It's early afternoon and I'm cruising comfortably 37,000 feet somewhere over California on my way home to Indianapolis.  For those of you that know me well, "cruising comfortably" in any plane is not typical for me - I hate flying. Hate. It.  It downright terrifies me.  I can't tell you how many choruses of "Jesus Loves Me" have gone through my head over the years on the slightest bit of a bumpy takeoff or landing. Maybe there were even a couple of verses today...

But I think the anxiety was at least a bit less today because of the week that has lead up to it, and how anxious I am to get home and see all my boys. 

The week started with a trade show for work that went well.  Although that was great, it was the conference I attended after that really made the week wonderful.  I was in Las Vegas for work (first time ever to see the strip - what an experience!), and then went to the LA area for a TACA leadership conference.  It's not like I don't have far too much to do right now between work and the kids, but when I got an email asking if I could attend to be able to help the Indiana chapter, I felt I had to find a way to make it happen.

Now, I'm betting that most of you are wondering what I'm talking about - what is TACA?  TACA is Talk About Curing Autism (www.tacanow.org) - families with autism helping families with autism, one child and one family at a time.  It was that mission statement - helping families - that led me to the Indiana chapter once we thought we knew the diagnosis Sam would receive.  The women I met at that first meeting and have gotten to know so much better since then have been a lifeline for more parents than can be counted.  And TACA as an organization has touched the lives of close to 28,000 families.  Over the last year I've met just a handful of them, but I can't tell you how many times I've been told "TACA saved my life" or "TACA saved my kid's life."  And they meant it.  Quite literally.  You see, there's nothing that sucks the life out of you like hearing that your child has this nebulous thing called autism.  And being told they don't know why.  And that he won't get better. That there is nothing you can do about it.  What TACA offers to parents first on this journey called autism is hope.  Hope that there are things we can do to help our children.  That they can get better.  And sometimes even recover.  And most of all that we are not alone in the fight.  There are many autism organizations out there - some focus on research, some focus on advocacy, some focus on public awareness.  But TACA focuses on families. Meeting each one where they are, and providing the support and resources to get through each day.  Because sometimes getting through just one day is all you can manage.

So I spent three days in sunny Southern California (yes, it was nice to have the sun - Pete texted me pictures of the snow, and I sent him pictures of the beach) meeting the brave women who are responsible for bringing TACA to their states - from Hawaii to Georgia to New Jersey and in between.  These are brave women because of their everyday battles with autism.  Some have stories of seizures and mitochondrial disfunction.  Some have stories of food allergies and aggression.  But all have stories of progress.  And some have stories of recovery.  And all have stories of hope.  Hope for health, and hope for happiness.  And hope that their children's futures have not yet been written. 

But they're even braver in my eyes because they are putting themselves out there every day guiding, mentoring, and bringing that hope to families in their areas.  They volunteer their time, their lives and their hearts so that families on this terrible journey do not have to be alone.  I wish like hell that we would never have had a reason to meet each other.  But we did. And I am so grateful to have found them. 

I know many of you have heard (and read) me say that I believe God puts us all on a path - we may not know why, and we may not often understand what we're supposed to do on that path. Although I don't believe he brought autism to our family, I do think that, once we were hit with it, he put me in a place to meet these women and discover TACA for a reason.  As much as that reason was to provide support and guidance to our family, I think it was just as much to tell me that I need to be paying that forward and helping other families.  I mean, geez, look at the reason I started this blog initially so many years ago - it was about enriching the lives of families.  My heart on that point has never changed.  The world has just taken on some new ... flavors ...  So, I'm going to be trying to do just that - helping families through TACA.  I may not have the time to try to help 28,000.  But if just one comes to know they're not alone on this journey - I think that's the one on my path that I was supposed to meet.

 

We try really hard to make it to church each Sunday as a family.  Often when we get there, we end up in various places and doing different things – I sing, Pete greets or teaches Sunday school, Sam and Zach go off to their classes.  So much like the rest of our lives, we can be pulled in a million different directions. 

We were sitting there on Sunday – one of the rare times when Pete and I were both in the service together at the same time.  (Ok – truth be told, it was this morning.  But I know me and chances are it’s going to be sometime much later than today that I actually get this written and posted, so I thought I’d hedge my bets and not say “today”.)  Our pastor usually has pretty good messages to share.  Admittedly, I’m not always in the frame of mind to hear and appreciate them.  Today (oops – I mean Sunday) was different.

