Robert's response was serious “I don't like things thrown at me.”

I sighed. He was right.

All I knew was I was done.  I had been comfortably curled on the couch ready to veg out and watch some inane sitcom. I didn't want to be outside in the cold and dark hunting for tape. 

It all began approximately nine months ago.  Hannah was old enough to qualify for a project to help make the house wheelchair accessible so she could exit and bath safely.  This is a big issue for people caring for a person who can not walk and is getting older and bigger everyday.  I started the gears turning on this.  It is a long process involving quotes and government board approvals. 

Meanwhile, my father has been requesting a visit for over six years.  He lives in Florida, and we live in Oregon.  With Hannah's medical issues (and sitting still issues) it seems baffling to me on how to accomplish it.  Hannah's breathing has improved so much over the past couple months it seemed feasible though.  So we agreed on a date and I started the process of figuring out the logistics of the trip.

On top of this at the beginning of this year, our Private Health Insurance changed. They misunderstood the type of food Hannah was taking through her G-tube and decided it was available over the counter and rejected paying for it.

OK, so the remodel stuff got approved the week before Martin Luther King Jr's birthday.  Meanwhile we had planned for our Florida trip to be during the kids Spring Break March 16-25.  Since there would be  some demolishes I planned for the contractors to come the week we were gone with my father in-law supervising.  While this government contract was happening, we added doing all the floors with wheelchair friendly flooring so it could all be done at once.  I spent the weeks after the remodel call packing up the house, arranging travel plans and discussing the rejection with the health insurance company. 

We returned to a hotel room from the trip, our first night we moved back into the empty house was last Tuesday.  I had silk tape in Hannah's bag for her pulse oximeter.  A nurse who was just trying to be helpful  decided the spot I keep the tape would be a good place for the power cord.  It is a small space. She managed but didn't tell me where she put the tape.  Normally this isn't a problem but, when your house is in boxes and not all you packed, it can be a problem.  We needed the tape to put on Hannah's Pulse Oximeter while she sleeps.

So anyway, I was done.  Robert picked up the tape and walked to Hannah's room.  When he came back he said “There was tape on Hannah's feeding pole.”

Inside I was laughing hysterically, outside I looked at Robert and said “Of course.” I looked back at the TV.
--Mom

Hannah is using her hands more, but she is still very leary of using them for anything besides batting at objects.  She has preferred to use her eye gaze for making selections and communication. 

So, four of us gathered in a small room with Hannah.   The system was set up.   Hannah followed the directions to calibrate the machine to her.  She patiently went through the exercises. 

The product rep started with one image that represented someone jumping.  If she made it say “jump,”  I would jump.

The first time she did it, after I jumped, she couldn't stop laughing.  The adults in the room asked her to push it again.  Because it was hilarious.  She tried, but she was laughing so hard, and she has huge cheeks that narrow her eyes, so when she laughed, the machine could not read her. 

Once she calmed down, she did it again, I jumped again, and she laughed some more. 

The rep added more commands.  There was a button to pat my head and one to clap my hands.  She looked at whatever one they asked her to do.  Everyone did all the commands except the jump command.  Hannah would also clap as she would look at the clap command.  She loved it.

Next they tried a bubble button.  Hannah is interested in bubbles, but not as much as most kids I've been around.   There was a blow bubble button.  This was hard for me to do on command.  My timing never seemed right.  There was a catch bubble command.  Again my timing was off.  Then there was a pop bubble command, and the bubbles usually decided to disappear before that was implemented.  She was patient through this exchange.

Then it looked like they were going to find something else to try.

Hannah took over.  She found the button that said “I need help”

We all paused.

She found the button “Please”

She went for a button with a bathtub on it but it wasn't the one she wanted she shook her head.

They had her restart.

She started at “I need help please”

Then she found “I have to go to the bathroom.  I need help please.”

We acknowledged her request.

She found “Thank you.”
I teared up.  Hannah teared up.  I took her to the bathroom. 

