All the Ups

First, allow me to clarify what I meant about how thinking about AJ's future is painful.  It is not ALL painful.  But the detour is initially painful.  You know, your drivin' along and suddenly are faced with a detour?  Some frustration sets in and perhaps a slight bit of panic as to where is blue blazes this detour is going to take you, as well as whether or not you'll arrive at your destination on time because of this blasted detour.  Does this sound familiar?

I think what was the most painful was changing the mindset.  Our journey has not been classic.  I prefer to think of it as unique.  But there have been serious moments of pain when you realize your child will not be sitting on that bar stool at a college bar with his friends, or any other of the myriad of classic moments in a child's life.  The process of changing your mindset is painful.  But here's the thing: I don't care about that anymore.  AJ will be AJ and his life will be full and enjoyable.  We'll do whatever it is he needs/wants.  I worry more about the logistics of this new road of a life-time of care for him.  I know his life will be outstanding.  No doubt.

So, moving on to the ups...

AJ saw his GI doctor in August.  It was so hard for me to believe that he hadn't been there in a year.  First stop, weight.  31.5 lbs.  Woot Woot!  Second stop, the room with a view.  I secretly hope each time we visit the GI clinic that we get this one specific room that has a whole wall that is a window.  And then, AJ was discharged.  Say what?  I was in complete shock.  AJ?  He was busy playing with the otoscope which, why do they have an otoscope at the GI?  Anyway, they feel he is doing so well there is nothing else they can do for him, other than what we keep doing.  Last year they were a bit concerned about his calcium intake, but since he's now drinking white milk, and loves all sorts of dairy products, they aren't concerned.  On the days where milk isn't his choice, we give him a Tums.  Yeah, and he eats it.  He's growing like a weed, so I wouldn't be surprised if he's now around the 33lb mark.  Way to go buddy!

During the first week of school we had AJ's private feeding therapist come in and do a consult with AJ's school staff.  I was there too.  The week prior, I had witnessed him eating in the cafeteria. Woah.  Sensory overload and HOLY LOUD.  Yep, I'm that mom that walks around her kids school with her cell phone out.  Really, I have a purpose.  I'm checking to see how loud things are.  After watching him, I immediately stated to his staff that he cannot eat in here.  He's now eating upstairs in a classroom with friends.  His whole entire demeanor has changed, his behaviors are slim to none, and he's not on sensory overload, so he actually eats his food.  The staff is very comfortable with AJ's eating style.  This brings me a HUGE amount of relief.  He has a current Feeding Plan on file.  I am one happy momma. 

A few weeks ago I had AJ's CI processors tweaked.  It's been awesome.  Now that we are aware of how loud certain environments are for him, things make so much more sense.  He's no longer hating his CIs.  That's truly the best way I can describe it.  His audiologist tweaked his sensitivity, which has been sooooo awesome.  He's been doing well at school, but still prefers only one ear on the majority of the time.  We saw AJ's audiologist last week-she wanted to know who this kid was in front of her.  When she came out to get us, he was in the middle of putting his coil back ON himself because he know he was missing out on sound.  Holy awesomeness.  He was much calmer during the appointment and when he wandered into the soundbooth, we followed.  He sat on my lap, with one of the audi's in front of us, while the other was behind the window running the testing.  I haven't been in the booth with him for a very, very long time.  He's never just sat in my lap.  His audi didn't even need toys to distract him.  After I had said that anything over 70dB causes him to take a coil off, we started there, testing several frequencies. He responded to the VRA-WHOA.  He lasted about 10 minutes, which was amazing for him.  They also tested higher dB's and at mid-frequency, he responded at 30dB bilaterally.  Woot woot!!!!  We called that a success and got out of there before things got ugly!  His audi ended up tweaking the sensitivity just a little bit more.  Like, a smidge.  We're giving him 2-3 weeks to adjust and then we'll go from there.  I'm determined to keep on top of this.  It is SO COOL to see him put his own CIs on because he wants to hear.  That is a cochlear implant parents DREAM come true.

I've had to raise the swings on our swingset twice.  I've had to raise the rings on our swingset twice, because someone keeps on growing, and growing, and growing.  Which is good, and sorta bad.  It's shocking to us because we've gone years with praying he'd grow with very slow progress.  So its weird to us.  He's way to heavy to pick up and carry now-which you'd think at 30 some pounds that wouldn't be too bad.  AJ is dead-weight when you pick him up-the majority of the time.  Ufta.  He's too big for the infant straps in his car seats.  This all so exciting, and nerve-racking at the same time.  When he grows, he hurts.  For those of you that are newly reading my humble little blog-his cerebral palsy prevents the message from his brain to his muscles to happen normally.  So, he grows, his bones grow, but his muscles stay.  Tight.  Ouch.  Hurt.  So, growing can be painful for him and increase his tone.  When he grows, its like he's walking in 4 inch heels all the time.  It totally screws up his body awareness. We bulk up his time of his gigundo yoga ball, swing him (helps him loosen up) a lot, do lots of deep tissue massage, and long baths.  Our whirlpool tub is the absolute best thing about this house, because AJ has benefited so much from it. 

Lots of tune-ups, change-ups, and growing up going on!

Helpless

Tonight, after Jeremy gave AJ a bath and he was snuggled in his bed, I went in his room to kiss him goodnight.

