Tuesday's 10

Since I so look forward to checking two of my favorite blogs on Tuesdays to see their top 10 thoughts, I'm jumping on the Tuesday bandwagon too....

1.  Despite my brave attempts to stave off replacing our garage door opener, I think it finally bit the bullet. It usually gets cranky during super cold weather and forces us open and close manually (horrors), so I wasn't surprised when it wasn't moving.  It was the grizzly grinding sound coming from the motor that was just awesome.  Super-Duper.

2. Today was AJ's 2nd rockin' day at school.  Three novel activities were tried...with no tears. I LOVE good days.  They fill my heart with such joy.

3. I've been researching local farms that participate in CSA.  With our house on the market, we won't be planting a garden this year and I'm anxious to keep a nice stock of healthy veggies and meats in the house.  I'm also looking to add more fish into our menus.  We all love fish, we just don't seem to eat a lot of it.  Anyone have yummy recipes? Share!

4. We returned from our trip to Hawaii just a few days ago (blog post coming soon).  My carry-on still smells like coffee and coconuts.  It's awesome.

5. I need to figure out a way to spread out AJ's appointments.  Period.  We work with over 25 people on his team and somehow, appointments seem to get stacked together all in a week. 

6. There seems to be a Steve Carrell marathon on lately.  Which usually means if I watch said marathon I'm bound to see Paul Rudd too.  Love them both.  They make me laugh hysterically...

7. Was Valentine's Day really yesterday?  Despite being exhausted from our trip home, I stayed up late on Sunday night, frosting graham crackers, adding candy hearts for stamps, and handwriting each of AJ's classmates names in the TO and his name in the FROM areas on the edible "love letters" that were his valentines this year.  I made three batches of rice krispie treats and created "Hershey Kisses" by using kitchen funnels and then wrapping them in foil...complete with a little piece with a msg from AJ sticking out.
Am I insane?  Probably.  But since AJ's protest during our vaca hindered him and Grandma from doing these projects...I didn't want that to ruin anyone else's V-day.  And we all know how I/we feel about his school team.  Jeremy and I spent the evening working on a project for his current class and watching our loaded DVR.  I am NOT complaining...we certainly could not have topped our week+ in paradise.

8. Speaking of classes, Jer only has four weeks left of his class and then he is officially done with his BA.  I'm trying to plan a special celebration for him (shhhh don't tell him) but nothing seems to live up to his amazing accomplishment. 

9. AJ has this obsession with ICEE cups.  I found them one day, on a whim, at the Dollar Store.  Odd.  But, its a bold flavor, its cold, and packed solid in cups.  Easy to eat and perfect for his decreased oral awareness.  I know, horrible nutrition choice. Lets just get over that. I now have little hands that stand at the fridge and slam the refrigerator door after you've attempted to open it, and reach upward toward the freezer.  Sigh.  Its becoming quite a problem and I fear an ICEE strike, via Mommy, is coming. 

10. I felt completely relaxed when we left Hawaii.  Slightly stressed while traveling home.  And broken-hearted when I saw my sweet little boy's face when we pulled in the driveway.  His uber tear-stained face, complete with snot drippings and eyes shut, screaming for his Mommy and Daddy.  I'm super thankful we had the opportunity to go on this vacation, I'm super glad we went, we had an amazing time, but he wasn't ok.  He wasn't fine.  And it broke this Mommy's big heart to see the culmination of his week of meltdown.  Yesterday's jet lag brought crabby to this household and today brought uber stress.  Relaxation, where did you go?

Do You See What I See?

It is 5:30 on Saturday evening.  I'm sitting at our kitchen table, staring out our massive picture window in our dining room.  I've been sitting here since 5 o'clock, when I suddenly realized it was still light outside.  I see pretty white snow, thick solid icicles hanging from the gutters, willow trees, a massive field, and cars passing to and from on the 4-lane highway that runs past our house, each with white and red twinkling lights.

If you were sitting here with me, would you see the same things? 

I would venture to say no.

Not all of us see eye to eye. 

AJ's life is filled with countless professionals.  Physicians, Therapists, Teachers, and More.  Almost sounds like a store title.  Pick one from this aisle of expertise.  Complete with tags declaring a guarantee that aisle 2's ideas won't line up with aisle 5's.  And lets not even start on the the other departments.

And here I stand, with a shopping cart, ready to fill it with anything and everything to help my little man succeed in life.  How do I choose between whats just icky, processed generic fit-into-a-mold information and natural, certified organic information? 

