Wordless Wednesday

Zen

I woke up this morning totally refreshed.  I mean, shockingly rested.  Which is amazing since I don't think I'd had that great of a night of sleep in YEARS.  I'm serious.  I think I even woke up with a smile on my face.

For whatever reason, I've been graced with a bit of Zen recently.  Which, while being seriously overdue, I am welcoming into my life. 

We returned early from a visit to Jer's Mom & Step-Dad in Iowa on Sunday night.  While our quick departure was not planned, the drive was absolutely gorgeous during sunset and my husband and I chatted for four hours-straight.  About anything and everything. While we spent most of yesterday morning in Urgent Care with AJ, the day ended up being a family day.  Totally by accident.  An accident I am still smiling about.

While sitting in Urgent Care, my little man was snuggled on my shoulder.  Melt.my.heart.  He's at that age where he doesn't necessarily want to snuggle all the time. Even though I was frustrated we waited for over an hour to be seen, I found myself enjoying the snuggle.  I quickly calmed my frustration with remembering that we truly are blessed to be able to just walk in somewhere, wait an hour, and walk out with a diagnosis AND the prescription called into the pharmacy already so we don't have to *gasp* wait for it to be filled. 

We decided to run an errand, ok I decided we should run an errand while on that side of town, so we headed to Sam's club where I did a Jeremy.  What's a Jeremy?  I walked in with intentions of buying Crystal Light packets & crackers...walking out with a cart FULL.  To celebrate my achievement, Jer pulled into Starbucks, where I shouted my order for my new favorite drink (Iced Mocha-thanks Mel for introducing me) into the speaker, because Jer says if he were to order he would never get it right.  

The weather was absolutely gorgeous here yesterday-it almost felt like fall with the lack of humidity and temps in the 70s.  We drove with our windows open-imagine that! We picked up lunch and headed towards home, when I remembered the post office was on the way and I needed to mail the box thats been rattling around in my trunk for ahem, a while.  Jer chatted on the phone with a friend, while I ran in the post office, mailed my box, and picked up a sheet of Katherine Hepburn stamps.  Because Gram would have loved those, so I had to get them to use for mailing out all my important mail, like my bills.  Fun.

We continued on to the pharmacy, where I ran in and crossed off several items off my "to pick up list" in addition to AJ's prescription. Rock on.

We finally arrived home, where I had a great conversation with a friend that made me feel "normal".  That is always a plus in my book . We played with AJ, watched weird TV shows, and just enjoyed a laid back day.  AJ went to bed at a normal time, followed by Jeremy and I eating dinner by ourselves (on purpose), and then proceeding to sit in silence, as I read a book and he worked on the last project for his current class.  No TV, no noise, just a few conversations between us here and there.  Bliss.

We wrapped up the night crawling into our comfy bed, which for some reason was extremely comfy last night, complete with fresh sheets.  Oh how I love fresh sheets.

It was a wonderful day. 

Zen, you can stick around for a while. Ok?

'Fessing Up

I am writing a book.

I sat and stared at the sentence above for a minimum of 5 minutes before I began writing this sentence. 

{Deep breath in, deep breath out}

When I was a junior in high school, I took a world literature class.  The class was taught by one of the oldest teachers at the school and believe me, he wasn't very Grandpa-ish.  No "hugs or mushiness" in this classroom.  No Sir.  Pomp and Circumstance meets stern and crude.

I had Mr. R for a semester of sophomore english, which is where our tumultuous relationship began.  He was, by far, the most diffcult teacher I've ever had.   I remember reading a poem aloud at "the pulpit", that a past boyfriend had written and given to me (I recently stumbled upon it in a scrapbook my mom has of my childhood).  Let me assure you, your teacher laughing is not professional, nor is it encouraging to a fragile sophomore who is just trying to do her work as instructed.

The poem I read aloud was not a great masterpiece.  But it wasn't crap either.  It was creative, and from the heart of a boyfriend that I still think, till this day, was underestimated. It was special to me, special enough that I wanted to share it.  Share it in anonymity to protect the writer, because I KNEW my classmates would laugh when they heard who had written it.  I certainly didn't expect my teacher to follow suit.  He also forced me to share who had written the poem, which was the beginning of my sour taste toward this teacher.

