Happenings...

A lot has been happening around here over the last few days!  

After a weekend of illness in the house, with Brian feeling the worst, I decided to keep both boys home from school on Monday.  I was definitely taking Brian to the doctor - he was complaining that his mouth hurt and his ears hurt.  I saw white spots in his throat and for sure thought it was strep throat.  Gavin was acting fine - but my gut was telling me to bring him to the doctor, too.  You just never know with Gavin.  He rarely complains so I wanted to make sure he didn't catch what Brian had.

Sure enough - Gavin had an ear infection.  His right ear - the ear that lost its tube.  And poor Brian had a double ear infection.  I learned a lesson from the doctor, too.  He told me white spots don't always mean strep.  It could just be signs of a virus... which luckily was the case for Brian.  So both boys are on antibiotics and on the mend.  The doctor assured me that they weren't contagious and could go back to school.

Tuesday morning came around and we were all getting ready for school when Brian had an epic meltdown.  Big tears and hugging me and just breaking my heart.  I made the decision to keep him home thinking he must still be feeling bad, the poor thing.

Gavin was happy to get out of here!  We bundled him up and waited outside for the school bus while Brian snuggled inside on the couch.

It has been mighty cold here over the last few days!

I waved Gavin's bus goodbye and came back inside.  It didn't take long to realize that I had been completely manipulated.  First thing I heard was, "Here comes the tickle ghost... here comes the tickle ghost..."  

And then, "Let's play indoor soccer, Mama!"

Well played, Brian.  Well played.

I won't lie - I enjoyed my morning "playing sick" with my little faker.  I have a feeling I will see this act again over the years.  I can't imagine where he'd get this from.  I never did anything like this.  Faking sick to get out of school?  Who, me??

It is with great sadness that I report that "Ben," our special needs butterfly, has died.  We found him laying at the bottom of our butterfly pavilion.  Unfortunately, it turned into a crazy episode of "animal kingdom" after that with the other ones turning on each other, fighting and looking like they were going to eat Ben.  Just a few minutes ago I peeked in to see two alive butterflies... and one dead one.  Where is the fourth?  Did they eat him?  This beautiful butterfly experience has taken a dark turn.

Rest in peace, Ben.  Thanks for the memories.  I hope they didn't eat you.

I've been busy getting things ready for the Just Between Friends consignment sale I participate in twice a year!  I pulled up the very last of the baby things we had in the basement, including the high chairs, and will start tagging everything over the next few weeks.  This sale is always a lot of fun!

But for sure the highlight of my week so far?  Today when I picked Gavin up from school I suddenly saw him walking out with his teacher!  Not being wheeled out - WALKING!

The walking wasn't new... but something just struck me about seeing him walk out of school and up the ramp to greet me.  I'm sure I don't have to explain.

Thank you for all of the kind words towards Miss Sara after the Resignation post!  She told me she'll start her own blog so you can all keep up with her "Life After Leongs."  I bet it will be like a scathing "tell all."  I knew I should have had her sign a "Non Disclosure Agreement."  Damn it.

Weekend Update...

We've had a tough time since we came home from our trip to DC with Gavin!  The three of us came home with colds.  Gavin and Ed had it the worst and Brian was barely sick at all.  Just when I thought everyone was better - this past Thursday I was hit hard!  Next it was Brian.  And then Ed again.  This time, believe it or not, Gavin is doing the best out of all of us.

We've been just hanging out most of the weekend doing nothing.  Brian's been feeling a lot like this...

Today he started complaining that his "mouth" hurt.  And then his head hurt.  And then he stopped what he was doing and said "OW!!" with his hands over his ears.  This can't be good.  I knew at that point I'd be calling him out of school tomorrow and taking him to the doctor.  But then I grabbed the flashlight and looked in his throat.  White spots.  That sealed the deal.  I'm guessing the doctor is going to tell me Brian has strep throat (which we've gone five years without hearing!) and an ear infection or two (which Brian has never had).  I'm bummed to be breaking our streak.  Poor kid.

Lucky for us, he's been happy!  This morning while I was busy with Gavin, he sat with Ed and made snowflakes with scissors.

And all weekend he has been proclaiming it's "STICKER PARTY TIME" with a loud voice.  All day and night each one of our shirts looked like this... on the front AND back.

