She Said It...Again.

Earlier this week I took AJ to see his physical therapist. You know, the one I schmooze all over this entire blog?  The one who discharged AJ a year ago and said, “He doesn’t need me”... 

Well, she said it…again.

I took him in for a functional screen, which functions as a quick peek at AJ to see how he looks, feels, and moves. Translation: Mommy needed confirmation that's doing just fine without therapy.  Flying solo freaks me out sometimes.

We haven’t been to his therapy clinic in a year and he still knew exactly where he was going.  Upon entering the gym, he promptly pulled out the platform swing from under one of the mat tables.  The difference, when his PT said, “No, sorry bud, we don’t have time today…he moved on to other things”.  My.big.boy.  
She was simultaneously thrilled and saddened with his status.  Thrilled because, he.looks.great.  Saddened because that means she doesn’t get to see/treat him. 

We discussed the idea of a therapy/service dog for AJ, which is something Jeremy and I have been considering for quite some time.  If anyone was going to give it to me straight, its going to be his PT. 

While I was concerned about his spine, she reassured me that his functional scoliosis has not returned.  His back looks straight.  He.looks.great.

The one issue we both agreed on, his left foot/leg.  Oh boy.  Child, child, child.  The Botox is not lasting long enough.  We are researching phenol injections, you can read about them here.  They last longer, as in 6 months, but there is a catch.  At least for AJ.  You have to be under for the 15-20 minute procedure.  AJ and anesthesia are not friends.  And, he can’t have the stuff that puts you out for just a little bit.  Oy vey.  So, we’ll be digging into that a little bit more in combination with his PT and his physical medicine doctor. 

Botox is still a great option, except that insurance only covers it every 3 months.  AJ’s wore off I’d say in 4-6 weeks this last round.  And that was 4, count ‘em, FOUR injections.  Lots to talk about and discuss. 

She also recommended that we have his stop wearing his AFO on that foot.  Hallelujah.  He’s been walking worse with it on than without.  I’ve been taping his foot and hip with kinescio tape, which has helped tremendously.  Now, if I could just get AJ to stop pulling off the foot tape.  Dude, the stuff is $24 bucks a roll.  We’ll get there.  He giggles when I pull the tape out and stands perfectly straight for me while I apply it to his hip, and somehow relaxes his foot enough for me to tape from the in-step around to the outside ankle.  It could be worse.  He’s such a trooper.

We’re also going to bring out the ‘ol night splint again.  We’re only going to come in on the splint about 5 degrees, so he can stretch out those muscles. 

“He doesn’t need me”. 

Five years of therapy after therapy after therapy and he’s finally free AND thriving.

WAHOO!

Removing the "I"

Easy.  You know, it’s that word that everyone says in phrases. 

I wish ____ was easier.

I just wish it was easy.
Why can’t it be easy.
It was so easy for so-and-so. 

I think it is human nature for us not just desire, but take the easy route.  To want the easy route.  Humans-well, let’s face it.  We are sorta lazy.  Most of us do not need to hunt and kill our food.  We’ve got comfortable places to call home and lay our heads to sleep.  We’ve got the easy.  But yet, we always want it easier.

A friend and I were recently having a conversation when she shared that she would like things to be easier for me.  Bless.her.heart. If you would have asked me a few years ago, I would have jumped all over that.  Yep, I want it to be easier too. 

But that is not my answer today. 

The conversation was in regards to AJ being non-verbal.  I am not going to lie-it is difficult.  It was and has been tremendously difficult.

But it is my normal. 

Sidebar: What in blue blazes is normal anyways?!

In a broad definition, it is my easy.  Because it is what I know.  I don’t know any different.  I know my story, my family’s story, my son’s story.  Those are normal stories to me.  I am less judgmental of other’s easy. 

AJ has and is making tremendous strides with his communication.  As in, every day in the last week he’s made my jaw drop to the ground with something new and exciting.  I mean seriously kiddo.  Rockstar.  Did it sadden me AJ wasn’t talking?  Yes.  Deeply.  Does it sadden me AJ isn’t talking?  Yes.  Sometimes. 

But who am I to say that AJ speaking would make life 100% easier and better.  His life or my life? Life is pretty good with AJ making progress in his communication.  He has what I call a knuckle sandwich of language.  Lack of language exposure early in life, hearing loss, speech & language delay, apraxia.  Basically, it’s a big hoagie of obstacles.  But, AJ can totally overcome it.  In his way.  I think it is often difficult for those looking in to understand that AJ has many, many challenges before him.  When one area soars, another falters.  That’s just the name of the game.  And you plug along.