Let's get back to the world literature class during junior year. Mr. R told me not to take the class.  Rarely was it passed by anyone other than the future salute and validictorians.  I didn't care.  The class interested me.  While I wasn't fond of Mr. R or his crude humor, I did enjoy picking his brain and the rants he went on about literature. The man was indeed brilliant.  I took the class, despite his warnings.

I remember the first day of world lit.  Ufta. I remember leaving that class along with several other girls, and we all walked out of his doorway desperately asking ourselves what we were thinking.  Surprisingly, all but one of us purged on.  

Parent teacher conferences rolled around, and world lit and I were not getting along.  I should say that sour taste was increasing and my tastebuds were not obliging.  My mom and I walked into Mr. R's room.  He told my mom I should drop the class. That I was not smart enough to learn about world literature and that if I ever envisioned a career in writing, I should kiss it goodbye. 

My mom and I walked out of that room, with me shaking with fury and wondering what my mom would say.

"Drop the class."

That is what my mom said to me. Seriously.  I knew I had a rock star mom, but this play I was unsure of. 

I did indeed end of dropping the class.  I'm sure Mr. R felt a victory in his favor and laughed when he was my name removed from his class roster that next week. 

My senior year, I took two semesters of ADVANCED PLACEMENT ENGLISH.  I passed both semesters, in case you were wondering.  Not by a hair, or an inch either.  Mr. R had consulted with the AP English teacher, surprise, surprise, that I should not take the class.  The AP teacher talked to me about it and we forged on.  He believed in me, and I believed in myself. 

That class was one of my fondest memories of high school.  A young male teacher with a handful of intelligent young ladies.  He had his hands full with us, but he pushed us.  Pushed us that we were ready for the new teacher that graced us with her presence during second semester.  We read brilliant works such as Death of a Salesman, The Scarlet Letter, Antigone, and beautiful, beautiful poetry.  We wrote, and wrote, and wrote. We were challenged, again and again.We discussed things that I never thought I'd be able to understand.  I grew as a person, and {eek, am I really saying this} a writer that year. 

Mr. R visited our class one day, and was quite obviously surprised I was still in the class.  At one point, he gave me a "well done Miss Malquist" and walked out of the classroom. 

I sure as hell did smirk through the rest of my day...and rode that high of proving Mr. R wrong for about a week.

My mom never doubted my skills as a writer, or as a learner of English.  She later told me he was an idiot and I didn't need that in my life.  She knew I would succeed, world lit, or not. 

On a side note: Thanks Mom. 

My grandmother always told me I should write for a newpaper as a journalist.  Either that, or be a lawyer, because I sure could argue.  When we brought AJ home, she told me to write about our journey. After brushing her off 100 or so times, she changed her strategy, telling me to write children's books for kids like AJ.  I brushed her off, naturally.

When I started our second blog (the one you are reading right now), I began hearing people say "You should write a book."

I've probably heard "You should write a book" about 500 times, the last suggestion coming from one of AJ's therapists.  People even tell me to write a book...to my face.  What do I say to that?  Yikes.  And, yeah, I brush them off, because I don't know what to say.

So here I am, 'fessing up. 

 I am writing a book. 

Meaning, it is already in progress. 

And has been for about a year. 

Surprise!?

I've found this writing process, or whatever you want to call it...you know, lets stop for a moment.  Can I tell you how uncomfortable this makes me, using writers terms?  I mean, I'm not a writer.  I'm a woman, a mom, with a whole lot to say. My grammar, punctuation, and whatever are no where near perfect.  After all, this is a blog.  But I guess that would be an editor's job, right?  Or whatever.  Ok, lets forge ahead....  I've found this process increasingly difficult.  I began writing at the library one day when AJ was at school.  I kept it hush-hush, even from my hubby for a while, because I was afraid of pressure collapsing my already present hesitation about writing a book. 

I can tell you, so far, that my process is sloppy. It's mish-moshy.  I'm hit or miss.  I often have a lot of writer's block.  A LOT.  I have to be in the right place to write.  Physically and Mentally. Meaning, a quiet space and a clear head. Which, if you read this blog, ahem, clearly, I don't have a clear head a lot of the time.  I  have spent many hours talking out loud to myself in the car, thinking of how I want to structure a certain part of our journey before I type write it out.

