Sunday, August 29, 2010

Turtle's Education

Apparently, turtles need to go to school too...

Saturday, August 28, 2010

Let's Talk About It

Recently, I've been emailing with Ellen, another mom who's son has CP, and who runs an awesome blog of her own, To The Max.  I absoutely love the way Ellen writes.  My latest question sparked a blog post about speech devices.  Please take a moment to read her post AND the comments HERE.  Don't worry, I'll wait for you to read it and come back...

Last night I had a dream.  A dream that AJ was at the park playing and all of sudden noticed I was there.  He came barrelling across the grass (the dream was equip with slow-motion and I swear Chariots of Fire should have been playing) SHOUTING "Mama Mama Mama."  About a thousand times.  I woke up so abruptly, as I thought he was really calling me. It was so incredibly real...feeling.


The fact remains that AJ is struggling to communicate.  Let me rephrase: He's not forming speech, words, etc.  And I don't know which way to turn.  All these different mazes and not a guide map for any of them.  Everyone has their own opinion, everyone thinks their method is the best.  And yes, we know AJ best, but that doesn't mean we know all the answers.  Yes, he's made incredible progress, but that doesn't hide the fact that when a stranger talks to him there is no response-in any way shape or form-other than maybe a smile.  Well is it that big of a deal?  Um, YEAH.  It is. 

I get angry at other moms at the store with their kids because they have the ability to talk to their children, and have their children talk back to them.  It really irritates me when they tell them to stop talking.  Yep, something that simple because in mind, that mom probably doesn't undestand what a blessing she truly has in a chatterbox child.  I know, these are very broad assumptions, and if that makes me look like an a**, then so be it.  I feel this pressure that AJ must talk.  I would get into the reasons, but lets just say I'm trying to make it easier for everyone.

I guess perhaps I dont' have anything pertinent to say on the subject this morning.  But I do want to thank Ellen for her response, and the responses from her readers.  They are all much appreciated.

Friday, August 27, 2010

Up, Down, Catch 22

Yesterday morning I wrote the "Shenanigans" post.  Everything's great, la la la la.  I think I set myself up for disaster, sometimes, you know?

We went to his auditory therapy appointment, where his new teacher met us to observe, and it was the holy grail of disaster.  While he is tolerating being bilateral again, he is extremely sensitive at times.  It comes out of no where.  His first major meltdown came after both myself and his therapist praised him.  Apparently we were too loud, because it set him off like a fire alarm.  Between a combination of giving him some quiet time, then holding him, then showing him his absolute.all.time.favorite.auditory.therapy.time.toy, he calmed. But then go upset again when we took said toy away, because it has lights and spins and in his rough state we knew he'd stim on it.  Stim on it?  Focus solely on that toy, stare at it and ignore the rest of the world.

While he was screaming, I found myself in yet another Catch 22.  I knew if I took his coils off, he'd stop crying, thats what he wanted.  We are in  very delicate stage right now in that we don't want to develop a dislike for hearing the world, or be in pain, but we don't want him to think he can just take them off whenever he wants and get his way.  This is where the "AJ whats wrong...Mama my ear hurt" would come in really handy.  I found myself getting worked up, and embarrassed.  I know the teacher who came to observe, but I always get nervous when someone is around AJ for the first go around.  I would be a bit intimidated if I had a child I was observing and he was screaming bloody murder, wouldn't you?  This teacher has been around AJ several times now, so I know better, and perhaps I am not giving her enough credit.  But in the moment, I felt myself getting rather worked up and frustrated while I was holding my son, trying to calm him.  This is the Mom feels helpless routine. 

We kept plodding away with activities and eventually AJ participated, begrudginly at first, but then gave in.  We kept our voices calm and cool and continued on.  He did do some great listening skills that day. 

We wrapped up the session to give AJ's therapist and the teacher a chance to talk.  I joined the conversation, where I shared his "OOOO" for "ON" and "AH" during ma-ma-ma.  His teacher could tell his body language changed, showing he understood when we'd say "bye-bye" to a toy and he'd look over at his therapist, anticipating the bucket to appear from behind her.   From sitting next to him, we saw him pause and look.  He participated in a bit more of vocal play this time around.  The joint consensus: AJ is inconsistent. Big surprise right?  This makes it very difficult to figure out exaclty what AJ can do.  Is he vocalizing with intent?  Is his imitating? 