It was then that I recognized that stare.  The seizure stare.  I waited, and saw the drool.  I dropped to the floor and watched my little boy stare into space and held his hand.  This one was about a minute.  A minute that felt like an eternity.  I sat and cried silent tears while I watched my little boy seize.  I watched him intensely waiting for my little boy to come back.  And he did.  With a big smile and a hug.  Thank God.

Tonight is one of those nights that I feel so helpless.  We do everything we can for AJ, but this is one area we simply cannot do anything for.

No mother should ever have to watch their child suffer-in any way shape or form.  Watching my child seize is torture to me.  Pure torture.  I try my best to be strong for him and comfort him.  Even if he's still, I want him to know I'm there.  His seizure activity has been off and on recently.  I really hope it goes off for a while.  

I still don't understand why AJ's epilepsy is the hardest thing for me to handle.  Of all the things he has going on, I can't get over the epilepsy.  I worry about more brain damage.  Sometimes, I even get scared that some day the seizures will be uncontrollable and will take him from us.  Tomorrow, I will call his neurologist's office.  To which the nurse will talk to me for a ridiculously long amount of time and talk me through everything epilepsy.  It will probably lead to another visit, a blood draw, and maybe another EEG.  All of which I hate.  Perhaps it won't.  She'll remind me that breakthrough seizures do happen.  They are controlled most of the time, but sometimes one slips through.  Was he drowsy?  Yes.  Then you know the most common time for seizures is drowsiness and during sleep.  Yes, yes I know. Is he growing?  Yes, like a weed.  Well, then?....  I know, I know.  

I'll be checking on him a lot tonight and am already anxious for his amazing morning smile.

Special Needs Family Support Group

A few months ago I had ants in my pants about the fact that there aren't any special needs support groups in our area.  After speaking to a few different contacts in the special needs world I learned that most groups fizzled out a few years ago.  Lovely.  I was done searching and moved on to "Well, I start one then.  So there!"

So, I contacted a friend at church and asked if we could start a group there.  This is one of those moments where the stars aligned just perfectly.  She told me another church member and her husband were just organizing and planning such a group.

We've been meeting for a few months now and its been absolutely wonderful.  We've met some awesome people and formed some great friendships.  It is the most amazing feeling when I say a phrase or acronym and do not have to explain it.  To have another parent understand how a special needs bad day is different than just a bad day.  To vent and have someone actually get it. We laugh, we cry, we support one another.  We share resources.  We opened new doors.

Did I mention how great this is?

Jer and I learned quickly that we're sort of veterans in the special needs world.  While AJ is still young, we've been around the block and then some.  I've said it before, but a little tiny piece of my heart heals each time I am able to use the knowledge we've gained from our experiences with AJ to help someone else.

Hooray!

Finding the Sunshine

I woke up this morning, clearly on the wrong side of the bed.  I haven't been sleeping well recently.  Which may not be surprising, but to me it was since I was on a "great night of sleep" streak for about six weeks.

I growled out of bed, got ready and heard what sounded like blocks tumbling down the wall.  "AJ's up," I announced.  I walked in to see a smirk-faced boy sitting on the floor amidst a million puzzle pieces and the container they go in-on top of his head.

We commenced the morning routine, which currently includes three medications.  His seizure medicine goes down with ease.  I'm the luckiest Mom on the planet that this kid has no qualms about taking medicine everyday.  Twice a day.  The second medicine and its mondo syringe to dispense it is met with minor whining from AJ and anxiety from me.  I prep the mondo syringe with his antibiotics and prep a small syringe with his favorite-Tylenol.  He loves Tylenol and Motrin.  "This first, then this one, " I say.  I give him the antibiotic one mL at a time, slowly counting down how many we have left.  "All Done!" I exclaim.  He swallows, then giggles as I pick up the syringe with the red cherry goodness.

AJ plows through his oatmeal and downs his milk.  I groan noticing the oatmeal on every inch of his pajamas, face, and hands.  If there is anything that I hate cleaning up, it is definitely oatmeal.  He successfully wears his cochlear implants for a full five minutes before flipping a coil off as I am putting his braces and shoes on.  I lose it.  Tears, begging sweetly to be a good boy and wear his ears.  While we make our way down the stairs for "the morning swing" he enables his shoulder to rub off the other coil.  I watch the time closely while he swings, take him to the bathroom, and come upstairs.  He commences the giggle-fest that has somehow become routine when putting on his jacket.  It makes rushing nearly impossible and makes getting his jacket on even more impossible.  We get to the driveway where he corkscrews, I let him fall, and he laughs.  Some days he sits, today I was thankful he stood back up.

As we drive to school I watch him like a hawk in the "AJ mirror" attached to my visor.  We arrive at school, where he flips a coil off as we walk in the door.  I get in the car and feel the uncontrollable tears coming.  I pull out and turn left onto a different street so I am not the mom in her car bawling in front of school.

By the time I arrive home I am no longer crying.  The worries?  They linger.  The thoughts start running on their hamster wheel. School is not going well. We're four days post double ear infection diagnosis.  His ears are fine.  He's been "hearing" for a month after a ridiculous hiatus for who knows how long, this was not what we needed.  Oh, I have to write that appointment in my calendar.  How long will this last?  I have to get him back in the pool.  When is he supposed to see Dr. M?  Make a plan for spring break.  Schedule therapies for spring break...