For the next week or so, I'll be checking every article of clothing for stickers before I put them in the washer!

Even though Gavin definitely doesn't appear as sick as Brian, I'm still a little concerned about him.  I can't look into his throat (he won't let us) - and he still has a horrible cough that has him on the nebulizer.  I will be bringing him to the doctor tomorrow, too, so he can check his ears and throat - and tell me how much longer he'll need the nebulizer.  He's taking Pulmocort and I don't want him on it any longer than he has to be.  Also, last time he was in to see the doctor he had a great big, hard ball of wax in his right ear.  The doctor traumatized Gavin trying to dig it out - so he gave up.  He told me to put Hydrogen Peroxide in his ear each night for a week.  I literally pour it into his ear and it bubbles up.  Gavin HATES it.  I'm hoping tomorrow when he looks, the wax will have broken up and disintegrated from these peroxide treatments.

Other than that, our resident superhero has been having a GREAT weekend!  He's been walking around getting used to his new shoes and getting into all kinds of mischief.  This morning, he was in the kitchen and I walked into the playroom and left him for a couple minutes.  He saw his cup of water in the middle of the kitchen table and decided to take matters into his own hands to get to it.  He climbed onto the kitchen chair, kneeled up to reach his water and then sat himself down to drink it!!  I couldn't believe it.

He was pretty darn proud.

Every day I have to get used to something new.  I love it.

That's Just Gavin...

The last couple days have been quiet around here.  Yesterday it was just the four of us.  Gavin, Brian, Me... and the GIANT cold that has taken over our house.  Everyone is sick.  Daddy, Mommy, Gavin and Brian.  As usual... and unfortunately... Gavin has it the worst.  He's been running fevers up to 101.3 both days.  I haven't panicked about him only because he's eating, drinking and active.  He sounds really awful though.  It's ironic that we'd come home from our visit to Washington National Medical Center with a cold.  The nurse practitioner, Meganne, and I discussed having Gavin add a Pulmonologist to his list of specialists.  When I told her that he has a hard time managing his secretions when he's sick (and coughing like he is now) she said I should try to get him a "Cough Assist Vest."  The pulmonologist would be able to help me accomplish that.  He has used these vests before during hospitalizations and I seriously wanted to try to fit it in my purse on the way out.  I'd be very excited if I could get one for him.  And I really wish I had one now.  Until then, the percussion I do on his back with my cupped hand to get him to cough will have to do.  It's hard for me to sleep at night as I'm typically glued to the monitor.  When Gavin's sick, his breathing is terrible - and his apnea comes right back.  I usually have to go in and suction him multiple times.  My tricks when he's congested are to smear Vicks on the soles of his feet and put socks on... leave the Vicks jar open on his dresser for added vapors... and turn a cool mist humidifier on low along with his heater on low.  I know I don't need to tell the Moms out there - taking care of sick children when you are sick is the pits!

Yesterday morning we had a visit from Orthologix!  They came to deliver Gavin's awesome new orthotics!  He is still wearing "Sure Steps" - but in bigger size and a new design.  We chose the Superman logo which was transferred onto the plastic molds.  I mean what else would we choose but Superman?  So all day yesterday and all day today we wore them two hours on, two hours off to break them in.  Come Monday he'll be good to go to wear them all day at school.  New and bigger orthotics means new and bigger shoes!  I immediately ordered four different pairs to try from Zappos - they ship free and I can return the ones that don't work for free.  I love when I don't have to leave the house and shlep kids and strollers and such.

Brian has been a remarkably sweet brother over the last two days.  If he goes to the refrigerator to get himself a drink, he gets Gavin's cup and hands it to him.  If Brian and I are reading or playing and Gavin wanders off into another room - the slightest cough from Gavin will send Brian running.  "I'm just going to go check to see if Gavin's okay, Mommy.  I'll be right back!"  And, when he usually kisses Gavin he freaks out when his face gets wet from his brother's drool.  But yesterday he gave Gavin a big kiss - followed by a hug that he forced on him - and when I asked if he wanted a cloth to wipe his face off, his response got me a little emotional.  "That's okay, Mommy.  That's just Gavin.  His face is wet a lot but I love him."

Some days I'm honestly not sure how I got so lucky.