It is, and continues to be a slow process.  For a while I was afraid of that fact.  Thinking it was a good enough reason to quit and not write the darn book.  I mean, really.  Who wants to read our story?  Who wants to read our crazy journey.  Apparently, somebody does. Otherwise I wouldn't hear "You should write a book" 500 times, right?

The slow process works for me, now that I have come to accept it.  Especially since what I am writing about is so deeply personal.  Each word I write carries a lot of weight with it.  As I write, the weight is freed from me and burned into the words of our story.  I know, it sounds so over the top.  But I'm being completely honest.  The emotion and tears that come with the words are healing me, little by little. I have shed many tears while writing.  Many, many tears.  Writing is healing me, which is quite amazing if you've ever experienced it.  Each chapter, each event, each sadness, each happy moment is relived, captured, and freed.  I never realized how much grief I had/still have about the very beginning of our journey to parenthood until I started Chapter 1.  I felt all the same emotions while writing about AJ being taken from my arms during our first visit, and a few thousand words later, AJ being placed in my arms forever.  This is amazing stuff, my friends.

It wasn't until I started writing that I realized how unique and moving our journey has been, and continues to be.  I want to share it all. The rollercoaster. The ups, downs, highs, lows.  Our story is not perfect.  Not perfect is ok too, and I'm going to tell you why.  If there is another special needs mom who I can make smile and laugh for a just a moment of her crazy day, I'll be thrilled. We have a story.  A story I am 'fessing up to writing.  My only hope is that I can do it justice.  Lord help me....

I Think About You

Disclaimer: This post is either going to make me seem extremely lame or thoughtful.  Your pick.

I just sent an email off to another blog mamacita and had a brainstorm mid-keystroke.  Certain things remind me of certain people.  I'm sure you've noticed in this your own life.  If you are already thinking this post is lame, then please, just please, pretend you've noticed this in your own life. 

Yesterday I posted about my Gram-how I think of her when I see or do X, Y, or Z.

Well, I think about my fellow blog mamacitas a lot too.  Even though we know each other (with the exception of Melanie) exclusively through cyberspace...I still know a lot about them.

When I see Ohio Buckeye sports apparel or ring stackers, I think of Jenny.


When I hear DMB (Dave Matthews Band) and watch DC Cupcakes, I think of Tina.


When I see a National Geographic mag or anything to do with Texas, I think of Tammy.


When I visit my in-laws in Iowa or see a bandana on a kiddo, I think of Shanon.


When I'm at the car wash, or see something the color purple, I think of Ellen.


When I hear spanish lyrics or play at AJ's water table, I think of Jennifer.


When I watch SYTYCD or make experience books for AJ, I think of Celeste.


When I see really, really, yummy chocolate or see mini-vans parked in handicapped parking spaces, I think of Jess.


When I see a Starbucks or any type of stuffed bunny, I think of Melanie.

We all read whats going on it one another's lives.  We read, comment, cry, laugh, and cheer each other on.  With all the negativity you can find in this great landscape called the Internet...I've sure found some positives.

Time

Time is a funny thing isn't it?

It defines our existence in a way.  How many times do you look at the clock in a day?  We need to be up at this time, out of the door at this time, pick so-and-so up at this time, followed by dinnertime and well-deserved bedtimes in this crazy day and age.

We miss being kids when all we worried about our toys, ice cream after dinner, and recess. We want days to go faster, but then ask ourselves where the summer went. Our kids grown up too fast...so fast we want to turn back time. We buy skin creams, use injections, and have elective surgeries just to prolong the inevitable. 

We age people. It is part of life. 

I'm turning 29 in just over a week.  29.  When did that happen?  Through a certain social network, I've reconnected with many people that I went to high school with.  And all too often I find it difficult to believe that the majority of us are further educated, married, with kiddos of our own.  I never understood the whole "time goes faster as you get older" until recently.  And I know, some of you will read this and say {you're only 29!} , but it is hard for me to believe that time has gone by so fast.  I'm looking forward to my 30s.  And although I still have a year left in my 20s, I've heard such good things about your 30s, that I'm ready.  I'm ready for the next stage of life (so hokey, but true).  Besides, no one ever believes I'm in my 20s anyhow.  I usually get 33.  Something about how I carry myself.  Whatever.

