Little Kids

Some day pretty soon, we won't have 3 little kids.  I will be happy we've made it past the 'little' stage, but I will also be slightly sad.  We've come so far in these years and I can only dream of where we'll be in a few more.

Ride Home

Every year for my birthday, I go to the greatest steak house.  The steak is always done to perfection, the sides are always the ones that I love and I get to spend time with some of my favorite people in the world. 

I love the way my dad grills steak!

For this trip, we decided to test out if we could all 5 travel back and forth to Houston in our Fusion, meaning 3 kids in close quarters in the backseat.  The drive up wasn't too bad, but the drive back was awful. The kids were tired and not happy when someone encroached on their space.  About an hour into the 3 hour drive, I had Darren pull over. When I opened Jackson's door and told him to 'get out', he looked at me and said in all seriousness "are you going to leave me here?".  I had to reassure him through my giggles that we were just switching seats so I could ride in the back.  For anyone concerned, we have a sensor in the front seat that turns off the airbag when a child rides up front.  Yes, we know it is safer in the back-that just was no longer an option since we just couldn't go any further with all 3 in the backseat.  It was brutal and I'm very glad we ran the experiment before making it a permanent choice!

So for the remainder of the drive back to Austin, I rode in the middle seat in the back.  Not fun, but a few minutes in, Matthew grabbed my hand to hold it and he promptly went to sleep.  I think this might have been the first time I've ridden with Matthew in the backseat since his first day-- the trip back from the pediatrician's, where we found out that he had no thumbs.  I remember that trip back from the doctor's office so vividly-- staring at Matthew's hands, watching Darren up front trying to drive without using his thumbs, crying, and generally just being scared out of my mind.  This trip was so different. Those 4 little fingers were intertwined with mine and I felt nothing but love, happiness, and total contentment.  So very different!

Mattie hanging at the park earlier this week.

Best Presents

Today, I am celebrating my first 39th birthday.  These are some of the best presents I've ever received:

My beloved and my sweet baby watching the Aggies game.

The Hoy kids all playing together nicely.

Jackson's new fascination with birdwatching.

Matthew's affection for wearing Jackson's flip flops, on the wrong feet.

The kid who didn't like school reading in his free time.

"Little Mommy" (who isn't so little anymore) being a fantastic big sister to Matthew.

It's a great life!  That is the best gift I could ever imagine!!

Every Day Ordinary

Some moments with Matthew feel so hard--like cajoling him to get into the car after therapy is a 5 part process. Let's go to the water fountain. Let's play hide and seek in the atrium.  Let's open the 'magic' door.  Let's walk the balance beam (the parking hump).  Let's unlock the car.  And finally, after we do those steps, we can get in the car, usually without tears (his or mine). 

Other moments are so ordinary and so beautiful, they take my breath away.  I looked back in the rear view mirror on our way back from Target and saw my big boy sipping on an Icee.  I spotted him climbing into the chair in my office so that he could play with the keyboard.  I heard him say 'mama'.  Just every day ordinary, but miraculous too. 

Ticking Items Off

When Darren and I made the decision to move to Austin, I warned him that there were at least 4 things that were going to make me cry or drive me nuts about moving.  He can likely attest that I haven't disappointed, and have freaked out about those 4 things plus a few more since then.

Just the other day though, Darren was quite excited to hear that since moving here, I've checked two issues off the list. 

The first item ticked off the list is my love and obsession with my grocery store in Cypress.  I had serious affection for that store, but I think I've moved on.  I still miss the one checker that was always so sweet to Matthew and asked about him if he wasn't around, but I have adjusted to our local grocery store.  Though the store isn't as nice as the one we left, they stock all of my favorite items, so it will do. I'm over it.

The second item ticked off the list is Alyssa missing her friends. I was worried that she wouldn't adjust well and would spend her time pining over her Houston friends.  I am very happy to say that I was wrong! She became quick friends with the girls across the street, the one next door, and a few in her class.  Though I'm sure she would miss her Houston friends if reminded, she has fallen head first into her new life.  I think the apprehension I had might have been my own, remembering my sadness when I moved in high school.  I guess moving when you are 7 is a little less dramatic than moving when you are 14. Either that, or Alyssa is more socially flexible than I was.  Either way, I am VERY thankful!

So now, 2 out of 4 resolved! 