Never A Dull Moment...

Well - Ed and I went away.  We relaxed, I worked on Brian's very late two year video (oh, yes I did!) and we ate a lot of good food.  But mostly - I was excited to sleep.  A lot.  As it turns out, it was fortuitous that I got all that extra sleep.  Someone was watching out for me.

While we were headed back to reality, I got a message from home that Gavin developed a runny nose.  We were on our way home, so I didn't panic.  When we got there, Gavin seemed a bit "off," but he was still smiling and his nose really just seemed runny.  I gave him a bath and we put him to bed.

I sat in bed for a long time and couldn't shake a weird feeling all night.  When it was 12:30am, Ed turned over and asked me if I was going to go to sleep - and I said I couldn't for some reason.  Finally, close to 1am, I put my head on the pillow.  I was just starting to drift when I shot up with major anxiety and felt the need to rush to Gavin's room.

When I got there, he was lying in vomit and having difficulty breathing.  I unzipped his bed and picked him up - quickly realizing he was burning up and was like a rag doll.  After yelling for Ed, I brought Gavin to the bathroom and took his temperature - 103.6.  He got a dose of Advil... and I also decided to try his rarely used nebulizer to see if that would help.  We didn't even come close to finishing the treatment before I announced that we needed to get him to the emergency room.

Ed helped me pack furiously and I rushed Gavin to our local hospital.  I debated for about two seconds if I should take him to DuPont - his main hospital that's an hour away - instead, but he was truly in distress.  He needed help with his breathing immediately.

We got to the local hospital around 1:30.  They took a chest X-Ray, put an IV in (and got it in on the first try!!) and suctioned his nose to test for RSV.  The RSV came back positive.  We were all pretty shocked.

As soon as Gavin was stable on oxygen, they called for a DuPont transport team to transfer him.  I had an hour before they got there and was SO grateful when his nurse said she'd bring in her paperwork and sit with Gavin while I rushed home to pack some more essentials.  Like Gavin's portable DVD player with his Little Einstein movie.  I'd rather leave home without my toothbrush than that - it makes him so happy.  And it makes traumatic things less traumatic.

We all got to DuPont at 4am~ish and were brought right up to the floor where it all began.  We spent close to three months living on this floor when Gavin was an infant and had... RSV.

Did I happen to mention that I haven't slept since Sunday morning when I woke up at 9?  Please don't examine this post for grammar or typographical errors.  Thanks in advance.  *yawn*

Gavin just fell asleep - 11 hours after this all began.  He's exhausted and working hard to breathe.  They have him on Oxygen and are treating him with that cough assist vest that we fell in love with last time we were here.  

He has a pretty ugly cough - and his chest sounds very congested.  There's absolutely no telling how long we'll be here.  But we do have something on our side.  Gavin's main doctor is here and in charge of him!  That doesn't always happen.  Dr. Raab is not an alarmist and is pretty laid back about discharges.  They just did rounds and decided - since Gavin was sleeping - to turn off his oxygen.  If he can stay at a certain oxygenation percentage for a few hours on his own - we may be able to go home today.  But it all depends on Gavin.  Say a prayer!

As much as I'm worried about Gavin, I'm equally worried for Brian.  He had just welcomed me home.  Last night he didn't want to go to bed - he wanted a second book and then a third book and then more tickles and then another hug.  He got all of that and more... and we talked about all the things we were going to do together this week.  And then this morning when he woke up, Gavin and I were gone.  And... he has a cold, too.

Truly - it's never a dull moment at our house.

Dealing With Uncertainty...

Brian has been home from school the past two days - he has a cough and the sniffles.  It's hard to say if it's a cold or allergies but either way it was a great excuse to stay home and hang out with his favorite Mommy!  Each day we watched Gavin and Miss Sara head to school on the bus...

...and then we'd get down to business.  We conquered important projects like Pirate Ship steering, fort building, train track management and fending off dinosaurs.  Although, judging from what snuck into my back pocket - unnoticed until the next morning - I'm not so good at the "fending off" part.

On Monday, when we pulled into Gavin's school parking lot, we were surprised by two huge fire trucks!  The whole school was treated to a presentation about fire safety.  Gavin learned all about the trucks and equipment - and even got to climb in and explore the inside!  

