Staring

Staring....

Is it ever okay to stare?  I mean I have, does that make me a horrible person?  Every time I gave birth to one of my kids I couldn't stop staring at them.  They were absolutely beautiful to look at and absolutely awe-inspiring because somehow between the two of us Eric and I had made amazing, beautiful babies.  What a gift!  And then with Bradley there was more staring, he was A BOY!  I did not know what to do with a boy, I had only raised girls thus far, so to say I was nervous and intimidated to suddenly be thinking about raising a boy is an understatement.  I was perfectly willing to hand this little bundle to his dad and wish them both luck.  I mean, Eric is way more qualified in this area than I am, so it seemed logical.  Well, until he got here, and as I stared at his perfect little face and held his warm little body that had finally, if temporarily, stopped kicking me...well, it seemed likely I might not hand him over completely.  When he didn't nurse well, that sort of sealed our fate, Bradley and I.  I don't take too kindly to failing at something, so I was determined that I would do all I could help him learn to nurse.  If he couldn't do it, so be it...but it wouldn't be for lack of my effort.

Bradley had a couple other things going on too, and I stared at that.  They said he had Down syndrome, I stared and stared looking for it.  I gazed into this big blue eyes and there was so much in them...knowledge, understanding and love that there were times I would forget what I was looking for.  But over time we would start to see it, but more than one person just asked if the docs, if we were sure...they just couldn't see it.  It wasn't like he was wearing a sign, if he'd been wearing a sign it would have been one for Jaundice...cause when I looked for it, I saw that.  And he had this cyst on his hand and on his toe.  And in the grand mix of emotions and 'things' going on with Bradley I wasn't too worried, but I was aware of them.  And when my Dermatologist came and looked and told me that they would go away and had nothing to do with my little bout of cancer - I released a breath I should have been holding.  I hadn't thought of that, I hadn't had time to worry about that possibility.

I stared at Eric a lot.  Watched as his Grizzly Adams beard came in...watched as he rocked our son.  I watched as he told Bradley all the cool things they were going to do together as he grew up.  I watched him tell our son that he is "Daddy's Buddy!"  I watched him tell our son he loved him, and I watched him love him.  I couldn't tear my eyes away.

Fast forward a few years...Bradley lying in a PICU, tubes everywhere.  Horrifying to my mommy eyes.  I tried not to cry, and for the most part I didn't give in to tears...I held it together pretty well.  But did I stare at my son?  Yes, long and hard.  I took in every breath, every movement.  I stared at the new g-tube button that marred his perfect belly with it's big ugly presence.  I tried to see it as the ally it was meant to be....but that took time.  But deep inside, after moments passed and this image of my son took the place of our old image, I began to see Bradley and I chose to see the potential for his survival.  I knew all the things that could go wrong.  I had been told why we shouldn't do the surgery when they wanted to postpone the first time.  Now this second time, I knew what could go wrong and I knew we had to try anyway because he wasn't going to survive without the surgery.  Our new normal.  Our new chance at life, but just a little more different than we'd begun to realize when he was born different.

So about the staring...in all things there are at least two ways to approach a subject, a problem.  Some parents choose to yell at anyone that stares at their kid, some choose to ignore...some choose to educate...There you go...at least two ways and I gave you three.  Maybe we need four, understanding. Understanding that the price of an exceptionally wonderful child is that he or she might look a little different. We don't mind if our child is stared at because he or she is beautiful.  It's something in the look, the observers expression that is our biggest issue.  Are they finding fault with my child?  Me?  How should I react?  I get why parents yell at people for staring.  When someone is looking at your child with disgust, or dislike...there's a positively primitive part of me that wants to blacken both their eyes.  Perhaps this is not natural to anyone but me and perhaps I need anger management...not sure...  But why lie?  I don't want you to disparage my children, I want all three of them to be looked at with respect and kindness.  And let's face it, I yell at a kid because he stares at my son and that kid walks away scared...of me, of Bradley, of people who are like Bradley.  Yeah, that helped in the whole world of acceptance now didn't it?  And in the process I just became a different type of bully.  Nope, yelling is out.  Another part of me just wants to ignore like some parents do.  They don't understand, so they stare.  And yet, I also want to educate which is way easier when the parents aren't around.  Kids get an explanation, process it, ask natural questions, accept the answers and are pretty accepting of Bradley.  When the parent is around the kids ask the questions, get the answers then take a cue from their parent.  Sadly, that cue is often a look of disgust, unease, dislike...that 'glad that happened to your kid and not mine' look.  Makes a sane parent want to fall back onto that blacken both eyes plan.  Yeah I know, it's not right and all the kids are watching to learn the best way to handle these situations.  Talk about pressure!  I always try to hold my anger, because my anger would only upset Bradley and the girls.  The last thing I would want is for them to think that the person is doing something awful because there is something wrong with one of them.

