Are You a Sponge or a Honey Badger?

I would say that overall, I tend to be a positive and happy person.  I mean, come on-- the name of this blog is "Cowgirl Up!" which means that when life throws you off your horse, you have to dust off your jeans and get back on-- you know, you have to Cowgirl Up!  Last week we celebrated World Down Syndrome Day and it was amazing.  I would have written sooner, but life has been getting me down.  I mean down.  Down down.  Then I never know-- should I share these down moments or do I suck it up and move on?

The Sponge

This is where the Sponge versus the Honey Badger comes in.  One of my dearest and most wonderful friends in the world, Kelly Lee, once told me that we were both "sponges."  Only she said it in her super cute Southern accent like, "Gin, we are sponges." Gin is the Southern version of Jen and it sounds best when Kelly Lee says it.  It was an Ah-ha moment.  A sponge!  That is exactly what we are.  We soak up what is going on around us and take it to heart.  

Aren't these cute sponges? You can buy them here.

Being a sponge is hard work.  Wanting to save the world and make a change can be overwhelming and for some reason when it starts to get to be too much it all happens at once.  I remember being so overwhelmed by all the sickness and pain in the hospital after Joey's heart surgery.  It really got to me and I didn't know how to deal with it.  My mom told me to never lose that empathy and I've tried to keep that in mind.  Empathy and compassion are what makes us humans.  It is what makes us stand up for what is right and fight was is wrong. 

Having a son with Down syndrome is not what has been making down.  In fact, Joey does just the opposite.  He and his brother raise my spirits and give me a reason to try and do my best every day.   Joey inspires and awes me with his tenacity and his impervious attitude toward the world around him that wants to know why he can't stand up on his own, why he doesn't say more words or why he isn't able to walk, yet.  It doesn't bother Big Joe, so why should it bother me?

What gets to me sometimes is convincing the rest of the world of Joey's abilities and of his value.  Trying to convince them to see him as a person first-- not just a disability.

I would also like to preface this with the fact that we are really, really grateful for the majority of doctors, nurses, therapists and medical personnel who make Joey's life and our lives so much better. That being said, because of the inordinate amount of appointments and medical personnel we see, we tend to also sometimes have some, ahem, not so positive experiences.

"Downs Kids"

Last week I double booked the boys at a new medical treatment center (that's a nice generic description, right?). I specifically booked them with a particular physician (or so I thought) at the recommendation of another physician.  Confused?  I am too.  The appointment was a hot mess from the word go.  After filling out 8 pages of forms we finally made into an office where we were interrogated as to whether or not we'd be paying cash for our dental appointment (oops--not so generic) since we do not have dental insurance (stated loudly to the entire waiting room).  They also wanted my social security number as well as my husband's and I politely refused.  This was seriously going to hell in a hand basket pretty quick.  I assured them that the appointment would be paid for in full despite the fact that we do not have dental insurance.  That was right around the point when Joey started to projectile vomit, which is his signature move when he has aspirated on something.  Not kidding.  Projectile vomit.  That was bad enough, but then he started to choke on his vomit, turn blue, cry and eyes started rolling back all at once.  Nightmare.  Then the woman who wanted my cash/social security number/first born proceeded to sit calmly across the desk from me while our show was going on.  Finally she asked if I needed anything.  Um, yes, please.  A do-over perhaps?  A cocktail?  I just asked for maybe a tissue to try and repair our vomit covered outfits (not a wet-wipe to be found on me-- my own fault--it was that random 80 degree day and I was sweating from head to toe).  

When I thought things couldn't get worse we get back to the chair and find out that because Joey has a leaking mitral valve and a patch on his heart from his heart surgery, he can't actually get his teeth cleaned because he is at risk for endocarditis and will need to be on antibiotics before any procedures...for...the..rest..of..his..life.  Not a big deal.  Just not what we needed on that particular day.  Tommy was able to get his teeth cleaned and we were told by the doctor (not the one we had made an appointment with, but some other doctor) that Tommy needed to lose his "dog-dog" lovey and stop sucking on his fingers.  I get the fingers.  I really do.  But "dog-dog"?  Really?? REALLY?????  I THOUGHT WE SIGNED UP FOR A DENTAL APPOINTMENT AND NOT A PARENTING CLASS!!!!

Surely this torture session was over.  The doctor wanted to take a look at Joey, so I (foolishly-- oh so foolishly) let him sit in the chair.  BIG MISTAKE!!!  The minute you let your kid sit in the chair-- THEY WILL CHARGE YOU!!!!  The doctor counted (not kidding--counted all 12 of his teeth) and then we were charged $62 for a "complete oral exam".  The doctor then went on to tell me all about "Downs" kids.  Here is the sponge part.  I try to be impervious, like Joey, and ignore it when people use what we call the "short cut" and say "Downs" kids or "Downs" babies instead of people who have Down syndrome or a child with Down syndrome.  I've really tried to get a thicker skin.  As much as I am a huge advocate for People First language, which recognizes the person first as an individual and not just a disability, I am also trying to learn to pick my battles and give a little grace to people who may not know that People First language is preferable.  But here is how it went down, "Well, Downs kids have strange teeth.  Downs kids' teeth come in out of order.  Downs kids may not get all of their teeth.  Downs kids may need implants."  And on and on and on.  Ugh.  $62 for that.  Well-- $62 for that helpful information, but $195 for the entire appointment.  I was soaking it all in and getting angrier and angrier by the minute.  Now-- I will say I learned a token of good information from this hellish appointment, "Downs kids don't usually get very many cavities."  There you go-- Cowgirl Up!  One last thing-- this appointment was on World Down Syndrome Day-- just saying-- the irony, oh, the irony. 

