Special Needs Spotlight: Aaron

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Miggy: 
Can you take me back to the day you knew your son Aaron was going to have
special needs?  Do you remember how you felt?  Can you compare those
first thoughts and feelings with how you feel now?

Rebekah:  I remember well the day we found out Aaron
was going to have challenges.  (I love
that word “challenges”.   Challenges are
meant to make you stronger, to be overcome, not to destroy you.)  It was that 20 week ultrasound, where you go
to find out if you’re painting the nursery pink or blue.  Because that’s the important part.  Right? 
Anyway, it took a long time, and the tech told us our little boy (blue!)
had a cleft lip and palate, and the doctor would want to talk to us.  He seemed really serious for something like
clefts.  I mean, I know they involve a
lot of surgeries, but it’s not the end of the world. 

Then
he started listing out other problems. 
Clenched fists, some cysts on his brain, which might or might not mean
anything.  Crossed legs, the clefts, and
a serious issue with his arteries from his heart.  I felt like I had been sucker punched.  I cried all day.  I started looking around the internet at each
challenge.  They were all doable.  It would be a long road, but okay.  Then I put all of them into a search engine.  Trisomy 18. 
Incompatible with life.  I
couldn’t breathe.  It wasn’t possible.  My baby, this child I felt moving, kicking,
growing, was expected to die, if not before birth, then right after.  I felt like my world came crashing down.

Now, I
wouldn’t change that extra chromosome for anything.  I might feel different if he hadn’t made it
to birth, or if he’d died shortly thereafter, but I’ve learned that this is a
tremendous gift to our family.  Aaron
lights up the room with his smiles.  He
has a tenacious spirit that keeps on going, smiling, even through his
difficulties.  I know a lot of people
feel sorry for him, or for us.  No
way!  I love this.  He has taught us so much, and has enriched
our lives so incredibly.  I wouldn’t miss
this for the world, even if (when) his time here comes to an end.

Miggy: 
I love how you say that “medically speaking Trisomy 18 is a
condition that is ‘incompatible with life,’ but somehow Aaron is not only living,
but thriving and loving his life!”  What has Aaron taught you about
living life?

Rebekah:  We joke that since Aaron can’t read, he
doesn’t know he’s supposed to be “incompatible with life” and he just keeps on
living.  But really, there have been
several times when things could have gone differently.  Aaron has taught me to never give up.  Sometimes things are hard or painful, but you
just keep on going, with a smile.  He
occasionally cries, but never without a good reason (needle sticks L), and as soon as it’s over, he goes back to being
happy.  Also, he’s taught me to value the
moment, because sometimes the moment is all we get.  And not only is that true for Aaron, it’s
also true for the rest of us, because time moves on, and life with it.  If I don’t take the time to make memories
with my family, those opportunities will be gone, and we won’t have the
memories to fall back on.  It’s the
little things that are really the big ones, like tucking my kids into bed at
night, reading with them, talking with my older kids about whatever. 

Miggy: 
Explain how your Aaron’s special need affects your day-to-day life?

Rebekah:  Oh, boy, not sure where to start here.  We have always been a fairly private
family.  But with Aaron’s trach and vent,
someone has to be available to respond to alarms on a 24-hour basis.  This means that we have a night nurse that
comes into our home, every night, to take care of him.  That was a big adjustment.  But we’ve been really blessed to have some
amazing nurses.  They’ve become close
friends of mine, and some of Aaron’s biggest cheerleaders. 

Also,
he’s proved many times that he can turn on a dime.  On more than one occasion, he’s been a touch
“off” and then we’re calling an ambulance 30 minutes later.  And other times, when he’s looking odd, he’s
just doing his thing.  Mostly, I think
it’s a matter of a heightened sense of awareness.  You can’t not respond if alarms are sounding.  There are the “false alarms” and we can
ignore the first or second time they sound, but if they continue, or there’s
more than one (like the ventilator and the oxygen sensor) we move quickly.  And there’s ALWAYS someone, even if it’s the
6-year-old, within hearing distance of his alarms.  And there’s always someone in the house who
has been trained to take care of his trach in an emergency.  It does kind of limit the number of people
who can babysit…            

Miggy: 
What are the biggest worries you face for your child?

Rebekah:  I would have to say, it’s still him getting
sick.  He does so very well, for quite a
while.  Then something like a cold can
land him in the ICU with the doc saying, “I’m not sure what else we can do for
him.”  We’ve been there, and it’s
scary.  And we will be again and there
will come the time that his pulmonary hypertension can’t be controlled, and my
heart will break all over again.

Miggy: 
Now for a lighter question, have you ever had any funny conversations/moments
you never imagined due to your special needs situations?  

Rebekah:  I find it funny when tweens/teens see
Aaron.  Little kids just stare, or they
come up and ask.  The older kids have
been taught it’s rude to stare, so they try to look while trying to pretend
they’re not looking.  ‘Cause there’s a
lot of stuff he’s attached too.  He
always travels with a large oxygen tank, a ventilator, a pulse oximeter (which
makes his toe glow red).  Sometimes
there’s also a suction machine, and a feeding pump.  I’ll smile at them and say, “You think you’re
the wired generation?  THIS is the wired
generation.”  They’ll laugh, the ice is
broken, and they either move on or start asking questions. 

Miggy: 
How can people best approach or respond to Aaron? Is there something you
wish other people knew so as to avoid awkward or hurtful situations?

Rebekah:  Just smile and say “hi”.  He loves to see people.  But PLEASE, don’t try to touch him.  I’ll stop you and it just feels awkward.  And don’t feel like my life is awful and you
have to feel sorry for me.  I’m feeling
pretty blessed to be able to know Aaron and be his mom.  But it’s okay to acknowledge that sometimes
it’s harder than it used to be.  Just
don’t think it’s always rotten.  Even
going up to the hospital (for clinic, not inpatient!) isn’t awful.  I get to see a lot of staff up there who have
become friends as well.

Miggy: 
What is the biggest lesson you’ve learned since becoming a trisomy 18
mom?

Rebekah:  I think I’ve learned to trust God a whole lot
more.  I’m kinda a control freak, always
have been.  But there’s really not a lot
I can control here.  So I just have to
trust that God wants the best for me, and He knows what is best for me, and
somehow, He’ll see me through it.

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I want to thank Rebecca for sharing her cutie-pa-toutie Aaron with us today.  I loved so much of what she had to say (oh wise mother of 9!).  I love the idea of her referring to Aaron’s “challenges” because challenges are meant to make you stronger, not destroy you.  I also like how she handles kids who stare–breaking the ice with a joke.  I too find that breaking the ice with other moms or older kids helps them feel more comfortable to start asking questions.  Thanks again Rebekah!  

As always if you or someone you know would like to be part of the special needs spotlight series please email me or have them email me at thislittlemiggy at gmail dot com.  

Have a great weekend!