Alyssa and her friend walking to class after walking their younger siblings to Kinder.

Baby E

As we have navigated Matthew's journey, an unintended blessing is getting to know people we would have never known otherwise.  Doctors, nurses, therapists, office staff, teachers, aides, and so on.  I may only know these people in context to the care they provide for my son, but I do care for these people greatly. They have helped light the path when there was a great deal of darkness and for that, we are so very thankful.

Similarly, one particular sorority I joined being Matthew's mom is 'Moms of Unique Kids'.  Though no one shares Matthew's particular chromosome disorder, there are lots of kids who have very unique disorders, and some of them are similar to Matthew's.  It is a sorority I never would have pledged, but one I am thankful I have found.  These mothers may encounter different curves in their little one's journey, but we all relate to the fact that we are all on the journey of the unknown. 

I love to hear about, see and meet kids who have a similar diagnosis to Matthew.  I learn from their experiences and I hope that they are able to benefit from our experiences as well.  It is a small sorority so every connection is huge!

There is a little 7 month old boy who has a similar chromosome duplication to Matthew.  I believe he is also the only one known with his particular chromosome disorder (which includes a deletion as well). He and his family could use prayers and well wishes today as he undergoes open heart surgery to correct his Tetralogy of Fallot heart condition. 

Baby E sitting like a champ!

We appreciate you sending up good wishes and prayers today for cute baby E, his surgerical team, and his family.  I know your prayers and well wishes have helped us in our most trying times and I hope that E's parents will know the same. 

Luckiest Kid I Know

When we walked into Matthew's classroom for the first time, Darren pointed to Matthew's locker and chuckled.  Each child has a symbol and Matthew's symbol was a hand. 

When the teachers' noticed, they were mortified.  It was totally by accident, as they hadn't even received Matthew's paperwork yet.  We found it ironic, and more than a little funny. I mean-- what are the odds that his symbol would be a hand?  1 in 18 (or so) and guess what, Matthew is just that lucky.  We are talking about the 1 in billions kid!

We know Matthew's perfect with his 4 beautiful fingers on both hands, with one being his 'thumbdex' finger that serves as both a pointer and a thumb.  And we know that having 4 fingered hands is unusual.   We can even chuckle about it.  That is what 3 and 1/2 years of knowing, seeing, and living it has done.  The afternoon of February 27, 2010, I couldn't fathom being light hearted about having 4 fingers but after the last 3+ years, we know that missing thumbs is lower down on the list of things about which to worry.

We don't mind people noticing his missing thumbs and even pointing it out. I'd rather people speak up than to whisper.  I like people to ask questions.  It gives me a chance to say how amazing he is with his 4 fingers.  Matthew is unique, and different, and awesome too.  (As referred to previously, what I don't like is Matthew being taunted for being different or for kids to be unkind to him because of it.)

To answer the question I'm often asked, no, we aren't planning on the surgery to give him thumbs anytime soon.  He is doing well without and the surgery takes considerable time to recover which we aren't willing to take during this stage of his development.  Thankfully this is a surgery which he can have at any time, so we (or he) can change our minds if compelled to do so.

So, for now, we chuckle that it will be hard for Matthew to be an Aggie (the gig 'em thumbs up) but as his teachers have pointed out, he should have no problem being a Longhorn (index finger and pinky horns).  We live in the right city for that.

Matthew's locker now.

Gift of a Year

Before Matthew, I used to fret over Jackson's development.  He seemed to always be on the later end of the developmental chart-- he walked and talked on the late end of 'normal'.  He seemed a bit emotionally immature for his age. I used to joke that he taught me how to be patient because he does things in Jackson time. 

Ah, how naive I was.  After Matthew, I gave up fretting over Jackson's development to fret over Matthew's development-- since Matthew has walked and talked way off the late end of 'normal'. 

Even now, Jackson seems to hit milestones a bit later.  It was one of the reasons we decided to 'redshirt' him for Kindergarten (doing kindergarten twice).  I've met people who assume the only reason anyone would hold their boy back from kindergarten is so that he would be better at sports.  Research does indicate that older boys (which includes those who are 'redshirt'ed) do better in sports overall, but if you knew Jackson like we know Jackson, you would know that we are under no delusions that he's going to be a sports phenom.  He likely inherited my lack of coordination.  Poor kid. 