We left the appointment and made an impromptu stop at the park to meet up with a friend, where AJ proceeded to have a meltdown about the swings.  I let him swing for a few minutes and then took him out to see if he would enjoy those rock-back-and-forth-horse-things-on-springs at the park.   He screamed bloody murder.  A full all out tantrum. After he calmed a bit, we eventually went back on the swings for a short while and he crashed out cold in the car on the way home. While he enjoys swinging, it also causes him to loose where his body is in space.  Its very odd.  I would have thought since he loves the vestibular movement, it would do just the opposite.  Nope.  We will keep trying, and hopefully each time he will learn to calm himself.  I do know that we can longer swing him for long bouts of time, just because he likes it so much. 

We zoomed on over to school for "Meet the Teacher Night".  I can't believe how much is classmates have grown.  It was great to meet a new parent, who was the carbon copy of me last year.  So nervous about her kiddo attending school for the first time.  It was nice to be on the other side of the fence and calm her nerves, at least a little bit.  We met some of AJ's new classmates and I got some clarity as to how this year is going to work.  Very exciting stuff! 

We left, due to AJ going into "Mom its loud and I can't take it" mode, and the car ride home was intense.  I think I was coming off of a nervous-high intensity day for me and AJ was tired, hungry, and of course, trying to tell me by whining.  I sort of barrelled through the door when I got home and Jeremy knew he was on duty for a moment, or three, while I took some time just for me. 

I hadn't realized how nervous I had become about AJ returning to school.  I know he'll do fine.  But I still get nervous.  I know the potential this kid has, and I become frustrated when something or even AJ himself stands in his own way! Knowledge is power, and up until yesterday, I didn't have all the pieces.  Heaven forbid. 

I was upset about his therapy session early in the day.  While I know today is a new day and yesterday is behind me, I was still frustrated about that session.  Not at AJ, but at the fact he got a blasted ear canal infection at the worst possible time, in the worst possible ear, and is having the worst possible (in our opinion) time bouncing back from it.  We have done all this hard work boosting his auditory skills and it sort of is, down the drain.  I know, dramatic, but true.  As we were walking out, his therapist and I were both really bummed about his sensitivity to sound right now.  We don't even have enough to say whether what we are doing is working/not working, in regards to whether we should continue therapy or not.  So we decided to keep plugging away, and will continue therapy into the school year.  While this makes both Jeremy and I extremely excited, the reasoning behind it made me sad.

I took a long shower and settled into the couch with the "your kid is starting school" packets we received last night.  I love paperwork!  As I read, I watched my boys wrestle and watch the Packer Game.  It was the perfect end to a very hectic day.

Thursday, August 26, 2010


CP Doctor/PT-Because these two are like sisters at this point.  AJ did have botox in his left calf...over two weeks ago.  It is a very good thing we got the botox when we did, because amidst this ear canal infection, AJ has also been growing.  I swear he's an inch taller each morning he wakes us.  We are trying to keep him loose and marvel at his long nights of sleep.  It is hard to see how the botox has worked since the growing is throwing a wrench into things. 

We did receive confirmation of our appeal being filed with his state insurance, we even received our court date.  The good news is: We no longer need to appeal because we were granted more visits due to the botox injection-enough to take us to December.  We had also resubmitted to our primary insurance company (it was too late to file a grievance on the original denial from 2009). Another blessing: our primary insurance is covering some PT sessions as well. 

AJ is now wearing his AFOs to bed, which has been quite interesting to say the least.  They are intended for stretching.  Luckily, he has enough natural stretch (hold his calf and bend his foot toward his calf) that he doesn't need serial casting...yet.

His PT again mentioned that AJ may be done with therapy soon.  She told me this is remarkable for a child with cerebral palsy.  I know.  He may need intermittment therapy during growth spurts, but overall, he's nearing the end of PT.

Feeding/Weight-AJ has made progress by leaps and bounds with feeding therapy.  I can't even tell you.  He's chewing on his right side, using his tongue to place and manipulate foods vs. using his fingers to place.  He's biting and chewing on the right side by his own choice-which is quite amazing.  He seems to like pickles, salsa, and jalapeno cheddar potato chips.  Whoo!  His trunk is stronger, he's louder than ever, and his oral motor control has improved significantly.  Its always a good thing when his feeding SLP gives me "knuckle bumps" during a session! 

Due to his infection, AJ's appetite has been hit or miss.  I felt my heart sink when he was weighed at Urgent Care that day at 24lbs 4 oz.  He had lost weight.  Thankfully, we have no upcoming appointments with his GI (yeah!) so I don't need to be too worried about what he'll say.  At his ENT's office he weighed 24lbs 7oz (on Wednesday) so I felt a bit better.  Even though I have crazy rules about scales, this time I didn't care.  We'll just keep feeding him.  I do wish that instead of getting taller all the time he'd grow wider.  Te-He.