The sun suddenly breaks through the clouds and I can feel its warmth through the window.  I run around the house, opening the blinds and windows.  How bright it is when light is allowed to shine in!  I go outside and spend some time with the pooch and his Frisbee.  He is happy, I am warm and suddenly feel better.

I find myself all to often wrapped up in the special needs that have special needs in our life as a family.  It consumes a massive amount of time.  And a lot of my own personal energy.  I don't like to drag through a day but sometimes I do.  Raising a child with special needs is different than raising a typical child.  Until you do it, you really don't know or understand.  I have wasted plenty of precious energy on trying to convey that message.  I am needed more.  I am needed in different ways.  We are needed, often, indefinitely.  You give more of yourself to your child than you ever dreamed possible.  And yes,  in a different way than parents just give themselves to their children.  I'm not discrediting you typical parents out there.  No, I am simply stating that my role as a parent is different.

Trapped under the fine print that comes with having a special needs child, I don't often see the sunshine.  His needs-sometimes they make me angry.  AJ doesn't.  The needs do.  The compound idea surrounding special needs can drag you down.  I spend so much emotional and mental energy on what my child has needed/needs/is going to need that my physical energy suffers for it and I'm often a mess when my husband comes home.  I'm thankful its not every day, but recently, yeah.  It's happened a lot.

Time is precious.  And while I cannot force or rush my child, I don't want to waste time either.  I've had  little bits of sunshine creep in here and there.  I love his morning smile and his excitement during baths.  I love how he cuddles me now, when for years I prayed he would do just that.  I hate how tired and frustrated I am at times and how the first thought in my head is often therapy related vs. ice cream date with my son related.

I know too much to enjoy him sometimes. That makes me sad.  I'm not an expert on cochlear implants or cerebral palsy or anything else he has going on.  AJ is a special needs jambalaya.  I need to know a lot in different areas, which is often frustrating to me.  I feel like I have no focus.  In essence, I do.  AJ is my focus.   But when it comes to his needs, its multiple choice.

Spring might just become my new favorite season.  I'm not sure.  I'm sure fall will suck me back in with its apples, pumpkins, and crisp weather.  But for now, I'm welcoming Spring.  Spring's rebirth and renewal.  Spring's sunshine.

The Resilient Men in My Life

Today was one of those days I anticipated to be emotionally draining right off the bat.

Somehow, the day decided to out-do itself and went above and beyond the call of emotional duty.

First up, an appointment with AJ's cochlear implant team.  We decided to try the ESRT test a few electrodes at a time without sleep deprivation or anesthesia.  Amazingly, between five adults and AJ we managed to achieve the ESRT!  A new program was created from the results.  (I will do a separate post explaining more)

And then.

We figured out his processors have been switched.  Meaning, he hasn't been stimulated. As in -NOT HEARING A DARN THING.  Cochlear implants now have this "safety/non-freak out" feature.  The processor only works with one side and is programmed so that it will not work on the opposite side. Can you imagine wearing  a completely different program on the wrong side?  Ouch.

I have no idea how this happened, and it really doesn't matter.  What matters is that we make sure the mistake is not made again.  I'll be using the remote to test each morning to make sure we're copacetic.

My heart literally dropped the floor and I could not control my tears, not matter how hard tried.  This was the last thing we needed.  (How many times have I said that?)  I started questioning things, so that's why he's not turning to his name, etc.  All things you see in hindsight.  It bothers me that I don't know how long he's been "off-line".  When we put his implants on he freaked.  He wore one home and when I tried two, he screamed and I got sick.  Lovely.  I felt so overwhelmed that we were in a broad sense, starting over.    I can't stop his life to help him adjust-the world is a loud place!

After lunch, we went to downstairs to swing and he tolerated two just fine.  The pattern I found today was that he was fine for a while and then just needed a break.  He then tolerated them again...for a while.  This is progress.

A few hours later, we ran over to the neurologist's for a quick, painless visit.   We came home, ate dinner and listened to Pandora.

And he was happy.  Gee whiz, kid.  How do you do it?  As he giggled with intense excitement over the fact it was bathtime, I felt amazed by my little dude.  How.does.he.do.it.  So resilient.  He's always been that way.   He has such an incredible aura about him.  He inspires me to keep going.  If his little body and mind can do it, than I can at least try, if not do it along with him.  His smile is like an etch-a-sketch.  Really.

During AJ's first appointment, my foot fell asleep.  We were all sitting on the floor and I felt my foot fall.  When I attempted to get up at the end of the testing my left lower extremity was completely asleep.  In a very deep, odd way.  It scared me.  I tried to walk and it was this really weird feeling.  Not that funny, ha-ha my foot fell asleep feeling.

And I thought, Oh My God.  My sweet husband has this happen without notice.  I was humbled.  His MS has been playing games recently, which....  Has thrown us for a loop.  We were blessed with a full year without symptoms.  Although his recent MRI was stable, with no new lesions or activity, there are still some not-so-fun things happening.  With no rhyme or reason.  Which is incredibly frustrating.  So, I took my tiny glimpse into his fight and tried to understand all that I could.  So that I can be the best support I can for him. I can't explain how helpless we feel sometimes with all we've been given.  Its just a fact.