I want to be strong.  I want to be able to lift my chin and say "Stare away!" Stare until you are so familiar with Bradley that you no longer see the differences, that you see how much he is just like you and how much he is a person with feelings.  I want to be strong like that.  But my strength is only measured by Bradley's.  If he is staring back in curiosity, then so be it.  If he is turning away because the person is making him uncomfortable, guess who's likely to say something?  As I have a tendency to be blunt, (hear the intakes of breath as so many of you are shocked by this?) I am likely to say: "He's three, his name is Bradley."  A reminder that he is a person and he is my son...that he is a child...find your 'kind' eyes potato head fans and put them on; you're gazing upon something I find priceless.  

What have we learned today?  That I haven't figured out what to do about people who stare at my son. How I want to react and how I do or will, well...let's just say it's a work in progress.  It's interesting though, I find that the people who stare the most at us, at Bradley; are the ones that want to approach and ask about him, talk about him, tell me about someone they know and love who is like him.  Science may be trying to rid the world of Down syndrome and as a byproduct our loved ones that have it...but all in all, a lot of people who are Blessed with a connection to someone with Down syndrome, don't want to lose that connection.

Meeting the Dallas Cowboy Cheerleaders!

I've been working on a new blog post...it's been defeating me, like the voice I want to bring is not the one that is allowed to speak right now.  I think that fear and confusion...worry and stress might just be the culprit to this new mute me...that must fascinate scientists to think that there might be a time when I might be mute... HAHA... Crazy, I know.  So I have decided to put that one aside, let it sit and think and yet let some other thoughts spill out of my head to here... In fact, I'm setting thoughts of Bradley aside, though I have a whole other post in my head that will be spilling forth after I finish this one...but it can wait till another day to post. Ah, the anticipation my friends!

Nope, today it's about the girls.  Okay, we'll put a little of Bradley in here - the lives of Madison and Sydney are constantly affected by their brother.  His health, his well-being, his ability to tolerate certain things and certain people (numbers of people).  We thought this would be our summer to try  Disney...haha....it still makes me laugh that we thought this.  Of course, we were the ones to get Furloughed, of course, Eric's is the job disappearing in October...of course, the price would be so astronomical it boggles the mind...of course, of course, of course...   So then we thought somewhere cheaper.  Eric was given MWR Dollars in lieu of a Bonus; yes, the man whose job is being eliminated just got yet another bonus. The Irony is NOT lost on us.  Price is still out there for all really fun places, and honestly...Bradley is going to find little enjoyment and Sydney is a bit nervous around those fast coasters...so I am not certain her enjoyment will be much greater unless she meets some really cool characters.  So we thought that here in the middle of July the summer was a wash.  Our girls would go back to school and when asked the dreaded question: "What did you do for fun this summer?" And they both would have these blank stares...um, well...

But all is not lost.  The Dallas Cowboys have their Training Camp here in Oxnard every year.  Turns out they bring along their Cheerleaders.  In a surprise move, there was an offer of a Cheerleading Clinic that our girls could attend.  This is a big deal.  You see, the Active Duty Member and his/her family get to do some pretty awesome things; I mean come on, these people are sacrificing a lot so it makes perfect sense.  What they don't know - get out of the service and you are forgotten.  But Retire from the Service and the Member is honored, but his/her family is forgotten almost instantly.  It's amazing really.  We don't mind too much, I mean Eric and I kind of breathe easier in this newfound freedom, but sometimes we feel bad for the girls.  They know what it's like to worry about Daddy gone off to war, but they are lucky enough that he made it back.  They know about deployments, but he doesn't have to do that anymore, thank God!  So they know about it all, they've lived through it and they blossomed in another country far from home and made us proud of them.  They know all this, they know how it feels when he goes and when he comes home and they know the fear and uncertainty in between.  Still, in spite of their experiences, in spite of trying to start over again once Dad retired, they aren't remembered as often.