OT-AJ's fine motor gains and the strength in his hands/arms has exploded.  He can now turn a doorknob, he just hasn't figured out how to turn it all the way and pull back to open the door (which is fine with us).  He now closes doors fully, opens the refrigerator on his own, and his latest-opens and closes the microwave.  It cracks me up.  It happens to be on a table in our dining room (since the kitchen is still under construction) so he just goes to it, watches it when he HEARS you turn it on, waits for the beep and opens the door (he knows not to touch whats inside and I'm always close by-no worries).    He loves playing with painting dobbers and is very close to drawing lines on a piece of paper.  He can handle a scissors, like these, and is learning to cut paper.  His left side/arm/hand has been nice and loose despite his growth spurt, swe are thankful for that.  I always love it when his therapists say "He's nice and loose!"  Yesterday his OT was holding his left arm up and a bit over his head.  He didn't mind at all and his body cooperated enough to allow him to do the exercise.  I was amazed.

School-Starts in less than a week.  I can't believe it.  I bought AJ a backpack in the Spring, because they were on sale. I purchased all of AJ's school supplies in early July, and I highly recommend doing that to all Mom's.  It saved me so much time and worry, especially with his darn glue sticks.  They are always the most impossible thing to find!  His newest addition to his supplies: a lunchbox.  I can't believe he's going to be at school two full days this years.  He's old enough to need a lunchbox...

Tonight is "Meet the Teacher Night" at school.  AJ's teacher has changed this year, but we already know her, so no worries there!  He'll still be in the same area...I guess the arrangement is hard to explain.  He's in good hands!  How about that?!  I'm anxious to see his face when we walk into school tonight...last time we were there (in early August) he lit up like a Christmas tree walking down to his classroom.

ESY-I'm sure you are wondering why I mentioned we were at school in early August. AJ attended Extended School Year (summer school) from late June to early August, one hour a day, two days a week.  We were lucky enough to have 7 weeks of ESY, instead of the typical 5. A huge thanks to AJ's school SLP who took time out of her busy summer with her own family to provide AJ with more opportunities to learn. 

Auditory Therapy-Today is our first session back after a three week hiatus.  AJs new teacher is coming to observe today, so I am hoping he will do well.  He's tolerating both his ears, but has moments where he needs a break, and all this loudness (after a week of no left and only some sound on his right) exhausts him.  Between his hearing and growing, he's been averaging 13 hours of sleep a night.  Today we will be making the decision to continue with auditory therapy during the school year or not.  Jeremy and I would both like to see AJ continue.

Overall-he's doing GREAT.

Thursday, August 19, 2010

Thursday's Book Corner

Seriously.  I devoured this book.
I had forgotten how much I LOVE to read.
Other than racing through the Twilight Series,
I haven't read a book in a really long time. 

My review of this book:  Incredible.  A+. 
While I certainly cannot travel to three different countries to find myself, I thoroughly enjoyed reading her journey and was sucked in from page 1.

The book was borrowed to me, so I'm going to get my own copy today, so that I can highlight.
Yes, I'm serious.  When I started reading I never knew that it was a best seller or had sold 8 million copies, or that women all over the world use it as a bible of sorts.  Nope.  To me it was just a book.

Eat Pray Love reminded me of how badly I want to travel to Italy and Greece some day.  It made me crave Italian food, continue exploring my faith, and kiss my husband goodnight.

Read it. 

I did see the movie that just came out based on the book (same title).  They stayed true to the book, which was awesome.  I do think, though, that if you haven't read the book, the movie is not going to make much sense to you. But that's just me.

Wednesday, August 18, 2010

Tuesday, August 17, 2010


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.  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?

Monday, August 16, 2010

'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 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. 


I've found this writing process, or whatever you want to call 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....

Wednesday, August 11, 2010

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.

Tuesday, August 10, 2010


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 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 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. 

Monday, August 9, 2010

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.

Thursday, August 5, 2010

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 that when he goes back to school, he can communicate his potty needs.

Potty Like a Rockstar, AJ!

Wednesday, August 4, 2010


{Remember to disable playlist above before viewing}

Directions for Leaving a Comment:

Scroll down to the bottom the post you wish to comment on. You will see the time/date stamp on the bottom along with the number of comments and a small envelope. Do NOT click on the envelope! Click on the "0 Comments".

A text box will appear for you to write your comment. You can use Anonymous, just leave your name at the end of your comment so we know who you are! Thanks!