He even got a shiny new fire hat from the nice fire man.

Gavin is still doing so well in school - and loving his new therapy team.  Sara tells me he really enjoys working with paint - loving when it gets all over his hands!  The boys often bring art projects home from school.  I have memory boxes for each of them (Gavin's is nearly full!) and save some of the art projects - but it's really impossible to continue to save all of them.

I recently discovered the most adorable app to help me with my dilemma!  It's called ArtKive - a place where you can safely "archive" your kids art!  When I got it, it was free.  I have no idea if it's still free - but I highly recommend it either way!  Whenever the boys come home with some artwork - like when Gavin came home with his apple tree...

...or Brian came home with handprints and extra love for his Daddy...

...I take a picture of it with my phone.  Each of them have their own file of artwork and as it comes in it automatically gets shared with Ed.  Ed gets it in his email and is prepared to gush over their masterpieces when he walks in the door from work.  Seeing the boys faces light up with pride is the best feeling ever.

Last Friday the boys had a dentist appointment and, thank God, had good check ups.  I don't ever want to project my dental phobias onto the boys.  So far they have NO fear and get lots of compliments from the dentists on their behavior.  And I get compliments on their hygiene.  Whew.

 They give the dumbest, cheapest toys after their dentist appointments...but Brian, especially, treats them like gold bars.  I'm thinking of shopping at the dentist for Christmas.  They are on to something.

 This Thursday I'll be taking Gavin out of school again to head to DuPont.  We'll be meeting with his genetic team and getting some blood drawn for testing.  We've been dealing with some uncertainty since Gavin's genetic testing came back and it's a little stressful.  If you could send lots of positive thoughts his way and ours, we'd appreciate it.  I apologize for being cryptic, but it's not worth stressing multitudes of people if it turns out they are wrong.  We'll just have to wait and see.

They say when you're dealing with uncertainty - you should focus on things you can control.  So I choose to control my attitude and keep it positive.  And I keep focused on Gavin who continues to amaze and inspire...

Thank you for loving my family.

Star of the Week...

Brian has really been enjoying being "Star of the Week" at school!  Today he came home bouncing off the walls happy.  I don't know what was said, but his friends were to give him compliments today.  You could tell his ego was pretty inflated this afternoon.  Tomorrow he gets to bring in TWO "Show and Tells!"  One has to begin with the letter of the week - D - so he chose to bring in his Doctor's Kit.  And the other toy he chose was his took kit with a very cool working drill.

This morning, Gavin woke up pretty miserable.  He has such a hard time with congestion due to his low tone, not being upright more and not being able to cough productively.  It sucks when he's sick.  But I noticed he became MORE agitated when he was on his back.  So off to the pediatrician we went. I was concerned about his ears.  Fortunately, everything checked out fine.  He's still home from school and, since tomorrow is the last day of the school week, he will skip tomorrow too.  I think by Monday he'll be back in shape with less boogies to share with his friends.  That's the last thing they need in class!

So while I buried myself in insurance papers and faxes and phone calls - Miss Sara and the boys took a walk to get some fresh air.  

Brian was such a nice brother to open and hand Gavin his milk for the ride. So sweet...

 I was able to accomplish much in the quiet house while they strolled around our neighborhood.

If I hadn't felt convinced that Gavin was having a rough day - the proof was his near two hour nap this afternoon.  Something that rarely happens!  Sleep equals healing, so I was happy to miss him.  Once he woke up, we had an early dinner and then the three of us were off to the hair salon.  It was time for the boys to get their monthly fresh cuts!!

Gavin went first, by Brian's request, and I don't have a single photo because he sits on my lap!  Here's the after pic so you can see how handsome he looks...

And our Star of the Week?  He is such a ham.  He loves the whole experience...especially checking himself out in the mirror!  (Do you blame him?)

 I don't know what it is, but I love keeping the boys hair short and neat.  It must be my family's military connection.  Or maybe I've been influenced by the Jersey Shore boys like Pauly D and Vinnie.

For a girl who thought she'd knew nothing about having boys, I'm now requesting a "Fade" at the hair salon.  I'm shocking myself.  Next thing you know, I'll be a hockey Mom.

Uh...yeah, that won't happen.

Happy Hour!...