It took a really long time to remove the “I” from AJ.  Meaning, what I wanted for him. My plan.  My way.  My convenience.  My wants. We wanted to give him the very best life possible.  He didn’t argue. When we said, you’re going to do this, this, this and this because we want you to… He countered with, here’s how this going to go.  Jeremy wanted a child who played sports.  Lots of sports.  He wanted an ESPN buddy and Brew Crew cheering mate.  I thought I didn’t want much.  Just the mom experience with a healthy child so I could follow everyone else’s lead and do the normal mom things.  AJ challenged both of us.  Our dreams were not shattered, they were simply altered.

It was not, by any means easy to let go of our own selfish wants and desires.  But, its not about us.  It’s about AJ.  Looking back, spending summers in therapy appointments yielded no outside therapy for my almost 7 year old.  Spending hours and hours putting his implants back on and encouraging him to listen and enjoy the world around him yielded a very inquisitive little boy who plays with his ability to hear and takes his coils off when he wants to ignore me, just like any other implanted kiddo.  Caving in and moving forward with PECS has lead to AJ navigating the iPad on his own, making choices, increased vocalizations, and clear communication.  Waiting for him to naturally fall into loving sports is happening before our very eyes.

“I” really can’t ask for much more.  Right this second, I’m ok with AJ not talking.  Because he speaks in so many other ways.  And functional ways.  Would I love (beyond the moon love) to hear his sweet voice?  Absolutely.  But for now, he tells me things in his way.  Just because he isn’t talking now doesn’t mean I think he never will.  It doesn’t mean we stop working on speech. It doesn’t mean we stop working on anything. But, I hear his vocalizations changing.  He’s getting closer.  And we’ll keep adjusting to the new normal as needed. 

We’ll just keep the “I” at bay.

Intentional Success

AJ's IEP was this past week.  It was the BEST.IEP.EVER. It was also the fastest, coming in at 2 hours exactly.  I've mentioned before that this year has been incredible for AJ as far as school is concerned.  He has made so many gains.... I'm bursting with pride just thinking about it.

Here are the highlights:

AJ has taken to his iPad with a force to be reckoned with.  He is able to turn it on, swipe the screen, choose his iCommunicate communication app, or his sensory app board.  He knows the home button will return him to the home screen.  He exercises this skill a little too much.   He chooses from his "Basic Needs" board with great success.  He knows his picture schedules very, very well.  This has been key this year.  For example, his Monday board has one picture at a time, where he swipes to see what's next.  What is amazing is that we have decreased the number of pictures quite a bit.  At the beginning of the year his school day boards all started the same: picture of his school, followed by his assistant, the hallway, the elevator, another hallway, the entry to a specific room, and the room itself.  Now, his school day boards start this way: picture of his school, his assistant, the room that is his destination.  A goal for app use was established as well, since AJ likes to flip through apps like he's a fish.  At his IEP it was discussed that while it drives us all batty sometimes, we think its AJ enjoying the "power" of being able to control the iPad and flip to whatever he wants.  He's such a smart kid.

The most awesome iPad related gain?  AJ is spontaneously seeking out his iPad to try and tell us what he wants.  HUGE!!!  He's understanding that in some situations he's not getting his point across.  So instead of throwing a tantrum and getting uber frustrated, he's using his communicate tool-independently.  The first time he did it at home Jer and I about jumped out of our seats!

AJ is matching pictures to pictures in a board book.  We are beginning to expand this. He is able to trace the letters of his name.  He can trace a vertical and a horizontal line.  He can cut a piece of paper independently using a tabletop scissors.  He loves to cut things out.  This is quite a change from earlier in the year and even last year.  Our goal is to have him engage his left hand/arm to move the paper himself instead of an adult guiding the paper.  AJ is coloring (wahoo!) with great success.  He doesn't do well with just a blank sheet of paper, but does well with a target, such as a coloring sheet or a shape drawn on the paper.  This is HUGE, as he has never been one for coloring.

AJ is doing puzzles with success!  His special education teacher came up with the great idea to color the puzzles piece inserts black to give AJ a color different between the wood puzzle board and the inserts.  It's worked really, really well.

Each year his school PT times him walking the same distance in one particular area of his school.  This year, he dropped his time by 24 seconds.  He's getting faster!  He's also participating like a champ in SDPE (Specially Designed Physical Education).  He's open to anything they throw at him (pun intended).  For example, at the beginning of the year, he was reluctant to try new things.  Now, he'll explore it and pays much more attention to the environment and kids around him.  He is actively participating.  Seriously.  I'm bursty.

A few weeks ago a taekwando school came into the gym classes and worked with the kids.  Apparently, AJ was all.about.it.  He "got it" from the get-go.  They were holding their hands a couple feet off the ground and he was kicking all on his own.  You better believe we're checking into this for him!!!  His school OT is really working on his pre-writing skills and his fine-motor skills.  He has come so far and is open and willing to pretty much anything she presents to him.  She's also really good at finding things that she knows AJ will like.

