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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Tuesday, October 14, 2014

brush your teeth

I've been contemplating this post for 14 days.  October is Down Syndrome Awareness month and as such many bloggers are writing beautiful stories about their lives and sharing their love for their babes with an extra chromosome that has enlightened their life and well I sat here thinking, REALLY?  I need to advocate on why this guy deserves to be here?
 It seems so odd, so redundant.  Like, 'Hey brush your teeth if you want to keep 'em!'.  But, that is our reality isn't it?  Wow.  It stuns me to think; that was me.  I had a 72 hour window of knowing I was about to give birth to a little baby with down syndrome.  All that swirled in my head was awful, horrible, tragic, life changing images.  Nothing positive.  Literally nothing.  It's disturbing really, because it isn't reality.  And that is where I like to dwell, in truth.  The truth is-he is a beautiful, happy, silly, sometimes a naughty little boy.  I didn't know that.  Our society wants to take anything worth working for, anything that is less than perfect, anything that will be a tad more difficult and say, "whoa- who wants that?!".  So, I didn't.  I wanted to run away.  I wanted out.  I can see how so many mama's make that choice.  I don't judge it, I completely understand it.  We are programmed with everything in our lives to find better, do better, for ourselves.  If your marriage doesn't make you happy, get a new one.  If you don't like your job, quit, life's too short.

But, in reality, life's treasures are earned, worked for and sometimes suffering is a part of that.  It wasn't difficult to fall in love with Nolan, that was the easiest part of this journey.  And I thought it would be difficult for others to do the same, and well, that was totally not true either, everyone I encounter loves Nolan.  Not because he has down syndrome.   Because he is Nolan.  He radiates love and acceptance.  He makes people smile, all people.  All of the time.  Our kids are shy, both Jeremy and I were shy as a kid and well not so much anymore, but Graham and Audrey definitely.  If you know our family, you are so happy when one of our children greets you with open arms, because it probably took 4 years of knowing them to do so. But, not Nolan, he runs and gives kisses and hugs freely.  He fills everyone's love tank daily. 

 As I sat in the hospital bed with his new little baby scent and soft baby skin.  It was perfect.  It was all that I dreamt of.  It was the world that I didn't want to take him into.  I remember hiding him in my baby carrier, hoping no one noticed.  Happy if anyone told me that he "didn't look like it".  Now I cringe at those thoughts.  Can't imagine being ashamed of my sweet boy.  But, I wasn't.  The world is.  The world see's him as less than, and therefor we all do.  That isn't right.  Forget fair, forget politically correct.  It isn't right.  He deserves your respect and love and attention like any of our children. 

Graham said to me this morning the first time ever that he just randomly brought it up, "If Nolan were regular (insert cringe here) would he like and be able to play Lego's?"  First of all we talked about what 'regular' meant and then I said that yes, he would be able to and probably like Lego's.  He then followed it up with, "I just wish one of the babies were 'regular'. So, I could play Lego's with them".  I cringed again, but understood his point.  The conversation quickly moved along, but it was swirling in my head today.  This is what I talked with him about tonight.  That we don't know how we are going to get along with our brothers or sisters.  That I barely talk to my sister and we are different people.  Doesn't mean she's bad or I am bad, just different.  It is a gift when we truly enjoy the same things and play the same games with each other regardless of our abilities.  And it's true. 
 There will be many more conversations I am sure about what is different or annoying about having brothers with disabilities.  But, we would do this anyway, with any brothers.  We all love and loathe numerous things about all kinds of people, their intellect has very little to do with it. 
 I can't say that I get the whole magical unicorns and rainbows of down syndrome.  I wouldn't preach it like that, because to me, it's a tough job raising kids.  It takes all of your heart and soul to try day in and day out to be the best you know how and whether or not they have an extra 21st or 9th chromosome doesn't really matter.  They still make you smile and melt and scream and shout. 

