Monthly Archives: October 2019

Oh Augie, my baby, how you steadily undo me …with your clever demands, delicious words and looks that I get lost in.

You exhaust us easily in the way that you know yourself so well. But, in the midst of our exasperation, you should know how well your traits shall serve you.

The way you crawl into our bed, carrying your bunnies behind you. You are a problem solver. You will not complacently allow yourself to be frightened. You continue (and continue) to fight and wail when you are scared. You demand help. I shall never worry about you holding your own if you ,God forbid, meet an unsavory character on the path of life.

You ask for what you desire on repeat.  You know what your needs are and you will not waiver in the slightest bit from the thing that is holding your words hostage.  This will always serve you to be strong in your convictions.  May you hold your stance always the way that you do now.  I see you fighting for what is just and to be honest, it eases my mind a bit about how things will go when I am unable to lead you.

Your sense of style must not be messed with.  You will not be told what Halloween costume you will wear or what shirt goes best with your courdoroys.  You have many pairs of shoes and always wear the ones that fit your mood.   This tells me about your sense of self.  You are not wishy washy in your ways the way I was. You are certain about who you are and will always know the way you want to feel in the morning when you walk out the door.

You consistently ask for a bite of whatever thing me or daddy are eating at any particular time. You will not give up until you get to try our food, sometimes eating more of it than we do.  This tells me you are adventerous and willing to try new things.  You will enter the swirls of life knowing you have options and I know you will hold on to the ones that make you happy.

Your vocabulary is so adorably and eloquently developed.  And you know just how to use those baby blues to compliment your request.  The way you shout “hi” to everyone you meet and give them your undivided attention screams that you will always work well with others.

And let’s talk about you and your brothers.  Being the third is tough.  You get teased, you get hand me downs, and you will yourself to keep up with the gang.  Currently I am watching you surpass your older brother Judah. You fight back now and you hold your own….. but I also see the fierce loyalty you have for him too.  You help him to make good decions and make sure he’s following your bad ones (like jumping off the couch.)  The bond that you have formed with Calvin and Judah will be unbreakable.  I see it from the outside so clearly.  You are this magnetic personality that draws your brothers to you.  You are the glue little darling. The firey, unapologetic, hilarious glue.

I sometimes feel sad that someday the weight of caring for Judah may fall on yours and Calvin’s shoulders. But I know you will handle it all with passionate persistance….the way you handle everything.

You see my sweets. Your mighty personality sometimes gets the best of us.  It is certainly not to be overlooked.  But the things about you that make us beserk are the very things that make your soul so beautiful.   

Happy 3rd birthday Augie.  Life is so much more charming with you in it. I love you sweet boy.


Dear My fellow Moms and Dads,

I believe that we all want the same thing when it comes to our precious children. Whether we breastfeed or bottle-feed, home school, put them on that scary yellow bus, or wave goodbye from the carpool lane. Whether we work or we don’t, give time outs or not, buy from the organic section or keep them on a steady cycle of almost-real chicken nuggets. Whether we go gluten free and media free, or hand them a TV dinner in front of their coveted IPAD . Whether we hover or let them maneuver down the tallest and twistiest of slides. Whether we’re, fresh off of a Pinterest board, completely winging it, rich or poor, typical or not; we all want what’s best for our babies. This is the truest thing I’ve ever known. From my city school teaching experiences to the journey as a special needs mom; the loves parent has for their child is palpable. It is unwavering and it is fierce, no matter what tools we have to work with. We all want our kids to be loved and have friends. We want them to remain the kind, confident, little magic makers that made them believe they would conquer the world as toddlers. And so we all are just doing our best out there, paving the road for the wee ones who own our heart. That’s why we try so hard to preserve them as the ones they are; without fear, hurt or sadness…..

But Mamas and Papas, Occasionally we overcompensate in a desire to protect. I know I do. Without thinking, I sometimes gasp at a mini boo-boo, scaring my child into believing a red-stained, skinned knee is tragedy.

I use this example because it reminds me of when your child stares at mine. I am aware of it every. Single. Time. You see, like you, I am on high alert. I too worry my child will encounter sadness, hurt or fear. And knowing what I know, about the sometimes unforgiving world out there, I also am on the defense.

But my defense is not what you may think… I am armed with a kind smile, a wealth of information (if you want it) and a warm welcome into part of my world.

So please, don’t have your child turn away from mine in an effort to be polite. I get your goodwill, I so get it. I once did not have a child with disability and I still remember averting my eyes.

