Rare Bird

Yesterday Jules and I took a walk over in the open space by our house.

We saw bunnies and prairie dogs and heard lots of birds chirping.  I'm not a bird person, but I think most of the birds we saw and heard were your normal, run of the mill black bird or small brown chirp, chirp, chirpy bird.

On our second lap we heard something different.  Not chirping but a coo. A soft gentle coo, coo. Not far from us just off the path was a small gray bird, close to the ground, about to land on a rock. It's wings were flapping like a humming bird but it was much bigger than a humming bird.When it settled on the rock I could see beautiful dark blue markings near it's wings, contrasting it's soft gray color. It continued it's soft cooing as we stopped to observe.  I'd never seen a bird like this before, it was different, it was beautiful!

"Julia, oh my goodness, this is a special bird! A very special bird. A rare bird.... Just like you! My little rare bird."

I wish this is how the world could see Julia and people like her. Special and unique and exquisite and rare.

Why is it we can see the beauty in other species: dogs, cats, birds, fish, bugs, plants - but not in our own?

Why is it that something rare and different among other species is considered exotic and valuable, but among our own is considered defective and wrong?

For other species we fight to protect and preserve the rare. But in our own we seem hell bent on killing them off. For many it is considered a positive thing to "catch" a difference early enough so that it can be "disposed" of.  And those we don't kill off in time, well then we spend the rest of their lives doing everything we can to force them into something closer to us, closer to your average chirp, chirp, chirpy "normal" bird.

My Rare Bird

Why?  Why can't a rare bird simply be a rare bird.

When people look at Julia with disgust (sadly it does happen), I want to say to them (well first I want to punch them, and then I want to say to them), "People, you have no idea what you are witnessing!  This is the rarest of the rare type of human.  Scientists believe there is only one like her in the whole world, possibly in all of history. You are among the lucky few in all mankind getting the chance to see such a rare specimen. Take her in. Watch how she moves and interacts, it's fascinating.  No, she won't make the same sounds as you do, but listen closely to her beautiful cooing, isn't that amazing."

There is so much to celebrate in the diversity of our species.

Why are we scared of the rare bird among us when we could be in awe?

Your Confused Face is an Ugly Face

This is a public service announcement: Your confused face is an ugly face.

Do me a favor.
Go stand in front of a mirror.
Now close your eyes and think of a time when something confused you. Or caught you off guard. Or threw you for a loop.
Channel that moment. Feel how your felt. Make the face you made in that moment.

Now open your eyes.

Yikes!  Not a pretty face right?  In fact kind of an ugly face.

How do I know this? No, it's not because I am spying on you through your mirror - I'll leave that to the government.

The reason I know this is because that is the face we see over and over and over again when we are out in public. A confused face that is in fact an ugly and unfriendly face.  So I'm on a mission to raise awareness that your confused face is an ugly face - and in doing so hopefully make the world a better place.

Imagine what it would be like walking through life if this was the face you saw every time you made eye contact with a stranger.

Disturbing right?

And then, as if that isn't bad enough, the person making their ugly face realizes they have been staring at you (or your child in our case) with their ugly face and they quickly attempt a recovery face - and it looks something like this:

Not much better. Actually maybe worse.

Honestly after seeing this face so many times, I want to just to go ahead and put a narrative to it for people. You might as well be saying with your blatant gawking ugly face: "My brain literally cannot comprehend what my eyes are seeing. A person who looks different or acts different???? What is this?  Where am I? Am I safe? This is so far beyond my realm of understanding my face has frozen from confusion and fear."

First of all - what year is this? Diversity has been a buzzword for more than a few decades now and I'm pretty sure wheelchairs have existed for longer than that - so these are not new things. If they are new to you, then you should consider getting out more.

Secondly, I realize I'm making an assumption here, but I feel that it is very likely that you who stare with such bewilderment at people who are different also have one of those fancy CO-EXIST bumper stickers on your bumper and are very proud of it. If that is true, and I know it may not be, but if it is true or you promote this coexist concept in some other way in your life, then maybe go meditate on the meaning of that concept you promote for awhile so that the next time you actually do bump in to diversity you don't freeze and become completely incapacitated by DIVERSITY.  Just a thought.