Gavin is still battling the cold that his little brother passed on to him.  He was home again today...and will remain home tomorrow, too.  Gavin always takes much longer to recover from anything.  He has a real hard time with congestion, so today I asked Miss Sara if they could do more upright activities when they played together.

So Gavin enjoyed music time...

...and table time!

What was I doing?  Oh, the day I had.

Well, besides taking Brian to and from school, a lot.  Brian was well enough to go back to school this week and it was a good thing because he's "Star of the Week!!!!"  The first day the class interviews him - asks him what his favorite food is, his favorite parent (just kidding), etc.  The second day he brings in his favorite book from home and the teacher reads it to everyone.  He chose "Good Thing You're Not An Octopus!" which is an adorable book that our neighbors, the Roberts, gave him!  The third day, tomorrow, his friends give him compliments.  And on the last day he can bring something in for show and tell.  (Pick me!  Pick me!!)  He is so happy to be the star this week!!

But most of my day was spent babysitting a plumber.  Lately we've had a string of bad luck in that department.  Sunday we had to call out a refrigerator repairman because I discovered a leak in the basement - our refrigerator's ice machine had been slowly leaking and it made it's way all the way through the floor and into the basement.  Lovely.  Then, while we were down the basement Ed noticed two other pipes that were leaking.  Yahoo!  So this morning at 10:30, the plumber showed up.  Our usual plumber is out on medical leave so he sent his cousin.  Turns out, his cousin took a liking to me.  He didn't leave the house until 4pm.  I now know everything about him.  About his wife.  About his friends.  About his eating and drinking habits.  About his medical conditions.  I guess I just have that kind of face.  He was a very nice guy - but after most of the day with the water off, a sick Gavin, a mountain of things to do...it was a little much.  You don't really realize how dependent you are on water until you spend the day without it with two toddlers, one that's potty training.

In between chatting with the plumber, I had a lot of insurance paperwork and phone calls to make.  I think most people don't realize that having a special needs child means you are constantly dealing with, thanking, cursing, pleading with or fighting insurance companies.  I have been very lucky along the way.  Between our primary insurance and Gavin's medical assistance, which he received at birth because of his disabilities, I have been able to somehow...someway...get them to say yes (even if it took a LONG time to get to yes) to many things.  Let's just hope it stays that way.

Ed is out tonight for 'happy hour' with some work friends...and tomorrow he's going out with a very good friend of his that he hasn't seen in a while.  I'm really happy for him.  But to be honest - I'm happier for ME!!  No offense - I love my husband deeply.  But Ed going out means I don't have to COOK!!  Woo HOO!  Actually, I don't even have to TALK!  So tonight, I am coloring my hair (as I type this!)...eating a Tootsie Pop before dinner...and watching TV shows that Ed doesn't like.  After the day we had here, tonight is my kind of happy hour!!

A Bit of Good Luck!...

A lot of fun things have happened over the last 24 hours!

Yesterday was the first day to shop at the Just Between Friends Consignment sale.  And, because I volunteer, I am one of the first to shop - which is so exciting!  I go in with a game plan and a prioritized list of things I saw the night before that I hope to still see there.

I got everything I wanted - and more.

One of the exciting finds was a beautiful wooden "restaurant style" highchair for Gavin.  He has been in his regular high chair forever.   It fits right up to the kitchen table and he loves it!!

The nice thing about the chair (besides the price and how cute he looks in there) is that it forces Gavin to sit up and work on his trunk strength.

This little boy who many thought would never sit up at all.

Ha.

I also got clothes for both boys, shoes, toys for their upcoming birthdays and Christmas (including a brand new set of Melissa and Doug Jumbo Cardboard Blocks for FIVE BUCKS!!).  I even got a few toys for both Brian and Gavin's classrooms.  A bucket of musical instruments was one of the things I got for Brian's classroom...and a set of these Imaginarium foam building blocks (check out the retail price!) for FOUR BUCKS!!

But the very best deal of the night has me giddy with excitement.  Someone was selling a Bugaboo Frog stroller.  This is the stroller we bought when I was pregnant with Gavin.  We had first child syndrome and had to have the best of everything.  And by we, I mean me.  It's a crazy expensive stroller...but, as it turned out, it was the ONLY stroller that worked for Gavin.  The seat tilts in space - instead of the seat back reclining alone.  Gavin had such low tone that he would have slumped right down in a regular stroller.  We love this stroller so much.  But I digress....