I suppose it would be safe to assume that my shopping cart would be where everything melds together and ends up looking as beautiful as Sunday Dinner.  The truth is that sometimes I'd rather just be a 5-year-old with one foot on the base and my hands steering the cart...as I zoom through the store of professionals not stopping to look back.

All these different hands, different opinions, different backgrounds of expertise.  All with the best of intentions.  A big kettle of brew and I'm standing with a giant spoon.....

I've struggled over the past few weeks to inform, condense, and make sense of our recent happenings.  Which means a lack of blog posts. After telling my husband I was having trouble with posting on the blog, his answer was this:

"Life is grand. We're going to Hawaii in 4 days. End of story."

Quite a post, hey?

Our house has been on the market for a month already.  Of course there is drama surrounding that...of course. 

Last week I received a call regarding AJ's transportation to school that completely threw me for a loop...and made us do some serious thinking.  AJ's made it through two winter ear infections, and is still walking despite his continuing growth spurt.  A recent follow-up with his CP doctor allowed me to look at things from the "CP side" of AJ's life.  It was a refreshing and eye-opening visit.  It was another appointment where I left in tears.  GOOD tears, knowing he is in the best of hands and that she's truly in his corner. 

I've been busy prepping for our vacation, which is finally upon us.  Printing detailed instructions, packing, and doing last minute errands.  We are so excited to spend time, just the two of us.  While we are gone, AJ will be partyin' it up with Grandma Cindy. 

AJ's doing ok at school.  We've had some bumps in the road recently.  His therapy sessions are either fantabulously great or horrible.  There has been no middle ground to speak of.  We're beginning to think about his next IEP, which will be in the Spring.  AJ's tall enough to get off the toilet by himself-which is really freaky when you're not expecting him to come around the corner.  He can sign "open" and is emerging with "push".  He's holding his arms up and vocalizing for "up".  He's doing this waving thing...although I'm not sure what it is for certain.  I'd like to think its waving.

He's displaying a not so great behavior of taking his implant off...and pulling his glasses off.  Which means he's maturing, but the behavior is not so welcome.  We're looking at adding a therapy to his schedule and doing a disco-shuffle with all of his therapies.  I'm not sure how this is going to work out yet.

Like I said, big shopping cart and giant spoon.

But you know what? 

We're going to Hawaii in 4 days...

Loose Reference

I found myself overcoming yet another bout of writer's block today.  So after dropping AJ off at school, I'm home, for about another minute or so, and I've been writing. 

I'm sifting through the early chapters rearranging, adding, subtracting, editing, and using the printed copy of our old website as a guide.

And kicking myself.  Oh, Heidi.  I can't even follow it.  It's so sugar-coated.  Sugary sweet.  Like syrup all over the counter and you just can't get your rag, soaked with hot-hot water to clean it all up.  I didn't write about how anything felt. Was I numb?  Where we numb?  Probably.  Tricking ourselves into seeing past reality and our ever present fears.

I read things like "He can sleep through anything!"...followed by a cute smiley face, and groan.  Oh its so wonderful!  It's like envisioning myself hosting a party, not really wanting to host a party, putting on a fake smile and being an oh so wonderful hostess.

Blech. 

That doesn't mean our parenting journey has been all bad, because it hasn't been.  I just wish I would have been honest back then.  Both with the website, and with myself. 

So, I'm using the website printout as a loose guide.  Very loose.

There will be no syrup in this book. 

Just Jello.

Amberwood & Canister Thoughts

Since my eyes are starting to do googly tricks while painting, I figure its a good time to stop for the night.

Last year we made our first trip to IKEA down in Illinois. We met up with friends and happened to wander -ok, I saw the sign and gasped, causing Jeremy to hit the breaks and begin checking me over for medical issues.  Oops.  Anyhow, I saw a Tuesday Morning sign and we were soon browsing the aisles.

I found three short pillar candles, brown in color, with a divine scent of Amberwood. 

(like these)

I'm a lover of patchouli & amber aromas, earthy smells with depth.  I knew exactly what I wanted to do with them. And besides, they were a steal. We were just beginning to prep the house to move.  We had decided to keep the dark blue/light blue paint colors in our room, and accent with cream/chocolate/black.  Ok, I had decided.  Jeremy chipped in by saying something like Uh-Huh Ok Whatever.  His approval usually isn't a stretch, unless I suggest anything yellow or pink.  Those are an automatic veto.

I came home and placed the candles on the white shelf in our bedroom... still wrapped in their protective plastic wrapping. 

