Sunday, June 30, 2013

Special Delivery

Although these photos appear on my photography blog, I wanted to share them here as well.

What a "special delivery" it was yesterday morning when the Robbins nesting in our tree hatched.  I had the pleasure of capturing one of their morning feedings. 

Enjoy the cuteness!











Friday, June 21, 2013

National Shriners

Just a quick post to let everyone know that ...

Jackson's story also made the national Shriners Hospitals for Children website!!!

We are so proud!

Visit the link at:

Wednesday, June 19, 2013

Jax in the Shriners News

We did it!

Our Jackson made the Shriners news!

*   *   *

At our last visit to Shriners Greenville, we presented Jackson's orthopedic surgeon, Dr. Peter Stasikelis with a framed print of Jackson beside his 9 Mehta casts.  Dr. Pete LOVED it.  He began showing it around to the clinic staff and soon asked us to stay awhile.  He brought in the Greenville Shriners' web designer, and she took my information.  Soon, I was interviewed about Jackson's journey with Progressive Infantile Scoliosis and asked to send her a disc of the photographs I had taken.  Well, today was the day!

Jackson's story and photographs are "live" on the Shriners Greenville website!
And ... the author is sending his story to National Shriners with hope they will publish it as well.

We are beyond proud of our Superstar!

Here's the link to his story:

Happy Reading!

Sunday, June 16, 2013

Everything Happens for a Reason


Everything happens for a reason.

Or so “they” say.

Try as I might, I cannot package Jackson’s journey with Progressive Infantile Scoliosis into a compact “aha! moment” of clarity.   God hasn’t revealed to me a measurable reason for our suffering or some cataclysmic event in which I knew THAT was why He brought us through it.  He did, however, bring us through it, and I trust that it wasn’t in vain.

The truth is, I have learned a lot.  Cliché!  I know.  However, the lessons I have learned have been anything but.  They have been small things, ugly things sometimes.  Most certainly, they have been lessons I surely would have never learned by walking a different path.  These lessons have been things I never asked to, wanted to, expected to, or tried to learn.  They, however, have fundamentally changed me into the person I am today … someone very different (in a lot of ways) than I was three short years ago, before Jackson’s diagnosis with PIS.

Here is goes!

*   *   *

1.     “Ugly” Emotions are Important & Should Be Admitted:
If you’ve ever been through a deep crisis in your life, you probably know where I’m headed with this.  If not, thank your lucky stars and continue reading so you aren’t so caught by surprise if these emotions ever catch up to you.  After I moved past the initial shock/denial of Jackson’s diagnosis, I was angry and bitter.  My negative feelings scared me, surprised me, and seemed to permeate almost every aspect of my life for a long while.  Most of my anger was directed at God.  I did not understand why God would “allow” something like this to happen to my son.  I questioned whether God purposely chose to send such a terrible thing into our lives.  I couldn’t pray, I struggled not to roll my eyes at spiritual encouragements, and I shut down my own spiritual growth.  My bitterness was mostly directed toward families with “normal” children.  Once, while eating lunch at Chickfila with my mom, I admitted it aloud saying, “I hate that family over there.  Enjoying their happy little meal with their beautiful, perfect, happy little life.”  Even now, writing that down brings back the memories of those raw emotions.  They were very ugly emotions.  But they were also very critical emotions.  As time passed and Jackson’s treatment was underway, they began to slowly subside.  And as that happened, I began to recognize them, admit them, and dismiss them.  They became “battle scars” on my heart that I could show off to others in crisis.  The phrase “it’s normal to be angry” suddenly became real to me, and I was able to empathize at a deeper lever.  Also, realizing that I had felt such carnal emotions became an exercise in humility. 

2.     Be “All In” for the Right Reasons:
Okay, I’m really bearing it all now!  I’ve always been a self-admitted over-achiever.  Joining a club was never enough.  I had to be the President.  Sometimes (shocker), both joining and leading were resume builders for me.  Here’s the thing:  no one voluntarily joins the “special needs” club, and no one climbs that corporate ladder.  For once, I was placed into a group in which my natural abilities and tendencies could only help me do good things for the whole.  And, what better motivation for being “pure of heart” than the life of your own child?  Being active in the Progressive Infantile Scoliosis community (especially through the Infantile Scoliosis Outreach Program, ISOP) has been an absolute labor of love.  It has taught me what it REALLY feels like to be passionate and dedicated to a cause.  I have finally grasped the concept of “learning to say no” to things that aren’t really important to me.  Likewise, I have experienced the true joy of championing a cause in which I wholehearted believe.  I very much look forward to “big things” with ISOP.  For more information, please visit:  www.infantilescoliosis.org.