Third, for the sake of the children (okay, let's be honest, in our case it isn't even for the child, she doesn't see it thank God, in our case it's for me). For the sake of me, for parents like me and for the kids and adults who do see it and are sick of this being the face greeting us wherever we go, please work on your facial expressions!  You want to make a difference in the world, you want to make the world a kinder place? Master your face.

Sounds hard I know, but don't worry, I'm not going to give you that advice and leave you hanging. I am a helper! I want you to succeed.  And thanks to my seven years devotion to Tyra Bank's educational television program America's Next Top Model, I KNOW for a fact that it is indeed possible (with work) to master your facial expressions even when you feel something different on the inside! Thank you Tyra Banks for your contribution to the world.

So, with that good news in mind and a little help from Tyra, let's practice!
Next time you see something that confuses you:

It's not this.

It's this!

Try it!
It's hard, I know, but you can do it.

Let's try one more:
"I just saw something I wasn't expecting to see. What should I do with my face?"

It's not this.

Or this.

It's this!

Okay, got it? Great! I knew you could do it!  Now just practice this tutorial in front of the mirror for 3-4 hours a day and I promise you will be making the world a better place for families like ours!

Thus concludes this public service announcement.

Survival of the Cutest

Last week I posted a new video of Julia laughing on Facebook. I was quickly informed via a comment from a “friend” that she "must confess" she did not find Julia to be" quite as cute" in this latest posting...

Huh?

The comment was odd to say the least. Who says that, really?  But nonetheless, the comment was made and for as weird as it was and for as much as comments like that probably just need to be ignored and chalked up to the strangeness that is social media –  I find myself having a hard time letting it go.  And not because of the reasons you might think.  Yes, the comment was rude. No, you actually are not required to confess thinking someone’s child isn't looking quite so cute lately – you actually can (and should) keep that to yourself. No, the real reason I’m having a hard time letting it go is because it tapped into something very real to me, something I think about and worry over often.

What happens to Julia when the world doesn’t think she is cute anymore?

Hear me out. When people think you are cute they treat you better.  Cute is a shield. And while Julia will always be the cutest thing on the planet to those of us who love her, I am realistic enough to know that as she gets older her looks (like all kids) will change. She will get bigger, she may become awkward, and she will not be viewed as cute by the strangers she encounters.

And how will she be treated then? That's my concern.

I know the answer a little because the change has already started. The last time we checked into the hospital the nurses clearly treated Julia differently than in previous visits. She’s getting bigger and older and so rather than hear comments about her being “so cute” which is what we have usually heard, (which then behaviorally in our experience leads to being treated with patience and kindness), the nurse trying to get Julia’s vitals labeled her as “difficult” and seemed annoyed by the challenge Julia was presenting to her.  I distinctly remember thinking to myself in that moment that this is just a glimpse of what we have to look forward to when doctors and nurses no longer see Julia as cute and little but instead see her as a difficult challenge.

The world is a kinder place for those it deems cute.

And so I worry that the world will become less kind to Julia when little and cute aren’t the first things to be seen. I wonder if people will take the time to get to know her if they don’t immediately like what they see.  In truth it’s already hard now. We get strange looks or no looks at all when we are out in public so much so that my mom recently made Julia a shirt that says “I’m not invisible!”  If she needs that kind of shirt now at age six, I wonder how much more invisible will she become when she is (God willing) an older child or young adult and not so cute?

My biggest fear around this topic is that people will become less patient with Julia and less accommodating of the extra needs she does have and will continue to have if they aren't at first charmed by what they see.  Sometimes I want to ask the moms of older kids with special needs about this. Did you notice a change? Was there an age when people’s reaction to your child shifted, when their patience lessened?  Have we unknowingly been living in the easiest of years – and the harder years are yet to come? 

I want to ask, but I haven’t - maybe I don’t really want the answer confirmed.

It’s a sad reflection on our culture that this fear exists - but to be honest I'm afraid of this happening because I am guilty of doing it myself.

When I was 22 years old I decided to sponsor a child through Compassion International because a letter came to our house and inside the letter was a photograph of Gracie, the cutest 4 year old I had ever seen. The letter asked me “will you sponsor Gracie?”  And because I could not resist her cuteness I said “yes!” Two weeks later my intake packet arrived with a picture of my newly sponsored child - Yvonne.

