Monday, February 27, 2012

An Interesting Dichotomy - Okay

I've had thoughts running around my head for the past couple weeks that I'm hoping to organize here.  I'm hoping that by putting them down, I might be able to make sense of them.

In my "past life", when I would see a pregnant woman (if it registered), my thought was, "How fun!  How exciting!"  If I knew her, it might be "Hm, boy or girl?  When?"  Now, I think I see all of them and my first thought is, "oh, I hope everything's okay."  What's that for?  That thought NEVER crossed my mind pre-Aaron.

Then there's the "okay" factor.  No, in most people's minds, Aaron is NOT "okay".  I addressed this almost a year ago when I ran into a soccer mom friend at the hospital and she asked if my baby was going to be okay.  He is never, in this life, going to be "okay."  But if you look at the broad scheme of things, this kid is more "okay" than I'll ever be.  And because of him, my family and I are becoming more and more "okay."

So here's where I find myself.  I hope and pray that a baby will be born with all the chromosomes paired up correctly, all the right size and all in the right place.  I pray that there won't be trauma associated that would cause them to be oxygen deprived. I pray the family won't know the heartache and pain of losing a child.

BUT, without Aaron's extra chromosome (we think it's an extra love chromosome) we wouldn't enjoy the special blessings he brings to our home.  We wouldn't have the joy and peace that comes with him.  So, in hoping and praying for others to be spared the pain, am I hoping to deny them blessings?  See the dichotomy?  Through pain and suffering, we grow and are blessed.  We become more like our Savior.  And isn't that the whole point of this life?

So, I guess where I'm going with this is, some people feel sorry for us, and for Aaron.  On the other hand, I feel so incredibly blessed to have a Heavenly Father who was willing to send him to us.  Yeah, some things with him are hard.  It has changed our lives here, quite significantly.  But growth never comes without stretching.  And he is stretching me into a much better person.  The love and the joy and the peace that he brings to our home is immeasurable.

On the Aaron front itself, here's what he's currently up to.

This past weekend was a big ballroom competition that our school cosponsors with another high school.  My nurse Friday evening was sick, so we just loaded Aaron up and took him with us.  It wasn't crowded in the concessions area where I was spending most of the evening, and even in the comp room, everyone was focused on the floor, and not the kid in the wheelchair.  So it was all good.  He had a great time, and this kid, this deaf kid, was moving to the music.  In the gym, I think it was too overwhelming.  All the people, colors, movement, etc.  But in the cafeteria, it was much less so.  And the music was really just background.  But Aaron loved it.  He was moving with the beat and smiling the whole time.  I meant to take a picture of him, but forgot until I was putting him back in bed at 11 p.m.  Oops.

On Wednesday, we add (yet another) specialist to his list.  His labs have come back hypothyroid.  Finally, a family issue and not a trisomy one.  There doesn't seem to be many thyroid issues in trisomy but my family has a large history of stubborn thyroids.  So endocrinology, here we come.

Then Friday, we have a marathon day at the hospital.  He'll have a brain MRI, two ultrasounds, and some bladder/kidney tests (VCUG).  We check in at 9:30 and see the doctor at 3:30 after all the testing is done.  Yeah, it'll be a long one.

But our little guy just keeps on smiling and going.  We've had all sorts of yuck here lately.  I even caught the cold in a big way.  But we've tried really hard to keep the germs away from Aaron and he's doing fantastic.  Happy, smiley, drooley, (teeth!) and loving life.  Just the way we like it.


  1. I have these same thoughts and conclusions when I see pregnant women! Plus one other thought I've had - perhaps children with T-18 see it as a blessing. They get to go to heaven and have all the glory that goes with that so much sooner than most of us. Lilly may one day tell me "I'm so glad I had Trisomy 18! I got to be with Jesus so much longer than you!" (OK makes me tear up to think about.) I sort of feel a confusion about how to pray for pregnant women. I'm so glad I'm not the only one who has all these conflicting thoughts! Thank you for your post Rebekah!

  2. wow! my thought exactly! whenever i see a pregnant mom, i want to tell her about Share and what i do in case anything happens to her baby. of course i would NEVER want anyone to lose a baby, but i want them to know about what Share does. i thought it was morbid that i was having those thoughts.