Saturday, December 31, 2011

Happy 7th Birthday to the Hoy House!

To celebrate our 7th year as the Hoy House, we visited the Downtown Aquarium on Thursday. Alyssa and Jackson have gone before with their Aunt Marilyn and Uncle Steve, and since they enjoyed it so much, we thought it would be fun to have dinner there for our family birthday.  It was fantastic and we didn't even get a chance to do all of the activities.  The tank in the restaurant was amazing.  The kids were enamored with the fish that was as big as Darren and the sting rays that had spots like a cheetah.  The food was good, and we all enjoyed the cheesecake and raspberry sherbert dessert (even Matthew)!  And to end the evening, Alyssa, Jackson and Darren took a ride on the ferris wheel.  Great fun!
The visit to the aquarium was made richer with the kids affection for Finding Nemo.
What a difference a year has made.
Last year, Mattie slept through the dinner, and this year, definitely not!

Big smiles all around!
Jackson ate butter directly from the dish.
The little face you see is Jackson peering down at Matthew and me.

Friday, December 30, 2011

Hand Surgery Postponed

Matthew has to be healthy for 2 week before hand surgery. We knew this would be a challenge, especially in winter.  Matthew hasn't been well for 2 weeks in a row since mid-October. Exactly 2 weeks before the January 6th surgery date, Matthew started coming down with a cold...and then a stomach bug...and then an eye infection...and then an ear infection...and finally a sinus infection.  He hasn't been able to shake it in the week since.  Hand surgery is an elective surgery and thankfully is not time sensitive.  So, we have postponed surgery and our pediatrician is working with us on a medication plan to hopefully get and keep Matthew well.  The new date is February 3 and we pray he will get and stay well for it!  
Matthew's beautiful 4 fingered hands.

Thursday, December 29, 2011

Random Holiday Bits

When the kids would ask about Matthew's lack of thumbs, we would say "that is how God made him."  On Christmas morning, sitting down at breakfast, Alyssa asked me "why did God give Matthew only 4 fingers when everyone else has 5?" My response--"I don't know, honey. I don't know.", but Darren's was much better--"That must be all he needs".

Alyssa went around Christmas Eve and Christmas day singing "All I want for Christmas is my 3 front teeth".  She lost her 3rd tooth on Christmas Eve Eve.  She has a few more loose, but if she loses anymore, she'll be able to stick her tongue out without opening her teeth.

Jackson has been all about Christmas.  Every day for the past 2 weeks he has gone around wishing us a Merry Christmas.  He only wants to watch Christmas shows (Prep and Landing I and II being the favorites) and he loves turning on the Christmas tree lights.  He might be a little morose when we put away the Christmas decorations in a few days.

Matthew loves music.  Lately, he will crawl over to the piano, pull up on the piano bench, and touch the keys.  He also picked up Jackson's recorder on Christmas day and began whistling into it.  He also loves to 'dance'.  Watching him move his head to music makes me so thankful that his hearing improved!

Matthew got me a present this year. He started making the mmmmm sound.  He might not be calling out 'mommy' yet, but I am now certain he will in time.

The kids loved all of their Christmas bounty and more so, we had so much fun being with each other and family.

Wednesday, December 28, 2011

My Favorite Images

These are some of my favorite images from the past week.

Alyssa in her Xmas dress (sewn by Grandma Joy)
Jackson proving that all you really need for fun is the box the toys came in.
I love watching my Dad play with the kids.  He is an amazing Granddad.
If this vacuum was the real thing, we would have the cleanest house in Houston.
Matthew playing in the baby area at the Houston Children's Museum.
He had a grand time!
Also at the Houston Children's Museum, Alyssa and Jackson had a ball in the Cyberchase area.
Jackson just pulled a stool over so he could control the giant computer on his own.
He called it his 'rocketship'.

Monday, December 26, 2011

12 Days of Christmas

On the first day of Christmas, the good Lord gave to me: a child with a disability.