I thought and imagined that our family would be "different" that our friends wouldn't want to be with us anymore, because our kids weren't like theirs.  I know it sounds ridiculous to our friends.  Because it is ridiculous.  I wish I could take a mama with the news of any baby with struggles or differences and show her our life.  Our wonderful, beautiful life.  It's not because it's easy.   It's not because we are amazing.  It's a choice.  Happiness and love are choices and actions.  We live.  All of us.  All of the time.  We have fun and welcome all people into our home.  And if you were invited your would see we are a family, complicated, messy and so full of love (and stiff drinks!).  This life is all I dreamed it to be, the only missing piece is the rest of the world.  So, dreaming big and starting small with all of you. 

 So, yeah, brush your teeth if you want to keep them and love people for who they are and what they offer this world.  We are all just trying our best. 

Monday, August 18, 2014


Tonight, sitting in the candle lit darkness of our screen porch, surrounded by silence and sounds of nature; I thought it, something I never thought I would think again.  "I can't believe I am this lucky."  I didn't want to write this, didn't want to say it out loud to the universe.   Because, really, it seems like bragging or annoying in some way.  But, it's true.  I kissed 4 beautiful, perfectly, imperfect children to sleep tonight.  I sent a text to my traveling man with a heart as we kissed goodnight from afar.  And as I sat in the stillness the peace of right now rushed over me.  I really do have all that I have ever wanted right here, right now.  You spend your life forming images and dreams of what your life may look like.  I can't say that mine looks the way I imagined or dreamt of, in fact it is so much better.  It is rich, deep and full of life.  This past weekend I had a girls night with some of my favorite people and it reminded me what this journey is about.  A give and a take between friends, connecting through pain and tears, also through shannanigans and laughter.  It was perfectly imperfect.  We all were that night.  Each with our own stories of pain and triumph.  Gifts that we bring the world and our families each day.  I admire each of them in so many different ways.  So lucky I am to know them and call them friends. 

I sit and miss my husband, truly my heart aches thinking of him gone, even for a couple of days.  After 15 years.  He is my rock.  He knows every side of me, the nitty gritty.  We don't sugar coat things and we bicker like teenagers.  But, we also love like teenagers, after 15 years. It's a connection, undeniable.  It can't be spelled out, our story too rich in details to ever be simplified in a few paragraphs.  It's what I love about us.  Our journey wasn't and isn't easy, bumps all over our road map.  And still we are together.  So lucky. 

I took Graham to dinner tonight, just him and I.  It was so glorious, talking to him about life and table manners at a fancy restaurant.  Watching him thank the waitress and say he should change from his t-shirt if we were going to a grown-up place.  He is growing up.  We laughed and walked on the river and he said things like, "next time we should just sit down by the water and have a picnic and watch the water....Nolan would love it, let's bring Nolan."  I said to him, do you ever wish Nolan was different?  That he could talk to you and do more?  He said, "NO of course NOT!  I love Nolan just the way he is, he will talk to me one day and even if I don't like legos when he finally does, I will play them with him and it'll be fun."  He's a winner this kid.  He melts my heart.

I arrived home to our soon to be 7 year old and she was playing with her brothers.  Carefully choosing toys that each one would like all while turning a blank book that we got into a Curious George story written and illustrated by her for Nolan for his soon to be 4th birthday.  Imagine that?  She has a birthday 6 days away and thinking of his.  Lucky.  Very lucky.  In her story that is almost finished, George gets to eat ice cream and look at fish, all the things Nolan loves to do.

I went to take Nolan up to bed and said say good night Nolan and Audrey came screaming over, "NOOOO!"  I had a slight heart palpation and then she said,  "I need to hug him goodnight!"  He jumped out of my arms and they hugged tightly, their little hands tapping each others backs.  She blew him kisses up the staircase and he blew them back.  Perfect isn't it?

It's just the same with our little bouncing boy EJ, so many kisses and hugs all day, every day.  He is lavished in love.  What was I so worried about?  What was so scary?  Life? Love?  I am so lucky.  I am that girl that has everything I always wanted.  Funny how on a random Monday that can happen.  Perspective is a beautiful thing.  Let's hope I keep that going past 10 am tomorrow, HA- didn't say I appreciate it all- in between the screaming, fighting and general chaos around here. But, it feels good to know I can feel lucky.  I am.