Tuesday, March 19, 2019

T18 Siblings and Life Lessons

Yesterday was Trisomy 18 Awareness Day.  Did I get pictures?  Not really, sorry.

Missionaries in Alexandria, LA
wearing blue for T18.

But his siblings wore blue.

His brother on a mission for The Church of Jesus Christ of Latter-day Saints (Mormons) even got his district to wear blue.  It was their P-day (preparation day, which means laundry, shopping, cleaning, etc) day, so they're wearing casual clothes, but he sent me pics.  ('Cause like I said, I didn't get them taken.)

Before he was born, Aaron's siblings (you know, those kids who were already here) had (relatively) normal lives, did sports, music, school stuff and had a mom who was involved with all of it.

Guess what, it's still that way, mostly.

When Aaron was born, and then when he was trached, I was told point-blank that he would ruin their lives.  It would be too hard on them to have a brother with such significant disabilities.  That Aaron would be too needy, it would be too hard.  Basically, it was wrong of us to try to make this work.

This is a common theme.  Parents are often told it's just not fair to the family to bring such hardship into their lives, especially if they have other children.

And it was hard, and it IS hard.  It's hard for them.  It's hard for us.  But you know what?  There were things that were hard before he was born, things they struggled with as kids, that we struggled with as parents.  If someone doesn't have difficult things in their lives, well, I guess they're wrapped in cotton and bubble wrap, and frankly, they're probably pretty boring too.  But honestly, I don't know anyone like that.

Ask a parent, any parent what kind of life lessons they really hope their kids learn, learn so that they're an intrinsic part of their fiber.  I'd be willing to bet that finding happiness, fostering close relationships, persevering, learning to overcome would be top of the list.

I asked my kids what lessons they've learned about themselves, or about life from Aaron.  What he's taught them.  Guess what they said?

Michael (12)  "He's taught me to always be happy.  He's fun to play with.  And he likes it when I bounce his yellow ball off his head.  He never gets mad at me."

Andrew (15)  "You can be happy even when things are hard or aren't fun."

Joseph (18)  "He is a rock. When I was preparing to serve I was really wanting to know that what I had been taught was actually the truth because I don't want to be saying things that aren't true. I wanted to know what was going to happen to him. I had always been taught that he already had his ticket. I really came to know for certain when I asked a preacher down here what he thought about it. What he said chilled me and solidified in my mind that a loving Heavenly Father would not send one of his children to hell because they are not able to be baptized. He told me in a very round about way that Aaron was going to hell. I thanked him for his opinion. We were in a recent convert's house and she asked me if that helped me and I said, "No, I already know where he's going." Growing up with him was a great way for me to "grow-up" quicker and mature quicker. I took more responsibility for my actions because of it and I always want to be there for him because he's my brother."

Matthew (20) "He's my inspiration for staying optimistic, no matter how difficult my circumstances are."

Jonny (23) "Aaron has taught me that you can live a happy life even while suffering through painful trials that are not your fault."

David (25)  "Aaron has taught me to persevere with a smile."
Mary (26) "Aaron has taught me how to hold onto faith and work through my fear.  Helping to care for him has pushed me to work through my discomforts to serve others.  He has taught me to greet my challenges with a smile (even though I still struggle with this) and how to take a deep breath when I am overwhelmed.  I have learned more about love from him than I thought I could.  So much of my life and worth is measured in how I contribute to my job and to society, but with Aaron, I have learned  how to value more the unseen contributions that shape how I  treat other people and the value I grant myself and others.

Deborah (27)  He brought our family closer than we've ever been before."

Yep, definitely ruined these kids.

Now, does this mean that life has been awesome for them?  Does it mean that they haven't struggled from time to time?  No, not at all.  We managed to somehow keep their activities going, but due in large part to a lot of support from other teammate's parents.  Mom hasn't been to nearly the number of soccer games as before, and has also missed concerts and other events.  Aaron has managed to land in the hospital on the major holidays, and most (if not all) the family birthdays at one point or another.  Sometimes it is hard!

But last week when my eighth grade girls were bemoaning combining with a seventh grade boys PE class, I started telling them about one of those little "Sevie" boys.  Told them that he saved his brother's life on more than one occasion.  That as a little preschooler, he knew his numbers between 80 and 100 before he knew 1-20.  That he was able to change out a trach, draw up meds with a needle and syringe, and give feedings through a tube in the stomach.  And they were pretty impressed!  (Although they still weren't jazzed about combining classes.)  

But look at what Aaron's siblings have learned.  Isn't this what we really want for today's kids?  Aren't these the kinds of lessons that today's youth (and today's adults!) need to know?  Happiness is what you make of it.  You're responsible for yourself and for others.  Look out for one another.  Life might not be what you hoped for, it might be hard, but you can still find joy.    And family is everything.

Now for a quick update about what's been happening here:  

When I last wrote, I talked about how Aaron had gotten sick, and with a pretty nasty virus at that.  But guess what??  He. Stayed. HOME!  We went through the usual ups and downs, but where we could handle it.  His pulmonary hypertension kicked in right on schedule, which also was a challenge, but one we could handle.  I think we might have bagged him a couple times, but that was all.  He really did well, and I have to think it was the change in food that let us deal with it here.

I did manage to get the flu about ten days ago.  THAT was miserable!  I pretty much lived either in my bed or on the couch for four days while Tamiflu worked it's magic.  If I had to go in Aaron's room, I gloved, masked and wore a robe that I only put on in there.  And I think we're far enough out that it's safe to say I didn't give it to anyone else.  Thank goodness.

And I think that brings us up to speed.  

Show me someone who has done something worthwhile, and I'll show you someone who has overcome adversity. 
Lou Holtz

1 comment:

  1. Lily wasn't a Trisomy kid, but her life was so close I've come to think of her as a kind of Trisomy cousin.

    We were warned (much more compassionately!) to expect and even preempt jealousy from her big sister. To make sure to do everything possible to meet her needs. Because Lily was born when I was only 25, we were also advised to wait a little longer before having another baby so that baby's needs in infancy could be met as much as possible.

    But in no way did having Lily "ruin" the lives of either of her sisters.

    In fact, if I ask Lorelei about it, the only thing she would say felt like ruining her life was losing Lily. Losing her little sister, her best friend, her confidant. Losing the person she wants to share every victory and every defeat with.

    Losing all the chaos, the unpredictability, the quarantine; losing the "did we get it all?", another hospital holiday, experiencing time and again being placed back burner because of another emergency... losing all of THAT is how Lily's big sister defines having her life ruined.

    It really makes you ponder how little those people knew to say these special souls ruin families to see siblings grow up with such deep compassion.