Thursday, August 7, 2014

Benny Will Be An Adult With Down Syndrome

Mark and I had the wonderful opportunity tonight to witness his little brother Scottie graduate.  Scottie has a chromosomal disorder where he has an extra X and an extra Y chromosome. He also has Aspergers.  He is 27 years old and graduated from Lutz School for Work Experience.  He was so proud today nervously making his speech in front of all those people.  We were all so proud of him.  I, of course, had to listen from the hallway because somebody decided it was time for some milk.

Scottie's school is filled with wonderful people that all have to work a little harder at things than most. There are a lot of people with Down syndrome, for example, that graduated with my little bro-in-law today.  What an amazing group of individuals!   It was a very inspiring night, and I am so glad we all got to be there to hear Scottie talk about what he wants to do with his life now that he has graduated.

After the certificates were given out, they went around to each graduate and each read a speech they had prepared thanking their family, friends, and teachers.  They also spoke of what they saw themselves doing with their lives after this moment.  This is where it happened.  This is where I had another ... moment.  As the graduates, each with differing degrees of struggle with reading out loud in front of hundreds of people, read through their thank you speeches, they showed pictures of them now and from when they were babies on the screen.  As I watched each baby face on the big screen change to a picture from today, I listened to the hopes and dreams of all these 27 year old souls and I realized something.  Benny is not going to be a baby forever...

Yes, I know that every mother has this moment of panic at some point.  Your baby is going to grow up and it's sad.  But...this was different.  This wasn't a, "I don't want my baby to grow up!" moment.  This was a, "My baby is going to grow up and be a full blown adult with Down syndrome." moment.  Each person in that group of graduates read their speeches, and each person struggled differently than the others...but they all struggled.  It was like every struggle Benny may or may not have as he progresses through the years was hitting me in the face at the same time.

I don't know why, but listening to those speeches and looking at those baby pictures caused a mild panic in me.  I found emotions running through me that I haven't felt since before Ben was born.  I had a moment of fear.  Fear of the unknown.  I wondered immediately if I was good enough. Am I a good enough mother to prepare him for the world?  Sure, I can make decisions now and feel like a bad ass that include things like breastfeeding and vaccinations, but how am I going to react when it come to adult situations? What will I do to help him be independent, hold a job, even just get to places on his own?  HOW will I do all that?  And...what do I do if he just can't?  Will it be my fault?  Will it be my failure? Will Ben be the witty man giving the speech about how he has been accepted to college in North Carolina, or will he be the sweet man that struggled greatly to get through a sentence thanking his mother for all she's done?

Will any of that even matter???

As I sat in the hallway outside of the banquet hall having this moment, eyes overflowing with tears, I looked down at my little man nursing away.  Every time the crowd clapped he would flap his arms and smile, causing milk to run down both sides of his face making the cutest mess ever.  I immediately felt calmer as I looked into those beautiful, blue, brushfield spotted eyes.  I gathered up my handsome little dude and walked back into the hall.

This time, I didn't look at the speaking graduates.  Instead, I looked at my future.  I looked into the faces of the crowd filled with adoring parents, caregivers, and teachers.  There wasn't a dry eye in the place. I am surprised that room could contain the amount of pride that was flowing out of it.  Everyone was so happy, so full of joy.

I realized at that moment that this was another milestone for them. This was another celebration no matter how big or how small. Just like I felt when my boy finally rolled over at the ripe age of 10 months, they feel overjoyed watching their babies move into the next chapter of their lives.  It didn't matter which speech the were giving or how they were giving it.  All that mattered was that they were here.

I walked back over to my family and sat down.  My little Benjamin smiling, and drooling, and getting so excited every time the crowd clapped until finally Scottie walked over to my Mother-in-law, fancy framed Certificate in hand, to show her what he got.  He looked at us and said, "I was so nervous! That was a lot of people.  I was good once I thought about my girlfriend though. Then I did good, don't you think?"

Yeah Buddy, you did really good.  I think you did amazing, and one day Benny will too.  I'll make sure of it.

1 comment:

  1. Yes! That feeling, those moments. The "this is forever" moment of panic. I hear you loud and clear an know how hard that can feel, especially when it happens out of nowhere. I am inspired by the way you came through the other side of it and looked at the reality of the joy versus the doom and gloom. Thank you for sharing and beautifully said.


Would love to hear your thought, comments, advice, or emotional outbursts!

-xoxo Jamie