--Mom

I glanced in the rear view mirror, then switched back to the road.  "Yeah?"

"If we have to sleep in the car, at least I have my teddy bear."

I sighed.  Gabriel and I had left the Rose Garden parking lot about five minutes before.  We had second row seats to the Winterhawks Teddy Bear Toss game.  Gabriel and I had tossed four sacrifical teddy bears on to the ice after the Winterhawks first goal, but I had bought two keepers and kept them in the car for him (trust me:  the tears of separation from the sacrifical bears would have been pretty grim without this little bit of planning).

But now, driving home, I had made a different turn.  The signs were guiding us to the 5.  I knew we would make it to the 5 eventually.  Gabriel, though, based on some experience, was convinced that Dad was yet again lost.

"We're almost to the 5, Gabriel."

"But if we do have to sleep in the car, I have my teddy bear.  Will it be morning when we get home?"

Double sigh.

The freeway did ultimately appear and work-drive-patterns kicked in, leading me to the correct interchanges to bring us home.  All of us home:  Gabriel, me, the golden teddy bear, and the chocolate brown teddy bear.

-- Dad

“Do you mean the kind that makes holes in the ground or the not so interesting type of boring?” I'm a mother. I have to increase his vocabulary definitions. It's somewhere in my blood like hugging him when he is hurt.  I must try to turn every moment into a teaching moment.  I know it drives him crazy.

“Pretend I'm wearing all brown clothes, Mom.”

It was morning, and I was running around like a chicken with its head cut off.  I was getting Hannah ready, trying to eat something, and make sure I knew what he was doing after school that day.  I looked at him smiled and said, “OK.”

He wandered back to his room.

Once I had Hannah in the family room playing with a toy and actually sitting to eat my breakfast, he came through with his dream journal.  “I'm going to write boring man stories in my journal.”

I was interested.  Most stories that are captivating to read are not boring.   He opened his book and wrote in under a minute.  “OK, I finished my first story.  Mom, do you want to read it?”  He was trying not to giggle.

I came over next to him.  “Of course I want to read it.”

He wrote:

“The Boring Stories
Once upon a time.
The End”

I laughed.  Hannah pulled the toy she was chewing on out of her mouth and laughed, too.

“Did you like it, Mom?”

“Yes, very funny.”

“I need my book back. I need to draw the Boring Man Comic.”

I handed him the book.  He proceeded to draw for about a minute.

“I'm done.  Do you want to see it?”

“Oh yeah, I do!”

--Mom

It's nights like tonight that make that purchase worthwhile.  After a long, extended day at work, I popped in a Kenya AA coffee, pushed a button, and shared a very tasty, dark roast alongside some laptop work (like I said, long day).  Now I am enjoying some Earl Grey tea and orange blossom honey as I write.

Kids are in bed.  Dad has coffee and tea.  Dad happy.

-- Dad

And Hannah has conditioned us, too.  We know not to get between her and her Bag.

Being that Hannah has a portable DVD player, we thought it fair to get Gabriel his own for a recent long trip.  He now keeps it stashed in his room, and he asks politely to use it for time to time.  Recently, he dug through the DVD boxes, found something he liked from the "kids" section, and went off to his room to watch it.

A few hours later, we gathered at the table for dinner.

"I love that movie," Gabriel started.

"Hmmm," Janette or I prompted absently.  Hannah looked up from her toys.  She generally finds Gabriel's revelations amusing.

"You know the movie I borrowed, 'Spocky and Nose Whistle.'"

"Huh?" I asked.  Gabriel now had my rapt attention.  What the heck was he watching?

"The cartoon!  'Spocky and Nose Whistle.'"

I laughed.  "You mean... Rocky and Bullwinkle."

"That's what I said!"

"No, you said Spocky and Nose Whistle."

"Uhhh," Gabriel groaned.