On the second day of Christmas, the good Lord gave to me: a heart full of love for my child with a disability.

On the third day of Christmas, the good Lord gave to me: an ache in my heart and a heart full of love for my child with a disability.

On the fourth day of Christmas, the good Lord gave to me: a tear in my eyes, an ache in my heart and a heart full of love for my child with a disability.

On the fifth day of Christmas, the good Lord gave to me: an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the sixth day of Christmas, the good Lord gave to me: a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the seventh day of Christmas, the good Lord gave to me: a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the eighth day of Christmas, the good Lord gave to me: supportive family and friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the ninth day of Christmas, the good Lord gave to me: remarkable doctors and therapists, supportive family and friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in heart and my heart full of love for my child with a disability.

On the tenth day of Christmas, the good Lord gave to me: an appreciation of small accomplishments, remarkable doctors and therapists, supportive family and friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the eleventh day of Christmas, the good Lord gave to me: a sense of pride, an appreciation of small accomplishments, remarkable doctors and therapists, supportive family and friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the twelfth day of Christmas, the good Lord said to me: Reach out and share your sense of pride, your appreciation of small accomplishments, your remarkable doctors and therapists, your supportive family and friends, your sense of humor, your ray of hope, your unsuspected strength for the tear in your eyes and the ache in your heart and your heart full of love for your child with a disability.

-borrowed (with minor edits) from Babies with iPads

Sunday, December 25, 2011

Saturday, December 24, 2011

Happy Christmas Eve

Jackson was joyous to open the Star Wars advent and find the Christmas tree.
Our Lego Star Wars characters singing "Hark the Herald"
(a la Charlie Brown Christmas)

Thursday, December 22, 2011

Holiday Break

Darren's last day of work for the year was Monday, Alyssa's last day of school was Tuesday, and Jackson and I were done last week.  So, the Hoy House is on holiday break for 2 weeks!  All the things I love about breaks---sleeping in, not having to abide by a schedule, eating whenever you feel like it, etc-- makes the kids crazy.  Alyssa, Jackson, and Matthew all thrive on routine.  By Tuesday evening Alyssa was getting a bit emphatic about needing to know what was going to happen the next day.  No fly by the seat of your pants for these kids.  They don't respond well to my "just go with the flow" response.  Oh well.  So, Darren and I laid out a rough daily schedule for our break, which we mostly followed yesterday and today.  And so far, so good.

We had a Wii-A-Thon today.
It was great fun.  We bowled, played baseball,
bicycled, played tennis, jousted, and
played Star Wars Legos.
Yesterday, Alyssa went to see a movie with a friend and
Darren took Jackson to see a movie too.
Mattie and I went to my favorite used book store and
stocked up on new (to us) Star Wars books.

Monday, December 19, 2011


Last week, Matthew figured out how to go up the stairs.  Once he made it past the second step, there was no stopping him.  The first day he went all the way up, I brought him back down, and he did it again.  And again, and again, and again.  6 times in a row.  And then I put the gate on the stairs, and Matthew sat holding on to the gate, crying.  If by chance we forget to put the gate on the stairs, moments after we turn our backs, Matthew will be hollering from upstairs for us to come get him.  I'm thrilled he has figured it out. Now I wonder how long it will take for him to figure out how to come down the stairs.  I guess it gives us something new to work on during physical therapy.  

Sunday, December 18, 2011

Good and Hectic

This past week was a good but hectic one.  Monday, Tuesday and Wednesday I gave final exams in my 3 classes, graded the exams, posted final grades, and responded to students' issues with the grades.  Tuesday Matthew had PT and Alyssa had a girl scouts' ceremony.  Wednesday was Alyssa's birthday. Thursday Matthew and I did a round trip to Dallas for his hand exam. And Friday I celebrated Angels' Day (our dear cousin Jenn's birthday) by doing all the things she would have enjoyed on a typical day. I went to have lunch with Alyssa at school, then went to Jackson's school to help with their holiday party, and then I went up to my school to turn in grades.  It was a very Jenn type of day. I wish that Jenn was still here on earth to do those things, but I know she celebrated in a big way in heaven, as she loved a party and this year my fun uncle Mark is there to help her toast the day of her birth.  