Today, I opened all three.  It was rather ceremonious to me, which can be considered to be a good thing or a bit odd as we are talking about candles here. 

Each day that goes on, that I am in hyper-overdrive move mode, makes this whole thing more and more real.  I mean, I unwrapped the candles. That have been sitting on the shelf for over a year and a half.  Things are getting done and while I'm completely exhausted, its beginning to look amazing.

My mind is full of so many memories.  Memories of when we first bought this house.  How we didn't know where to begin, and had no idea what we were doing.  No.idea. Jeremy has always been good at demolition, be it baseball bat or  box cutters (that would be knocking down things and tearing up carpet) and I've improved on the bringing-it-to-life role.  I remember standing in the kitchen with my Mom, chatting with excitment about the new kitchen curtains she was going to make for us.  Which lead to the wine colored walls that I was swearing at  battling tonight, but ya know.  Tastes change. 

We purchased our first set of new furniture for this house and spent all night painting the living room the night before an adoption homestudy.  The night before that I suckered a friend into painting our bedroom that dark blue/light blue combo. We failed sorely at "fixing-up" our bathroom for several years before we bit the bullet and hired a contractor to do the gut and remodel.  I spent hours painting AJ's nursery dresser while my Grandmother supervised and we chatted. We slowly but surely found the yard again. We've made friends with lots of plumbers and other handy-skilled workers.  We've replaced pumps, roofs, I could go on. 

We've learned a lot from this house.  We've learned about quality work and quality products.  That blood red is never a good choice of color for you living room walls.  That hard work-done right-pays off.  We've learned what its like to own a home and everything that comes with it.  We've worked with some amazing people and are a whole lot more experienced than when we started. Trust Me. We are not gardners and most certainly not tree-lovers!  That we won't ever buy cheapy-cheap faucets or cheap paint and most importantly, won't cut corners!

...I find painting relaxing.  I should say I find it relaxing most of the time.  I prefer to work without using painters tape.   Cheap paint is just that, cheap.  Buy a good brush and good paint and save yourself some insanity and money.  I spent a good hour tonight doing the brushwork above the countertop lip in the kitchen.  Without tape.  And loved every second.  It forces me to take it slow and steady, concentrate, and keep a steady hand.  It brings Zen.  I know.  I'm insane.

As I was painting, the design for our next kitchen popped into my head.  The object(s) of inspiration? 

Canisters.  There has been a set of canisters in our basement since we moved here.  They belonged to Jeremy's paternal grandmother and somehow they had ended up here, at his maternal grandparents home. 

For years he's been asking me to hang on to them.  Their base color is white, with a beautiful black paisley pattern with accents of bright blue and green. I never paid much attention, except the last few weeks I've been looking at them on the shelf each time I go downstairs.  Hm.  Weird.

And tonight, they made their debut.  Suddenly my head was filled with ideas of a  faux-granite countertop, black with a gloss finish to really fake people out on the granite thing, the large dining table in the basement black with a flat finish with chairs painted to match with grey velour chair pads.  Blue walls?   Green walls? What shade? And a pendant light at the sink.  A glass bowl....no a dish...with decor balls?  No... Definitely the brushed nickel finish and oh I saw those drawer pulls at Target, those would be perfect..............................................

My mind was running wild!  It kept running, into new ideas for a living room.  How I literally want the same bathroom in our new house. And then it hit me.  Other than AJ's future room, never before had I thought about what our new home would be like.  While the decor/furnishings really don't matter, it sure is fun to dream up ideas.  I had forgotten how much I love this sort of thing.  While I'm no Genevieve, I do like to dabble in this house stuff.

It sure beats constantly thinking of therapy appointments, goals, and stressing over everything.

And those candles?  Oh, those are going with too.  I'm sure I'll think of just the place for them in our new home.

Noodle Ornaments

AJ and I made noodle ornaments for his Grandparents this year for Christmas. I got the idea from an ornament I made in 3rd grade...that I still have. 

Supplies Needed:Macaroni Noodles/Any Small Variety of Dry Pasta

Shape to Trace

Ribbon

Hole Punch (not pictured)

Craft Glue

Spray Paint

Cardstock or Construction Paper

Scrap Piece of Cardboard

 Trace and cut your shapes & Punch your holes

 Apply glue and smudge it all over with your fingers...

 Call your craftyman...

 Place macaroni on glue.  Try not to cover the hole you punched.

 Carefully flip to and repeat on the other side. 

