Tuesday, September 8, 2015


The day started amazing.  Kids were all in great moods ready to head for the 2nd week of school.  Nolan still as excited as last week with his big backpack on, a grin and waiting for the bus, another day at his "practice" Kindergarten, we are doing two years of K, since he is so young.  EJ slept late and woke up happy as can be, a rarity for him.  It is gorgeous and 70 degrees outside. EJ's big day, starting preschool officially.  I took the adorable front stair photo and he was all grins.

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 I smooched him up and down and appreciated our moment together alone, since all the others had already left on their bus.  Grabbed his lovie just in case he needed an extra snuggle, put it in his backpack with his name proudly monogrammed.  We put on his AFO's (braces for his feet); he can't stand them because I don't really ever make him wear them, I figure he will walk in his own time.

We park and arrive 5 mins prior to class beginning, I am greeted by the Special Ed Director, who took over the program about 2 years ago and has done an exceptional job and is a joy to be around.  I told her such and we chatted about the great changes in the program since Nolan started there.  This will be a mixed class, typical children and 3 children with special needs, EJ being one of them.  We walked by all of the students waiting anxiously with their parents and got to go in a bit earlier to see the space and chat with EJ's amazing teacher, she seriously couldn't be more kind.  I had no feelings of sadness or envy walking by all of the typical 3 year olds.  I had no experience of wondering what this day would feel like..."if only."  I am pleased to say I was at complete peace.  There he sat, so adorable and smiling to everyone, brave and happy, not clingy or grunting to be picked up, which he typically does.  It was far better than I could have imagined.

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As I filled out one last form, a little girl sat right next to him and her mom backed up to get a picture of her at her spot.  I noticed she may have Down Syndrome and thought, well won't that be great for EJ, a friend with similar abilities, some children are much more involved and some much more advanced in these classes.  I remember the doctor telling us the day after we found out EJ had Trisomy 9 Mosaciscm,  that Nolan would be more advanced than EJ, he would need more help.  I couldn't swallow that then.  Couldn't imagine anyone needing even MORE help than Nolan at the time.  Now, well, it's become our life.  And in all honesty, I felt like EJ has been doing really well.  He follows simple instructions, go get a bowl, grab a book and he knows what he likes and doesn't.  He can't walk, but he cruises and scoots everywhere.  He can't talk, but knows some signs.  We were progressing fine.  So, I smiled and saw her name, asked her mama if she had DS and informed her that our son Nolan did as well, EJ's brother.  She was kind and up came the little girl, walking confidently over to us, after hanging up her own backpack and giving everyone high fives, including me.  Someone asked her name and she spoke it clearly and enthusiastically.  My heart sank and began beating at top speed.  I was flush and felt like throwing up.  I glanced over at the boy I just moments ago was admiring and found myself staring at all the things he couldn't do.  He was still sitting on the bench looking around, only now all I saw was that he couldn't get down.  Couldn't speak to ask for help or say mama even.  Instead of seeing my sweet, content boy, I saw a boy that wasn't capable.

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I looked everywhere for an emergency exit, knowing my mommy meltdown was coming.  I confidently and completely faked the rest of the next 5 minutes.  As I heard the little girl's mom explain to her that if she needs to go potty to say potty, which she clearly said, "potty."  Wow, potty training too? So she is more advanced than Nolan too.  Wow, I have really failed my boys.  I have really dropped the ball. All that was running through my head was the following: "What have you been doing Grace? What was more important than helping your boys develop? How could you have been so selfish with your time?  And here you were feeling on top of the world, how dumb."

I got to my car and was stunned, totally unprepared to have those feelings railroad me and so strongly.  My moms of kids with special needs will know, this is it, these moments that just take your breath away and you never know when they are going to happen.  It's awful.  I started crying and called Jeremy who was on a plane with the door closing, so I simply blurted out that I have ruined our kids lives and suck as a mom and I have to go anyway and hung up.  Which I am sure he totally appreciated.  Moments later, my phone beeped.  Jeremy sent a text simply and perfectly stating, "Love- e and nol aren't that little girl.  Just like G wouldn't like or play baseball until he was ready, please don't beat yourself up.  They will develop as much as they can when they are ready."
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It soothed my guilt and blame for a moment and still it kept churning in my head, what if my theory of kids developing when they want regardless of tons of therapy is wrong and I held Nolan and EJ back from developing skills that will help them for the rest of their life.  If I had just done more.  I sent a text to one of EJ's first therapists- we have developed a friendship and I so appreciate her.  She immediately called and I burst into tears, explaining what happened.  I said to her what I believe to be true, that having kids with special needs is different because we are taught we can change the outcome of their lives based on therapies, basically our efforts.  She explained her own life and children's sports for instance when she thought she could've done more, hired another private coach, advanced her children in areas they loved because the other parents were doing it and she didn't want them to fall behind and lose the chance to do what they loved.  That her friends would tell her that she should have in fact done more.  It is all so messed up isn't it?  We got off the phone and I felt so much better, realizing this is just life.  It's not OUR life that is isolated with these issues anymore than anyone else.  It's just different.

It also struck me two of my favorite quotes both came into play today.  "Comparison is the thief of joy." and   "Perception is reality."  So I bucked up and realized how lucky we are in all we do have, and all of our children may do things or not do things throughout their lives that we will surely wish were different, but in the end, it's not about us.  It's not about measuring accomplishments, it's not about potty training the fastest, speaking the most words, being the best baseball player or an amazing student.  Life is about connections; and EJ is great at that!  I am happy to report he had an amazing first day, no need for his lovie, played happily with the kids around him and smiled at everyone. Just another bump on the roller coaster. 

I will leave you with what has been making me smile, ear to ear, since it happened, our annual end of summer birthday celebration for Nolan and EJ.

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