notice me; I always notice them.

I feel not so much envy as desire, desire to stand upright,

to put one foot in front of the other, to be independent.

I give you awareness.

I am the child who cannot walk.

I am the special child.

I don't learn easily, if you judge me by the world's measuring stick,

what I do know is infinite joy in simple things.

I am not burdened as you are with the strifes and conflicts of a more complicated life.

My gift to you is to grant you the freedom to enjoy things as a child,

to teach you how much your arms around me mean,

to give you love.

I give you the gift of simplicity.

I am the special child.

I am the special child.

I am your teacher.

If you allow me, I will teach you what is really important in life.

I will give you and teach you unconditional love.

I gift you with my innocent trust, my dependency upon you.

I teach you about how precious this life is and about not taking things for granted.

I teach you about forgetting your own needs and desires and dreams.

I teach you giving.

Most of all I teach you hope and faith.

I am the special child.

- Author Unknown

ENT Last 2011 Hurrah

Today we had an ENT visit.  As the 4 of us waited for an hour to see the doctor, I was so very thankful for the fact that we see fewer doctors these days!  Though, it was nice to see all the office staff at the Health Center.  For a while we were seeing them almost daily and I think its been at least since the summer since we were there.  They are so sweet to us, and they love on Matthew.  

Anyway, the ENT visit today was to check on the warts in Alyssa's nose. They are back, and they need to be removed.  So, Alyssa will undergo the 6th Hoy House ENT procedure this year on November 29.  The 6-- (1) Matthew tubes, (2) Matthew nasal fracture repair/hospital stay for extended croup, (3) Matthew throat scope, (4) Alyssa nose warts, (5) Jackson tonsils and now (6) Alyssa nose warts again.  I am only half joking when I say that we are helping the ENT buy a new car this year. 

We hit our family out of pocket maximum this year in July (thanks to my appendicitis), so if it needs to be done, our thinking is that it should be done now, rather than waiting for the new year and a new deductible...hence scheduling it the week after Thanksgiving.   While we were there, the doctor looked in Matthew's ears to check on the tubes.  The tubes are perfectly in place, but Mattie has an active infection in his right ear again (or still).  Much to Matthew's dislike, the ENT suctioned some very nasty stuff his ear and gave us the antibiotic drops which will hopefully clear it up!  All in all, productive afternoon at the ENT.

We Are Blessed

We Are Those People

Every year, we feel rushed after Thanksgiving to get in the Christmas spirit.  It takes us a while to get our tree up, the house decorated, and then it feels like as soon as we do, it is time to take it all down.  So, this year, in hopes of being able to really enjoy the holidays, we are following in the footsteps of all the department stores and prepping for Christmas before Thanksgiving.  Yep, we are those people.  And in Houston, we were decorating the tree when it was 85 degrees outside.

Big bonus of the kids getting older-- they decorated the tree!
(at least from 4 ft high and down)

Broke the Seal

For the last almost 6 years, we have avoided Chuck E Cheese with our kids.  We have received at least an invite or 2 a year, and up to this point, we had ignored it completely...until Saturday.  A family friend was having her 5th birthday at CEC, and we wanted to celebrate with her and figured now was as good of time as any to break the seal.  As I remembered, the pizza was a little on the cardboard side and the big rat is a little on the scary side, but what I had totally forgotten is how very much kids love that place.  They rode on a virutal roller coaster, played air hockey, enjoyed the age appropriate video games, and were joyous turning in their tickets for little plastic stuff, all in addition to pizza and cake with the birthday girl.  Even Matthew had a grand time.  It was great to experience it through their eyes.  I'd even go back!

Jackson and Matthew on the virtual roller coaster.

Alyssa is not ready to drive!

Rainy Day

Life isn't always rainbows and sunshine. Today was a rainy day, both literally and figuratively. 

Our house hasn't adjusted to the time change well.  Matthew is coming down with a cold and is all out of sorts.  Alyssa and Jackson have been bickering what seems non-stop.  I had a student blame me for their cheating.  Matthew's CO2 levels were low at his horrible blood draw last week, so we will have to do yet another blood draw.  We are missing our friend and cousin, Jenn, who passed 2 years ago today after losing her battle with ovarian cancer. 

I was being sad as I started dinner and then realized how very blessed we are.  We all will adjust to the time change.  Matthew is fighting a common cold...a very typical illness that will likely not land him in the hospital.  That is good!  Alyssa and Jackson, although bickering a lot, are also being very affectionate to one another.  They call the other 'best friend'.  I have 1 difficult student...out of 90.  Good ratio!  Matthew's low CO2 level may be a result of lab error, which although annoying, is just that.  And we will forever miss our cousin and friend, but are forever thankful that she was a bright light in our lives.  And Jenn connected us forever to some of the most amazing people in our lives.  We are so very blessed! 

So every day isn't sunny, but you need at least a few drops of rain to get a rainbow!

More Happiness

This last week and weekend was full of goodness...albeit mixed in with the usual dose of crazy town (population 5).

-Alyssa has her first loose tooth. She's beyond excited.

-Matthew's receptive language is really improving. I can give him simple instructions...and he follows them.  "Take this object to that person"...and he does it!  Very exciting stuff!

-Jackson has been ultra-loving of late.  Random hugs, 'I love you'-s, pats on the back, etc.  He's always been a very affectionate kid, but now is even more so. 

-We have been so pleased with our new child care arrangements!  Matthew and Jackson both seem to be getting what they need, and to top it off, calculating the costs, we saved a few dollars to boot!  

-Matthew has been partaking in verbal play (back and forth, mimicking sounds) and activity imitation (if I'm holding the phone to my ear and then hand it to him, he'll put it up to his ear).  Big stuff!

-Darren's job is going well.  It always makes for a happier home when what you do 1/2 of your awake time (or more) is going well!

-Only 4 more weeks plus finals left for this semester.  Like many things, while in the midst of the semester, time seemed to be crawling but now looking back, I can't believe how fast it has gone.  I do love teaching!

-I got a call from Dr. T's office today, asking if I would talk to a mom concerned about her daughter's upcoming craniosynostosis surgery. I'm excited to be able to share our experience, to hopefully ease a little of the anxiety I remember all too well.  I love the fact that Matthew is a success story!