Janette softened things up, sharing her favorite parts of Rocky, Peabody, and the other cartoons included in the set.  I giggled at what Spocky and Nose Whistle must look like, and Hannah joined me, laughing, too.

Both the kids certainly love their DVD players.  Hannah has her Magic Red Bag.  And Gabriel has his cartoon classics!

-- Dad

Weeks ago, we bought tickets to attend this weekend's Winterhawks game with Gabriel's Cub Scout troop.  This was before we all got sick.  Before Hannah missed a week of school due to bronchial junk.  Before I left work Friday feeling a little green.

So imagine my excitement, edified by Musinex and Tylenol, at the prospect of attending a hockey game with Mr. G. 

Hannah was beside herself with anger at not being included, of course.  As Gabriel and I prepared to leave, she pouted, a tendril of green snot running from her nose into her lip.  I apologized to her, reminded her that she wasn't so thrilled with sit-still events yet, and then Gabriel and I headed out.  Hack, hack.  Cough, cough.

Well, we settled in.  Gabriel waved and called out to the couple of scouts he knew.  We grabbed our hot dog, drinks, and popcorn, and then the game began.

Of course, this particular hockey game was a huge nailbiter.  Body slam, fight, score, body slam, another fight, another score.  With 2.6 seconds left, our home team Winterhawks managed to tie the game at 3 each.  Overtime was scoreless, and then our team won a tension-filled shootout to win the game 4-3.

I quized Gabriel on the way out to the parking lot.

"Well, now you've seen four sporting events:  ice hockey, basketball, lacrosse, and baseball.  What's your favorite?"

"Ice hockey!  Can we come back next week?"

So this is going to be his sport?  We brought home a hockey puck each for him and Hannah.  If this is going to be it, I hope he's interested in dentistry as a career.

-- Dad

I called the school to report that they weren't going to school and got ready for the long day.

We had plans for Halloween.  We were going to go to the Portland zoo and trick or treat through the park during the day. 

Saturday October 31th,  Gabriel vomited.  Hannah hadn't shown any more signs she was just frustrated with being home.  So we made it a day of scary movie watching.  Disney Halloween town marathon and we introduced the kids to Beetlejuice.   Robert kept teasing he was going to put on Poltergeist or Alien.

Trick or treat time came.  I looked at Robert “I think Gabriel is going to be trick or treating in our hallway.”  Robert nodded.  We had discussed this plan earlier that day.  He had gone out on a reconnaissances mission to buy special treats.

So we dressed the kids up.  Robert took Hannah out to several houses on the block  because she really seemed fine.  I would let Gabriel stare out the front window in his vampire costume (his sunken eyes and paleness really added something to the costume) and wave to his friends when trick or treaters came to or door.

When Hannah and Robert returned.  Robert went to our bedroom.  I grabbed a ton of hats from the kids  dress up box and delivered them to the bedroom.  Robert looked amused.

So I gave Gabriel a bucket and carried Hannah to the master bedroom door.  Gabriel knocked.  Robert opened the door slowly and pretended to be a stooped elderly man constantly repeating “Only one.  You can only take one candy.”

Me and the kids laughed. 

Robert closed the door.

Hannah complained.  I opened up the door picked up Hannah and placed her on the bed.  “You have a helper.”  Robert started conspiratorially talking to Hannah about what he was going to do next.

Gabriel walked the loop that goes from our hall to our front room, living room, through the kitchen and back to hall holding hands. We were pretending we walking to another house.  

Gabriel knocked again. 

Robert wore a sombrero  he talked to us in Spanish.   “Uno,  Uno, Uno!”  he repeated pointing at the candy.  Hannah tilted her head and laughed.

So the pattern repeated.  Robert was a pirate, deranged rabbit from the holy grail, a tiger and finally a headless man.  

Gabriel, Hannah and I laughed so hard. 
Later,  he told us it was the best Halloween ever.