 Allow time for the glue to dry.

 Adults: Spraypaint one side at a time with your color of choice. 

Metallics work really well.

 Add ribbon and a year tag, and VOILA!

Here's to A New Year

Today certainly did not feel like the last day in December.  Our weather has been more like spring the last two days, with today's temperature hitting 50 degrees and melting all of our snow. 

I'm not sure how a new year is upon us.

Already.

2010.  We are not sad to see it go, to say the least. 

My sweet Gram left us on Ash Wednesday. AJ's 2nd CI surgery (May) seems like it was lightyears ago and was relatively uneventful considering the events that followed.  Jeremy's scary diagnosis of multiple sclerosis threw both of us completely out of our element...as if we had such a thing to begin with.  Let me assure you, when you are 28.75 years old, you do not think about such things happening to your life partner.  AJ's birthday was a blur, as was his 2nd CI activation.  Each attempt at a mini-vacation was soured.  The pressure to move became overwhelming. And lets not forget AJ's new diagnosis of epilepsy.

Each year, Jeremy and I hope that this will be our year.  Not for smooth sailing, or that easy-button on the Staples commercial (nice but not realistic).  For a few less bumps, for a break or two, for less drama, less stress, less tears.

Despite all this, our marriage grows stronger.  We laugh at each other constantly and worry about each other just as much.  We're growing into our own groove as a family, which has its ups and downs.  Friendships have grown stronger, some have grown weaker.  We have reached the depths of being so emotionally drained, that we can't function.  We hold each other up, grieve with each other, and support one another. We take care of each other.

I grew a bit more into my own this year, and continue to do so.  Jeremy's career blossomed and opened new doors and opportunities aplenty.

AJ has grown and tolerated all that goes on around him like the SuperStar he is.  He just amazes me.  He wakes up every morning with a clean fresh slate smile that can take on the world.    Despite my heartache about certain things, AJ has made tremendous progress. 

I find it so hard to believe that he'll soon turn 5.  5 years old.  When did that happen?  He's lost his baby face and now grins at me with total boy naughtiness glimmering in his eyes.  He's everywhere, and into everything, just like little boys should be. 

What will 2011 bring?

2011 will bring us a new home.  Around 4am on the morning after Christmas, it suddenly hit me that it was our last Christmas in this house.  With the realtor coming last night, it feels like everything is suddenly happening, very fast. 

We are hopeful Jeremy will remain symptom-free.  We are hopeful AJ's communication skills will increase and that he'll continue to make such terrific gains in his additional therapies.  We are hopeful our move will go as smoothly as possible and that we'll find the right house with ease.  We are hopeful for some positive changes in our lives!

I hope to finish my book sooner than later and stop holding back what I really want to say.  Contrary to popular belief, I do have a filter.  I rather large and thick one...depending on the context.  I am also hoping to take more time for myself and figure out what exactly I want to be other than/in addition to being AJ's Mom. I'm looking forward to turning our new house into our home.  Jeremy is looking forward to his dartball tournaments and finishing his BA (very soon!) and moving on to his Master's.

2011 also brings our 10th wedding anniversary and our first long vacation EVER to Hawaii.  We lay in bed most mornings and sigh at the thought of just sleeping all day...with palm trees swaying in the breeze.
I'm still not sure how we've been married 10 years already....

Happy New Year!

Wordless Wednesday

Blue Christmas

I've really been slacking on the posts, haven't I?  I would love to promise that will change, but I can't.  Rest assure our craziness has not deterred me from thinking of awesome blog posting titles and subjects....

The kitchen cabinet redo was finished the week before Christmas and looks absolutely amazing.  We are so used to having open cabinets, that it sure is different opening a door to look for something.  I spent most of last week engaged in a mental battle of what had to be done/finished before Christmas vs. what needed to be done to finish the house.  It was quite the battle.  Even so, I was still asking Jeremy to take bins down to the basement on Christmas Day. 

Jeremy and I managed to get the Christmas cards out before Christmas this year...which is quite an accomplishment.  I swear, I pick THE putsy-ist projects...but they always turn out amazing.  We spent many nights, while watching our DVR'ed shows, cutitng twine, fishing line, and putting them together.  Thanks, Honey.

Christmas was full of surprises, lots of love, and blessings....

AJ is on winter break this week...with a smidge of a cold still lingering.  At least he's not the booger monster like he was early last week. 