Yvonne???  Ummm, where is Gracie?

Yvonne was not Gracie. Yvonne was not 4, Yvonne was not little and Yvonne was not particularly cute. Yvonne was not why I signed up to help.  Cute little Gracie was.

The intake letter explained Gracie had already been chosen so I had been matched with Yvonne, a child also in great need of sponsorship for the very same reasons as Gracie. But I remember thinking “I don’t realllllllly want to do this anymore... I really kinda just wanted to sponsor Gracie because she was really cute.” 

And then I remember realizing, “Wow, I am a complete jerk.”  And I wondered "Am I alone in my terribleness or are other people as terrible and shallow as me and Compassion International knows this and also knows they must use pictures of kids like Gracie to get sponsors for kids like Yvonne?"  Terrible.

I can only hope for my sweet Julia’s sake that most of the human race is NOT like the 22 year old version of myself.

Please, please, please people, be better than me!

I can only hope that I am wrong in my worries and fears, and that most people don’t treat others differently based on their looks or their size (or their age or their abilities).

I can only hope that most people aren’t so shallow as to decide how much love, patience, help, kindness and grace another person deserves based on how pleasing their appearance is.

I can only hope that most people do not measure the worth of another in cuteness but in humanness.

I can only hope...but I do worry. 

She's Not Sad

Yesterday after our church service, Wes and I picked Julia up from Sunday school class, put her in her wheelchair and started down the long hallway back out to the common area.

As we passed the first grade classroom a little girl waiting in the hallway pointed at Julia and loudly said "Look at that girl in the wheelchair. That's SO SAD!"

Before my brain could register what to do, my legs took over and I walked straight up to that little girl, bent down to look her in the eye and said, "No, no, no she's not SAD!!!! She's happy! She's a very happy girl!"

Wes fabulously followed my lead by rolling Julia up behind me so the little girl could get a closer look. "This is Julia," he said, "did you see the cool wheels on her chair? They light up!"  The little girl looked at Julia's wheels as Wes spun Jules around and nodded hesitantly. By this time her parents were paying attention, probably wondering why strangers were harassing their daughter. "Oh, they do light up," her mom said, "how cool!"

I asked the little girl her name. I told her we were so happy to meet her and Julia was happy to meet her!  I also thanked her for noticing Julia and talking to us (that might not have exactly been her intention, but that was my reframe because I do appreciate when people see Julia and acknowledge her).  I ended with saying again, "We are so glad to meet you and tell you about our happy, happy girl. She is not sad at all!!!"

I'm not sure if I made a positive impact on the world with that intervention yesterday or scarred a small child for the rest of her life, I hope the former.  It was just one of those moments I couldn't let pass.  I spotted the little girl before she spoke, she was staring at Julia and I could tell she was going to say something, when she pointed her finger at Julia and said "look at that girl in the wheelchair" I just figured I would smile and wave, but when she added the "that's SO SAD" part I was completely taken aback. It's just not accurate. And I couldn't leave it uncorrected.

I don't in any way blame this little first grader for saying what she said - she clearly has been taught from someone in her life, maybe even with good intention - that being in a wheelchair is sad, or being different is sad and that pity is the right emotion to feel when you see someone like Julia.

But nothing could be farther from the truth.

Julia isn't sad. Julia doesn't make us sad. Nothing about our lives with Julia is sad. She is a joy!

We don't want her to be different. We don't wish for a different version of her. We want her, exactly as she is, wheelchair and all!

We celebrate Julia! And she celebrates life to the fullest! She embraces the moment like no one I know! She is joyful, she is silly, she is spunky, she is busy.  There is no room for sad in all that amazingness!!!

The message that people with special needs are sad has to be corrected, not only because it is wrong but because it perpetuates isolation and bias. When we think something is sad, we stay away. When we pity someone we are actually thinking of ourselves as better than that person. Pity and sadness are barriers to being curious, being interested, being involved and being changed.

Please don't pity Julia, ADMIRE HER!
And get to know her, you won't be sad you did!

Meet me in Holland

Emily Kingsley's poem Welcome to Holland is standard reading for any special needs parent. Upon diagnosis 58 people will immediately forward you this poem.