3.     Recognize Your “Information Overload” Point:
Am I type-A?  Heck yes!  Do I research things ad-nauseum?  You betcha!  Contrary to what I thought previous to this journey, even I have a point in which too much information is no longer a good thing.  This took me awhile to realize.  However, now I am really good at recognizing it and removing myself from the situation.  At the beginning of Jackson’s journey, I used to read infantile scoliosis forums for hours on end … reading about families discovering tumors, and syndromes, and genetic anomalies.  In the end, thankfully, none of these things applied to us … yet I lost sleep over them.  As time passed, I began to literally repeat to myself, “I need to focus on our situation and our situation alone.  Right now.”  I think this lesson in invaluable for almost every aspect of my life.

4.     Respect Your Allies:
Poor Justin.  That’s all I can say.  This lesson took me a very long time to learn, and sometimes I still struggle with it.  Let me say  that there’s a definite reason behind the sad statistic that “special needs families” have an even higher divorce rate than the insanely high “regular” divorce rate.  When you’re going through a really bad time,  try to remember that your spouse is on your team.  He/she wants the best for your child and for your family.  You will not always agree, and you will certainly have unique strengths and weaknesses, but you share a common goal:  healing.  Or, on less poignant days, just making it out alive!

5.     The “Unknown” Makes People Uncomfortable:
This lesson has been painfully difficult for me.  It’s still a point of tenderness and a work in progress.  To put it bluntly, most people who have not experienced raising a “special needs” child have no idea what you are going through.  Sadly, many of them don’t want to understand either.  Therefore, you will lose friends (but you’ll make some, too).  My opinion is that their lack of experience makes them uncomfortable.  And, what do most people do in awkward and uncomfortable situations?  They get out of them.  “Special needs” don’t just ‘go away’ in a few weeks, they don’t always bring positive news, and they can sometimes become very monotonous.  Some friends may be overwhelmed by this, or bored, or feel ‘burdened’ by what you are going through.  Let them go.  Just like in relationships,  there are plenty of fish in the sea.

6.     Misery Really Does Love Company:
Okay, “misery” is a terrible word.  What I’m trying to say is that finding others who are experiencing your unique situation is imperative.  Posting a question to the “Early Onset Scoliosis” Facebook group can almost immediately calm my nerves.  These mamas know the right answers!  Even better is talking to my friend L*, whose daughter has special needs.  Though in completely different situations, L* and I share a bond that I do not share with anyone else.  Our conversations are encouraging, non-judgemental, and oftentimes rather cathartic for me.  We can seek one another’s opinions, exchange medical information, and even just bit*h about the crappy parts of our job as a “special needs mom.”  At the end of a tough day, she gets me and I get her.

7.     Pick Your Battles:
Let me just say this:  If in response to my telling you about Jackson’s Progressive Infantile Scoliosis you tell me about your cousin’s neighbor’s granddaughter who was diagnosed with scoliosis in middle school and wore a brace for 3 years … and I smile and nod … It was a conscious decision.  Through this, I have learned that sometimes it is better to save my breath and change the subject.

8.     Doctors Don’t Know Everything:
Granted, I learned this lesson back in nursing school.  However, now I know why this is so important to remember.  This isn’t about putting down the medical profession.  Doctors are brilliant.  There are several doctors to which I credit saving Jackson’s life.  However, doctors are human.  Doctors are busy.  Doctors are specialized.  I have learned that I AM THE SINGLE MOST IMPORTANT PROTECTOR OF MY CHILDREN, and it is up to me to speak up if I feel something is awry.  Never be afraid to trust you “mommy instincts.”  Most of the time, they are right.  Remember, embarrassment is temporary but regret cannot be undone.

9.     Actions Speak:
Bring someone a meal.  Do your friend’s laundry.   Invite a sibling over for a playdate.  Send a card.  Remember dates.  Inquire about specifics.  I vow to NEVER say to someone in a crisis “let me know if you need anything.”  Ever.

10.  Do Something Good:
Short of hearing the beautiful words, “Jackson is cured,” little has brought me more joy throughout this process than helping other people just beginning their journey.  Talking to newly diagnosed families has given me a sense of meaning and purpose.  It has helped me identify some “reason” for what Jackson has been though.  If you feel you have something to offer, put yourself out there!  Don’t be afraid to “let it all hang out.”  My blog is pretty honest.  I designed it to be that way.  Therefore, over the last few years it has become a place where newly diagnosed PIS families often end up discovering online.   I have never once regretted sharing Jackson’s story with the world.  