My husband is resilient too, you see.  And for that, I love him more than words can express.  He knows.  I know.  And we move forward.  I move forward with the strongest men I've known; the two resilient men in my life.

"I Don't Recall"

My mind has been all too foggy lately.  In fact, a friend posted "I have the attention span of a goldfish today" a few weeks ago and I've adopted that as my "I can't focus" creed.

Seriously.  Last week it was the attention span of a guppie.  On Monday, I slipped even further and said it was that of a sea cucumber.

So when a friend and I were chatting today and I couldn't answer the question of how many electrodes are firing on each of his cochlear implants...I hung up feeling moronic.  I know, I'm my own worst critic.  But seriously, this is stuff I know. This is something I KNOW. know I've asked his audiology team.  In fact, I've seen the electrodes in all their charty glory on the computer screen not once, but multiple times!

Why couldn't I remember?

Oh yeah.  I'm old.

In all seriousness, the sheer magnitude and variety of issues AJ has me juggling is making me increasingly perplexed.  I'm finding it extremely difficult to focus on just one thing.  Because when you focus on just one, the others fall to the wayside.  Believe me, I know. It's a balance, they say.   I'm still struggling with what to keep and what to toss in regards to this boy's massive paper trail.  Do I really need all of his ER discharge sheets?  Do I continue the mass medical binders with tabs for each specialty/area, or do I make smaller binders per specialty?  I'm back to writing my daily to-do's specifically for AJ in a specific notebook. Its been my saving grace.

Earlier this week, while discussing his new conjunction, junction, whats your function...scoliosis!  issue another friend asked, "I really don't know how you do it all. It seems like one thing after another."  For the first time EVER, I agreed with her and said, "You know I don't know either.  I do what I can."

And I drink wine.  Wine helps.

Choices

There are many times during our journey with AJ where there hasn't been a choice to do something or to not do something.

But then, I think again and really think about how technically, there is a choice in all of things we do with and for AJ.  While I would never think of not giving him his seizure medication, there is (technically) a choice to do so.  There is a choice in taking him to this doctor or this specialist or even to therapy.  I could go on.

The choice for us was made a long time ago.  Give AJ absolute everything and anything he needs.  Period.

Still, we often come under fire for the choices we make outside of AJ.  While it doesn't change our choices or follow through, it often comes as a surprise to us.  AJ is always a part of those other choices in some way or another. We try to find a balance between being AJ's parents and being Jeremy and Heidi.  Sometimes we succeed.  Sometimes fail. We keep trying.

Obtaining my BA has been difficult in recent months.  A funny thing happened when I stopped whining about it and sat down and devised a plan to schedule my time better.  It worked!  I made the choice to earn this degree so I'm going to own it.   Figuring out that I'll be graduating 3 months early has also been a huge motivator.

I'm proud of my sweet husband for not only going for but achieving so many of his own goals.  I ran across some paperwork yesterday from 6 years ago that had written "obtain my Nurse Practitioner" on it.  He's going for it and I'm so very proud of him.  

I have sat on the couch and wallowed.  Pity-party central.  Tears. Fear. Panic. They are paralyzing.  I mean, straight up paralyzing if you allow them to consume you.  It may not show, but I can be a huge fraidy-cat.  Straight up.  While certain experiences with AJ have given me thicker skin, sometimes I'm still sensitive.  Allowing our son's diagnoses to consume us, any more than what they already do consume, is not a choice we are making.  We both need to have something to focus on and enjoy outside of being AJ's parents.

That does not change the fact that we want the best for AJ. This does not mean a fancy house, cars, and all the latest toys. It means planning for his future, as his needs continue to increase.  It means having the ability to hire help when we need it, pay for the therapies and equipment that he's going to need. At the age of 5 AJ is already being denied services.  We are not going to be able to rely solely on what our state or other resources may provide him in the future.  Who knows how long all of these things are going be in existence.  AJ will not thrive on settled or skimping by.  I refuse to put him in some dumpy home when he's older just because that is what the state will pay for.

Bettering ourselves for the sake of ourselves and our son?  That's a smart choice if you ask me.

Silver Lining

Well, yesterday was interesting.  

He has repeated the same pattern that happened last weekend on Tuesday, so I let him sleep until he woke himself and then took him to school.  Yesterday, he was in a deep sleep again when I opened his door.  I gotta say, I'm missing the "beep, beep, beep...vroom, vroom, vrooms" in the morning.  It is so very rare for him to be that deep in sleep at that time in the morning.  

For a solid week we have been talking with AJ's school team about the observation by one the district's special education gurus.  Which was, of course, scheduled for yesterday.  So, I felt it important to wake him.  He did great during breakfast and getting dressed, but was a bit "off" in the car. I figured he was just tired. As I drove up to school he looked like he was drifting off to sleep.  Ok, so he's really tired.  He was wide-eyed when we parked and I dropped him off as usual.

A few minutes after I arrived home the staff called me, describing a seizure.  "...annnnnnnd he just fell asleep," she said.    Ok, let him sleep. I called the neurologist office and waited for a call back.  I drove up to school, honestly, to check on the staff.  I knew if he was sleeping, he'd wake up refreshed.  Sounds insensitive, doesn't it.  Such is the life of a special needs mother-sometimes.