It's a beautiful poem describing what it is like when you find out your child has special needs by using the metaphor of planning a trip to Italy but landing in Holland. We grieve our plans for Italy while we learn to love the wonderful things about Holland.

I really do love this poem.
There is just one thing that doesn't work for me:
We still land in Italy.

Our itinerary has changed and our guidebooks are no longer relevant - but make no mistake we are still very much in Italy.

And in Italy we are surrounded by all the other tourists whose trip is still going as planned, and who still believe trips go as planned.

They see us but can't understand the shell shocked expression on our faces because hey, we all landed in Italy!   Salute!

Sometimes I wish I actually was in Holland with all the other displaced would-be Italian tourists like myself. Sometimes I think that would be easier. Easier than the lonely Holland bubble we now move through Italy within, bumping into one another once in awhile as we navigate Italian roads with our obsolete maps.

In Holland we would be together. All of us feeling lost, but lost together, so not alone.  Belonging now to each other in our new status of not belonging.

Our expressions of confusion and grief would be mirrored in the faces of our fellow refugees, along with astonishment and wonder as we each learn to find our footing and take in the unexpected landscape.

Sometimes we might still talk about Italy. We might once in awhile share what we had planned and say to each other "Oh that sounds nice..." but it would just be a memory of a plan - not reality playing out before us each and every day.

"Holland has tulips."

In Holland we would be the norm.

And Tulips and Rembrandt's wouldn't stand out for being different, they would just stand out for being beautiful.

Appreciating my Husband's P-ness

~J loves P~

In 2004 I was in a master's program studying Marriage and Family Therapy.  One of our classes taught us how to use personality assessments in pre-marital counseling. This was fitting because at the time I was in what I hoped was a pre-marital relationship with my then boyfriend (now husband) Wes.

One class was based on the Meyers Briggs personality assessment, a widely used personality inventory based on four scales: introvert-extrovert (I or E), sensing-intuition (S or N), thinking-feeling (T or F) and judging-perceiving (J or P).  After taking the test you get a four letter personality "type" derived from the four scales.

I arrived to that particular class equipped with mine and Wes's personality profiles (ISFJ and INFP respectively), ready to hear the verdict on our relationship.

Our professor began her lesson going through each scale and explaining how similarities or differences on each could be a positive or negative in a relationship.

First Scale: Both introverts (I). No problem! Similarity is compatible in this category - we will be okay. Phew!
Second Scale: Me sensing (S), Wes intuition (N). Again - not a problem! Differences in this category can be a good thing - we are good to go!
Third Scale: Both feelers (F). Bingo! Compatible again! Order the wedding cake!
Final Scale: Me judging (J), Wes perceiving (P). "Now this category," our professor began, "is where there can be a lot of problems if there is a big difference."

Eeeeeek, what???  There IS a big difference - I'm a high J, he is a high P - we are very different!  J's need rules, J's need structure, J's need a plan. P's on the other hand need flexibility, they want to adapt in the moment and leave things open ended...so, basically the opposite of a J.

"Sometimes," she goes on to say, "when couples are very different in this category I encourage them reconsider moving forward with the relationship."

I am devastated. The "J" rule follower part of my personality is responding exactly on point and I have lost all hope. Our relationship isn't following the rules, therefore we are doomed.

My professor continues; "All I can say to JP couples when they decide to stay together is that they will have to learn to appreciate each other's differences."  Okay, yes I can do that!  Got it!

Class ends, I throw my things in my bag and am dialing Wes's number before I even get out the door.

"We are going to have problems!"  I tell him.
"You are a P and I am a J and my professor said we are barely compatible.  Our only hope is for me to learn to appreciate your P-ness."

"Well," he calmly replies in true P fashion, "that'll help!"


Fast forward 10 years, one wedding, one birth, several diagnoses and two miscarriages later and I will admit
my professor was right. Our J and P sides have been where we disagree the most and where our approach to life is most varied. But she was also right in her prediction that appreciating each other's differences would be the key to making it work. It would also be the key to surviving, for me at least.

Life hasn't gone as I "expected"  by any means, and initially my biggest struggle with this was suffering through the feeling that I had lost the control I once thought I had over what happens to me. While I realize now that my beliefs about control were immature, arrogant and delusional - at the time that was my struggle and my panic and my issue to work through. And thankfully I married someone who could help me.