AJ has become more and more vocal.  His vocal play and imitation has sky-rocketed and we are honoring every sound and encouraging him as much as we can to keep it up!  He's also doing this at school, which is super exciting to see him doing it in both environments. He's keeping both his implants on during auditory therapy, which is HUMUNGO!  Yes I made that word up.  He still prefers the right, but we are making some great progress with returning to bilateral.  I would say 5% of the time he'll "fight" and not want the left on.  That's only 5%.  He's been putting on his own coils for quite a while now (wahoo!), but now he's trying with the left exclusively.  It is amazing to see him "playing around" with his implants.  He takes the coils off and on, realizing the difference between when they are on and off.  He's no longer ripping his implants off or chewing them.  Hallelujah.  Seriously.

We have a follow-up this week at his CI Clinic-as he's been implanted for 4 yrs on the right.  I don't know how that happened.  I'm looking forward to him showing his audis his amazing progress.  And for the first time ever, I am not stressed about booth testing.

AJ needs a brother or sister.  Oh, wait.  That wasn't in the IEP ;)  But its what I was thinking during the peer portion of our meeting.  AJ learns best when he instruction is 1:1 and he has 2:1 assistance.  Meaning, the teacher, and his assistant helping/modeling/prompting him.  However, there has been a huge shift in his interaction with his peers.  As in, its exploded!  He loves to be around his peers. He's seeking them out.  He's getting better at acknowledging them with a high-five.  This is the blanket action we all do to greet him.  He's really good at doing it with adults, but he needs a bit of prompting to do it with his little friends.

AJ's regular education teacher sat in on AJ's entire IEP.  I wanted to squeeze her.  AJ is rarely in his classroom, so I was unsure what she would have to say.  But she opened my eyes to the magic of my little boy.  AJ has a desk in her room-he has all year.  I took a picture of it at the beginning of the year in awe that my boy was a first grader.  With a desk.  Sigh.  Anyhow, she shared that even though AJ isn't in the classroom, the kids have NOT forgotten about him.  She hears conversations between the kids, "Did you see AJ today?!", "I saw AJ on the way to lunch"!  I just about fainted from the cuteness and kindness of these children.  They look forward to seeing him and guard his desk, saying, "That's AJ's desk".  I just.  We could not have asked for a better school environment.  He went to hug one of the preschool girls the other day.  I just about died from the sweetness.  They are his little army love.  I love it.

AJ's been involved in a peer social group for the last few months with some of his male buddies.  They all just radiate cuteness.  This has really helped him make eye contact with his peers, engage, and learn social skills.  It has transferred into other areas, such as engaging his peers throughout his school day.  Currently, AJ eats lunch in the special education room with a few of his friends.  The goal for next year will be to start him in that environment again (for consistency) and then transition him back into the lunchroom with all of his peers.  Apparently, his friends have asked to have him back at lunch with them.  We miss him!  Tear.  At his CI follow-up well be figuring out if we can map a specific program for the lunchroom environment so that he can be with all his peers.  It is now appropriate for AJ to be with his friends on a more consistent basis.

He's bored here at home.  Often.  I am not as fun as a squealing 7 year old girl, apparently.  Or his other buddies.  I am hoping to set up a playgroup with his buddies over the summer.

Speaking of summer-another shocking revelation at his IEP.  AJ only qualified for auditory services with ESY this year.  Holy buckets.  I had to have the staff clarify about three times to really grasp this concept.  Our school district offers regular summer school-what I call fun summer school-which AJ will be participating in.  They have a special needs component which will allow us to sign him up for some fun sessions.  His auditory will be built into that time. I am so excited I can hardly stand it.  No more summer ESY with him and a teacher in a room.  He'll be with other kiddos.  None of this was appropriate last summer, nor in years past.  He wasn't ready.  But boy oh boy is he ready now.  To know that the only area they see regression possible in is auditory, that means my little boy is being successful.

Another goal for AJ is to attend to books for a certain period of time.  Often, AJ flips through books like he flips through apps on his iPad.  It's not that he doesn't like books, because he does, but its a crapshoot as to whether or not he'll attend or not.  Some days he's really "on", some days he's "not".

A few months ago I attended a seminar called "Lights, Camera, Autism".  It was awesome.  And not just for autism. I learned a lot about how to use technology to help AJ.  I was proud to realize we were already ahead of the game!  One piece that I really took away was that the structured "frame" of an iPad (or other screened device) really helps frame and concentrate his brain.  His school SLP asked me for videos of each of us waving and saying "Hi to AJ".  From that format, AJ has learned to sign "Mommy", "Daddy", and "dog".  Yeah. Pretty incredible.  Just this week he produced the modified sign we created for him for "all done" (tapping his hands on the table or his lap).  Yesterday he mastered "bath".  Next up- "sleep" and "cat".  He loves the videos of our dog and cat that I took.  The dog barks, the cat meows up a storm.  He squeals with delight when he sees those videos at school during speech time.  I've noticed him reacting differently to the dog and cat here at home as well.  He's more aware, seeks them out, and pets them.  Framing his world has been very, very successful.