This weekend was a bit slower, but not by much.  Yesterday we ran errands while Alyssa went to a birthday party, and today we went to a gaming place for Alyssa's birthday experience.  In lieu of physical stuff, we give experiences and this year we went to the ITZ family fun center...and we had a ton of fun!   We bowled, played games, ate nachos, drank icees, rode on the train, and turned in our tickets for some little plastic stuff.  After which we came home and watched the Smurfs movie.  A nice ending to a hectic, but good week.  This next week should be considerably slower.  Whew!
Mattie liked to drive.
(Notice the finger configuration--Matthew using his index finger like a thumb.
This is the same way that Darren attempted to drive home the afternoon we realized Matthew was missing thumbs.)
Alyssa loves playing air hockey.
Both Aly and Jax tried the motorcycle game.
Alyssa loved the bowling.  Jackson lost interest before the end of the game.
Matthew wanted a skeeball and worked for several minutes to get it from the chute.
They must take after me, skeeball is my favorite too!

Thursday, December 15, 2011


On the 12th day of Christmas (Jan 6), the Texas Scottish Rite Hospital is giving Matthew a thumb!  

Today was Matthew's second hand consultation in Dallas.  It was a rough journey there, both literally and figuratively, but it was well worth it.  The hand surgeon noted the following:

-Matthew is an anomaly (as we knew).  He is the first kid that she has seen with a missing thumb that doesn't have abnormalities in the wrists.  His wrists are perfect and will make the pollicization easier.
-The way that Matthew uses his hands makes him a perfect candidate for the surgery.  He uses his index fingers like thumbs, and he has muscle forming the way that it would for a thumb.  
-The surgeon was very excited to watch Matthew play, to see how active he was and how much he uses his hands.
-They will do one hand at a time.  We get to choose which hand goes first.
-He will have a cast after surgery. The cast will go all the way up to his shoulder and he'll have to wear it for 6 weeks.  For a boy that dislikes wearing long sleeves, it may seem like a very long 6 weeks.
-We will schedule the 2nd surgery at the 6 week post-op visit to get the cast off the first hand.  
-The good news about doing it so early in the year is that Matthew should be cast free for the summer.    
-Matthew would do just fine without the surgery. We know this and he proves it to us every day.  This is an optional surgery, but this surgery will make it easier for him to do what he does.  (50% of hand usage is attributed to the thumbs.)
-After the cast comes off, Matthew will not need therapy. He will use his finger like he always does, now it will just be easier for him. 

As I entered the waiting room that we first visited 14 months ago, I remembered how I sat there that first visit, praying that the day would come for us to have this surgery...that Matthew's heart would be strong enough, that he would still be with us.  That day is soon here!  Thanks be to God!

As excited as I am for Matthew to have thumbs, I wish I had a crystal ball to see how this all turns out. Because this is the first optional surgery, I worry if we are making the right decision. But I keep going back to the thought that this will make it easier for him.  Oh how I wish I could make every thing easier for him!

Matthew & Mickey have a lot in common!
Mattie was gifted this shirt from a sweet soul.

Wednesday, December 14, 2011

Happy 6th Birthday to Alyssa!

I can't believe Alyssa is 6. I remember her entry into the world like it was yesterday.  I look over at her some days and expect to see that cute little baby looking back at me, but instead I see this skinny, gaped tooth little girl smiling back at me.  She's observant, sweet, caring and definitely my little academic.  I have loved watching her grow these past 6 years, and can't wait to see what the next 6 hold for her!

Happy 6th Birthday, Alyssa!

Tuesday, December 13, 2011


Matthew has a host of oddities that still go unexplained by our large team of specialists.

-Temperature regulation: Matthew will sweat when no one else is sweating, and if he is the slightest chilled, his lips turn blue.

