Wednesday, April 3, 2013

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!

Monday, April 1, 2013


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,

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.

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."


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.

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