Wes didn't have that type of mindset about controlling life to begin with, so while he's struggled in different ways with the challenges we've faced, he has been a good role model for me, teaching me that it is okay to let go of the "plan" and embrace what comes our way. He's taught me that flexibility and adaptability are requirements for surviving the unexpected and beyond just surviving, I will actually enjoy my life more when I can embrace those qualities rather than fight them.

In trying to appreciate how he is different than me I've learned to embrace my life.

Two J's and we would both have ulcers or heart attacks by now.
Two P's and we might not have ever made it to the wedding in the first place.
But a J and a P working really hard to appreciate each other's differences - yeah, that works!

Reconsidering Jerks

(This was written and shared in November of 2012 after Julia was  first diagnosed with a new type of seizure. One year, three months and two drugs later we are headed back in to  the hospital to see how things are looking...Very rarely do we get to see with absolute clarity how what we considered to be a burden is actually a blessing. This was one of those rare moments and I think it is important to remember...)

 
November 30, 2012:
I’m aware I have been a facebook posting maniac this week with Julia in the hospital. The casual FB observer may be thinking to themselves “enough already lady, get a life!” To which I would respond “I agree.” But I feel compelled, mostly out of gratitude, to summarize what I think happened this week. 


For over a year Julia has been having these sharp jerks which we thought were seizures – we would increase her medicine, they would stop, they would return, up medicine, jerks stop,jerks return, etc… They would not leave us alone! We decided it was time to take a look at these jerks on an EEG before adding our next medication, so an inpatient EEG was scheduled and we started praying the jerks would show during the EEG for Julia’s doctor to analyze. 
EEG’s are hard for all kiddos – and for a child like Julia who doesn’t understand what is happening and has major sensory issues, an EEG is torture. So for this visit Julia had to be sedated first, then hooked up, then kept from ripping out the cords for the duration of the visit – not an easy procedure for her, thus making us even more anxiously hopeful that going through this would be meaningful and we wouldn’t be putting her through such a stressful ordeal for nothing.
Once she was hooked up and recovered from the anesthesia we were just praying for the jerks to start…but nothing. When the doctor came to see us in the morning after her first night we were so bummed, “no jerks yet…” we said, but she surprised us by telling us they had discovered something else overnight that had not been on any of Julia’s prior EEG’s, a new type of seizure, basically an all night seizure in her sleep (called ESES). This is a non convulsive seizure so we would have NEVER known she was having them. She looks like she is peacefully sleeping but really her brain goes into an electrical firestorm keeping her from getting any good sleep 95% of the time. 

This could have been happening for over a year, maybe 2 given how long it had been since her last EEG, our poor girl. And we never would have known had we not come in to look at those jerks…

Those jerks. 

The jerks I have cursed for the past year, prayed would stop, pleaded with God to take them away from her. Those jerks that would not leave us alone, that relentlessly returned time after time. Those blasted jerks were now our heroes… 

And I am left with the thought, how much of my life am I cursing, thinking is an affliction when instead it could be my life preserver? I don’t mean to preach, but for me this has been such a spiritually humbling week of going from "why God why?" To "thank you, thank you, thank you." 

We rarely get these ah-ha moments when what has been so painful to us reveals itself as a blessing – but when we do I think we should take a moment to think about them. Because more often what is painful continues to be painful, what is confusing stays confusing. No “ah-ha”, no “oh now I get it” – more often than not we must endure and try to have faith – and this is why faith is hard, and this why faith is greatly rewarded. Our human reaction says “this is wrong and should not be happening,” but our Father who loves us and wants good for us says “Trust me.” For me this week I was just reminded that this is the type of faith I need to have and want to have in all things – whether what is happening makes sense in my limited perspective or not.


So, the doctor was able to start treatment right away on these new seizures for Julia and she had a remarkable response the first night to her new medication. We have so much hope that good sleep will be life changing for our little lady – and as for those jerks? Well they showed up right before the EEG tech came to take the leads off of Julia – and ya know what, they aren’t seizures. I don’t know what they are. A movement disorder, a twitch, the result of sleep deprivation… I don’t know what they are, but I know now they were not the curse I considered them to be, they were a blessing and they are causing me to reconsider some of the other “jerks” in my life that might possibly be misunderstood blessings as well.