-Extremities: Matthew's extremities (legs most often) are a different shade than the rest of his body. It is not a tan, and look a little yellowish to me. It is just him.  Also, Matthew's feet swell on occasion.

-Veins: Matthew has small veins, and as our cardiologist noticed during the heart cath, an atypical venous structure. Doesn't seem to concern anyone, except the phlebotomists who have to draw his blood.

-Weird Noises:  You can often hear Matthew's stomach slosh, even if he hasn't had much to drink/eat.  (Like jogging with a half empty water bottle.)  And Matthew grinds his teeth-- seemingly all the time.  

I'm willing to accept these are just part of Matthew, but I do wonder (and worry) if these are anomalies that point to something bigger. Hopefully not. 

Sunday, December 11, 2011

Cookie Decorating

One of my favorite holiday traditions growing up was decorating cookies with my friends.  Every year, my mom made tons of sugar cookies and let me invite friends over to decorate the cookies.  We always made a huge mess, but had tons of fun.  This is a tradition I want to pass along to my kids, and I hope they will have as fond memories of it as I do. 

Saturday was the cookie decorating party at the Hoy House.  Alyssa invited over 3 of her closest classmates and Jackson invited over his best buddy from preschool.  This was the first time that the kids had over kids that were friends forged on their own (not kids of our friends).  A neat new experience.  It was a bit crazy at times with 7 kids in the house, but cookies were decorated, and overall I think everyone had a great time.  A wonderful holiday memory.

Thursday, December 8, 2011

GI Meds (Again)

Since getting off the GI meds in October, Matthew's eating has taken a nose dive.  Today we went to see the GI.  Not good news. Between getting off the meds, the fact that he'd very much like to feed himself (though he isn't yet efficient enough to do so for an entire meal), and the latest stomach bug, Matthew has lost almost 2 pounds in the last almost 2 months.  That is close to 10% of his body weight.  So, Matthew is back on the pricey gastroperisis meds again.  We hope Matthew won't have to be on the meds forever, but we definitely want him on them as long as he needs them! 

Waiting for the GI appt,
Matthew plays Peek A Boo Barn on my itouch.

Tuesday, December 6, 2011

Craniosynostosis- 1 year post op!

1 year ago today Matthew had his craniosynostosis surgery.  There were rocky moments in the OR that day and there was a chance we could have lost him. Thanks to his fantastic surgeon, Dr. T, his great medical team, the blood donated by my Dad and Peter, and the sweet grace of God, we have had the great pleasure of holding and loving on our sweet baby Matthew for the last 365 days. (and more!) We couldn't be more thankful!

Today we went to see Dr. T for the 1 year check up. It has been so long since we had been down there, I had to check the route to Dr. T's office before we left.  Matthew's head has healed perfectly.  Additionally, we did talk about Matthew's propensity for grinding his teeth.  Matthew was born with a recessed chin and a small jaw, which may be causing the teeth grinding.  And the teeth grinding has caused the teeth to grow in slanted toward the back of his throat.  Dr. T indicated that they typically don't do anything about this until all of the adult teeth come in, including the molars (~16 years old).  But at Matthew's check up in 2 years, Dr. T will have the orthodontist and maxillofacial team come take a look if Matthew is still grinding his teeth.  Overall, it was a good appointment. 

Monday, December 5, 2011

Holiday Fun

Last week we started our Star Wars Lego advent calendar.  It is the highlight of the evenings now.  The anticipation of what each of the little doors will hold...a little character, a small ship to put together, etc.  Lots of holiday fun!
As well, this past Saturday, Alyssa and Jackson went with Grandma Joy to decorate gingerbread houses.  Time with Grandma, candy, and icing-- what isn't to like?  

Sunday, December 4, 2011

All I Want...

...for Christmas is my two front teeth!  

They may not be 'the' two front teeth, but Alyssa is in definite need of 2 front teeth.  Her first one came out a few weeks ago, and today she pulled out her second one. And I think there are 2 more coming out soon.  She may have a very gaped grin for Christmas pictures!