If you are interested in learning about using technology to help your kiddo, check out the Lights, Camera Autism book.

The one area that is still grey and often frustrating is AJ's behavior.  We've figured out that he's displaying these behaviors for attention.  And, because he has no other way to express his emotion. When he's super excited his he'll scratch and pull hair. When he's mad he'll scratch, bite, pinch.  Sigh.  One thing that has helped decrease the behavior is putting words to his actions.  "Oh your mad, I know you are mad!  You.are.mad!".  I'd say that this is helping about 75% of the time.  We'll keep at it.  I'm also brainstorming with his school SLP and OT as to how we can teach him emotions.  I would be ecstatic if we could teach him happy and mad for starters.  AJ doesn't understand those cute/creepy posters with the faces of emotions.  I hope we figure something out soon.

AJ can open and walk out both our front screen door and the back screen door.  He's so independent now. One of his IEP goals is to independently wash his hands.  He's 75% there.  Little skills like this all lead to his successful independence as he gets older.  You wouldn't think it matters, but oh it does.  He can get fully undressed on his own now.  He gets in and out of the car without assistance.  He walks down the stairs without assistance, holding the railing, independently-and is much, much faster.  He understands verbal prompts only, such as: stand up, sit down, pick it up, where's your coat, let's go, stop, get down, I could go on.  Isn't that awesome that I could go on!

The biggest idea we discussed was how AJ is displaying a copious amount of intent.  With everything he does, there is intent behind it.  No longer is he just wandering through his days.  The little boy who wasn't supposed to walk or communicate successfully-IS.  He has expectations, wants, needs, intention, and happiness in his life.  I don't think I could ask for much more than that.

GO AJ!

Raw

Three weeks ago we were sitting in church listening to the second talk in our church's "Suffering: You Are Not Alone" series.  This series was incredible right off the bat.  Let.me.tell.you.  But this particular week was eye opening for me on two levels.

Did you know that we moralize and minimize suffering?  It's all relative, right?  I find myself judgemental when I hear someone else moralizing another's suffering.

Well, at least its not as bad as Jackie's story.  
Or Ken's life.  
Or, hey, did you hear about so-and-so?  Now that's tragic.  

And the minimizing:

There is always someone else worse off than you are.
There are starving children in ________ (unfortunately, there is a choice of countries here).
The chemo's really not that bad.
So you lost your brother.  It's not like you lost your wife or child.
Oh, you'll be fine.

Or my favorite....absolute SILENCE.  If I say nothing, it doesn't exist.  

I sat, mulling over these approaches to suffering, when suddenly our Pastor asked for a show of hands as to how many people have been diagnosed with a terminal or chronic illness.

My.husband.raised.his.hand.

MY HUSBAND.

Not the stranger two pews over. Not Nancy's third husband. Not so-and-so's father.

MY HUSBAND.

I placed my hand on his lap as he raised his hand.  As his hand raised, my tears began to fall.  And fall. And fall. And fall.

{For those of you who are new readers, Jeremy was diagnosed with MS just short of 3 years ago}

I am blessed, beyond belief, to have a stubborn husband.  Without his steadfast stubbornness to kick diabetes and MS in the rear, I think I'd have a wet towel schlepping around this house.  Jeremy does not schlep.  The journey to his diagnosis was a rollercoaster.  A wasted ER visit, countless tests, a spinal tap, IV treatments, failed medications and too many unknowns to count.

I sat, as my husband had a needle shoved in between his spine and awed at his ability to be logical and stay still with all the unknowns before us.  I turned my head to fight my tears.  I drove many miles in tears, praying to God that something would change and that this was not happening. I held his hand and gave him quiet assurance that we would handle whatever was to come.  I answered the doctor's questions when he could not. I watched him attend his son's birthday party, clearly in the clouds, realizing a year later that he wasn't able to remember the event.  I watched him go through two agonizing trials with different medications, both of which had more side effects than positive effects.  I watched his anxiousness before MRI appointments and slightly lose his balance on rough days.  I learned to read his symptoms with him speaking a word.  He downplayed everything to everyone else, but as the other half of this crazy partnership, I knew.

We are so incredibly lucky that his MS is slow-progressing.  His medication is working.  We take things one step at a time and pray.  A lot.  We pray in thankgiving.  We pray in need.  We pray for certainty and guidance.  We pray for blessings.