--Mom

Last, Monday, Gabriel had an extra science class after school, so Hannah and I went to pick him up.  Normally, he takes the bus to an after school club.  I was feeling exhausted and the thought of taken him somewhere else and picking him up again seemed daunting.  So I said “Why don't we head home?”

“That sounds great”  Gabriel smiled  “I have stuff I want to do at home.”  then my mufflers came up he started talking about Bakugan, Pokeman and Goosebumps.  The only three subjects he seems able to have a lot to say about and trust me it is not that interesting.  (I mention to him constantly that I love Spore, but I don't talk to him endlessly on the subject.)

“You can't do any of that till you get your homework done.”

“Right”

We headed home and got through the what's for snack debate and then sat down to get his homework going.  At the beginning of the week Gabriel gets a pack of math work due that Friday, a spelling word list and a daily reading/writing assignment.  That Monday he got some uncompleted class work too. 

I went over again how he needs to get work done in class.  This has been a problem since Kindergarten,   he will actually debate any subject with me for thirty minutes then just get a project that takes at the most fifteen minutes for him to do.  I find it draining and annoying. 

He started the math work.  This conversation was interesting,  it was on graphing and he was filling me in on his techniques on how to get this done quickly.  I just nodded “Great idea Gabriel.”  Midway through I needed to remind him to sit so he wasn't falling out of the chair.  He got the first two pages done.  He read me and Hannah a book on the history of popcorn.  Truthfully, I didn't know all that stuff.  Of course after Homework time we were going to have to make popcorn. 

We got all that needed to be done, and left two pages of math for later that week. 

I made popcorn with an air popper exciting him and the night progressed well.

The next day, he went to the after school club.  When I picked him up he told me he finished his math.  When we got home I checked his homework folder.  There was reading homework to sign off on and flyer's for field trips and school stuff but no math homework.

“Gabriel where is your math homework?”

“Oh, “T” has it.”

This is bizarre T doesn't even go to the same school as Gabriel.  “You need to get it back tomorrow. OK!”  I had a ton of other questions but decided it was a seven year old buddy thing.  T and him were probably participating in some sort of boy teasing friendship ritual.

“Yes, Mom.”

So it nagged at my brain but it was only Tuesday so there was time.  Besides we had Cub scouts to get ready for so I let it go.

I reminded him the next morning. 

When I picked him up he told me he got it back it was at the front desk.   I found that odd.  What is going on.  So we went home and I went back through his folder.  It was missing.

“Gabriel you homework isn't here.”

“What?  I put it in my backpack.”

“It's not here.  What is going on?”

“I think “R” went through my backpack and took it.”   I took a breath.  My parent senses were tingling.     We had taught him to share, we taught him to be guarded with his body, we hadn't taught him to demand respect with his personnel items.  I was starting to think there was more to this then friendly teasing. 

 “They should not be going through your backpack.  It is OK, for you to tell your friends to leave your homework alone.   They should not be taking your homework..  It is your responsibility Gabriel.  You need to know where it is.”   It was Wednesday this alarmed me.

Since, the day before it ended up at the front desk.   I called the club to ask if they had seen it.  While I was on the phone the story changed.   “Gabriel where were you when you last saw it?”

“By the front desk,  I had to tape it up.”

Internally I was going “What?”

The women on the phone was looking while I was still trying to ascertain what had happened.  “Why did it have to be taped up Gabriel?”

“Well “R” was stepping on it and it got a hole in it”

I believe I rubbed my forehead with my right hand in aggravation.  While the women on the phone told me she couldn't find it.  I realized this was not the time to figure out what had happened.  I put a finger out to pause Gabriel.  Robert was home by this time and offered to let me go look.  “How late are you open?”

“Eight” the women said.

“May I come look?”

“Sure.”