I'm scared to move.  I know, I know.  Every now and then you read about us getting ready to move so that AJ may continue to attend the awesome program at the awesome school he currently attends...which is an hour away.  It's time.  And I'm still scared.  Our family needs have changed, and I'm still scared.  Scared of the unknown.  A positive change is in order.  One step at a time.  Little one-liners of positivity I repeat to myself on a daily basis. Time allows for "one step at a time" thinking, right? 

I have a hard time with AJ being 4.  Let me rephrase.  I don't have a hard time with him being 4.  4 is a great age.  I can't understand how he's 4 already, if that makes more sense.  It makes me realize just how incredible his journey has been and how much time and effort has passed since he came into our hearts and home.  I usually buy his birthday candles well in advance because if I waited till the last minute I'd never find the right number (trust me).  While at the store the other day I stumbled on the birthday aisle and thought, ok, next year he'll beeeeeeeeeeee...5.  5?  5.  When did that happen?  Its not a matter of him growing up to fast, its a matter of wondering how time keeps flying by. 

With time comes memories.  Lots of memories and lots of blessings in my life.  While sometimes I focus on the negative {I know, shocking}, believe it or not I remember those too....

Last week I saw three women shopping together.  A grandmother, mother, and daughter.  It took all I had to fight the tears as I was swipping my card to pay for my purchases.  When the grandmother commented on the blouse I purchased, I gently smiled and said "thank you" as I could feel my heart hurting.  That grandmother, mother, and daughter used to be my Mom, Gram, and I.  To a "T".  By the time the cashier was handing me my bags, I was smiling and chatting away with the fab 3.

I miss my Gram. I find myself listening to the satellite stations 40s on 4 and 50s on 5 in the car, thinking of her as I'm singing along or listening to the classics she taught me to appreciate.  I actually turn those stations on when I need calming.  Of course, there have been moments when songs like Moonlight Serenade or Moon River come on and I'm bawling on the freeway.  She was such an important part of my life.  I miss her like you should miss a grandmother...and then some.  She was a true blessing in my life and I'm thankful I have a rolodex of memories of her.

I want to ask her about things...and she's not here.  I want to hug her and not let go. I looked at my toothpicks today and thought I don't have to make my famous "waterchestnuts wrapped in bacon" appetizer for the holidays this year.  Gram won't be here to hoard them all.  While that made me incredibly sad, I will still make them {and they'll get eaten, trust me}, because its pretty cool that something as simple as toothpicks can remind me of my awesome Gram.  And, because I am certain she will be consuming a fair amount of heavenly white zinfandel and having her own party.  That's just Gram.

I think of her when I cook with her wooden spoons. When I pass the Breadsmith.

I think of her when I'm with my Mom.  Without Gram, I wouldn't have my awesome Mom.

I don't want to take her Christmas Tree down. Yep, its still up.  It is now mine, but I wish it was still hers.  It sits in the corner of her living room.  I don't know why, but this tree is the.most.beautiful.Christmas.Tree.I've ever.seen.   It just belongs in that corner.  I will get around to it soon I'm sure.  And this year our Christmas will begin with her beautiful tree and lots of memories to remember and to be made.  

I'm looking at time in a positive light these days.  Focusing on good memories of those who have been important in my life, and truly focusing on those that are important in my life.  I'm not only missing Gram, but Jeremy's Dad and my Dad.  Such awesome gentlemen.  And I say gentlemen because they truly were...to me.  I'm missing the sore guts they both gave me from making me laugh so damn hard...all.the.time.  Lightening the mood when it was truly needed.  I'm thankful for the short time I was given with them.  Their time had a profound impact on my life.  Taught me to lighten up.  Taught me about pickle grabbers and pinching butts.  Ya know, the important stuff in life. 

Time doesn't have to be a bad thing.  It is not the enemy. 

It is a gift. 

Through Their Eyes

Yesterday, Jeremy and I had an impromptu visit with Jeremy's "other set of parents". 

Jeremy has been friends with Uncle D, otherwise known as Dustin, for oh, 25 years.  Dustin's parents are basically another set of parents to Jeremy.  I'm pretty sure they should have claimed him as a dependent on their taxes and charged Jer's Mom for part of their monthly grocery bills.  Right JimBob & Linda?!  They tell awesome stories about my husband and Uncle D as young lads, fishing with sprees and singing MC Hammer all the way to Florida.  I just sit back, listen, and giggle at the thought of these two, now grown men, as kids.

