So Far

There are dates that stick out in your mind.  Your birthday.  Your wedding day.  The birthdays of your children.  For many of us special needs parents, another date will inadvertently stick out from now until...well...at least the not too distant future.  I'm talking, of course, of the day we first heard those words - our child's diagnosis.  In our house, I refer to it as "Diagnosis Day" - not exactly a day to celebrate by any means, but a day of reflection on where we've come and where we're going.

This month rings around 18 months since Diagnosis Day.  I had a post all ready to go that was highlighting Jack's current functional status right now or his PLOP, for those of you entrenched in the IEP process at the moment.  Yet, every time I've gone to hit "Publish", I can't help but think that regardless on how much emphasis gets placed on the progress made - or not made - on that list, those levels of performance miss the point.

You might look at my child and see a funky grasp, a weak pincer grasp, or single words with a smattering of two-word phrases, but you'd be missing him.  So, I'm not going to emphasize that.

Not that it's not important.  Not that he hasn't made loads of progress in many areas.  Not that we don't have a long way yet to go.  It still misses HIM.  Who he is.  What he's done.

You see, there is so much about my boy that makes him the greatest person on Earth.

He is the only person who I have ever loved before he even existed.  He's that awesome that I loved just the idea of him.  We were expecting a rough, long wait when we decided to start trying to have a baby, so he defied us all by showing up as a positive pregnancy test that first month!

Then, when I had a sub-chorionic hemorrhage at 9 weeks, I thought that we surely lost him.  I was devastated.  I went to the midwife expecting the worst.  They did an ultrasound to confirm what we all thought was a certainty.  To our astonishment there he was, fluttering and kicking and pumping his little arms in the air.  The hemorrhage - while bad enough to put me on rest for 2 weeks - was nowhere near him and posed him no direct threat.  He was already a fighter and defying the odds once again.

At 16 weeks, my genetic testing came back saying that I was a carrier of Cystic Fibrosis.  Suddenly, the cards were stacked against him once again as his chances of being born with CF skyrocketed.  We waited 4 long weeks for genetic testing on my husband to come back negative.  Of course, I was cautioned that "negative" only meant "negative for the most common mutations causing CF" and that there was still a chance that he could be born with the disease.  When he was born, all CF testing came back negative.  He had defied the odds once again.

I started having pre-term labor contractions at 32 weeks.  They put me on medication to stop my contractions - and it worked.  I was told that I just needed to stay pregnant for 5 more weeks - that he'd be much better off if we could get to the 37-week mark.  He did it.  He made it until 37 weeks to the day.  On that day, I had some complications with my labor and needed an emergency C-section.  We were told that he'd likely need to go to the NICU for a while.  They had a team waiting for him when he was born, but they weren't needed.  Jack showed them that he wasn't going anywhere except with his mama!

All of this to just be born.  My boy is a fighter.

Very shortly after his birth, he made it very clear that his developmental path was going to differ from everyone else's.  Before we had names for what he was doing - before there were diagnoses to describe it all - we knew that he had to work 10 times harder to accomplish the everyday.  He didn't roll over until he was about 8 months old (I actually have it on video - I was so excited!).  He didn't crawl until he was almost 11 months old.  He didn't walk until he was about 16 months old.  Some other milestones - like cruising - were just skipped altogether.  Still, he worked so hard and did them all.

He's defied the odds ever since he was diagnosed with autism.  During one of his first evaluations at the age of 2, I was told to not expect my boy to speak until well after the time he turned 3.  I was told that speech was "not a realistic goal for the next year or so".  Babies Can't Wait didn't even assign him a speech therapist because they thought "he wasn't ready for speech therapy".  Guess what?  He showed him that projections mean nothing.  By this time last year, about 4 - 5 months into private speech therapy, he was acquiring some words.  At the age of 2.5-years old, my boy defied their projections.

When he was first evaluated, and every evaluation since, Jack has tested as having a cognitive delay.  Yet, he shows everyone just how bright he is by knowing all of his numbers, letters, and colors.  It took a lot of hard work and repetition and even playing into his perseverations to keep his interest up (who says that fixating is a bad thing?!?), but he's learned it.  He's not going to let some label, some measure of his cognitive abilities, define who he is and what he's capable of doing.

It's been in everything.  He has worked so hard for everything.  It's the way he had regressed to being non-verbal and then, a year after his regression, began to slowly regain his speech.  It's in the way that from birth he would vomit several times a day with meals and now he goes weeks without doing that.  It's in the way that he can now jump.  In the way that he couldn't point before, but now he will when prompted to point to something.  The same goes for clapping.

He did it all - the speech, the motor gains, feeding gains, cognitive skills, all of it.  It was his hard work that got him where he is.  Sure, there is a lot of hard on the part of therapists and teachers that has contributed to getting him to this point, but ultimately the victory is his.

The biggest change?  His smiles.  The big, beautiful smiles that I never saw when he was younger.  His affect was always so flat, but now it glows when he sees those magnetic letters.  Just allowing him to be himself - flapping hands and all - clearly makes him so much more comfortable in his own skin.  It shows.  He is happy to be himself, most of the time.

I eat up each blissful moment of my beautiful baby boy who has worked harder than any child should, but has come so far in the process.  I have nothing but pride for my angel.  He inspires me and shows me that anything - absolutely anything - is possible.

He has shown me what unconditional love is.  That even in the absence of the traditional displays of love - like hugs and kisses - that a love greater than I have ever known can pass between us simply by sitting next to each other while he arranges his letters.  That a smile can convey what a million words cannot.  In spite of all of the hard work it takes for him to learn and grow, Jack still finds time to teach me a lesson or two about just how much I can love someone else.

I know that we have a lifetime together of continuing to walk along this road of progress, and there may be twists, turns, and corkscrews of growth along the way, but I also have faith in my boy.  I know that he is a fighter.  I know that he'll continue to work hard every day to grow and learn.  I'll be there to support him, to hold his hand, and to think he is the greatest person I've ever known, but the triumphs are all Jack's.  He did this.  He fought.  With support and lots of therapy, he is the one who has come so far.  Not me.  Him.

He is the one who has come so far.