I went and looked in all the rooms he mentioned.  I went through the trash and recycling.  Meanwhile, my head was going through scenarios that involved teasing, and destruction of homework.  In the end I knew it was Gabriel's responsibility.  He needed to tell an adult when the situation was happening not hours later.  I didn't find it.  I smiled and thanked the coordinator.  “Just so you know this is the second day in the row he has misplaced his homework.  He wont be coming tomorrow.  He needs to understand that he's got to keep track of it.”

She nodded

I went home.  Robert and I took away his video game privileges.  We reiterated that his backpack was his and no one else should be going through it.  It was OK to tell them to stop.  He needed to keep track of his homework.

I emailed his teacher and sent a note requested a new math packet.  I offered to print emailed copies, because as you know the school budget is tight.  Every piece of paper is counted.  (Gabriel's homework last year got reduced because they could not afford to print as much.) 

He was sent home with a new packet.  We redid it that night.  The next day Gabriel had a fever and could not go to school.  His homework was not turned in by Friday.

I really tried.

--Mom

Ps. I tried to scan them on Friday by email.  I got called to nurse Gabriel and Hannah and never came back to the computer room.  The pages were still in my scanner this Tuesday.

-- Dad

We weren't disappointed.

Hannah is taking a mid-day fever nap near the office as I write.  She woke this morning groggy and eyes half-closed.  Her fever was running in the 100-101 F range. Gabriel woke with rosy cheeks as well.  We're tracking dosages on a post-it attached to the locked medicine cabinet.  Every 4-6 hours, we're documenting a new dose, time, and kid.

Being that Gabriel is prone to throwing up when he gets a fever, I've asked him to carry around a round, plastic bowl.

"This is your friend," I introduced the bowl to Gabriel.  "Take him with you wherever you go."

"C'mon friend," Gabriel said, towing the bowl to the tv couch.

Now that Hannah is also sick, Gabriel insisted she get a bowl-friend, too.  Hannah doesn't throw up, per se, due to a surgical procedure that makes her stomach a one-way event.  We relieve her gas and throw-upness via g-tube.  Still, it did seem fair, so I pulled out a small plastic bowl and made similar introductions for Hannah.

"Have you named yours?" I asked Gabriel.

"Tom," he said.

"That's sensible."

"And Hannah's is named Jerry," Gabriel said.

So Gabriel and Hannah are carrying Tom and Jerry with them wherever they go today.  And we'll keep score in 4-6 hour increments on the medicine cabinet.

-- Dad

Her past evaluations had been at school without me around and about ten minutes in length in a classroom setting.  She was usually distracted.  So the adults with her couldn't see her make choices or show her understanding.  She was too busy watching the other kids. 

I decided we needed to help the process along.  So I put us into the long waiting list for an evaluation through the child development center at Hannah's  hospital.

I told her about it before we went.  I explained if she didn't show her communication skills, she would be stuck in this limbo a little longer.  She seemed excited.

I brought some things I knew would help:  three specific toys.   The first was a box of cards that represent nursery songs.   It really is the only thing she has ever been interested in choosing between visual cards.  I would lay out the cards in front of her and she would choose one. 

She would choose by eye gaze and occasionally touching them.    The second was her MP3 player by Playskool which consists of one big button that she pushes to operate and switch songs. 

The third was the Learn Through Music Plus by Mattel.   It has an interactive touch screen that generates different songs depending on what screen you're on and what you touch in the pictures.

Hannah was on – really on – this day!

She showed the specialist that she would look at all her choices, then make one with the music cards.  She also encouraged the specialist when she understood her choice with a “Yay!” out loud.  She operated her other toys showing that she did know how to use buttons.  She does lack a certain finesse, she kind of hits at the toys till they work.  But she obviously understood how to use it.

Eventually, the specialist  brought out her own cards and had Hannah make choices.  Hannah complied.

She agrees that Hannah is ready to try a device.  I have some major homework of putting together a notebook that has pages that works like an eye gaze device.

It is nice to move forward.

Hannah chatted all the way home excitedly.

--Mom

"There's a lot of people at the door!" he cheered.