Saturday, December 3, 2011

Ride On Toys

At PT on Thursday, Matthew worked on riding the ride on toys.  I was saddened, realizing yet again how Matthew has to work for things that came so naturally to the other kids.  These ride on toys were a favorite of Jackson's when he was 6 months + younger than Matthew is now.  Jackson used to scoot around our living room, time and time again. And though I was saddened at how hard Matthew has to work at these seemingly simple things, I did take great joy in seeing him slowly but surely move...first backwards, and then a little forward.  

A page from Jackson's 2008 Favorites book.

 Matthew on the ride on toy at 21 months.

Friday, December 2, 2011

Crazy & Messy

When you walk into our house, there is no doubt that we have 3 small kids.  At this very moment there are plasma cars, ride on toys, books, balls, the remote control, Star Wars blasters and other random toys littering our living room.  No matter how hard I try to straighten up, it almost always has a disheveled look. 

I joke that I should add "stuff mover" to my mommy job description because I move the same items time and time again.  I put the remote on the end table, and 2 minutes later Matthew throws it back on the floor. I put the ride on toys away, and a few minutes later, Alyssa and Jackson are racing around the living room.  I put the toys in the bin, and within the hour I'll look around and find them all over the living room.  I feel like I do this a half dozen times a day. I really should only do it once, with the kids, right before they go to bed but I'm not ready to admit that my life is that crazy & messy yet.  

Thursday, December 1, 2011

Right Now

Life is very good right now.  Everyone is relatively healthy, just periodically dealing with typical ailments like ear infections, head colds, and stomach bugs.  When we visit the pharmacy, it is for antibiotics, not heart meds or Vicodin.  Just comparing how far Matthew has come in the past year + reminds us to be so very thankful for this good life today.  

I was further reminded the other day.  I'm a member of couple of rare chromosome disorder support groups and one featured a little girl as their angel of December.  The sweet little girl with a rare chromosome disorder went to heaven at age 13.  Her story wasn't that different from Matthew's.  This was a reminder that though life is very good right now, that may not always be the case. Matthew's health could take a turn.  Hopefully not, but it could and because of that, I need to be very, very thankful for the goodness of now.  I am very thankful for right now. 

Wednesday, November 30, 2011

Difference A Day Makes

What a difference a day makes.  Yesterday our house was the hot zone. I was a step away from needing a hazmat suit.  Matthew had serious gastrointestinal distress. We must have changed his clothes and sheets a dozen times yesterday.  And Jackson's fever continued to rise throughout the day, topping out at 104.  He laid on the couch, laid in the bed and slept the majority of the day. 

Then our luck turned. Matthew's last throw up was at 5pm.  And Jackson's fever broke as we woke him up to put him into his bed. Thankfully today was a whole new day.  No gastrointestinal distress. No fever.  Just happy Hoy boys, and happy Hoy parents.  Yippee!

Tuesday, November 29, 2011

Not Fun

Jumping into the week after getting home on Sunday late afternoon after a 19 hour car ride was bound to be rough.  And it has been. 

What I had thought to be allergies from my exposure to a cat over the holiday is now thought to be a cold. Not fun! Matthew threw up several times yesterday, which I attributed to drinking bad milk. But after he threw up again (twice) today and left something very nasty in his diaper, I'm guessing he has a stomach bug. Also not fun! And Jackson's been complaining of not feeling well (general yuck) since I got back from class this morning. Again, not fun!  Hopefully the lazy day watching movies and napping will mend us all.

The bright point of today is that Alyssa had the warts surgically removed from her nose this morning at TCH. Though not fun, (1) the warts are gone and (2) she seems to have no ill effects from either the surgery or the anesthesia.  Thank goodness! 