What got me was their comments about AJ. 

"He's doing great, really great."

They played with him, honored his signs when he was communicating with them, and just treated him "normal".  They did not sit and watch him like a zoo exhibit.  They aren't scared of him.  They love him like another set of grandparents should. 

I always have sentimental moments when JimBob holds AJ...I think some of it is from missing Jer's Dad and envisioning would have been like as a grandpa, and missing my Dad and how he was with AJ during the short time he was alive after we brought AJ home. JimBob has always just has this way about him that is so endearing.  It makes my heart melt, and I always.always.always choke back the tears when he's with AJ.  Yesterday it was picking off the leaves from the tree that got me....

To hear, from someone who has known AJ from his beginning with us, say he's doing great, really great caught me off guard.  I think I skipped a breath actually. I sat on the patio and let that sink in for a moment.  All too often we are too close, too involved, too often everyday life paints gloomy pictures on the possibilities for AJ.  But I looked at my son in a different way after that comment was made.  As he played in the rocks and asked Pa for more bubbles.  As he was a happy kiddo just....playing.

He really is doing ok, isn't he?  I've really been trying to focus on the simple, find the simple, and unclutter my mind...make life as simple as possible.  Because complicated is just that...complicated.  So I'm trying to remember that he is doing well, that steady wins the race, not the sprinter. 

Thanks for the eye-opener Pa & Bubba.

Potty Like a Rockstar

You'll have to imagine the bottom of this photo

 (which I cropped).

Think Tom Cruise in Footloose...on a frog potty.

I had promised to post on how we were potty training AJ, and then a friend asked for advice,

 so I figured I'd better post or else...

We've been potty training AJ since last December, just after Christmas.  I knew he'd be on break from school until after New Years, so it seemed like the perfect time to hunker down and go for it. 

When we began this journey, we didn't know if we would be successful.  With AJ's CP, we didn't know how much bladder control he had to begin with, if any, and/or if control could be mastered.  Would his muscles work correcntly to control potty urges?  We discussed this with AJ's PT at great length, knowing full well it could take up to a year to potty train AJ. 

It is now August, and we are still at it, but we're just about there. 

He's 4 people. 

Cognitively about 2. 

He can handle it. 

Would it be easier to just keep him in a pull-up? Rarely do I think so.  Honestly.

We put him in big boy undies from the very beginning.  I felt it was crucial that AJ would be able to "feel" when he was wet.  I was right, as he knows he can "go" in a pull-up.  I would much rather rinse and wash undies than change diapers or pull-ups, but thats just me.

We have never used stickers, a sticker chart, M&Ms, or anything enticing.  I'm not a big believer in that. 

We watched for AJ's signs of needing to go potty (crossing legs, grabbing) and learned his schedule.  I'm a firm believe of sticking with it. We praise him when he's gone potty.  Quite honestly, washing his hands is enough of a reward for him.

We started with a small potty on the floor (above "frog potty") and then moved on to one of the seats you can place on the toilet.  For as much as we are on the go with therapies, I knew I could not tote around a little person potty with me.   

A few weeks ago, I heard a "thud" and had wondered what it was.  AJ had gone into the bathroom, grabbed his seat and put it on the potty, stepped up on the stepstool, pulled down his shorts, and I got in there just in time to help him up on his seat.  I purposely walked into the hallway and waited.  Sure enough, he had gotten off his seat, down the stepstool and came walking out of the bathroom. 

He gets it.  He knows. 

But he's also a boy.

Who gets busy playing.

We still have accidents.

But we also have more and more days of no accidents.

He's still in pull-ups at night, but we'll get to that.

The communication is what we are working on mostly.  I know when he has to go.  But we're looking for that response when you say "AJ, do you have to go potty?" and teaching him the sign for potty.  We're also still working on getting him to shake his head yes.  He'll shake his head "no" about 50% of when we ask him to say no, so we're almost there.  Sometimes he'll give you a cheesy grin after you've asked if he's got to go, and that means "yes, I'm cute and need to go potty."  This morning I got an arm lift when I asked if he had to go, so we're close.  My goal is to get him to answer consistently...so that when he goes back to school, he can communicate his potty needs.

Potty Like a Rockstar, AJ!

