Friday, September 28, 2012

Special Needs Spotlight: Aaron



I’m Rebekah, mom to nine (yes, 9!) kids, ages almost 21 to 27 months.  Our youngest, Aaron, has full Trisomy 18.  It’s not a terribly uncommon diagnosis, but it is uncommon for them to survive pregnancy, birth, and more than the first few days of life.  Aaron is thriving and rocking that extra chromosome.  He’s learning to sit up and roll over.   He’s a champion smiler and loves to whack at his toys!  He was trached at four months and is vent dependent 24/7, but has recently started weaning off the vent a few hours a day.  He’s also g-tube fed.  He has endured heart failure, airway collapse, a few pneumonias, and several respiratory infections.  But this kid just doesn’t quit.  We decided that he’s in the driver’s seat, and as long as he wants to fight, we’ll fight along with him.  He’s our hero.  You can read more about him on my blog at Compatible With Joy – Trisomy 18.


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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!  

3 comments:

  1. This was very uplifting, thank you!

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  2. Thank you for sharing this!

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  3. What a sweet, smiling, little guy! He is clearly very loved. And he looks like he knows it, too! :)

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