What redshirting did do for Jackson is nothing short of amazing to us.  He confidently walked into his new school this year, a stark contrast to attempting to hide behind our leg in previous years.  He may grumble about being woken up for school, but doesn't complain about going to school.  He has come home every day with a green smiley face in his folder.  Every night, he gets excited about reading, saying how much he loves it.  What a difference a year has made! 

Last Thursday was grandparent day at the elementary school.  Alyssa and Jackson seemed unfazed that they didn't have grandparents there (which their grandparents had no idea about because I didn't tell them as it seemed crazy to drive 3 hours for the 30 minute lunch) but Alyssa asked when it would be "parent day".  I explained that I could come to lunch whenever, which she was excited about.  When I asked Jackson if he'd like me to come to lunch with him, his answer was firmly "no thanks".  Ummm, what? I prodded a little further.  "You don't want me to come to lunch? I can bring you something special to eat."  Jackson's response was still "no thanks".  Though a little hard on my ego that my child doesn't want to eat lunch with me, it is pretty awesome that Jackson is so excited about spending time with his friends at his school that he doesn't want to interrupt that time.  We are so very thankful that he is coming into his own at school.  We just needed to be patient and give him the gift of that year. 

"Good"

First, this week has been remarkably better than last week in regards to Matthew's behavior.  We modified our afternoon routine, which now allows for him to take an abbreviated nap, and it has made all the difference.  I recently watched this video about talking to kids after school and it reminded me of Matthew last week.  He just didn't have the brainpower to use logic or have coping mechanisms or do anything but use his primal brain. 

Also this week, I was struck by the starkness of the dividing line between Houston and Austin.  As Matthew walked into school earlier this week, one of his teachers asked "How are you this morning?".  First, he shook his head but when prompted, voiced an approximation of the word "good".  I marveled at how awesome that was-- Matthew said "good".  We worked, and worked, and worked-- hours upon hours upon hours of speech therapy-- when he never said a word.  Those therapists never got to see the fruits of their labor.  And his teachers now, though excited for him and his efforts, have no idea that they just witnessed a miracle.  A miracle I feared never was going to happen. 

This starkness is happening a lot right now.  As we meet more and more people, those that meet Matthew now see him very differently than those who have followed his journey from the beginning.  Right now, you see a walking, talking, vibrant little boy who may look or act just a little bit different.  What you don't see, what can't be conveyed even through words, is Matthew's journey to this point.  We didn't know if he'd smile, or laugh, or sit up on his own, or crawl, or eat on his own, or walk, or talk, or even make it to today.  He almost didn't-- we almost lost him from intestinal surgery, heart failure, heart surgery, skull surgery, and a bowel obstruction. I have a hard time remembering that some moments and some days, how can someone who sees Matthew today see just how amazing he is, what a fighter he is, that the 'normal' they see is really a miracle?   

Hmmm--wondering if you've read this before?  This isn't the first time I've thought these thoughts, it is just the most recent. Here's a similar post from a year and 3 months ago. 

Random Thoughts

- I really miss not caring about the floors in my house.  In Houston, we had pergo and it was pretty indestructible.  We let the kids ride the plasma cars or scooters on them and never worried.  Here in Austin, we have distressed wood floors that are becoming more and more distressed by our every day living.  No way would they withstand the plasma car Hoy Family 500 through the living room.  I miss that.

- I can't remember the last time I played with Matthew and didn't try to incorporate a therapy trick.  I have a few hours with him in the mornings before he goes to school, and I have been trying to make a concerted effort to just play and not think about working on his fine motor, gross motor, or speech.  I can't help myself though.  I sat down to play trains, and immediately asked Matthew to make the train sound, like we have at therapy so many times.  Habit.

- I am enjoying the quiet every day for a few hours when all 3 kids are at school but am quickly coming to the realization that I have to get back in the classroom. My teaching makes our home life a bit more crazy, but it makes me feel like me.

- I have had so many false starts to get healthy again (after the craziness of our transition this year, I fell off the wagon, hard).  I know how to be healthy--eat right, exercise-- but just cannot seem to get back up on the wagon for a prolonged period of time.  I need to get back on it!

- It took Jackson a year to earn his glow up light saber-- a year to get one entire week without time outs.  He loves that light saber and he earned it!  And it was the only thing we lost in the move.  :(  Thankfully I found a replacement this past weekend.