This one was all about looking at life through eyes of faith rather than fear.  Quite apropos, really.  Because last week I’d run the gamut of questions about what we’ve been doing – for Sam, for Zach, for Ben, for ourselves.  What do we try next?  How do we know what’s best? How do we deal with the next “recommended” round of vaccinations for them all?  How do I fight for what I believe is right in the face of so much opposition?  What doctors to see?  What conferences should we go to?  How are we going to afford it?  And with every question is no small amount of sheer terror that recovery won’t come.  That we’ll pick the wrong supplement or therapy.  That what’s next won’t help.  That Sam will regress.  And, you see, those fears have been a part of this journey all year – I think, in some cases, adding delay to decision making, and certainly to implementation.

But as I sat there listening, I knew that this had to be one of those times that I was being smacked with a message that I probably really needed to listen to.  Faith, not fear.  Faith that we’re making the right choices for Sam and the boys – and us.  Faith that we’re not alone in all of this – that there is a plan, even if we don’t know what it is yet.

And so we make the choices, take the risks, not knowing exactly where they will take any of us.  But knowing that if we don’t try, we don’t take the risks … well, that would be the greatest tragedy of all.  We can only overcome the fear that could so easily suffocate us by having faith enough to know that Sam’s future is not yet written.

As I was writing this entry, I kept thinking back to something that I first heard many, many years ago.  Back when I was 16 or 17, a high school friend shared a quote with me that I’ve seen a few times since then.  It’s been attributed to any number of people including Leo Buscaglia, William Arthur Ward, and a host of others.  And it fits so many aspects of my life …

To laugh is to risk appearing a fool.

To weep is to risk appearing sentimental.

To reach out for another is to risk involvement.

To love is to risk not being loved in return.

To live is to risk dying.

To believe is to risk despair.

To try is to risk failure.

But risks must be taken, because the greatest hazard in life is to risk nothing.  He who risks nothing does nothing, has nothing, is nothing.  He may avoid suffering and sorrow, but he cannot learn, feel, change, grow, or love.  Chained by his certitudes, he is a slave.  Only the person who risks is truly free.

I’ve had a lot of people ask me over the last year “how did you know?”  How did we know that something was not quite “right” with Sam.  The absolute truth is that we knew for a very long time, but took a decidedly ostrich approach and buried our heads in the sand, so to speak, to the full extent of his problems. 

As I’ve written before, I most certainly knew that Sam was sick early on – soon after he was injured – but didn’t understand or recognize the extent of the damage that had been done.  Quite frankly, I didn’t want to believe that my perfect little baby could be anything but perfect in every respect. 

We were fortunate that Sam was attending a wonderful local preschool (where Zach had gone) with a great staff that served as the proverbial – and somewhat literal – kick in the butt for us to have Sam evaluated by First Steps, our local early childhood development service.  In retrospect, we probably waited too long to take that step.  We’d talked about how he wasn’t meeting the milestones his brothers did.  We’d discussed the concerns with his pediatrician.  We’d even had arguments about whether we needed to look for help beyond what we already had to figure out why he wasn’t progressing like his little friends in his classroom.  We’d been told by the doctor not to worry yet, not to measure him by his brothers’ achievements, that he would likely catch up.  All those assurances certainly contributed to our initial complacency in seeking out a diagnosis for Sam.

Shortly before his third birthday, a woman who has become a wonderful friend, who happened to be the owner of Sam’s preschool, a mother of a child with autism, and a person with such integrity and genuine love in her heart for the children her school cares for, told us point blank that she believed we needed to have the evaluation.  If we weren’t sure of our own gut instincts about Sam, our trust in and respect for her made us sure.  We scheduled the evaluation as soon as we could get him in.

The catch – if you want to call it that – was that First Steps doesn’t diagnose autism.  And we didn’t know to look further.  He was severely developmentally delayed, and eligible for OT, PT and speech therapy through First Steps – but only up until his third birthday.  Which was less than four months away.  After age three, First Steps transitions children to the public school Early Childhood program.  So, in August of that year, Sam began attending the EC program at a local elementary school four days a week.