But, sweet parents, your efforts are backfiring. They make your child fear mine; the way a gasp makes my kid fear a scrape. There’s too much protecting and not enough inquiry. Don’t worry, we don’t mind the questions. There is nothing more innocent and pure than a question from a child. You know that….and so do we. We aren’t sad and we aren’t attempting to hide our beloved. Actually, we are trying to show him or her to the world.

So, here’s where you can help. You can have your child say hello to mine, maybe even have them high-five. And you can always give us parents a knowing wink or smile. One that says: we get it, we see you fellow parent. We are out here loving our children just like you.

In Solidarity,

Beth


We weren’t going to go to the Gala this year. I wasn’t speaking in front of the hundreds of people supporting GiGi’s. Judah’s picture wasn’t there welcoming guests.. I wasn’t on the volunteer committee. I had no hand in the preparation pot what-so-ever and so this year we were going to skip it. Am I glad we didn’t …..

I came in crying. We recently found out Judah has traits that are congruent with autism. And, as with his Down syndrome diagnosis , it is a pill stuck in my throat. I want to go back. I wanted to be at last years Gala when I thought Judah could be anything, not this one where I am constantly wondering things like , will he ever call me mama?

It was hard and raw to walk up that staircase. The butterfly was back. The one that fluttered around my belly when we went to our first World Down syndrome day at the mall. I wondered if I could even do this thing, and all the same, I knew I needed to.

The first thing that caught my eye was David’s picture and I couldn’t help thinking about his mom. I was betting that she would give anything to hug and kiss her boy one more time.

How dare I be sad about my son’s new diagnosis?

Next Bobby and I found out we were sitting at the same table as a couple we met our first year. They were like us. They liked to laugh and be light . We are huge fans of the fun they are and even bigger fans of their strength. You see, they lost their little Bella when she was just a few months old. They barely got to even soak in that extra chromosome. And they were still HERE supporting GiGi’s.

How dare I even sulk a little?

The difference between the autism diagnosis and my catapult into the world of Down syndrome, is that this time I knew I had people. And I found my way to them as soon as we got there. I knew their words like “he is still just Judah” and “we still love him” would save me. I also knew that the way my desperation was met with loving nonchalance meant that this was no big deal. And so through loving listening from friends… and some heart breaking reminders of why I should be grateful….I moved on.

I moved on to remember why we were there.

The video from National bringing so many tears. As one man said:

We all deserve love and to be included., We all deserve to be valued, respected, and to be independent

In fact, this video was so inspiring that radio personality and MC for the evening, Skip Clark, was moved enough to bring his son Zach to the podium. He shouted admiration for his boy and the crowd’s eyes began to rain.

Self advocate Bill made a speech that reminded me how fun this life is.

He beamed about how being a part of GiGis makes him feel proud and then offered give anyone a tour of the Playhouse. He concluded with an invitation to meet him on the dance floor….which did not disappoint by the way.

I remembered how much purpose GiGi’s gives us as Emmit’s mom recounted a doctor suggesting she have an abortion. I couldn’t help but think about all of the work that we still need to do. I couldn’t help wishing every person in the world had an opportunity to be welcomed into the room; that they got to hear this mom profess her love through tears. For they would surely feel what we were feeling. We were all shaking our heads yes with this momma through blurry eyes. We all felt the importance and value of the people we were fighting for . I had to immediately hug her after because rather than wallowing, I once again was ecstatic to be a part of this journey…whatever it may look like.

And as Bobby and I waited in the wings so that I could embrace this beautiful new mama, he and I locked eyes and both emphatically said “this is our thing”

This will always be our thing. Loving and supporting GiGi’s gives us so much more than we could ever give them. It is a sense of commaradarie , purpose, and ultimately, amidst some trials and tribulations; it is also pure joy.

Well we let that joy carry us right on through the rest of the night.

We took lots of pictures. We hit up the photo booth with the best table mates a couple could ask for ; Erica and Jim. We happily bid way too much money on a popcorn maker for our kids. We happily drank too much as we chatted up old friends and made new ones. We talked shop and bonded over commonalities. We made good on our vow to dance with Bill. We swooned over littles with something extra. We ate lots of cookies. We celebrated Sarah who pulled off an amazing feat and greeted new board members with hopeful hugs. We grinned straight until our heads hit the pillow and never one more time did we feel mournful.

GiG’s does that to you. It leaves you ambitious to volunteer, eager to donate, grateful to be a part of it all. It’s the antidote to what ails you. It’s the cure for common casualness. It is the gift that keeps on giving. Never will I ever miss an opportunity to be there for GiGi’s. Not when they have spent so much time saving my soul.