One of my favorite pictures from LA.

Joys and Challenges

Matthew's new school schedule, combined with the older kids' school schedule, has not allowed time for Matthew to nap on school days. The first week was rough, but the second week has been brutal.  Matthew is usually so happy and vibrant, but now he mixes that more frequently with unhappy and violent, with equal enthusiasm on both ends of the spectrum.  He throws things.  He hits.  He bites.  Sometimes with cause, sometimes with cause that we don't understand.  He doesn't do this at school, but he is doing it more and more at home.  I attribute it to his increasing deficit of sleep and his new routine-- at least I hope that is what it is.  This has not been a fun time in our house. 

As we've been experiencing this more and more this past week, and I've fallen further and further into despair, I've seen a couple of viral pieces relating to special needs parenting.  Some have spoken to me, others have missed their mark a bit.

There is this one.  I appreciate the sentiment, but this just doesn't feel right to me.  I wish it were true, but many moments, hours, and days I know this to not be true for me.

Very sweet story attached with this picture can be found here.

There is this one.  It is probably a little closer to how I feel, but as I parent all the kids but especially Matthew, I often feel much less than special.

Then, I read this.  It brought me to tears. 

The Special Mother
Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

"Armstrong, Beth, son. Patron saint, Matthew. Forrest, Marjorie, daughter, patron saint, Cecilia" "Rutledge, Carrie, twins, patron saint...give her Gerard. He's used to profanity"

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."

"But Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect. She has just enough selfishness." The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

 
I am so very imperfect, and love the idea that maybe those imperfections were the perfect match for Matthew and Alyssa and Jackson too.  I don't have to be 'special', I just have to be the perfect fit for my kids. 

Hopefully I can be that this next week as we work to figure out how to (a) help Matthew get more sleep and (b) help Matthew handle his emotions better.   Until we figure it out, you may hear me say "joys and challenges" under my breath time and time again.  It is how I remind myself that with each phase come joys (Matthew says 'mama'!) and challenges (Don't hit the dog or your brother!).

School, So Far

The kids reply to 'How was the first week of school?':

But the first week of school did hit us like a ton of bricks.  We were anticipating it because we spent the weekend before school started in Los Angeles.  The 2 hour time difference, in addition to staying up to celebrate way too late and arriving back in town at bedtime Sunday night, made for a tough start to the school routine.

Well worth the rough start, in LA,
we celebrated adding Aunt Brandi to the family!

That first morning of school was rough, but that afternoon was much tougher.  At one time, all 3 kids were in time out.  The week continued on, and we struggled to get into a groove.  Good reports were coming from school, but all 3 kids were on edge and emotional at home.  There was a reverse correlation-- the youngest was the most emotional and on edge while the oldest was the least.  Most likely that is related to the amount of adjustment to the new environment-- Matthew's school life is much different than before while Alyssa's is pretty similar and Jackson's is somewhere in between. 

This past weekend of doing nothing seemed to help the start of this week.  Tuesday, we woke up a little easier, we got ready a little faster, and we seem a little less on edge.  Matthew had an issue this morning, but I attribute it to having therapy this morning and falling asleep in the car on the way to school.  I hope the day turned around quickly for him!  For his and his teachers' sake!  I am hopeful we are getting into the groove of our new school routine.

The No-Labor Weekend

This holiday weekend, we did a bunch of nothing and it was as fabulous as I thought it would be.  Pretty much since before Christmas last year, we have had a laundry list of to-dos every weekend.  First it was prepping for our Disney vacation, then prepping for Darren to move to Austin, then prepping to get the Houston house on the market, then prepping for the family to move to Austin, then prepping for our summer road trip, then unpacking the Austin house, then prepping for a quick trip to LA, and then prepping for school to start. 

This weekend-- we were moved in, no trips on the horizon, and school is in session-- life is 'back to normal' (whatever that means).  I even enjoyed the banter ("what do you want to do?" "I don't know. What do you want to do") that Darren and I often partake when we don't have a huge list of to-dos with an unstructured weekend on our hands.    

We had neighbors over for dinner.  We played with technology.  We shopped for Halloween costumes. We watched a movie.  We ate out.  We just did a bunch of nothing.  Totally delightful!

 

Jax watching Darren and Alyssa helping Matthew.