Unfortunately, there was a catch there, too.  The special education teachers in the public school won’t – can’t – tell you they think your child may have autism, or suggest that you seek further medical assistance to get a more distinctive diagnosis beyond “developmentally delayed.”  There’s simply too much potential liability in even hinting at such a thing.  It’s unfair to parents like us who were pretty much clueless, but its also unfair to the teachers that want to help, but just can’t. 

When Sam started back to the EC program the fall of the next year and we had our first case conference with his teachers, it was like a ton of bricks just came crashing down on us.  Sam wasn’t making progress.  He wasn’t improving.  And there didn’t seem to be much hope that anything was going to change.

And that’s when I knew.

Sam needed more help than what we had been able to provide up to that point.  And to figure out what to do next, we had to know – know, for sure – what we were facing.  I had done my share of internet searching (yes – it is as dangerous as everyone says it is!) to see what I could learn about the symptoms we were seeing in Sam.  I had started to wonder if autism was the diagnosis we’d ultimately receive.   

And that’s when the real hell of getting a diagnosis began.  I spent hours making calls to doctors only to find out that Sam had to be put on waiting lists years – yes years long before he could even be seen.  (We’re actually still on one locally that doesn’t have his first appointment until October of 2012.)  With each phone call and waiting list story, the anxiety over finding out what was wrong with my son increased.  It wasn’t a far step between anxious and desperate.

When we finally found someone who would see Sam, we still didn’t really know what we should be looking for in a doctor.  We jumped at the first opportunity for anyone to see him.  Unfortunately, our first experience also introduced us to the world of docs that can’t give true diagnoses, can’t provide true medical help, and are more interested in revenue than recovery. 

If there was something truly positive that came from that experience, it was an keen consumer’s eye for medical care, which we’d always taken for granted and trusted.  And through the benefit of beginning to meet more people than we ever imagined sharing this journey of autism with us, we got an “in” to a wonderful MD that was able to give us the diagnosis we expected.  It was that diagnosis that allowed us to start getting Sam the intervention he truly needed. 

Six months after we started trying to get answers, we had one – and about a million new questions.  But it was a start.  

It was Day One.  

We took Step One.  

The marathon was on.

So, it’s 5:00 on New Year’s Eve.  The last hours of the last day of 2011.  And I just can’t figure out where the year has gone.  There have certainly been points throughout the year that I really felt like 2011 was the absolute longest ever.  GI issues, medical tests, therapies, supplements … it often seemed like it would never end! 

But now I’m sitting here thinking about all I didn’t get accomplished and, more importantly, all the wonderful moments that I didn’t want to pass, but have paved the way for the future.  Sam having a real conversation, learning his ABCs, writing his name, understanding Christmas.  Ben driving.  Zach embracing his diet changes.  Work challenges and successes.  Friendships made and transformed.  Experiences broadening horizons that I would have never imagined a year ago.

And I’ve laughed and I’ve cried.  I’ve cursed and I’ve prayed.  Boy have I prayed.  And the sun rose and set each day.  And it all brings me here to this magical night, thinking about what the next 366 days (leap year!) will hold.  I can’t say I’ve ever been one for New Year’s Resolutions – I’ve never had the desire to set myself up for failure and since 88% of resolutions end in failure (according to the all-knowing AOL), I just didn’t feel the need to test the odds. 

I did, however, make a resolution last year to be taller.  Yes.  Taller.  And as ridiculous as it sounds, I haven’t done half bad this year.  I’ve found a few pairs of heels that have been nice to me and I’d have to say that for more than half of the year, when you add it all up, I was taller than in 2010. 

Thinking of that tonight, sitting here listening to the sounds of the boys upstairs playing and doing their own things, I started wondering what I could try in 2012 that might serve me close to as well as my being taller resolution did last year.  Now, in the last week, I’ve had two people ask me and two people email me asking when I was going to blog again.  That’s (obviously!) been one of the things that have gone by the wayside in the business of the last few months – but the questions made me think about why I started to do it in the first place. 

I don’t know if there’s a soul out there that will read this little entry.  I hope so, but I know that even some of my best friends don’t.  But, then again, that’s not what matters.  As that dear friend I mentioned before so aptly put – writing is cathartic for me.  I may not be that good at it.  I may not have a ton of readers.  I may have to literally schedule time to get words on paper – but I need to do it for me.  And hopefully, someday, for Sam and Zach and Ben. 