Someone - an angel, really - was selling the stroller - and by selling I mean giving away - for a hundred bucks.  I heard someone talking about it while standing in line to get in to the sale.  If I hadn't heard her mention it, I never would have ventured back to the stroller section.  Why would I have?  But once I heard - I went straight back and slapped a SOLD sign on that as fast as possible.

I've already washed all the fabric, cleaned up the frame and put it on Craig's List.  These strollers fetch $400-$500 on Craig's List and are highly coveted.  So I'll be flipping this stroller and adding more money to Gavin's equipment fund!  Woo Hoo!!

Hey!  Anyone in the market for a Bugaboo Frog?  *smile*

The other exciting news?  I found one of the special needs stroller that I want for Gavin on Craig's List!  A family in Queens, New York (about 2 1/2 hours away from us) is selling a BRAND NEW Special Tomato EIO Push Chair for $250!

The Bugaboo we have will hold Gavin up to 37 pounds.  He'll be there before we know it.  This stroller can grow with him until he's 90 pounds!!  And the stroller itself is only 22 pounds.  I'm so excited!!  I still want to get the Convaid Rodeo at some point - but this stroller buys us time.  And saves my aching joints.

So Granny and I will be going on a road trip!  My Mom is going to drive with me to Queens on Saturday morning.  We'll be like Thelma and Louise!

Why Granny and me?  Well... there is some bad news.  Both Gavin and Brian have colds.  I was up with Brian much of last night and I kept him home from school today.  Gavin seemed fine until dinner tonight - when he was hit as well.  I'm not going to make two sick little boys sit in the car all day.  They can have some bonding time with Daddy.

I'm glad that Gavin went to school today.  When I went to pick him and Sara up, two of his therapists came out.  Whitney, his speech and feeding therapist, and Erica, his new Occupational Therapist.  It was my first time meeting Erica so I was thrilled!  They both said they thought Gavin was doing so well.  And that it helped to have Sara there to help them get to know Gavin faster.  I am getting over my heartbreak from the first week - it was really very hard for me to let go.  Of Gavin...and control.  But in a way, having Gavin get all of his therapy at school takes quite a burden off of me.  I can just enjoy being his Mommy.  Something that comes very easy to me.

The Just Between Friend's Sale runs through Saturday and I hope to keep adding to my Gavin fund all weekend.  Last night's sales alone - from just the pre-sale shopping for volunteers - totalled $265.50!!

Things are looking up around the Leong house.  Whoever wished a bit of good luck on our family - thanks so much!!

Not For The Faint Of Heart...

This morning was Gavin's first, official IEP with the school district.  Even though I had zero intention of sending him to Kindergarten, I still went through with it.  Why?  Well, I was advised to.  And - even though part of me felt it didn't seem to make sense "going through the IEP motions" when I knew we weren't sending him to Kindergarten, I saw several "pros" to the situation.  One - I could actually see what an official IEP was like.  Two - Goals could be written for Gavin that we could work on accomplishing between now and the day that he actually DOES start Kindergarten.  And three - I was dying to know what school or schools the school district was going to recommend for him.  Going through this IEP was the only way to get those recommendations.

So I went.  And I came home feeling VERY bad about myself.  This morning, my world shifted on its axis.

When I walked into the room for the meeting, I saw a team of people there and felt myself having to swallow a large, overwhelming emotion.  All of a sudden I realized the enormity of this.  All of these people were taking time to sit and talk about my son!  It moved me.  Some of them I recognized because they had come to the house to evaluate Gavin, but most were strangers...including the Principal of the school.  As I made my way to the empty folding chair I spotted - two people simultaneously asked, "Is your husband with you?"

Uh..... no?  

I instantly felt shame.  Was he supposed to be here?  Do most husbands come to these?  I didn't even really fill Ed in on the details of the date and time and, to be honest, I'm not even sure he would know what an IEP is.  At this point in Gavin's life, I handle all the therapy and school stuff.  While that may change in the future and Ed will surely and happily be more involved - it hasn't seemed necessary for us.  But instantly I felt like I was getting this off on the wrong foot.  The folding chair next to me remained empty for the entire meeting.