But in that pew, I was faced with the raw- and it was rawwwwwwwww- reality that my husband has multiple sclerosis.

And there is nothing I can do about it.

Me.  The doer.  The fixer of all things because I am the wife, mother, woman.  This.is.what.we.do. As much as we are blessed and lucky that things are stable, it doesn't take away the bold reality that he has MS.  We're a little spoiled by his success with the disease.  It makes it easy to forget about the disease's possibilities. In that moment, I wanted to curl up next to him in our bed at home and lay for days.  Just.be.  In all of this life's craziness, I wanted to just.be.  And use a wand from Harry Potter to create a bubble charm so that I could protect us from further craziness.

I spent the next few days emotionally exhausted and thankful for the jarring reminder.  I think I truly needed that.  We are living proof that this is doable.  We are thriving in the midst of suffering.  We both give each other a learning curve and do our best to respect each other as we plod through this diagnosis.  I try not to minimize when talking to others.  I try really hard.  I don't know how he feels, physically or how he feels completely on an emotional level.  Men are hard to crack in that department.  I do know that he has shown more strength and grace than anyone I've ever met.  I love him more than I ever could have imagined when we met 16 years ago.  Yeah, I'm all mushy.  Deal with it.

Sometimes we all need to be faced with that raw reality.  Jeremy has chosen to thrive in the midst of his suffering.  I admire him and am proud to call him my husband.  He was bold enough to share his story and the choices he's made in the face of chaos.  You can view his story HERE.
{If you do not want to watch the whole thing, start at the beginning and watch through 6:15 and the second part from 21:15 through 23:00}

“’For my thoughts are not your thoughts, neither are your 

ways my ways,’ declares the Lord. ‘As the heavens are 

higher than the earth, so are my ways higher than your 

ways and my thoughts than your thoughts.’”

Isaiah 55:8-9

Let's Get Physical

You know, this school year has been very, very interesting.  Interesting and full of surprises, causing our family life to become extremely flexible.  AJ has had a rough year thus far physically.  He's doing INCREDIBLE in school-as in this is the best year he's ever had!  Way to go AJ!  But, as we special needs parents know, when one area gains, another area gets jealous, throws a pity party and stomps it's feet.  Well, not really-but you know what I mean.  When one area sees gains something else regresses a bit.

We knew his body would go through a large growth spurt between the ages of 4 and 7.  Oh, that couldn't have been more accurate.  His school schedule this year has him attending 5 hours a day.  His start time, which was moved to a later time in the first place, I know tell people who ask, "He starts at X o'clock, or whenever he wakes up".  I have cancelled, rescheduled, and cancelled again so many appointments, plans with friends, and just plans in general that I've lost count.  And honestly, I'm just used to it.  If you would have talked to me 4 years ago, I would have been angry at myself and the world for something not working out.  But, I've learned that life needs to be flexible, and if I have to cancel, I have to cancel.

He has fallen asleep at school a lot this year.  He's had several seizures cycles, illnesses, and days where he is just too weak to function.  We have had two seizure medication changes already. His sleep his been horrid and without pattern.  If you would have asked me a week ago when the last time was that he slept through the night, I couldn't have told you.  He was so tired, yet couldn't sleep.  This caused him to get bored, and agitated, causing him to continually take his pajama bottoms and pull-up off and pee on his bed.  Several times a night.  Sigh.  

As a parent, I feel helpless.  Because for AJ, growing is NOT fun. Several weeks ago I walked into school to pick him up and was lead to one of his classrooms by his assistant.  He was sitting on the floor and refused to put his coat on.  Anytime we'd try, he'd scream out in pain.  Anytime we tried to have him stand up, he's scream in pain.  Another day, I walked in to find him sitting on the large rug by the school office.  He was in so much pain standing, he wouldn't put his left leg down and bear weight on it.  I've had several chats with his school staff about his aggression.  He has no other way to tell us he's in pain.  

Why so much pain?  Because he has cerebral palsy.  When he grows, his bone grow, but his muscles don't follow as fast because the brain isn't sending the message that they need to stretch.  Insert PAIN.  I'm taking him for botox injections regularly now.  They are supposed to last 3 months, but with AJ's super-hyper metabolism we are seeing it wear off sooner.  He had his last injections (4) in his left leg three weeks ago.  

That weekend he spent an entire two days in bed with high fevers and a wicked cough. Have you met AJ? He's like a superball.  This is rare. I kept him home from school that Monday and even Tuesday.  He felt better on Tuesday, but not well enough to make it through an entire day of school.  I thought we'd take a drive, just to get out of the house.  Well, the botox had kicked in-add that to his general tiredness and he fell face first onto our driveway.  He busted his lip and his top three teeth pretty good.  