So that’s what brought me to flipping open the laptop and penning a few words while waiting for the boys’ GFCF chicken nuggets to cook.  My resolution for 2012 – blog more.  Notice how I didn’t put any definitive amount on there?  ‘Cause I’m testing the odds just by making one – have to give myself a leg up where I can!

May the New Year bring you all health & happiness … the best things we can have!

I have had more than one person comment of late about my lack of presence in the blogging world recently.  (Thanks for noticing, by the way!  It's sort of nice and more than a bit humbling to actually be told you're missed!).  It's not been for lack of thought streaming through my head at all hours that has kept me a bit sleep deprived - but provided prime blogging time - over the last several weeks.  That certainly hasn't changed!  But I've actually been filling that time with work.  You see, by day (and sometimes night) I work for a great company that provides services to the insurance industry.  And in case you hadn't heard, there was a little hurricane that brought havoc to most of the eastern seaboard the last weekend of August. 

So ... My prime blogging time has been a little occupied with some related work "stuff."  I know there will be similar events in the future, so please know that if I'm MIA for a bit ... just check the weather and know it might be a bit before I can get back to writing for me!  Fortunately, I work with some amazing people doing great work ... which makes it so much easier to weather the storms. (Yes - that was pun intended.  Never said I was good at those!)

In any event, I talked about what led us to Zach's diagnosis.  And although Sam was born just around the same time, our next exposure to the spectrum world was chronologically with Ben. 

Now Ben has never had any of the "traditional" spectrum symptoms or characteristics.  But shortly after the start of his second semester in eighth grade, he started experiencing an awful lot of stomach troubles.  At first - well, for quite a long time, really, thought he was using stomach aches to get out of doing things he didn't want to do ... wrestling practice, band performances, school events ... I was convinced he knew that a simple "Mom, my stomach hurts" would send me into sweaty palm panic mode (the whole puking phobia manifesting) and get him out of almost anything.  I actually started getting angry with him because it was happening so much and I was at least semi-convinced it was all a ploy.  It was crazy that this kid, who'd never been sick much in his life, was suddenly having so many problems.  Nothing else made sense.  It wasn't until recently that I realized his stomach problems surfaced not long after he received his most recent state mandated Tdap, meningococcal, and DTP (his sixth) vaccines. 

Unfortunately, the prevalence of pediatric gastroenterologist is about on par with doctors treating autsim, and we were unable to get him in to see one until just before school started again in August.  Just two days before classes started, he underwent an endoscopy, which revealed a horribly inflamed esophagus and several ulcers in his stomach.  He ultimately was diagnosed with eosinophlic esophagitis ("EE"), exacerbated by environmental allergies.  (And, yes, I totally felt like Mother of the Year for thinking he was milking it all!)  Little did we know at the time (but have learned in the last nine months) that allergies and EE in particular are among the realm of autoimmune disorders that accompany ADHD, asthma, and autism as the "4 As" in the spectrum world. 

Ben began an intensive regimen of treatment for the EE and, although he has to be cautious of what he eats, he has it under control.  There's still a lot he'll have to be aware of and watch for as he gets older, but just like Zach and Sam, he doesn't let it slow him down.

And in the midst of addressing Ben’s stomach issues, we delved headfirst into Sam’s journey, but didn’t even realize where we were headed at first.  Stay tuned for that next part of the story…

 

If I really sit down and try to think about where the beginning was (and I have … for a very long time … giving me another excuse … “where to start?”) for us in this journey, I really can’t say it began with Sam.  In retrospect, of course, with the benefit of the research done, the conference sessions attended, the wisdom of the people I’ve met, I would have to say that our first introduction to anything spectrum related was actually with Zach shortly after he started school. 

We got the notes home about his attention and behavior even earlier - starting in preschool.  He was a very smart little boy, they said, but didn’t do well with change.  He sometimes struggled to get along with his peers.  He had trouble keeping focus during circle time.  It got to the point where I getting downright pissed off (pardon the language) because I never heard anything positive when I picked him up each day.  Now, the center was going through a series of personnel changes that directly affected Zach (over and over again, in fact), so we decided to move him to a new preschool.  We were so fortunate to find a loving and open environment in his new school (and I found a wonderful new friend – but more about that with Sam!), and he thrived there.