I walked to the door with him.  "You can open up," I said.

Gabriel opened the door.  A young lady stood there, and she quickly introduced herself and the half dozen plus young people behind her.  "We're from a local church, and we'd like to rake your lawn."

Our lawn was ripe for the raking, of course.  Over the last two days, the large, wide-leaf tree standing directly in front of the house coughed up half of its golden leaves.  They covered the lawn and the driveway.

"How much would we pay you?" I asked.

"It's free."  She handed me a card from her church, the East River Fellowship .  "We just want to introduce people to our church and help out the neighborhood."

I asked a few more questions and again offered to donate money.  She politely refused, and I took her up on her offer.

As she and her large group of helpers pulled out their rakes, I asked Gabriel, "Wanna help?"

"Yeah!"

Gabriel and I threw on our shoes, hunted for our own rakes, and joined in the work for a few minutes.  The church group worked well together, chiding each other with small talk along the way.  They worked efficiently, some raking, some bagging, but teased and jostled each other along the way.  This wasn't a solemn event or a check-the-card, forced community project.  They were having a good time.

Gabriel and I "finished" quickly, having done way less than 5% of the work.  I asked if we could donate to the church again.  The same young lady I had spoken with before called over the youth adviser.  He again turned me down, explaining that they just wanted to help out for the sake of helping out.

Janette and Hannah, having donned coats, joined us on the short ramp that leads to our front door.  Hannah eagerly followed all the young folks raking, beating bushes, and bagging leaves.  I sang a few songs for her, and she clapped enthusiastically.

The church team finished raking in about ten minutes.  They packed leaf bags and tools into a pickup nearby and plotted a move to another neighbor's door (and probably their lawn).

"Thanks again," I called to the advisor.  Knowing that they were probably out drumming up interest in coming to their church, I apologized, "We're Jewish."

He smiled, maybe shrugged.  "It's a good mitzvah you did for us.  Thank you," I said.

They headed off to their next job, making the neighborhood a better place.  I marveled at their genuine display of Tikkun Olam - the Jewish concept of repairing the world through social action.  In this case, these kids literally reached out and made the neighborhood a better place through an unrequested and uncompensated good work.

What a great example for both Gabriel and Hannah to see.  I hope our family, and our neighborhood, will find ways to follow their lead.

-- Dad

Having children messes with one's reality.  They require all your time, and the world at large is not designed to accommodate babies' and toddler's needs.  Easy tasks that required no forethought before becoming a parent change into cumbersome challenges. 

When I became a parent, showers were no longer a right.  I needed to figure out what to do with the baby (who really just wanted me to hold him).  So it became a take-turn type thing with my husband.  Robert  took  care of Gabriel  while I showered for five minutes.  Eventually, Robert  needed to go to work.  So I needed to shower around his timetable or find a way for Gabriel to be safe and happy while I did this.  In came the bouncy chair.   When Gabriel grew out of that, then I needed a playpen and Sesame Street.  Now he can pretty much putter around the house alone for five minutes while I shower.

Hannah took this reality shift to a new level.  Showers became 2 minutes at the most.   For the first 3 years of Hannah's life, my showers were not possible without another adult in the house.  She could pull the vent off, take out her g-tube, or just stop breathing in some weird way without me knowing.  I could not even  take the trash out of the house to the curb; there was too much that could happen that would be life-threatening in that time period.  (this stuff was happening several times a day - it wasn't just a what-if situation)

What I have learned from these experiences has shaped my reality into a life view of  'don't  sweat the small stuff.'  I appreciate every moment of leisure I get.  I  try to keep that critical voice in my head on mute and live in that state of yesterday is the past, tomorrow is unknown, and today is a gift.  I know it is hokey, but it is how I get through the day. 

Sometimes, I must admit I do get baffled by other's realities.   I've had a week of people totally making a fuss over small stuff, and it takes all I have not to laugh at them or just say, “Whatever.”

--Mom

-- Dad