The woman moderating the meeting asked if I had any questions about the evaluations before they got started.  And she motioned to the psychologist who strangely said to me, "I sent you an email, but I didn't get any response from you."  She stared at me quietly waiting for a response.  I came up with the brilliant, 

"You did?"

I felt my cheeks get hot.  What the hell?  Second strike against the unprepared Mom!!  What was this email?  Was it a question I was supposed to respond to?  She never elaborated so I spent many moments during the IEP wondering and worrying that I forgot to respond to an important email.  Then I got annoyed - she's the professional!  If I didn't respond to an email, couldn't she have followed up with a call?  Another email?  A letter?  A smoke signal?

(I got more annoyed when I came home and searched her name in my emails.  When I found it and re-read it I remembered getting it and thinking that it didn't need a response.  She was thanking me for having her into our home to evaluate Gavin and said if I had any questions to feel free to contact her.  I didn't have questions - so I didn't contact her!  There was no reason for the awkward encounter this morning.  So frustrating.)

As the meeting went on and we read through each section, the moderator would stop and ask me if I had any questions or had anything to add.  

"Nope!" was my anxiety ridden, thoughtful response.

Inside I was thinking...what can I say?  Most of the report was accurate.  Although I know - and you know from reading - that Gavin has made GREAT strides and is a true Superhero in our eyes, the truth remains that he is extremely delayed.  He scored "low" or "less than low" in every area:  communication, gross motor, fine motor, safety awareness, social, developmental, you name it.  It's something I choose not to focus on that much.  And quite honestly, when you live with him and know how far he's come - it's easy to forget a lot of that crap.  Honestly.  But even these evaluators who met him briefly and came up with pages of written reports and recommendations - they got a lot of it right.  And reading their IEP goals - like getting Gavin to recognize his name or working on independent toileting or using his walker without help - I realized they were all things I agreed with.  And when they told me that Gavin would need to be taken out of class for all of his therapy, but would participate in activities like recess and lunch with his peers...and that they would re-assess as time went by if he could participate in other activities - I thought I should feel outrage!  Anger!  Like he wasn't included!!  But I didn't.  I got it.  If Gavin was getting his therapy in a classroom with other things going on - he wouldn't be able to focus.  But was that the right thing to do?  I started to worry.  I always hear other parents talking about their IEPs - what they had to fight for, stand up for, bring legal representation for, etc.  I started to worry that because this seemed to "easy" - that I must not be doing it right.

There was an administrative supervisor there that mentioned throughout the meeting that she hoped I would consider holding Gavin back.  That they all thought he would benefit from another year in "pre-school" to give him more time to mature and progress.  And she mentioned the new classroom that I referred to the other day that will be right there in the Kindergarten Center.  Each time she brought it up, she turned her head to the side and said with a concerned face, "Gavin would be a 'pioneer' in this brand new classroom" almost like it was a negative.  I already knew that I was holding him back going into this meeting.  And I already knew that it was that pre-school classroom that she referred to that I was looking at.  But when she said that Gavin would be a pioneer - I only saw the positive!  It would be a small classroom for kids with multiple disabilities like Gavin - and they would also bring in some typically developing peers.  Since it is brand new, it would all be tailored to Gavin and the other kids!  I think this is amazing news and when it opens (in August) I am hoping Gavin will be walking in with Miss Sara.

In the end, the only thing I really pushed for was that Gavin be allowed to have an Aide of our choosing (in our case, Sara) to go to school with him...whether it was the pre-school classroom or Kindergarten.  There was no immediate answer - it was something they had to 'look into.'  

And also in the end, when I asked what their Kindergarten recommendations were - it seemed like they only had one in mind.  I was expecting a formal recommendation or two.  It seemed like they wanted to formalize the IEP and then contact schools to see if they would take Gavin.  The only school that they had in mind for him today was a school called "CDC", which stands for the Child and Career Development Center.  I have heard from other parents that this is like a warehouse for kids with pretty severe disabilities and emotional issues.  I have not personally visited this school - but from what I have heard and read, I'm not interested.

I spent some time after the meeting speaking with the supervisor about the pre-school classroom and expressing my interest.  She was very nice and even asked if I had any photos of Gavin so she could put a face with the name.  I made a mental note to ALWAYS bring photos of Gavin to every IEP meeting for the rest of his life.  I felt so grateful to her for asking to see him - and telling me how much she wanted him in the new pre-school classroom.