Monday, November 28, 2011

Thanksgiving Trip

Every year we journey up to Chicago for what has become my favorite holiday-- Thanksgiving.  Fun, warm, and loving family, playing cards/dice, the turkey bowl football game, good food, even better conversation, good wine, and the cookie bake make it hard to top. No matter how much time we are there, it never feels like enough.  That is the sign of a good trip!  As we sadly drove away, I wished that Chicago was at least 500 miles closer to Houston so that we could go more often!

Alyssa's favorite day is cookie bake.
Beyond the fun, I suspect it might be because Auntie C lets her lick the beater!
Aly, Jax and their cousin Jon enjoyed watching Christmas movies.
Mattie had fun playing with the cookie cutters.
Jackson and Aunt Susie enjoyed playing LCR. 
Jackson won and the money burned a hole in his pocket until we went to the store earlier today.
A week of fun--we were all worn out by the end but can't wait until the next time!

Wednesday, November 23, 2011

Dragon Mom

I recently read an article penned by a mom who has a little boy with a fatal rare genetic disorder.  Although Matthew's future (we hope) is not the same as the little boy's in the article, the article resonated with me when I first read it and it still does today.  Two of the most powerful quotes: 

"We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice."
Parent for the here and now, for the humanity implicit in the act itself--I really need to do a better job of doing this for all 3 of our kids!

"Parents who, particularly in this country, are expected to be superhuman, to raise children who outpace all their peers, don’t want to see what we see. The long truth about their children, about themselves: that none of it is forever."

Although I came to this harsh truth in the dark hours of that second morning after Matthew's birth, and I was reminded of this countless times through Matthew's first year, as more time passes since those scary days, I forget how very thankful we should be for the gift of today.  For that is all we have been promised--today.  Thank you God for the gift of today!

Tuesday, November 22, 2011

Moving Video

I came across this video on Facebook, through a group I belong to that recommends ipad applications for special needs kids.  I've gotten a lot of great ideas from the group and was moved to tears by this video that they shared.

Sunday, November 20, 2011

Matthew's Progress

Matthew is continuing to fall further behind in his development in comparison to typical kids.  His development will be re-evaluated when he turns 2, but if I had to guess, overall he's now about 9 months delayed. Though (like when he was a year), he seems to be less delayed cognitively and most delayed in language. What continues to encourage us is the fact that he continues to develop at a steady pace, albeit a bit slowly.  

A few things he's done recently that have caused us to cheer: (The first two probably don't sound like good things, but they are positive signs of developmental progress.)
-Matthew gets upset when he is told 'no', complete with a cry out and huff and puff.  
-He doesn't like to take turns.  If we are playing ball and I roll it to someone else, he'll get mad and try to get it.
-He is immitating a lot more.  Yesterday he took my ear bud and put it to his ear.  
-He's often following simple instructions.
-He's shaking his head 'yes'.  When he's eating, if I ask him "is that yummy?" he'll nod. 
-He's engaging in a lot more back and forth verbal play, mimicking conversation. 
-He is traditionally crawling-- fast.
-He is really enjoying playing with toys and balls. 
-He's continuing to cruise on the couch (or coffee table, etc).
-He will take steps forward if you hold his hands.
-He's eating more and more table foods (though still taking baby food too).

I am so thankful for my sweet baby Matthew, for his sweet disposition, for the joy he finds in little things, and for his forward progress.

Saturday, November 19, 2011


I am a flawed human being.  It is humbling to be reminded of that.  Earlier this week, I misinterpreted a dear friend's words, became very defensive, and was unkind to her.  To make matters worse, I did this in front of women that we respect and admire.  I am sincerely sorry for originally not giving my friend the benefit of the doubt and then for totally overreacting and being unkind.  I'm also sorry for making the women we admire feel uncomfortable. 