We spent three hours in the ER-where they did absolutely nothing-and headed up to see his dentist in the dental clinic.  He has subluxation.  We are now a week out from the incident and still watching his teeth.  He's on a soft foods diet until further notice-which has been interesting to say the least-and those teeth are wiggly.  We're doing our best to avoid infection and tooth death.  I'm thankful they are baby teeth!  Our biggest challenge?  Well, two challenges.  Getting the blasted oral antiseptic on his teeth and limiting his oral stimulation/bite & chew therapy toys.  Really hard to do with a child that gets so much organization from his MOUTH!

Two days later he spiked another fever and his cough was considerable worse, so we headed to the pediatrician.  Viral bronchitis.  Viral won't respond to antibiotics-so, and I quote, "Just let it run its course."

Wonderful.  Thankfully, AJ loves honey, steamy bathrooms, and lots of Vicks.    

This was all last week.  He's feeling better, with his cough just kicking in around dinner time.  We're on Spring Break this week and I'm so thankful we didn't have plans to travel.  Don't get me wrong, I'd love to be somewhere warm, but some down time was definitely needed.  The snow is melted and the sun is shining!     

As much as I am in disbelief AJ will be 7 soon, I'm welcoming that age with open arms for my little guy as far as his body is concerned.  He's such a trooper.  We keep doing the usual regimen, taping his foot and hip, deep tissue massage, vestibular activities, and warm water swimming.  I'm a stubborn mama, fighting to keep him away from surgery.  We can do it!

One

Several month ago I attended an amazing event called Women of Faith.  It was my first time attending, and I wasn't sure what to expect.  While the entire experience as a whole was amazing, there was one particular speaker who suction-cupped my heart from the first word that came out of her mouth.

I listened to a group of women who talked about things like Moses being a basket case.  Then a bench warmer.  Then a bushwhacker.  I learned about Birdbath Bob and his crazy shenanigans.  I learned about how things would change if I just.did.what.I.could.  I listened to the amazing Amy Grant's voice soar over our miseries.  Her album was the first CD I ever bought (OOOHHH) and she's still amazing as ever.

And then, Brenda Warner danced across the stage and began sharing her story.

Have you ever listened to a story and felt your stomach tie up in knots, just knowing the story is about to go south at any moment?  Yep-I was feelin' the knots.

If you haven't heard her story-you should.  Really.  In short, her neuro-typical son suffered brain trauma and became blind after slipping out of  her husband's arms after a bath.  Her story is rooted in so much more than that, but its her story to tell-not mine.  Read her book.  Or find her on the street.  Seriously, you should.

My tears began when she said the well-baby check visit was the only appointment she didn't mind....because that was normal and every other mom was taking their child to that appointment.  She shared her life story and how that changed with certain phone calls, her son's birth, her parents deaths, and her marriage to Kurt Warner.

She went on and the suction on my heart became so tight, I lost it.  As in, an almost visceral reaction.  I.could.not.breathe.  I'm pretty sure I was beginning to hyperventilate while trying (with horrible failure) to hold myself together.  Pfff.  Yeah, you look like a bawling moron because you are just that.  Not that moron part, but the bawling part.  My sweet friends, sitting next to me and in front of me, offered hands and squeezes of comfort and love-which made me cry even harder.  This journey has been hard, and it is rare for me to have, much less be forced, to meddle in its rawness.

Her son is now grown and lives in a group home, on his own.  And is thriving.  How do I know?  Because she brought him out at the end of her story.  She bragged on him and shared his amazing personality and sense of humor.  Most of all, his perspective to and for life was refreshing.  He lived.  He thrived. He had a future.  She did it.  Through all the struggle, heartache, crappy phone calls, and her journey with trusting God, she.did.it.

At some point, I felt myself shaking and ran for the bathroom.  You know, whoever decided it was a good idea to put thousands of emotion women in an area with stairs in the dark was just not thinking!  After I did some forced deep breathing and tried to focus my attention on the writing contest poster attached to the stall door, I walked back through the concourse to my section.  Two friends stopped me just outside and said, "You have to come and see this, Zach (Brenda's son) is singing with Amy Grant.  I stopped dead in my tracks.  The voice of a modern Joni Mitchell and this amazing young man were too much.  I stood with them for a few minutes on the platform to our section, choking back more tears and fighting that visceral feeling again.

I've thought of Brenda a lot since then.  I bought her book, but I prefer her personal delivery much more.  Raising AJ has been a constant flight or fight choice.  I've always chosen fight.  Doing so numbs you a bit.  You just do.  And process your emotions later.  Sometimes they creep in, like in the heat of the moment, but the flight kicks in and the emotions are tucked away again. Listening to Brenda's story forced me into a place I don't go.  Really, I don't.  What better place to dig in than in the middle of thousands of women.  Fantastic. Honestly, I didn't care, but now that I think about it, its humorous.