The silver lining lies in these events:
+ Upon arriving at school I popped in to talk to the health room nurse.  I could tell by her body language that what happened did not cause the staff to panic.

+AJ actually having the seizure at school helps the staff recognize symptoms.  

+ While he was sleeping, two of his aides sat on the floor and navigated AJ's iPad, going through things that a typical school day does not allow time for.
+ I had the opportunity to chat about the seizure in detail with his school team.
+ I had the opportunity to sit on the floor and chat with the special education guru for over an hour, with various members of his school  team filtering in and out of our conversation.
+There truly could not have been a better day for the guru to be observing AJ.  

While I certainly would not like to repeat yesterdays, I am thankful for the silver lining.

Comfort

There seems to be a huge misconception that Jeremy and I are comfortable with everything that has happened in our lives in the last few years. 

Let me clarify.  NOOOOOOOOOOOO.

I've been thinking about writing a "What to say to someone when their life doesn't fit the mold, and then some" script.  Seriously.  I have come up with a few pointers, but not an actual script. Because another special needs parent may not want to hear what I want to hear, if that makes sense.  But what I have gathered, in this "new-age" idea of embracing our children and pushing them not to their limits, but to their POTENTIAL, is that we don't want to be ignored.

I was raised to tell the truth, and while I fell short of doing so when I was younger (don't we all), I am quickly making up for that stint in my journey as a mom.  AJ is complex.  His story is not simple.  It took me a good year to share his story in just one sentence.  Add in that I am naturally a very detailed storyteller, you've got a motor-mouth on your hands.  Most recently I've found myself refraining (I know, exciting right?!) from sharing things when people have made casual comments....

And it kills me. 

I feel like I am portraying AJ as an incomplete person.  This may sound wildly strange to everyone reading this, but its true.  And then I thought about how I think part of my sharing AJ's story, with details, is my way of trying to help people understand.  Knowledge is power, right?  I dug further into my own noggin and realized that sharing AJ's truth helps me heal the wound that was created when no one told me what was going on with him. 

Didn't I say I was going to talk about all of you? Gee Whiz.

It is no secret that sharing AJ's story, or anything, like "Hey, my kid had a seizure in the car last week and I called 911 on the side of the road," makes other people uncomfortable.  But honestly, I encourage you to stop and sit in whatever words are spoken to you.  Don't run, because you feel uncomfortable.  Yes, I know it is shocking that I, the person sharing this devastating news, would realize that you are going to be uncomfortable. 

But let's all think about this for a second.  How long does your lack of comfort last?  A few seconds?  A few minutes?  We may loom back into your brain every now and again, but do we dwell there?  No.  Be uncomfortable in that moment so that we, the people experiencing whatever was just said, can feel less isolated and less like a freak of the normal world. 

People tell me, "We don't know what to say."  Well, you can't fix it.  So start from there. Don't try to fix it. But say something.  At least something.  "I don't even know what to say" is an EXCELLENT thing to say, if you don't know what to say.  Why?  Because you are aknowledging my world.  Aknowledging my pain, my act of reaching out to you. Staring, or ignoring, crushes the heart.  Ok, at least it crushes mine.  Is it so much to ask you to be uncomfortable for a few seconds so I can feel some relief in numbers?  I don't think so.

Being a special needs parent has given me a completely different outlook on life.  It really makes me sad that I see so much selfishness...everywhere.  It saddens me that AJ's "stuff" freaks people out.  He's still AJ.

While I've posted before on how it is sometimes irritating to hear that this was "God's Plan" or His Purpose, or he won't give you more than you can handle...there is a reason that can be bothersome.  I, as the person living this story that made you so uncomfortable for a few seconds, definitely feels like I've got more than I can handle.  Those words don't act like magic fairy dust or ruby red slippers and make it all disappear.  They don't make me feel better.  Well, Heidi, you certainly have a crappy outlook on life, don't you?  No, I don't. The Big Man Upstairs and I have been dukin' it out for a long time, and continue to do so. And no I'm not sharing that story.

Oh Heidi, you've never been on the other side.  Well, yeah I have. I was recently in an uncomfortable situation myself.  I was with an acquintance who clearly just needed to blurt it out and have someone there for her.  I was uncomfortable. Really uncomfortable actually.  I paused and then said "something"...and she started to cry.  I recognized the type of tears that were flowing and stayed put as long as she needed me.  We didn't say anything else to each other, we were just together.

That my friends, is comfort.

NOW

Well...

I considered an array of possibilities for the title of this post.  And then I read a post on another blog, and stole the powerful three-letter word: NOW.

But for right now (pun intended) lets backtrack to yesterday...

I woke AJ up at 5am.  He was up having a private VIP:M (Very Important Person: Myself) Party in his room for a few hours.  Giggling and laughing like it was 2pm not 2am. 

I had to keep him awake until 10am, which was when he has his EEG.  His neurologists office just happened to have an EEG opening and time for his neurologist to see him...instead of two weeks from now. They cannot sedate, put under, do anything to kids to make them comatose during this test.  Which would be so lovely. Medications will give false results on the EEG.  So they sleep deprive children instead.  Not so lovely. 