Boys-- let's go to Starbucks and do a little caffeine therapy for Mama.

OWL

The next day, Joey and I headed off to another appointment with a medical professional that we have not seen in about three months.  I pushed Joey in his stroller and started to get situated.  First question, "Is he walking yet?"  Um.  Well.  No.  He's not walking.  He's not standing independently.  He's not pulling up on anything.  He's got this crazy arm/toe combination army crawl thing down, though.  

Then came the questions about what words he is saying.   There aren't a whole lot of words, but we usually know what he wants or is feeling.  "So he hasn't made in progress in his language."  That is totally not what I said.  I feel like he has made a lot of progress!  He's got vowel sounds, "k" sound, "n" sound, "b" sound, kind of "th" sound.  He can sign "more" and wave hello and goodbye.  He puts his arms up when he wants picked up.  

Super Joe can also do these crazy Baby Planks where he is on his toes and hands!

I'm not sure what was going on, but this particular medical professional had a visiting RN in our appointment I started to get the impression that she was trying to show off for the RN.  When Joey wouldn't spoon feed himself she said, "Well you are just a spoiled boy, aren't you."  Ouch. Loved?  Absolutely.  Spoiled?  Maybe.  But the thing is, if you just give him a little bit longer than a second, if you stop and wait a moment, he will usually do it.  That is one of the most valuable things I learned from our amazing Language/Speech therapist--OWL.  Observe.  Wait.  Listen.  The middle one-- the Wait-- is the most important.  The thing is, sometimes things just take our little lovebug a little bit longer.  The waiting is the hard part.  It can seem like forever.  Like a pregnant pause, but longer.  So long, that you almost want to give up and then it clicks.  

The Honey Badger

What does any of this have to do with a Honey Badger?  Have you ever even heard of a Honey Badger?  According to Wiki, they are "notoriously fearless and tough animals" who are tireless in combat and will attack animals much larger than them.  Their incredibly thick skin makes it difficult for other animals to bite it and penetrate it.  Can you imagine?  To have such an incredibly thick skin!!!  I am so envious!

The Honey Badger is a new marital joke in our family.  The good thing is that while I am a Sponge, I am married to a Honey Badger.  I told Tom about the doctor who kept saying "Downs kids" and he deadpans back to me, "Well, honey, it's so much shorter."  He said it with his glint is in eyes knowing that I need a little humor to calm me down.  I tell him about the medical professional who called Joey "spoiled" and he says, "I thought you were going to quit seeing that person because those appointments aren't helping Joey at all."  He's right.  He always is.  He is our Honey Badger.  Because, guess what-- the Honey Badger don't care!

Have you seen the video?  Just a warning-- it is mostly "R" rated for animal violence and language, but my goodness, it gives me a good laugh and helps me feel braver.  I so very much desire to be more like a Honey Badger and less like a sponge.  If you are offended by curse words, you may not want to watch, but if you need a good laugh, you may really want to watch.  

So, in our house we co-exist in our Ying and Yang state of being where I am a Sponge and my dear husband is our resident Honey Badger.  

When the pains of the world get to be too much to bear I turn to him and his strength.  

Say a Little Prayer

Last week I learned that a women in her early 30's who has Down syndrome and is the niece of the kind woman at Tommy's gymnastics was in the hospital and is now on a feeding tube and has a tracheotomy because her pneumonia took a turn for the worse.  This just eats me up.  Please say a prayer for "A". 

Then I learned that our dear friend from church, who is also a women in her early 30's who has Down syndrome, has a dual diagnosis of Down syndrome and schizophrenia.  This too eats me up.  Her parents are such incredible people.  So calm.  So kind to our boys when they are wild in church and their daughter, I'll just call her "D" to maintain her privacy, is such a joy to get to go to church with.  She hugs me every week, kisses me on the face and calls me her favorite friend.  My heart aches that she is also living with schizophrenia.  Please say a prayer for "D". 

Finally there is the big C.  The C that all parents who have a child with Down syndrome worry about deep in the back of their mind and heart.  Cancer.  While people who have Down syndrome may not have a very high chance of getting cavities, there is a much higher risk than the regular population of getting Cancer.  Right now, there is a precious little boy, Oliver, who is battling leukemia (AML).  He has been in the hospital since February and will be there for at least six months receiving treatments and fighting the leukemia.  I honestly can't really talk or write about Oliver for more than a few seconds before my eyes tear up and my nose twitches and I try to fight back tears.  Tears for dear Oliver.  Tears for what his family is going through.  Tears for all of those precious kids fighting cancer.  You can read more about his story here.

One of our own blogging mama's is doing her best to help find a cure for childhood leukemia.  Meriah, over at With a Little Moxie is training for a half marathon to help raise awareness and funds to fight cancer.  This is what I think of Meriah, even though this is what she sent me as a thank you for our donation:

Super Meriah!!!

Oh, and did I mention that this is Meriah's first half marathon and oh, by the way, she is pregnant.  YOU GO GIRL!!!!  Here is her story.

If you would like to donate to Meriah's team on behalf of Oliver, please visit here.  Please say a prayer for Oliver and also one for Meriah's journey.

Was this a long-winded, slightly off track, rambling post today?  It was and I apologize.  I'm going to go read a few pages of "Bossypants" (thank you, Shannon!!!  I need some humor!) before bed.

Before you go to bed, ask yourself-- are you a Sponge or are you a Honey Badger?