He's doing well at school, with lots of new gains.   He recognizes the "Good Morning" song they at the beginning of each day and knows what is expected of him re: taking his picture from his teacher, standing up, and placing it on the board.  Without.being.prompted.  Oh how I wish his toddler group teacher at CCHD could see him now.  Huge progress.

He no longer needs a sensory break during his morning routine and the time between bathroom trips has increased dramatically.  Were talking 2 hours here people.  Yesterday marked 1 year that we've been potty training.  I was told it would take a year.  Right on.  Can you imagine we've been at this a whole year? The school staff has a photo of the potty next to the door...which he now goes and grabs independently to tell them he needs to go potty.  Soooo exciting.  Now, if we could just poop on the potty consistently, that would be marvelous.  He's back up to snuff with using the PECS during his speech time, which is another huge gain.  He had regressed quite a bit after coming back from Intensives, so we are all thankful he is back up to where he was, choosing between 2-3 pictures. 

While I'll detail his PECS book more in another post, here is AJ's 1st PECS book:

Vision
It was brought to my attention that AJ's having trouble with using his vision using his PECS.  He seems to pay more attention to the book when it is coming towards him, not in front of him. 

Sigh. When you have a child with multiple needs, you pick your battles.  AJ wearing his glasses on the way to school is one I chose not to fight, until now.  When it was brought to my attention that the staff was seeking exercises to help AJ increase use of his vision, I suggested that I start by keeping his glasses on in the morning.  He was such a good little boy the first day we tried it last week, he didn't try to take them off at all.  I was so proud.  The following days, not so much. 

You see, its quite a process to get all of his head equipment on and getting it to stay put is another feat.  When he pulls his glasses, he ends up pulling his implants off, even with the wig tape, and I end up pulling over 7 times to reassemble him, which doesn't work out because then the tape doesn't stick as well and I'm using very inappropriate language on the way to school.  Not exactly the language experience I am supposed to be providing for my kiddo.    I am hoping that by waking up his eyes earlier in the day, he will use his vision more appropriately and we can avoid adding vision exercises to his already packed schedule.  His ophthalmologist has assured me multiple times that he has no other issues other than near-sightedness and a slight astigmatism. 

Cochlear Implants

We are scheduled for his 6-month audiogram for his left implant (the new one) tomorrow.  Since we don't have an audiogram for this ear yet, I'm anxious to see where he is. That's right, we have no idea where he is hearing on the left.  No dB markings on an audiogram chart.   Don't ask why we don't have an audiogram yet.  We will be getting one tomorrow, or I'll be bringing him in every week until we get one. 

We seem to go through a fair number of ear hooks for his implants.  So I was not surprised when the sitter reported she lost one and was panicking.  I pulled out our stash and placed another one, only to have it fall off.  A small piece of plastic below the "blinking light" is broken off, so a hook won't stay on.  I've switched to his backup and will take the other into the clinic tomorrow...along with a coil that I found stuck to the underside of the airconditioning vent in the floor in AJ's room.  Huh.  We lost that eons ago. 

PT

AJ is growing like a weed.  I mean, GROWING. To the point of pain.  This growth spurt, between ages 4 and 5, is the worst until he's in his teens.  GRRRRRRRRRRREAT.  He's eating us out of house and home, and he's only 4 1/2.  Yes, he's a boy, and boys typically eat you out of house and home, but he's setting a record.  I'm sure of it.  Despite his growing, we've managed to keep him walking.  Deep massages, his TENS unit, long baths, vibration, and lots of home PT is helping a lot.  So are naps.  He's been on the treadmill and his ball A LOT here at home.  You can just see his body relax when he's stretched out on the ball. 

We are thankful that we received a quick response from insurance and have been granted more PT sessions.  His PT did a 90 minute session two weeks ago and it did WONDERS.  Our normal sessions are 45-60 minutes.  In January, all of his PT sessions will be 90 minutes.  We are working towards better balance in standing and in walking.  If he's tight, it is extremely hard for him to bend down or bend a leg to put on his pants, etc.  He lacks the balance required for those types of activities.  Insurance thinks he's doing so well, they'll stop covering him soon.  Which is amazing.  We had to stop and think of what we wanted to put as our goals for AJ on this last submission to insurance.  The goal is for him to be discharged and only have to see his PT intermittently for periods of growth and spasticity.

Our new sitters are PT students, so it thrills me when I can ask them to do something with him and they know exactly what I am talking about.  BONUS.  Or they notice when he's tight and needs lengthening.  I am just in heaven with these ladies.