I had thought to have him fall asleep in the car just as we pulled in (instead I was singing, pulling on his leg and trying like the dickens to keep him awake).  Thank goodness I did not have him fall asleep. Our EEG experience began with a beyond wonderful EEG technician.  She measure AJ's head with a fabric tape measure and make red marks on his head with a fun red pencil.  Twenty minutes later, after she had colored on his head, placed the electrodes and wrapped his head with gauze, the EEG began.  In this wonderful technician's many years of experience, she had never seen a child fight as much as AJ did.  Most kids give in after the electrodes are on and fall asleep just in time for the EEG.  Nooooot AJ. 

He screamed bloody murder for over an hour and a half.  Which complete unnerved me.  I'm used to his crying.  Believe me. But this blood curdling screaming gets to a person, especially as you are trying to keep his arms down and he's kicking you in the chest/neck, and eyeballs.  AJ's tone makes him extremely strong when he's upset and the whole "hold me down while this lady does weird things to my head" sent him into a total sensory overload.  I cried a bit while I struggled to hold him down-very unsuccessfully might I add. He was not able to have his implants on during the test, so we were in silent land, which also bothered me.  I had no way, other than blowing softly on his face and limbs, to comfort him.  Not only that, but the fact that he doesn't understand "this lady isn't hurting you, she's just putting stickers on your head, now go to sleep" is upsetting. 

He did give us about 2 minutes of drowsy-laying and doing nothing toward the end, where she was able to get some good reading.  The end of test featured a strobe light, which AJ was thrilled with.  If she would have had the light going the whole time, he would have been perfect. 

When we left, AJ had a huge grin on his face.  He crashed in the car, just as I pulled in a drive-thru to get him some lunch.  We returned to the clinic to see his neurologist and review his EEG results. AJ slept through the entire appointment, the whole car ride home, and finished his nap in his own bed.  I wish I could have slept through the appointment....

AJ was diagnosed with Partial Epilepsy. 

Partial because his EEG showed abnormalities on the right side of his brain, not both.  Apparently, the abnormalities began almost immediately after the EEG test started.  Great.

As his neurologist spoke, AJ's weight (he was sleeping on me) seemed to get heavier and heavier.  It was harder to breath.  And the tears began.  I quickly wiped them, hoping his neuro wouldn't look up.  And he did.  He has such a kind spirit, his kindness made my tear ducts smile and produce more tears. 

While he was typing away, he asked how AJ's language was coming along.  More tears.  I had asked him via a phone message exactly where AJ's brain injury (CP) was according to the MRI he had done just two months after we brought him home.  I asked him for more details as to exactly where everything happened, to which he pulled out this awesome 3-D chart and showed me how my kids brain is messed up.

I was thrilled.  To know where the input, output, understand of language and all of that just amazed me.  It further led to the never-ending puzzle as to why AJ is not talking.  But let save that that for another post and stick to the epilepsy stuff.

AJ's seizure last week (yes, NOW it is regarded as an actual seizure) was the first that we noticed.  His neurologist's thought is that per the massive abnormal activity on AJ's EEG, he's had other seizures that have been "clinically silent".  His seizures may have been and will mostly be staring off into space, licking his lips, weird tongue movements (I'm thinking lizard like-ewwwwww). 

Which made me pause and begin thinking about every single weird thing AJ has done since I've known him. 

And then I stopped.  Because his neurologist started telling me important things that I needed to pay attention to.  Like we are starting him on the anti-seizure medication Keppra and will have Diastat to use in an emergency situation...like if he ever has a seizure that lasts more than 5 minutes.

I left the appointment full of information, exhausted, and started blubbering as I was carrying my newly epileptic baby out of the clinic.  I put AJ in the car and bawled all the way home.  By the time I got home I was able to make phone calls without crying, which is my usual pattern, by the way.  Freak out, cry, cry, cry some more, snap out of it and move on to the fact, talk about other things, collapse in exhaustion.  I spoke to a new friend, who is very familiar with seizures, etc.  Our conversation calmed me and turned my attention to other things other than the fact my kid was just diagnosed with yet another "thing". My Mom brought dinner over for Jer and I and stayed with me until it was time for me to crawl in bed.  Thanks Mom!

AJ's school staff was absolutely wonderful this morning.  When I walked in this greeted me with a "Mommy Hug" and we chatted about anything specific I wanted them to do.  My directions: proceed as usual.   Of course I talked to the school nurse, filled out required paperwork, gave her AJ's new emergency medication and spent most of the morning on the phone, but that all comes with the territory and I was not afraid of it.  I had already spent too many seconds in the neuro's office trying to analyze every weird thing AJ has ever done.  Was it a seizure?  I don't know.  And I can't care.  I just can't.  Because I can't change it. 

I was (somehow) smart enough to figure out that AJ was not acting normal in the car last week.  That led to us finding out he's a kid that has seizures.  Let's treat the seizures with anti-seizure meds and keep an extra eye on him. Not a panicky eye.  Just an extra one.  Wouldn't that be nice if Mom's came with multiple eyes (in addition to the ones in the back of our heads)??

Today was our first real "regular" day.  A normal day in what I've deemed our "crazy normal".  I looked forward to getting up, taking AJ to school, having time to myself (which I filled with Starbucks and a bit of retail therapy), picking AJ up, coming home, eating lunch, jetting off to a PT/OT co-treatment, stopping at the store, and coming home.  It did my soul some good.