And then he went to school …

Zach has always been such a kind-hearted and caring little boy – and he was just as smart as his big brother Ben.  But focus and attention was a real challenge, first through kindergarten and the part-time after school care he had there, and then into the first grade.  It was at that time that his teacher requested we have him evaluated for ADHD.  We did, and it was a quick and resounding “yes – that’s it” from the doctor … and right on to medication. 

Lest I forget, like Sammy, Zach was also plagued with incessant and recurring ear infections leading to ear tubes very early, and a resulting terrible scare of possible kidney failure when he was four.  I thank God it didn’t turn out to be that, but knowing what I do now, I wonder how much that early toxic exposure may have harmed him.

Zach has always taken everything in stride – he was a trooper in taking the medication, and has been very willing to see the doctor, have tests run, and talk about diet changes and supplements (including B12 shots!) that could help him.  We started down that path just a couple weeks ago because we wanted him off the meds.  We’re waiting on those results, and are having him evaluated by the same neuropsych that Sam’s seen (probably a year from now because of how overwhelmed they are with kids needing those evaluations). 

And I would never have thought there was an option other than meds had it not been for what we’ve learned from Sam’s diagnosis.  There’s so much out there that tells us that ADHD falls somewhere on that same spectrum where we find autism.  So I can’t help but consider that some of the same interventions that have done such amazing things for Sam thus far might help Zach overcome his own diagnosis. 

We’ll see … one step at a time…

I’ve been struggling the last few weeks over things I wanted to write about… admittedly, the whole blog-about-my-life experience is new to me.  I keep finding that I have about 1000 things going through my head at once – and there’s so many little things I could pick up on and share here.  But I pause because this topic needs some previous background I haven’t written about.  Or I think that one won’t make sense because I’m waaayyyy late in commenting.  Or (when I’m feeling especially sorry for myself) I tell myself that I don’t have many readers (and some of my best friends don’t even seem to realize this blog exists), so does it really matter what I write?  Or… my excuses just go on and on. 

Lying awake at 4:15 this morning (have I mentioned that sleep just doesn’t come much these days?), I started thinking about all those excuses again.  (Maybe that at least partially explains the not sleeping!)  And I circled back to where my thoughts were when I put fingers to keyboard the first time.  It’s not that my excuses don’t have some ground in reality.  Fact is, there’s a lot of background I haven’t recorded in type.  I am awfully busy and it often does take me a long time to gather thoughts on topics on which I want to comment.  And there are folks – even those I actually poke and prod a bit about it – that will never read my words.  But that wasn’t why I started this in the first place.

It’s about Sammy.  It’s about his journey.  It’s about his big brothers and their own journeys alongside him, as well as on their own.  It’s about what we’re doing, thinking, feeling, reading, researching … all along this path we’d never have chosen for anyone, but that we’re on nonetheless.  We never planned on having a child with autism.  The big boys never sat around thinking they’d be living in the special needs world.  We certainly didn’t think we were joining the fad or being fashionable.  (Really?  Don’t get me started on that one.  It’s one of those topics that I’m way late in commenting on, but just blows my mind to think any educated person could possibly believe anyone WANTS this diagnosis – or could be downright foolish enough to say it out loud – and in print!  Perhaps I’ll get to it soon, but for a great commentary on Dr. Allen Frances’s inane assertions, take a look at LJ Goes’s post for Age of Autism.)

So I decided I’m going to try to go back to the beginning for a bit and fill in the “prologue” to our journey.  Where did we start and how did we get to now?  I’m counting on it eliminating at least a couple of those excuses rattling through my head in the middle of the night.  Maybe I’ll even get a few more winks out of it…

It’s the season of birthday celebrations in the Elliott household.  We’ve moved from Sammy’s big day (which, we’ve now decided, will include a cake each year saying Happy Birthday to Jason) to Zach’s.  Today is actually the in-between day of Zach’s two birthdays.

Huh?  Yep – he’s got two.  Not really, of course, but we’ll never actually agree with letting him have only the one he really wants right now.  Confusing?  To us, too. 