Saturday, June 15, 2013

Look Who's Walking

Finally ... on June 9th, 2013 ... our Oliver is officially walking!

Granted, he took his "first steps" on May 8th, 2013; however, since he NEVER duplicated them ... I didn't think they were blog worthy.  So, for the last month, we've been operating around the notion that Oliver KNEW how to walk ... but was simply choosing not to.

So Oliver!

Now, however, he's on the move!

video

That's correct.

He has also apparently learned how to bite.  Don't you just love the rabid-dog-esque sound effects at the end?

This one is sure to keep me on my toes!

Sunday, June 9, 2013

Jackson's Brace Fitting

We returned home this morning from another trip to Shriners Hospital in Greenville, South Carolina.  This time, we had traveled there for Jackson first (and hopefully last) TLSO Brace fitting!

I had a lot of apprehension about this appointment, because having been cast-free for 2 weeks, I was concerned that Jackson would be very opposed to wearing his brace.

Wrong!

In his usual fashion, Jackson was so excited to get his "soccer ball" brace and begin showing it off to the world.

He's our hero.



Once he had his brace, Jackson went to have in-brace x-rays taken to ensure proper fit.  He stood for his x-rays like a champ ... with no fuss and no help.


Then, we went to see Dr. Pete for some final instructions and to give him the "gift" we had made.  Remember the celebratory image I shot of Jackson with his casts?  Well, I framed a large print for our beloved Dr. Pete!  And ... guess what ... he LOVED it ... and requested permission to use the image for the Shriners website and magazine!!!  Naturally, I obliged.  Jackson is going to be a superstar!


Dr. Pete was very happy with Jackson's final x-ray comparison.  He felt the brace was holding him well.

Check out this amazing progression!


This shows Jackson's spine:
1.  Before casting (45+ degrees)
2.  When we transferred his care to Greenville Shriners (18 degrees)
3.  After Cast #9 (0 degrees, with Jax not cooperating and tilting his head)
4.  Jackson's in-brace x-ray (0 degrees)

Just LOOK what wonders Mehta casting can do!!!

Praise the Lord!

*   *   *


We are thrilled to be beginning this new chapter in our journey.

However, we need your prayers as we fear their may be a rather large hiccough in our path.  After Jackson's x-rays were taken, the orthotist was supposed to trim a very small amount off the pubic area of his TLSO brace.  However, he trimmed all the way across the brace instead.  We didn't realize this until we were almost home, but it appears that Jackson's brace is sitting very high (maybe too high) in the front.  Although he is comfortable, his belly is bulging beneath the brace and we are unsure whether this will maintain his spinal alignment.  As you can imagine, I'm feeling pretty sick about the whole ordeal ... and have a plethora of telephone calls to make in the morning.




Please pray specifically for:

1.  The orthotist/doctor's wisdom to know whether this is okay.
2.  We get to CORRECT brace fit for Jackson.
3.  If possible, we can avoid another trip to Greenville AND HAVING TO BE RE-CASTED TO MOLD FOR ANOTHER BRACE.
4.  The brace Jackson wears with MAINTAIN his straight spine!

Tuesday, June 4, 2013

CURED

One journey ends ... and another begins.

On May 22nd, 2013, we heard the words we have been waiting for almost Jackson's entire life:
"Jackson is CURED of Progressive Infantile Scoliosis!"

*   *   *

After 9 body casts over 21 long months, our son's spine measured 0 degrees (down from 50 degrees), and he no longer has scoliosis.  His 9th body cast was removed, and he was molded for a plastic TLSO brace which he will wear 23 hours/day for the next 12-18 months.  Prayers are still greatly coveted that his spine remains straight and that this is a PERMANENT CURE for our brave Jackson.

*   *   *

To celebrate, we had a special "Cast-Off Photography Session" with Mommy behind the camera.

Here are a few of our favorite celebratory images!










Hooray!
With the help of God, Dr. Min Mehta, Dr. Patrick Cahill, Dr. Peter Stasikelis, Heather Hyatt Montoya of ISOP ... and many, many, many others ... our Jackson has beaten the "only potentially fatal condition in pediatric orthopaedics."  What a reason for celebration!

Way to go (& grow) Jackson!