I hope this post does not come across as me stating I am honkey-doorey with my kid having seizures. Because I am not. It is NOT COOL. We don't need any more excitement over here. Trust me. But, what else am I supposed to do?  What are we supposed to do? 

How does one handle their child being deaf, having cerebral palsy, developmental delays, and now epilepsy, and muddling through her husband being diagnosed with MS?  I don't know.  How do I begin to digest whats happening with Jeremy while I need to support him and at the same time I need his support with whats going on with AJ?  How do I feel about losing my sitter because she accepted an awesome nursing position?  Devastated and ecstatic at the same time.  How do I feel about trying to sell our house in this market with everything else going on?  Freaked out, but I know it must be done.  How am I dealing with all this?  I have no idea. But I'm about to find out. 

While on the phone last night, I realized that while I have tried to cut a lot of time-wasters from my life, all of the issues in our life have become time-wasters. I'm afraid of so many things I've lost count.  Afraid and full of fear that more things will keep happening.  And while I've been struggling with this, yesterday happened.  More bad things.  But bad things don't mean I stop living.  Bad things put you into a survival mode.  I think I've been in survival mode way too long.  I need to live, not just survive.  We as a family need to live, not just survive.  I haven't figured out how, but its on my list of things I'm determined to do. 

I'm so worried about what might happen I'm not living in the NOW.  AJ's here now, and I'm so blessed to be his mother.  This morning his smiles and giggles all the way to school gave me such joy.   Despite all of his challenges in his short life so far, he continues to be my smiling, giggling, handsome litle man.  I'm wasting time.  Everything seemed to be clearer and more vibrant today (it reminded me of the Twilight book Breaking Dawn when Bella wakes up as a vampire and describes how everything is so clear and crisp).  I noticed things I hadn't before and appreciated those in my life so much more.  It felt a little weird, but I welcomed the fresh outlook.   While I was in a craft store, they played the song "Cherish" by Kool & The Gang.  While I would normally call the song cheesy and giggle that it was on, the lyrics spoke to me. 

And then I read the most recent post on No Peas which ended with this quote:

There is no time other than now. We are not, contrary to what we think, "going" anywhere. It will never be more rich in some other moment than in this one. Although we may imagine that some future moment will be more pleasant, or less, than this one, we can't really know. But whatever the future brings, it will not be what you expect, or what you think, and when it comes, it will be NOW too. It too will be a moment that can be very easily missed, just as easily missed as this one.

Right now, I'm going to bed.

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.

Binder Mayhem

The activity board was the first project for my "Keeping It All Straight" series.  Next?  Binders.

I pulled them all down and layed them out... 

Quickly realizing that this system

 is no longer working:

Currently, I have AJ's records sorted by Doctor/Clinic with divider tabs.  The binder above is Medical 2007-2009...and is overflowing. I need to come up with a better plan of action for his records. 

Clearly, one binder is not going to be sufficient.  I did start a 2010-____  binder, but I think I might split the specialists into two different binders, alphabetically. 

The other binders represent organizations we have/currently receive services from such as respite, Birth to 3, and United Cerebral Palsy, as well as his plethora of school information. 

I am a firm believer in keeping all of AJ's paperwork organized.  There are many times I've needed to reference something while on the phone with the insurance company, scheduling another appointment, or working with providing information on AJ where I've pulled a binder and flipped to the appropriate section.  They have really come in handy.  I also keep all of my previous calendars (since AJ arrived home) on the shelf in the office.  I've had to reference those quite a few times.

Stay tuned for Keeping It All Straight Part 2: Binders...

The Activity Board

Remember the activity board I made for AJ back in March? 

Well.... I finished it!

I couldn't resist teasing you!
Want to see MORE?!!

CLICK HERE.

Out for a Stroll

The other day I was driving through our old neighborhood.  It is essentially where Jeremy and I began our life together.  We lived there, got married there, you get the picture.  Our time there flashed through my head as I drove down the familiar streets and stopped in front of our old house. For some reason or another, we haven't been in the area in months.  Which is odd, since it is literally 7 minutes down the road. 

As I drove past the baseball field at the highschool I saw 1, then 2, then 3, then 4 boys out for a stroll with their Mom...who was, as all Mom's do, bringing up the rear and letting the boys do there thing.  At first I didn't realize she was with them.  As my eyes immediately jumped from boy to boy, walking, wheelchair, walking, wheelchair.  I suddenly felt my heart race and found myself quite distracted from my task at hand (driving).  While I wasn't gwaking, I certainly was looking. 

I have no idea if all 4 were her kiddos.  Although they did look alike and all looked to be about 7 years of age (just a guessimate).  Here was this Mom, just walking along.  The kids walking and racing their chairs between each other, laughing and giggling.  Such beauty.  Such normalcy. 

I felt the sudden urge to pull over, jump out of my car, and ask her a million questions.  I wanted to know that question most Special Needs Mom's cringe over...How do you do it?  Although, when I ask it, I think it has a totally different meaning than when a strangers asks me.  (My answer is, by the way, I don't know, we just do)  I wanted to know how this beauty that was before my eyes was created.  I wanted to ask here their stories (because there is always a story) and how far they have come from X,Y, and Z.  I wanted to talk to a woman who is in the same club that I am.  A Mom who just KNOWS. 