Sometimes I find it hard to relate to other mothers.  Ok, a lot of times.  Gone is the jealousy, bitterness, and anger toward them for their normal-or whatever I assumed their/normal in general to be.  Here was this complete stranger, hundreds of feet away from me and she's got a suction cup on my heart.  I kept nodding and bawling, nodding and bawling.  She got it.  She got me.  She got the struggle.  She got the triumph.  She got the joy.  She got the humbleness. She.got.it.all.

Today, I was sitting in the neurologist's office with AJ as the nurse was asking me the questions she asks me each time were there.  I stopped dead in my tracks with her last question.  Any other specialists?  I had no answer.  I ran through my mental Rolodex of "AJ Providers" and nothing came up.  I said, "No.  Just you."

One.

Suddenly, having a pediatrician and just the neurologist added to the mix made me feel like every other mom on the planet.  I felt liberated and ecstatic for my little boy.  Oh wait, there is another!  The dentist.  Oh wait! He's normal too!!! We are down to one.  One extra.  And you know what?  One extra is just like that well-baby check visit.  I didn't mind.

I hope one day to meet Brenda.  In fact, I imagine us having lunch, reading our memoirs together, and crying together.  Sappy I know.  But not everyone has the ability to suction cup a heart.  At least not mine.

Breathing

Last night, six pairs of snow-caked black boots stood in my living room.  The flashing lights outside our house at 10pm notified the whole neighborhood that we had company.

After fighting sleep for three hours, I began prepping the "I don't know what else to do" meal for AJ.  Warm oatmeal made with milk instead of water (every calorie helps) and some juice.

AJ took a drink of juice, doubled over, and began to choke.  And.I.mean.choke.  He got it up, whatever it, was, and then...is airway was blocked and he turned a not-so-nice color.

By the time the dispatch finished asking me 3,485 questions, she then transferred me to our local department where I repeated the same information.  He was already back to semi-normal by the time my phone conversation was ending. She was telling me what to do: don't give him anything to eat or drink, if he stops breathing or vomits, turn him on his side, put away family pets, have the door open and the light on, and someone to greet the emergency team when they arrive....  Sister, I got this.  Really.  Who else do you know can do all that while on the phone with 911 and get dressed at the same time?

The team attempted to check AJ's oxygen level, which is always humorous.  He gingerly screams and they fall more and more in love with him.  Jeremy gives his nurse/Dad report. As the team left, I hear he's so cute multiple times.  When they leave, I fight the urge to hug the snot out of them.  I have a deep, deep appreciation for our emergency responders. Let me tell you....

AJ was giggling as they walked out the door.  Jeremy and I?  After putting AJ to bed,  Retreated to our laptops for a good half an hour and then continued to vegetate watching our DVR'ed shows.  It is hard to come down from so much adrenaline.

While our child possesses the amazing capability of bouncing back from such things, we aren't quite as fast.  Us, being late with something.  Imagine that.

I lost my breath walking back to my car after dropping him off at school.  I slept through my alarm and picked him up late.  When we got home, I parked the car and sat with my eyes closed for I don't know how long.  I was just thankful that today AJ wasn't in a manic panic to get out of the car right away.  My entire being shut down.  When I opened my eyes, it took every fiber of my being to crawl out of that car.  Does that sound dramatic?  Yes.  Was it?  Yes.  It is hard to keep on keeping on sometimes.  The afternoon routine commenced as usual, except my little man was tired.  I could tell in his sweet, brown droopy eyes.

After his bath we made our way downstairs to the playroom.  He walked a half-mile on the treadmill.  He swung in two of his three swings.  And then-he cuddled with his mama.  I cannot tell you how precious it feels to have my son find comfort-in me.  My breathing relaxed.  So did his.  How can such a tiny soul produce such strength?

This mish-mosh of days is another example of how I am solid in my commitment to slow down.  Sloooo-ooooww Doowwwn.  Every life is precious.  My son's life is precious.  And I will never get these sweet moments with him back.  There is no repeat in life.  I won't say his life flashed before my eyes last night, because that would be super dramatic and over the top.  But-there will always be another concert, another game, another movie, another assignment, another tangible thing to fling ourselves to.  There will always be dishes, laundry, and a to-do-list for me to complete.

I keep looking at my sweet boy and wondering how on earth he has gotten so big.  How has he made so much progress?  How has he overcome so much and still fills his life and other's lives with so.much.joy?  Last night scared the whoppers out of me.  But-He started breathing again.

If he can do it, so can I.

Five Years to Healing

I remember that moment like it was yesterday.  I walked up what seemed to be never-ending stairs and saw a bright, sunlit space filled with bambinos.  I hadn't even noticed the rooms off to the right or to the left.  My broken Spanish got the point across that we were looking for Sylvia, our son's caregiver.