Though I really wish this hadn't happened and it weighs heavy on my heart, being reminded that I am a flawed human being is humbling, and being humbled, although difficult, is a good thing.  I sometimes forget that we are all flawed, and are all in need of grace.  Forgetting that, I am too often judgmental and unforgiving in my every day--to the guy that waited to the last minute to merge and then cut me off, to the student that showed up 30 minutes late for class, to my daughter flipping out because she didn't want to wear the tan pants, to a friend that never returns calls, to my beloved for being flip about a topic I'm passionate about, and so on.  I have humbly been reminded that I am flawed, and hope to keep that in the forefront of my mind as I encounter other flawed human beings, so as to hopefully be less judgmental and more forgiving in my every day.

Thursday, November 17, 2011

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

Wednesday, November 16, 2011

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.

Monday, November 14, 2011

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)

Sunday, November 13, 2011

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!

Tuesday, November 8, 2011

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!

Monday, November 7, 2011

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!

Friday, November 4, 2011

Silver Lining

It is finally cool enough here in Cypress to wear long least for a few days.  Matthew is NOT a fan of long sleeves.  As soon as you put them on him, he tugs at the sleeves and bites at them.  Pretty funny.

As we are putting long sleeves on Matthew, we have uncovered a silver lining to not having thumbs.  It is much easier to put a shirt on Matthew!  No thumbs getting caught on his sleeves. 

Matthew being born without thumbs was a huge shock, and the scariest thing we had encountered up to that date of Matthew's birth.  Now, we know there are much scarier things out there, and we have encountered many scarier things with Matthew since that sunny afternoon on February 27, 2010. 

Him not having thumbs isn't even among the top 5 scary things in my book anymore. It is part of who Matthew is and he does amazing with his 4 fingered hands.  He can palm a little ball. He picks up food and puts it in his mouth. He manipulates objects with his fingers.  He gives us high 4s. He uses his index finger like a thumb.  I look forward to the day we move his index finger to a thumb position (pollicization), just so it will make it easier for him to do what he's already doing!

I am still awed by those sweet little hands, those unique and perfect little hands that propelled us into this journey.  I love them...and him...more than I could ever convey.

Thursday, November 3, 2011

Remembering Reality

Matthew is the exclamation point at the end of our family.  As I was ruminating about this with Darren, I was a little sad that our last baby experience has been so atypical.  That my final baby never did figure out how to nurse, that we won't see a tiny little one learning to walk, that very little about Matthew goes 'by the book'. 

And then Darren reminded me-- very little ever goes as expected.  It took Alyssa several visits to the lactation consultant before she figured out how to nurse, and even then she only would with assistance.  She spent a week in the hospital because she wasn't gaining weight at 3 months old, only to find out she just had some reflux.  Jackson nursed-- all the time.  He never slept.  We would walk him hours on end, laps around the couch in the living room.  He walked and talked on the later side of typical.  Even typical kids don't do what you expect when you expect it.  

Rarely anything in life turns out as you imagined it.  As I was reminded of the stark realities, not the romantic versions that clouded my memory, I was reminded how very profoundly blessed I am with our family of 5...with the exclamation point at the end.

Wednesday, November 2, 2011

Making Me Smile

What is making me smile--

Watching Alyssa go into school. I don't think she has any idea that I sit there across the street and watch her go through the front doors of the school in the morning.  She never looks back. 

Matthew's ear to ear grin when I buckle him into his car seat. We turned the car seat around so he faces forward and you'd think I had just given him a million dollars.

Listening to Matthew babble while I'm driving to pick up Jackson at preschool.  I LOVE hearing the ba-ba-ah-ba from the backseat!

Seeing Jackson running down the hallway at preschool to come meet me.  He always has a big grin on his face.

The fact that Alyssa and Jackson had as much fun giving out treats on Halloween as going door to door trick or treating.

Marveling in the difference the new school has made in Jackson. At drop off, he used to hang onto our leg tentative to let us go, now he gets out in car line without a second thought.

Seeing Matthew do the sign for dog.  He's communicating!

My one semi- frowny face--

Matthew had a raging ear infection last week, where he was bleeding from his ear.  After 5 days of ear drops, eye drops and oral meds, I think it is improving and his ear no longer stinks (reminiscent of his helmet days).  

Matthew is so happy to be facing forward.