For me, being a Special Needs Mom is often isolating and incredibly lonely.  Don't get me wrong, its not all bad, but it is what it is. It is amazing to me how there are so many women on my kickball team, and I don't even know it.  Its a secret club, that really, needs absolutely no words.  We are instantly bonded by our differences and similarities.  Another stroke of beauty if you ask me.

I thought about those boys for the rest of that day.  I thought about how that beauty could be possible with a brother or sister for AJ and how sad and frustrated I become when thinking about expanding our family. I thought about how absolutely amazing I was in the right place at the right time to see such beauty. How I should have gotten out and talked to that Mom and her boys.  We could have shared beautiful stories and I would have left with a feeling of peace in my heart.  How do I know?  I always do when I meet or talk to another SN Mom.  Its just the way it is. 

When I'm in the area again, I know I will be looking for that scene of beauty.  Maybe, just maybe, I'll pull over this time...

Thurday's Book Corner

I bought this book a few months ago. I cannot, for the life of me, remember how I found out about it.  I started reading the other night and have found myself highlighting and writing notes in the margin.  I do not write in books, unless I have to (like in college) or unless its really good. 

THIS.BOOK.ROCKS.

You can read about it HERE from the book's website.  A brief summary of its contents is located on the books website as well. 

Its candid.  Reality.  Most importantly, its something Jeremy and I can relate to. Often our conversations consist of nothing but AJ.  Me to Jer: How was your day? Jer: Good.  Jer: How was AJ's day?  Me: Well, blah blah blah blah blah....  Every move you make revolves around this littler person.  Go ahead.  Tell me it shouldn't be.  Then I'll tell you to walk our journey and then see how you prioritze your life.

Married with a Special Needs Child Is Different Than Being Married with a Typical Child.  Not that I am downplaying the everyday stressers of being a parent.  I am most certainly not.  But remember what it was like for the first 8 weeks of your baby's life?  Constantly "ON"?  That's what this is like.  The stress doesn't just go away when the kids get older, in most cases, it never goes away. 

This book is so awesome, I don't even have words.  It has mini-stories and tidbits from REAL SN parents and is written by two fabulous people who, God Bless Them, chose to be bold and candid with this book. It talks about the grief, the anger, the self-pity that turns to self-compassion, ways you can improve your relationship, stay connected, and most of all, it spells out the REALITY of having a special needs child. I would highly recommend this book to other SN parents, and to those who know other SN parents, or want to know the truth. 

Just because your child is doing "ok" or even thriving, doesn't mean your relationship with your spouse is ok too.  No people, I'm not sending up red flairs or trying to tell anyone anything, so relax.  What I am saying is that your child becomes your priority in such an intense, raw way, its hard to explain . Part of what makes this journey difficult is that it is the road less traveled.  Less and less things relatable to those around us. 

It often takes years to adjust to having a special needs child.  I didn't know that...until I read this book.  I thought we were the only parents on the planet that still had moments.  While there is an incredible amount of stress, it doesn't make us love AJ any less, by any means.  The "Us" gets lost in the "He".  You doggie paddle your way to the surface and do the best you can.  Its the nature of the beast, I think.

I had a hard time with a therapist who had worked with AJ in the past.  It angered me that this therapist could tell me her experience with children like AJ in her line of work and sit there and pretend like she knew how I was feeling, when I knew darn well she had no idea.  She went home to her kids that night, who were all able to say "Hi Mom" and did all the typical things that families do. 

Eventually I got past this, but it is a prime example of how you are constantly reminded that your journey is different.  Yes, yes.  Everyone is an individual, we should all have goals and achievements to strive for and all of our journeys should be different.  But come on.  Our world is full of conformity.  No one wants to be the last kid when your are picking teams for kickball.  We all want to be included and understood. 

I ordered my book from amazon.com.  The other neat thing on Amazon is you can take a peak inside the book HERE. 

I think I like this new "weekly-themed" post. 

Did I mention this book is amazing?!

Keeping It All Straight...Part 1

A lot of people ask me (us) how we keep track of everything AJ has going on.  I decided I'll do a "how we do it" post, in parts. 

Part 1:

The Activity Board

A while back I figured out I needed to write down everything that we were working on with AJ.  If it stays in my head, it gets jumbled and honestly, way overwhelming.  I started writing on a small white erase board.  I split up his goals under headers for each area.  It didn't take long for the white board to become crowded, so I've been brainstorming.  Let it be known the my first 3 attempts were fails! 

Here is my new activity board for AJ.

Another closer shot.

Cool, huh?

Here is the before:

I {literally} found this frame in the back of our office/guest room/junk room closet.  Pretty sad I had this and didn't even know it.  Anyhow it was perfect.  I took the glass and cardboard backer out and sprayer the frame black.  I had some awesome bubble pattern material so I used that where a picture would go, and reassembled.  I write on the glass with a dry-erase marker.  Works like a charm!  I think its prettier than a white board to, don't you? Now I just need to attach heavy duty ribbon loops to the top and get some decorative knobs to screw into the wall to mount in the hall.

Total Cost: FREE

Stay Tuned for Part 2: Binders