She came flitting by us, flashing her sweet smile we had seen before-only in pictures.  She motioned for us to follow her into the room on the right.  We stood in the doorway, between the light and the dark room she had walked into.  She walked to the row of bassinets on the back wall and picked up a tiny, precious child.  We backed into the hallway as she walked towards us.  At first, I thought he was wrong child.  And then-I saw his sweet, sleepy face.

Sylvia handed him to me with gentle care.  I wrapped him in my arms and closed my eyes.  AJ wrapped his fragile little fingers around my woven purse strap.  He snuggled into my chest.  I didn't want to move.  Neither did my son.  I opened my eyes to see my husband beaming with pride.  I handed him his son and instantly fell in love with him all over again.  There is something about men and their children that stirs this incredible emotional love inside those of us who love them.

For a very, very long time I was unable to recall or share memories such as the one above.  The circumstances, wrong-doing, etc. that occurred when we adopted deeply overshadowed some very sweet memories.  Everything in relation to our adoption became negative.  Everything was wrong.  I couldn't talk about the adoption without including all the things that were wrong.  I was a sad, sad person.

Yet at the center of it, was this precious little boy.  This human, living soul who was in the midst of all this pain and anger.  I've always been able to, somehow, compartmentalize what happened with the adoption and my love and caring for AJ.  A blessing, without a doubt.  But it was still an unfair perspective, to both of us.

It took five solid years, almost to the day, for me to heal those wounds.  It was a bright and sunny morning in August.  I found myself is a sea of tears standing during the music portion of our church service.  No one noticed me, bawling upright.  It was a clear moment.  I.just.let.it.go.  And I haven't looked back.

I can recall many, many, many conversations with myself over this very issue.  My heart wasn't healed.  I wanted it to be, but it just wasn't time.  I have no idea why it took five years-but it did.  No matter how many people told me to "get over it" or "it's not that bad" or "well my child does this", I was still aching in pain.  What I didn't realize that I was healing, a little bit at a time, as the years passed.

Recently, we've been surrounded by many people adopting.  Adopting domestically, internationally, fostering, and fostering-to-adopt.  These friends have been kind in sharing their stories, just as we continue to share our adoption story.  But the amazing thing?  Their love and passion for adoption is reminding me of those amazing moments WE experienced when we adopted AJ.  How I didn't blink when traveling to a foreign country three times.  How I didn't care about everyone else's opinions on how we were crazy.  How extraordinary it was to love and miss this little boy I hadn't even met yet.  How exciting it was to decorate his nursery.  How overwhelming it felt when they placed him in our arms-FOREVER. How full my heart was after a long trip home and watching him sleep in his crib for the very first time.

He has blessed our lives tremendously.  How we "got" AJ doesn't matter anymore.  He's here and is my beautiful little boy.  He keeps me centered and focused on what is truly important.  I don't stress over the little things anymore.

Adoption is an amazing experience.  It's where my healing began...

P.S. Happy New Year!

Cha-Cha-Cha-Changes

There's something to be said about this time of year.  Perhaps it is a bit delayed this year as we haven't yet seen an snow here?  There are things that remain static, and things that change.  Only one is predictable, though.

The last of the leaves were scraped off the curb last week.  A mix of rain and sleet seems to fall every few days.  We've done entirely too much switching back and forth between sweatshirts and the whole winter get-up.  Soups and hot cocoa have become regulars in our kitchen.  I'm starting to think about putting up our Christmas tree.  Some gifts are wrapped and hidden from peaking eyes.  All these things-static. traditional. routine.

But among all this is one constantly changing little boy.  He has amazed us in the last few months.  There aren't enough words in the English vocabulary to describe how much incredible progress AJ had made.  It has gently reminded me to enjoy each precious moment with him.  Suddenly, his life feels like its in fast forward.  I am indeed not sad about this revelation.  In fact, I'm delighted.  Ask any special needs parent and I'm sure they'd agree.

When our children grow, in any way shape or form, it is monumental.  How our children's lives begin is never far from our minds.  AJ has recently designated himself as the official light-switch operator.  It started with just his own light-switch in his room, but has since migrated throughout the house.  Besides the obvious gains of cause & effect understanding, fine-motor, and gross-motor, the most important gain is the simplicity of the act.  As I observed him giggling, turning lights on and off around the house, my mind was flipping back as fast as a tape deck gone haywire.  That sound was there too.  Come to think of it this flipping reminded me of a view master.  {Can you tell I was an 80's child?}  From a limp, tiny child to a tall, ever-increasingly independent big 6.5 year old who is doing things we were told were very unlikely.

Keep flipping those light-switches kiddo.  Change is a good thing.

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!