AJ loves working on the trapeze bar, yep my kid with CP can use a trapeze bar, and the gigundo therapy ball at his therapy clinic.  I've caught him down in the basement a few times, which is...awesome.

And he's tall enough to do this...

OT 
He's doing well in OT too. We are still working on dressing, which is slow-going.  He's attempting to put on his own socks.  AJ is trying so hard to open doors and is able to pull his zipper pull up and down on his own. is also able to hold his bowls/plates with his left hand now.  See?

Feeding Therapy

Feeding therapy is going well too.  We've been using a VitaStim unit under his chin (pictured below), which works wonders.  It speeds up his swallowing and gives him a lot of oral awareness. The VitaStim is a lot like his TENS unit, using electrical stimulation, but on a smaller area. He's acutely aware of when she turns it up too.  It's quite interesting to watch him.  We are working on getting him to eat hot dogs with a bun (with the dog not cut, so he has to bite it with the bun) and revisiting toasted sandwiches.  He lost interest in sandwiches for a while there.  He's drinking from an open cup so well, its amazing.  He's even able to hold it up even while he's not taking a drip.  He'll take a sip, then continue holding his cup up, then take another sip, then put it down.

Today, he had a fantastic session.  I mean, it just might have been the best EVER.  He self-fed himself a toasted PB&J sandwich, pears, and raisins...without putting his fingers in his mouth to push food to the side...he used his tongue and we could hear beautiful active chewing.  His feeding therapist was thrilled, as was I. 

Auditory Therapy

We had our best auditory session EVER last week. I'm am very anxious to see how he does in the booth tomorrow.  He turned to novel sounds at 6-9 feet distance and really engaged with his therapist.  While going through one of the eval's, we discovered he was making some great progress. Considering I leave most of those sessions frustrated and in tears by the time I start the car to leave, this was major progress. 

Dental

AJ's teeth, miraculously, are cavity-free.  Unfortunately, he still hates the dentist. He still has extremely weak teeth, which we need to keep an eye on.  I was quite pleased with his new dental resident, which was a relief.  His thumb sucking is pushing his teeth in and out, so we're doing our best to keep his thumb out of his mouth.  When I asked why is causes a problem, I also found that not having your top and bottom aligned also makes it more difficult for a person to bite and chew.  Well, AJ doesn't need anymore challenges in the eating department, so we're keeping a close eye on him.  As he gets older, it keeps decreasing, so we're thankful for that. 

Seizures

AJ is so much more alert and aware, its shocking.  The seizure medicine is doing its job. I've also seen less and less staring at his hands and self-stimulation. And although I still have to turn my eyes from the right side of the road when I pass where he had his seizure in the car, I am thankful he had it and that we now know about his epilepsy.  School reported one short, stare-off-into-space seizure a few weeks ago.  Jeremy and I think we have seen a few, but it is so hard to tell.  Is he ignoring us or is it a seizure?

I've placed a call to his neurologist's office to schedule another EEG.  Ugh.  I am not looking forward to that.  I wonder if its inappropriate to bring a bottle of wine with me.... The EEG itself is painless, its just a bunch of wires stuck on AJ's head.  Its the sleep deprivation, for both of us and his sensory overloaded screaming during the ENTIRE test that does me in.  Oh Well. We'd rather know what his brain activity looks like now anyways. 

Communication & Cognition

I have repeated the phrase "AJ is non-verbal" over 10 times, to both friends and strangers, and I think its helping it sink in.  Even so, I'm devasted.  We have given so much faith into hope, hopes that the implants would bring him up to speed in the two areas he was lacking...and here we are grieving again.  I find myself asking if the grieving will ever stop.  Does that sound dramatic?  Perhaps to you, but it is a real question Jeremy and I ask each other a lot. 

AJ's inability to communicate what he wants often leads to AJ screaming and crying at the top of his lungs (and his cry is dramatic, pathetic, and oh so pitiful) and me going through the rolodex of his typical wants/needs in my head.  When I don't stop on the right tab, it leaves both of us, all too often, on the kitchen floor sobbing together.  He's frustrated.  I'm frustrated and frustrated for him.  I feel like a failure.  My patience is tested day in and day out.  Lately, I've been short on it.

There are moments where he leads us to what he wants and I'm able to translate for him (ex: leads me to microwave or stove: Mom, I want something warm to eat).  He's communicating better at school for potty time and food times.  But what about the rest of a human life? Leading me to the refrigerator is not going to get him very far. 