I walked to my car...got in...closed the door...and sobbed.

What will become of Gavin?  Will he be destined for a life of being shuttled to buildings in the hope that somehow, someone will unlock him?  Will he talk?  And walk?  And go to the bathroom alone?  Will he learn his shapes...and his name...and how to feed himself?  

And then there's me.  Have I held him back?  Was I completely unprepared for his IEP?  I started to think about his day - I don't spend every moment drilling him with educational activities.  Should I?  Would he be doing so much more with a better Mom?  If I were smarter (I mean it) and more disciplined (truth!) I would absolutely home school.  Then I wouldn't have to worry about schools I don't like - or facing the fact that he's so delayed - or sending my defenseless, non verbal, sweet, trusting, beautiful child out into a world filled with sickos.  I pulled into the garage feeling very overwhelmed.

I walked in the house and was greeted by Brian and Miss Sara.  I spotted Gavin in the den and made my way over to him.  I knelt down and he stared into my eyes.  Gavin doesn't make a lot of eye contact usually.  But today, he intently stared at me with eyes that looked almost desperate.  What was he trying to tell me?  I came in with my own baggage so I thought for sure he was saying with his eyes, 

"Mommy - why did you go to that meeting so unprepared?  Don't you love me?  Please don't send me to a warehouse."

But I snapped out of it - distracted by his extremely runny nose.  I brought him into the kitchen, gave him some medicine and instantly he started to cry.  And cry.  When we were going on an hour of him crying and me trying everything to figure out what was wrong - I called the doctor.  You must fit him in right away, I told them.  Gavin NEVER cries - and real tears are coming out of his eyes.  There is something wrong...and it can't be that his Mommy didn't respond to an email or that she didn't tell his Daddy that he should go to the IEP or that they recommended placing him in a warehouse, er, I mean school.  

Gavin and I got to the doctor by hour two of him screaming and crying and almost throwing up from the pain.

Double ear infection.  Oh and the rash that developed all over his legs was a viral rash.  It might be itchy, but Gavin wouldn't be able to tell us or even itch it.  I cried for his suffering.

I cried all the way to the pharmacy for his antibiotic.

I cried all the way home as he sat passed out from exhaustion in his carseat.

I sent Miss Sara home early and, with the boys down for naps, I sat and cried some more.  Once I started crying about the IEP...I remembered all the other reasons I needed to cry.

I'm feeling inadequate as the boys' Mom.  Maybe I don't do enough with them.  I have one child with major delays - and one child with speech delays.  Coincidence?  Maybe not.

We're ALL sick - which may explain my mood.  I feel like crap.  And I am so tired of the boys getting sick.

I miss my Dad.  A lot.

I want my daughter back.  In two days, May 10th, it will be the second anniversary of her birth.  Why did that have to happen???  Why does a lot of the shit that has happened to me...to us...have to happen??  What the hell did I do to deserve this???

Today I just feel...overwhelmed.  Very sad.  Depressed.  With all of us sick, Gavin's therapy is canceled and Brian is out of school.  What I really want to do is lock the door - stay in our pajamas all day for the rest of the week and watch a continuous loop of Disney shows.  I want to lay on the couch, hand Brian the iPad to entertain himself and cry all day.  I want to skip over Thursday and not face the fact for one whole day that I missed out on the chance to raise my daughter, Darcy.  I want to spend at least an hour giving God a piece of my mind.  Don't worry - I know my God can take it.

Having a child with disabilities - especially when he's such a mystery - is so difficult.  There's no real road map - and every new person in his life needs directions.  Every day is another chance for me to make a wrong turn and it's so, very stressful.  It really is.  I just hope, in the end, I don't screw up these kids too much.

If you made it to the end, I'm very impressed.  Today's "Mother's Day Project" will be postponed to tomorrow's blog.  I don't want my tribute to my Mom to be overshadowed with all of my bull*&#@ and whining!  Besides, I'm hoping that tomorrow I'll be better.  Or I'll be up to faking it.


p.s.  Today's photos are totally gratuitous, old pictures from a happy time in my life - posted with the self indulgent intention of cheering me up.