You see, Zach was born (not quite) 10 years ago on August 3rd.  I remember it well.  I was there.  So was Pete, as were my doctors and nurses.  And after the blessed event, we checked all his fingers and toes and signed all the paperwork to attest to his birth and get the official documents we needed for him like his birth certificate and social security card.  We checked names for spelling errors, addresses for zip code mistakes, and confirmed his birth date and time. 

Apparently the Marion County Health Department decided not to be as careful as we were. 

Of course, we didn’t check the details – like date of birth – on the birth certificate when we received it in the mail (bad us).  We dutifully filed it away in our fireproof filing cabinet awaiting the day we needed to retrieve it to register Zach for kindergarten.

That day came now a little over five years ago when he was just shy of his 5th birthday and was following his big brother Ben’s footsteps in the academic realm, already reading and doing basic math.  He was so ready – academically – to go to school, we decided to take the steps necessary to get him tested to be allowed into kindergarten that fall.  The official cut-off date for kindergarten enrollment that year was August 1st.  We figured, just being a couple days off that mark, Zach would be ok – and was certainly anxious to get there.

So, we pulled out the information we needed to take to the school administration folks to request testing … and discovered that Marion County had recorded his birth date as August 1st. 

I immediately called the administration office and tried to explain our situation – and that we had every intention of getting the birth certificate corrected (which we’d already discovered was going to be a terrible mess of red tape and take longer than my pregnancy did in the first place).  The woman I spoke to was not terribly helpful and, in fact, truly ticked me off.  After hearing “Ma’am.  I told you.  The only proof of age we accept is the official birth certificate from the state” for the final time, I said “Fine.  We’re enrolling him.” 

I hate being called “ma’am.”

So we started down the long path of having all Zach’s school records reflect his birthday as August 1st.  We tried to explain it to him then, but he didn’t quite get it.  He has for a few years now – and relished in it the first year when he realized he had TWO birthdays … and wanted cake and presents on both.  He’s now decided he is ok with just one – but wants it to be the earlier day.  I guess we’ve actually somewhat given in. 

He awoke yesterday to choruses of “Happy almost but not quite really Birthday to You!”  He wasn’t nearly as amused as we were… 

So … last Saturday morning, I was up early and out to the farmer’s market to pick up some goodies for our birthday celebration with Sammy.  He picked up on the fact that Friday was the big day pretty quickly and when Pete picked him up he started asking about his birthday balloons, presents, and cupcakes.  We had the presents covered and, although we hadn’t anticipated getting any, it was a pretty easy task to run by the party store for some shiny Mylar balloons.

I knew I’d need a little help with all the tasks, so I rolled Ben out of bed to go along with me and be my muscle.  He was a great help – carried the bags at the market while I collected Sam’s cake from the gluten free bakery that has a booth there every Saturday.  I had even planned ahead, ordering the cake the week before when we were there.  We collected our goods and hopped back in the van to head to Whole Foods to pick up a few last grocery items.

About half way there (Whole Foods is on the other side of town – technically in a different town – from where we live.  Despite my best email efforts to convince the corporate office that they would make a killing if there was one on this side of town, they’ve politely declined my suggestion each time.  Point being … it’s a pain in the rear to have to haul ourselves across town each time we need to go … so half way there isn’t just a skip from home), Ben asked me if he could check out what the cake looked like.  I’d been in such a hurry to get on with our tasks that I hadn’t opened the box once I picked it up. 

Didn’t see any harm in that, so I told him to be careful picking it up, but to go ahead and take a peek.

It was a perfectly lovely cake that said

Yep.  That’s right.  Happy Birthday Jason.

We went back to discover that Jason’s mom had already been by to pick up his cake that did, indeed, say “Happy Birthday Sammy.”  The bakery owner offered to fix it after she was done at the market at noon, but that was when everyone was going to be at our house to celebrate.  And it’s not like we could have run to the store to find another yummy gluten-free, casein-free birthday cake before noon, so we decided this was one of those times to be thankful for what we have … and that Sam can’t yet read.  We figured everyone else was old enough to understand and, even if we’d told Sam the name was wrong, he wouldn’t really get it anyway.  (We learned, however, that Jason was turning 20 and would certainly get it.  Here’s hoping he had a sense of humor.) 

We all made jokes about it and wished Jason a happy birthday, too, while we were enjoying the cake. 