We're working with the PECS, and teaching him power signs, because we all believe he's capable of signing what he wants/needs.  We are working closely with his school staff, who are as always, simply amazing.  We're doing what we can to help him.  But sometimes, it is just too much.  

His cognitive delays were never more apparent than at Christmas.  Where I was delighted to see him sit on Santa's lap at school, but heartbroken when Santa asked him what he wanted for Christmas and....silence. 

Jeremy and I believe Christmas is Christ's birthday, as He is the reason for the season (I really don't like that saying as it sounds so cheesy, but there it is).  With that said, we do the Santa thing too. Most of us remember Christmas from when we were young and love to watch our own children discover the magic and wonder of Santa and all his wintery friends.  You go to church, you do the Christmas program, you explain the nativity, you pray, I even had plans to make a Happy Birthday Jesus cake. There was no magic, and a Mom with a very broken heart.  A pity party?  Perhaps.  But one that I'm still feeling a few days past Christmas.  Yes AJ is 4 1/2, and of course I wouldn't expect him to walk out Christmas morning, gasp and run into the living room "Mommy Mommy Santa came!".  But the teeny tiny moments I guess I was expecting, like even the moments we experienced last year when he was younger, were null.  Our company was great, the food was fantastic, but inside, my heart was crying.

After AJ finished the Intensives in October, AJ's PT and I were discussing how AJ is a great example of how treatment works.  She went on about how we were great parents and have worked so hard with him, that this is why is doing so well.  She then went on to say that most special needs parents hit a wall, a point where they are just so overwhelmed, they just can't anymore.  She still hadn't figured out how I was still doing it.  I'm not sure either.  But I think I've finally reached that state.  So much to juggle all at the same time.  *Deep Exhale*  I just wrote this huge post over the course of two days and I'm exhausted just writing it.

Listen To Your Chocolate

Lately our lives, and house, seem to be taken over by those plastic bins.  There are rows and rows in our basement of said bins. You know, the ones on sale every week in the store ads, with the popular color choice right now being red and green...

We are 3 days into our kitchen cabinet redo.  Meaning, a very experienced cabinet dude is here.  After a year and a half of staring at our cabinets without doors on them (with all so wonderful intentions to paint everything ourselves), I caved and listened to my chocolate. He has stripped, bleached, stained, and sealed our existing base cabinets.  The new crown molding is up, and makes me sigh every time I walk into the kitchen.  The old scrolly-looking piece over the sink, while appropriate for a 50's kitchen, is now gone, which makes the kitchen look a bit more modern.  The new drawers and doors  are downstairs waiting in all their glory to be installed tomorrow and Friday. 

In the midst of the cabinet redo we've had a handy dude here putting in new storm/screen combos on some of our windows, changing outlets, and doing other various things.  Today there were four different people, besides me, mulling around our house.  I was just the cruise director.

Roughly 95% of the contents of my kitchen contents are in...you guessed it...bins.  Totes.  Call them what you want.  And yes, these are of the red and green variety.  We've done a lot of eating from paper plates, takeout, and meals that don't require cooking on the stove top.  Everything is everywhere, in every room, except the bathroom, which seems to be the only room I can keep just the way I like it.  Hm.

This week has been rough.  Ok, thats an understatement.  I'm finding it hard to fit in SuperMom's schedule into my life.  I know, SHOCKING.  I'm finding it hard to focus on just one thing.  This has been the first week where someone, other than myself, Jer, and Grandma, has picked AJ up from  and taken him to school.  My mind is so focused on getting this house ready to list that there isn't room for much else.  I felt horrible as these big brown eyes looked at me standing in the doorway this morning..."Mom, why aren't you coming with me?"  Sometimes being AJ's "translator" is heartbreaking.  I know my baby boy too well sometimes. 

So this afternoon, when AJ came home with a rash and the sitter mentioned he was picking at his ears, I hopped in the car and drove him to urgent care.  We don't mess around with the ears.  Sure enough, he has an early infection in his left ear.  Thank you gut.  You come in handy oh-so-often.  He was also tested for strep, which came back negative. 

I definitely could have continued on with my day without AJ's medical drama, but it wouldn't change the fact that the show must go on.   It has been ridiculously hard for me to watch other people mulling around here doing work.  Things that I may not be able to do, but for some reason my brain tricks me into thinking, or rather goes into SuperMom mode, and I think I should be doing.  Things are stressful enough around here, you can imagine my reaction more chaos.