Saturday they were remembered.  The invitation came, Dad signed them up and we were surprised when they got into the Clinic.  We didn't tell them where we were going, we only told them it was something really special and hoped it would be cool.  We got Awesome.  The squad didn't just send two or three girls to wave and look pretty - they sent a dozen and these ladies put the kids through their paces.  When they split up into age groups, they taught the kids a dance routine and then at the end they decked out in uniform and wowed the kids with their own dance routine.  I watched my ever shy Sydney (believe me, she is quite shy) start to open up and take part in the dancing.  I watched my Madison, my sweet ballerina, find her love of dance again.

You know it's been a rough week for us.  Ups and downs that we just couldn't even begin to fathom the right direction to go.  Trauma often forces images into your head and it takes hard work to eradicate them.  I have these images, moments that have stamped themselves into my brain, burned into my soul that I have to work really hard to keep put away.  Bradley seizing, Bradley turning blue.  Those are the new ones of him.  But I also have these images of the girls... Madison in a panic openly crying.  Sydney with her hands over face wanting to hide her eyes, wanting to keep the tears in.  Both of them shrinking into themselves standing side by side as they stared at their brother.  The image of Fear.  Stamped on their faces, in their hearts, on their souls as they each thought in that moment that their brother was dying.  They'd never seen a seizure before, this was new from Bradley.  Turning blue was new for him too.  Fear.  Shaking you from the inside out, strangling you with its intensity and trying to force hope from your mind.  

Saturday I got new images to keep.  I watched my kids stand up a little taller, letting fear slide off them and into the ground to be danced upon.  Life was good and life was Fun again.  They would look up at us in the stands and they would smile and wave.  I saw joy and excitement!  Madison's smile radiated in such a glow it was hard to lose sight of her in the crowd.  Joy!  I think there are times that I forget what that looks like.  I see it in Bradley a lot, he just feels it and shows it.  But the girls, sometimes it gets buried in their worries.  As a parent I try to keep that door open, that path to me that lets the girls come to me with their questions and their fears.  Madison will, but Sydney is more a loner.  One comes crying and one I have to go find, but that's just who they are.  Saturday as we left, Sydney looked at me with shining eyes, tears glistening but unshed - she's not that emotional a person; her cup overflows but she keeps it in.  Madison tries really hard, but she looked at me and said, "Mom, one of the Cheerleaders that worked with me hugged me and told me I was amazing!"  I smiled and said: "I'm glad she can see what I see."

Madison smiled and her lip started to tremble and she started to cry, overcome with emotion and well, Joy!  And because I am the sap that I am, I made a valiant effort to keep my own tears in, and almost succeeded. Dad turned to see what was taking us so long, and then waited patiently as I stood, my girls wrapped in my arms nice and tight, all three of us taking in one special moment.  One precious stop in the chaos of our lives to remember how this one moment feels.

As I kissed the top of their heads I told them: "You are both amazing, I love you and if I could, I would give you the world.  I'm just glad we could give you this today."



Bradley may not have gotten his picture with a cheerleader, but he tried dancing in the stands with them, and he had eyes for 'his' girls and when they got close enough to say Hi, his excitement was real!  He loves his cheerleaders and everyone could see that.  Maybe next year he'll meet one of the ones in blue, but he was pretty patient this year to let his sisters have their moment.

We didn't understand how the pictures worked at the end, so we only got a couple, but we'll be ready next year if we get another chance to meet them and the girls might get pictures with all the Cheerleaders then!  Thank you to the Dallas Cowboy Cheerleaders!  Three hours out of your day leaves a positive and lasting impact on my girls for a lifetime!