A few hours later, Sam was riding around the kitchen on his new Lightening McQueen scooter.  After several laps around the island, he stopped, looked at me, and said “It’s Jason’s birthday.  Happy Birthday Jason!” 

It may have been a tad delayed in coming, but I think we’ll need to start watching what we say in front of Sam.  No telling what he’s actually getting these days. 

And I can’t tell you how thankful I am for that.

Happy Birthday!  Today our beautiful little Sammy turns five!  We’ll be celebrating the big day tomorrow, actually, so some of our out of town family can come join the festivities. 

As I sat thinking about this last night, I started thinking about how bittersweet of a day it is. 
Why bittersweet?  Well … we have so much to celebrate, but there are still those nagging little reminders that turning five for Sam isn’t like it was for his brothers or like it was for the little boy at the Cubs game a few weeks ago. 

It was always a tradition in my family that the birthday boy or girl got to pick what was for dinner.  As my siblings and I have gotten older, we’ve moved away from that a bit for the bigger family gatherings, usually just leaving it up to the host to pick what the dinner faire will be.  Now, I still try to let the “big boys” pick for their special days here at home.  We’ve had pizza, steak, Chinese, lasagna…

Sam doesn’t get to pick. 

At least not yet. 

You see, one of the first changes we made with him after his diagnosis was to his diet.  We removed gluten and casein from it.  And like many autism families, we saw a real, significant improvement within a short time after doing so.  We’ve since learned about lactose intolerance (which he has), gluten sensitivities (which he has, as do I), and celiac disease (gut biopsies couldn’t confirm because he was off gluten already and didn’t draw enough blood to test while he was out for his colonoscopy).  And we’ve learned about organics, free-range and grass-fed meats, and GMOs.  Although we effectively tripled our grocery bill each week, I think it is helping us all eat better and healthier, and be better stewards of the bodies God gave us. 

But the grocery bill does kind of bite. 

Anyway, we’ll be having a cookout with grass-fed burgers (from a local farm picked up at the local farmer’s market), fresh fruit (much also courtesy of the farmer’s market), chips (hey – they’re naturally gluten free when you get the good ones), organic lemonade (Whole Foods loves us now), and Sam will even have a gluten free bun that, as my dear husband has said, doesn’t suck.  (It’s been a long time in finding one that fits that bill!) 

We have another tradition in my family.  It’s a little odd.  Well, a lot odd.  And no one can seem to recall where it originated.  After dinner is over and it’s time for birthday cake, we light the candles and sing the song and the birthday boy or girl blows out the flame.  What’s odd about that, you ask?  Nothing yet.  But there’s more.  So, once those candles are out, if you’re the birthday boy or girl, you can’t talk – not utter a word – before you take the first bite of the cake (which is served to everyone else first) or you have to eat your cake sitting under the kitchen table.  I think we have pictures of every person in the family devouring their traditional birthday dessert faire from the floor, surrounded by table – and people – legs. 

Except Sam. 

Now, I’m actually very excited that Sam will be able to enjoy a gluten-free, dairy-free birthday cake made by a local baker that is really quite good.  For a while when we first started the diet, I thought he may never be able to enjoy such treats again.  At least not ones that didn’t suck per Dad. 

But I know he wouldn’t understand our bizarre birthday tradition. 

Not yet. 

But I refuse to believe not ever.   

Now, I do think he will understand the concept of presents this year.  We weren’t even quite there this past Christmas, and certainly not last birthday.  Just a week ago, we were shopping for a birthday present for my best friend’s son, and Sam really took an interest in the present, and even more of an interest in the gift bag.  And he was excited to see his friend open the gift and play with it.  The gift itself even held his attention for a minute … until he discovered the giant roaring remote control dinosaur that he could make walk across the floor and put things in its mouth. 

So, this year’s birthday is a little bittersweet.  We get to have a celebration with good food and yummy cake.  But Sam can’t yet experience some traditions (however silly they may seem) that the rest of the family has.  Sam can’t enjoy a baseball game with his Dad, but he will be surrounded by people who love him and cherish each day with him.  And I’m hoping we get to see real joy in his eyes when he gets to open and play with his gifts. 

Sam’s fifth birthday marks Day 170… still just past the starter’s gunshot of our marathon.  I can’t wait to see what strides he’ll make in the next year.  Perhaps he’ll even eat that cake under the table on Day 535 when we celebrate six.