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Playing the Game

"Playing the Game" is one of those phrases that slips out of your mouth at the end of a conversation.  It is similar to saying "We Keep on Trucking Along" or "We Just Go with the Flow".  

I had a conversation with one of AJ's therapists yesterday, which ended with me saying "We just play the game", and his therapist saying, "Exactly".

For the past few weeks, our lives have been centered around one question, "What's wrong with AJ"?  Let's not beat around the bush, people.  He's not talking.  He's not imitating.  He's not doing A,B,C,D, heck we could go into double letters AA, or even triple letters AAA.  So something else HAS TO BE WRONG. 

Back in December, I had posted about AJ's appointment with his development specialist.  The one where I was told something HAS to be going on, like a chromosomal abnormality, a genetic disorder or syndrome.  Where he told me AJ might of had a stroke at birth. 

After a long waiting period with insurance, by miracle the genetic testing was approved.  And I sat on it.  Seriously, who wants to take their kid in to 1) have blood drawn, because that activity is always full of fun 2) have tests drawn to see what "else" is wrong. It was a typical case if I wanna know, but I don't wanna know.

We should have the results soon.  In the meantime, I contacted AJ's neurologist and asked him to take a lot at his MRI done in 2007 explain EXACTLY which part of AJ's brain was damaged (his cerebral palsy) and whether or not there was an evidence of a stroke.  I made sure to pull out my old calendar and make mention of when the MRI was done and when we originally saw the neurologist. 

Ufta.  Looking at that calendar was hard.  Really, Heidi?  Its.a.calendar.  Yeah, it is JUST a calendar.  But its full of the chaos that was just beginning.  There were things scribbled everywhere, as it was a small calendar, and under the original neuro appt I had written Dad with a halo underneath (my Dad passed a half hour after we left the "Your son has CP" appointment).  A flood of emotion ran through me, included how much I hated the neurologist that day. 

Now? I love him.  Ok, maybe love isn't quite the right term to use for someone on your son's medical team, but I digress.  He's an amazing doctor, very laid back, and has a way of calming me.  He returned my recent call re: location of damage in the brain/stroke  himself.  He explained everything in layman's terms (at my request), which boiled down to this:  AJ's brain damage is in the areas that control the voluntary movements of the limbs and the trunk due to lack of oxygen and/or blood...during/or at birth...no evidence of stroke.

Ok then.  While I felt like I should have shouted from the rooftops and been uber relieved, I was kind if stunned.  I was expecting him to say stroke.  Because, come on, there HAS to be something else going on, right?

I really, in my heart of hearts, don't think so.  It seems that AJ's...ahem...(whats the correct word for this)...unique history, his late diagnoses of BOTH cerebral palsy and deafness cannot possibly be all thats challenging him from moving forward.  Nope, gotta be something else.  So lets run every test in the book, and try to cram, cram, cram this kid in a box.  A mold.  Something that textbooks, clinical experience, whatever, have told us existed and this is how you proceed.

Well, I would doubt that there is any child that has had the exact some experience as AJ.  Which truly makes does make him unique, doesn't it.  His history and journey has been unique and makes him special, as he has most certainly defied the odds against himself. 

AJ's skills are often underestimated.  Or it is assumed that he just can't do it.  Because he's stubborn.  Oh is this kid stubborn.  If he is not motivated, or if he's bored, or not challenged, forget it-its over.  In the constant pursuit of putting him in a box or mold, he's expected to do X, Y, Z.  "AJ put the blocks in the bucket."  What child, literally, sits on the floor and puts plain blocks in a bucket just for fun?  Maybe some, who might dump it out and make a game out of it.  But I am finding that AJ responds much better in play-type situations.

It is assumed, that if he doesn't do it right that very moment, he can't do it all.  Mark "no" or "emerging" on that checklist.   AJ isn't a puppet.  He is not a dog.  While I understand that AJ, just as all kids, need to learn to follow directions and in his case verbal prompts do something, I feel we are constantly telling him to sit, stay, fetch, drop in the bucket on command.  Ask him to perform like a circus animal or something.  While I understand the checklists, evaluations, and testing is necessary, it sometimes paints a very gloomy picture.   It is incredibly hard not to focus on the results, numbers, and levels.