After I put AJ to bed tonight, I took a long hot bath.  I thought about how difficult the week has been, how everything is misplaced.  Messy.  How life is messy.  How I've finally  identified my strengths and weaknesses, learned what I truly can and don't have to do all on my own.  How I absolutely love my small Christmas Tree that sits on the corner of my bathroom vanity.  How I absolutely love Gram's tree sitting in my living room, in all its grandness. How amazed I am that so many things are getting done around here all at once.  How thankful I am for skilled workers who know what they are doing and while I'm stressed while they are here, the final product relieves a different type of stress.  This process won't last forever, but we're at a point where we must keep going.  I'm trying not to do it all-all at once.

AJ gave me the sweetest smile when I put him to bed tonight.  He asks to go to bed by leading me to his bed, standing at the foot, looking up at me with those big brown eyes, and slowly reaching for his implants, gently pulling them off.  As he snuggled his pillow, he gave me that smile.  The smile that reminds me of why we are living and packing our lives in bins.  Why we are having windows and cabinets done.  Why we are moving in the first place.  For a sweet little boy who deserves everything we can give him.  There is light at the end of the tunnel. 

And I, for once, am listening to my chocolate. 

Why Turkey Why

I suppose I should post about Thankgiving while I still have a picture with pumpkins on the blog. Never mind that today is December 4th.

Thanksgiving was a very stressful day.  For those around us, it may not have seemed so, but we've gotten pretty good at playing the game and putting on the smiles.

I thought it would be less stressful not hosting.  I was wrong.  I had forgotten what it feels like to hop-skip-jump to different places on a holiday.  Especially with a kiddo.  While we were at our first stop, AJ did well, although I was watching him like a hawk.  He was staring off a lot, which caught my attention right away and I quickly became nervous.  While I don't think he had a full seizure, I do think there was some abnormal activity going on.  Since he has had a seizure while on medication (about 2 weeks ago-at school) I was on high alert.  I guess you get that way when your kid has seizures.  Despite my anxiousness, it was lovely visiting with family and friends...and petting puppies.

We left late (if anyone ever leaves one place to get to another on time, please share your secret) and picked up my Mom for our next stop.  Where I swooped AJ into the bathroom pronto so I could give him his seizure medication (late-which made me upset).  He took it well, and I though all would be well with the world.  Not so.  AJ ate two bites of mashed potatoes and proceeded to have a complete sensory meltdown. 

In the middle of his meltdown, a sweet little girl came over and asked me a question.  She's definitely in her "Why?" stage.  Her mother had warned me beforehand that she wanted to play with AJ, but she explained he needed to eat first.  The girl had asked her mother why AJ didn't talk.  She had reminded her that he talks with his hands instead.  Kudos to that Mom, by the way.

The sweet little blond girl walked up to me and asked, "Why doesn't he talk?" 

I answered (feeling like I was lying or not telling the whole truth because AJ only has 5 signs he uses), "He uses his hands to talk."

"But WHY?" said the little girl. 

To which I said nothing and fought some major tears that were welling up while AJ was screaming in my lap. 

Her mother distracted her and I was off the hook.

What do you tell a sweet young child, who is full of innocence, when they ask such a complex question?  It was simple in her eyes.  I want it to be simple too sister.   My heart was screaming to act how her face looked, like she wanted to whine, "Well thats not fair!!"  No, its not. I felt like saying, "Yeah, I wanna know too why he doesn't talk.  Lets sit down on the floor and play Candyland and solve the world's problems." 

AJ was done, and we left just as quick as we came...or so it felt.  Despite the meltdown, it was nice to see friends we hadn't seen in what felt like forever and laugh, even if it was just a little.
After I dropped my Mom off, the tears started.  I missed Gram so much that day.  The emotion hit me like a ton of bricks and I was not expecting it. The day was hard to begin with; but adding a new routine for "The Day", AJ's meltdown, the why question, and the guilt of not spending more time with Mom, I was one cooked bird myself.  I did not expect the day to go perfect. Because they never do, and that's ok.  But my heart was hoping for some calm and peace and an opportunity to give thanks.  To not have to worry or stress about anything for just a little while. Instead, I was stressed.  Jer was stressed.  I missed cooking and hosting. Jer missed my cooking, our hosting, and the leftovers.

I am thankful for my loving husband, my amazing son, our parents, my closest friends, AJ's team, AJ's ability to hear and listen, massages, and Starbucks.  I am thankful for so much.  But the stress?  Eh.  Sorry stress, I'm not thankful for you....Oh, and pumpkin pie.  Love me some pumpkin pie. And Twilight.  Can't forget Twilight.