I've been thinking a lot about the two families I know who have children with CP/CIs.  We are certainly drastically different.  But talking to these families renews my hope in AJ's future.  Because those kiddos defied their own odds.  The similarity?  All of our kids have CP and deafness with CIs. Yes, we are different, I know that.  Its been drilled into my head.  But that doesn't mean I shouldn't talk to them! Those children were diagnosed earlier, had early intervention much earlier, their journeys overall were very different than AJ's.  While we were able to work on AJ's motor skills from the moment he came home, his cognition, his vision, and most certainly his hearing and the ability to communicate came much later.  There was no therapist at our house when AJ was just month old.  He didn't truly tune into his world until he was given the gift of sound.  When he was given surround sound, he tuned into his world like we've never seen before.

His history is not to be overlooked.  While we don't want to dwell on it, his history is important.  It IS part of who he is.  And if you weren't there with us, I understand, it is hard (and sometimes a lot of people don't comprehend it at all) for you to understand it.   It is quite easy to get caught up in the sadness of his story and not view it from a logistical side. There needs to be a delicate balance between recognizing and understand AJ's history and moving forward without hesitation because of his history.  It took years for us to convince someone, anyone, that he needed speech therapy.  Why? Well, "With kids like AJ"....  Can I tell you how much I despise that sentence?  Move forward.  Don't assume he CANNOT, because odds are HE CAN.

Do I know AJ sometimes looks like he's in LA-LA land?  Of course.  Do I know he doesn't wave bye-bye?  Yes.  But I also know that he CAN wave bye-bye and at least now if you say bye-bye he turns around and looks you right in the eye.  He knows what it means when you say "Lets Go Bye-Bye."  Do I know he doesn't vocal play?  Yes.  But he's starting to. :)  Do I know he doesn't know his colors or shapes, or numbers?  Of course.  I also know its because we aren't there yet.  A big part of learning is communication.  And if he's behind on that, we'll then folks, he's probably not going to sing the ABC song to you today, now is he? 

But that doesn't mean he won't.  In the past few weeks I've found myself in a place where I've been beaten down so many times I started to fool myself into thinking these things are never going to happen, so why bother. So many people saying so many different things. So many things to work on, worry and stress about. The odds are against him, I know that.  They always have been.  Do I want to hear, in someone's professional opinion, that he won't talk.  Of course not.  Imagine, for a  moment, how you would feel if someone told you your child was not going to talk.  First, intense emotion.  Second, fight or flight.

We'll continue Playing the Game.  Playing the "lets see whats wrong with AJ" game.  Do I think AJ will talk.  Yeah, I do.  Tomorrow?  No.  But I truly think he has the capability to do so.  Well what does so and so say?  This one says maybe.  This one says only a few words intelligible to family who know him. This one says try an augmentative communication system, its easier.  This one says I think so, he just needs to figure it out and it will be a challenge.  

As his advocates, Jer and I say yes, he will talk.  And thats what matters.

A Running Memory

I just sent the .pdf file of our old website to Kinkos to have it copied and bound.  While I was on the phone asking how on earth this would all work, I started reading some of the old posts and stumbled on these from the week AJ became ours forever.  Since this week is "the week" that began our journey of bringing AJ home from Guatemala, of course I'm sentimental. I thought I'd share, since this very moment is why I chose to start a website, and then later started this blog.

It is a running memory of our lives with AJ.  So when I forget simple things, like when he went off the bottle (which I swore I would never forget), my words are right there to remind me.  My words reminds me of a time when I "wasn't" a special needs mom and watched my baby boy sleep for hours.  When our world seemed perfect and we could think of nothing other than holding AJ and never letting go...

7/27/2007
Sorry this is so late...we've had quite the day/evening. We were

supposed to be on our way to the orphange to pick up AJ between 10-11am.
After 11am we called and were told that we would not be getting AJ until
around 5pm. What?! Long story short, it was a #@*(& of a day and at 5:45pm,
he was placed in our arms forever. He was sleeping---tiny as ever-we always
think he's going to be bigger :) He was dressed in a stripped onesie, a long
sleeved fall themed onesie over the stripped one, khaki pants, and socks. He
was dripping with sweat when we got him and of course, continued to do some
since he was sleeping....we took a moment to enjoy what God had just given us
and to sort of stare at him in awe. Jeremy opened our "packet" of documentsholy
cannoli-he comes with paper!!! We have his Guatemalan passport, new
birth certificate, and lots of other documents....
We made our way upstairs to our room to lay him down on his Quilt of Love....
and he woke up. We stripped him down to his one onesie and since he was
super hungry, so we fed him-ok, he downed 6 ounces like a champ. He is doing
extremely well. We "tripod'ed" him-and he stayed upright for about 10 seconds...
he's grasping objects and following things with his eyes-especially his bottle
when its all gone :) He holds his head up higher now when he's on his tummy,
and we give him a week or two and he'll be army crawling....He's got a couple of
new teeth coming in, and is still Mr. Smiley pants like he always has been. We
grabbed a blanket and made our way to the lobby to wait for Pete and Tomas,
they came walking over and we had Pollo Campero for dinner. . Translation:
really good fried chicken chain that originated here in Guatemala-their version
of "KFC" but so much better. The boys (AJ and Tomas) kept starring at each
other-we are really wondering if they realize who each other is.
We finished dinner and made our way upstairs again, and just hung out,
playing and getting him used to a spoon. He is down for the night...
Today was the longest day ever...and we are so glad that at the end of it, a baby
boy is now all ours. More tomorrow-Mommy and Daddy are exhausted, but
thrilled at the same time :)


7/29/2007
Ok then....so its Sunday. We have sort of lost track of what day and
what time it is...its raining right now-its 5:01pm-holy cow I didn't realize it was
that late...well, lets back track for a moment....
Yesterday was our first full day with AJ. He went to be the night before at
9:30pm and then didn't wake up yesterday morning until 9am. Whoo hoo! He
probably had an exhausting day and then to wake up in a strangers arms
probably threw him for a loop. So, he got up and he got a bath and then we ate
breakfast....he went back to sleep around noon and slept until 2pm....then he was
up till about 830pm. Pete came over from the hotel next store with Tomas and
we hung out...the highlight of our day-we managed to have him eat some rice
cereal and Pete and Jeremy logging onto Yahoo live to "watch" the Brewers
game. We had a pretty laid back day yesterday-since he had woken up with a
wicked cough......so he slept most of the day. In the afternoon, we had AJ and
Tomas playing on our bed and Tomas decided that they should wrestle-AJ got
pinned-naturally-we got a picture so we captured the moment!! At night, we put
him in a sleeper that says "Daddy's Little Helper" and it has wrenches, hammers,
saws all over it. Grandpa Doug would have loved to see him in such a
"HANDY" outfit.
He went to bed around 830pm and as I suspected, he woke up around 1am. We
had a bottle and then he restled around in his crib for about a 1/2 hour and fell
back asleep. He woke up again at 9am. Daddy gave him a bath and just as we
were getting ready ourselves, Pete and Tomas came to visit. We all had
breakfast-and then I heard someone say "Heidi?!"
I turned around and it was Wendy....those of you that are in our immediate
circle of family and friends probably saw the video that we received from our
adoption agency with AJ's referral. The family who shot the video is here and
we hugged each other to death when we saw each other!!! Her husband flew in
this morning, so we were able to meet him as well. It truly is a small world.
They meet their daughter tomorrow.
So we sat outside, all of us, and talked-its so beautiful to just sit outside and
listen to the fountains in the front area. Not as much traffic on Sundays either....
which is nice. AJ decided not to nap until about 1pm today-which is extremely
late for him. He is showing signs of stress, which is to be expected. We suspect
that he has finally figured out, hey-this is not normal. All children that are
adopted go through a period of grieving, and believe us it is hard to watch, but
it will pass....this we know. He's a bit ornary today-but we still love 'em :)
I got to hold Tomas today-which was exciting....Molly, his mommy, will be here
in 2 hours and Tomas' Daddy can't wait....!!!! We all have our Embassy
appointment very early in the morning-715am which means we have to ready
and rarin' to go by 645am. Yikes!! When they dropped AJ off, he came with his
adoption packet, which has his Guatemalan passport, pink slip, copies of all
reports, vaccine records, etc. Very interesting paperwork he came with :)
Most of it goes with us to the Embassy tomorrow.
Well, there is a lot of noise in the dining area and I should go upstairs by Jer and
little man, but we just thought we'd update everyone...more after our Embassy
appt tomorrow.