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.

"No Restorative Potential" An open letter to Kaiser Permanente

Dear Kaiser Permanente,

This afternoon we received  your letter informing us of your decision to deny our six year old daughter occupational therapy because she demonstrated, in your words, "no restorative potential."

This was quite a blow. Not the part about denying OT (at this point denials from you are a dime a dozen, no offense). If our plan doesn't cover OT we accept that and will figure something else out. But that's not what your letter said. You said the reason she has been denied OT is because she demonstrated no restorative potential...huh, that's different.

That's subjective. That's a decision someone (unknown to us), makes based on some matrix (unknown to us), using selective data about our daughter (unknown to us), to decide whether or not she has restorative potential (which honestly what that even means is pretty much unknown to us).

And you decided she does not.

So this isn't actually about the coverage we should get through the plan we pay for. This is about you trying to play God by making judgments on the value of our daughter's life.

While you clearly deem yourselves knowledgeable enough about our daughter to determine she has no restorative potential- you also clearly don't know our daughter.

You don't know the girl who is a survivor and fought twice to stay in my womb before she even reached her 20 week ultrasound.  You don't know the girl who couldn't suck when she was born but kept trying to choke down milk so she could live and grow.  You don't know the girl who started having hundreds of seizures a day when she was only six months old, whose brain was so overwhelmed with seizures she shouldn't have been able to do anything but be a zombie and yet would still smile for her daddy. You don't know the girl who went through medication after medication after medication to reduce her seizures enough for her brain to finally at 18 months old get a break and begin to recover. Who miraculously started using her vision after a year of being blind, who learned to sit up on her own at age 2, who started to reach for toys, to hold her own bottle and put her own pacifier in her mouth at age 3. All of this to the amazement and wonder of those of us watching her closely.

You don't know the girl who continues to meet developmental milestones even after her seizures returned, this time in the rare form of a static seizure during sleep. You are a medical expert so I'm sure you know all about ESES and I don't have to explain this to you, but just in case, this means she gets NO GOOD SLEEP.  Imagine how you feel after one night of bad sleep. This girl has been without restful sleep for 3 years. She closes her eyes to sleep and her brain goes into a constant seizure AND YET even in spite of this she continues to develop.  You try that.  You go without sleep for even three days and see how well you are functioning, let alone three years. Without sleep she has started standing up and taking steps. She has learned to do somersaults and boy, they are the most amazing somersaults you've ever seen. She signs yes and no, she looks at books, she points to her eyes when she wants her glasses and she points to pictures of toys she would like to play with.

This girl who according to you has NO RESTORATIVE POTENTIAL, who is currently on three very strong anti seizure meds and still has seizures in her sleep does more every day to demonstrate potential than any other human being I know.

But you don't need to know any of that. I'm sure the information you based your decision on (what was that information by the way, I don't remember being asked?) was enough to determine her lack of restorative potential and justify your decision to cut her off from therapeutic services. Therapeutic services which I believe are meant to help people overcome their challenges right? But just not our daughter because her challenges are too many - so therapy wouldn't apply to her. I guess the people your therapeutic services are for have a lot less problems and need a lot less help and therefore qualify for more help- is that how it works? That makes sense.

You don't know my daughter Kaiser Permanente so maybe you don't care at all about this label you've slapped on her. But I know some of you have daughters or sons and if you would put yourselves in our shoes for just a moment and imagine what it would be like get a letter labeling your child as having NO RESTORATIVE POTENTIAL your stomach would turn too and you would think, wow, that is no way to talk about my child or any human being really, and you would be upset and you would be outraged and you would want that language and that mindset about human value changed.

Ultimately this is not about me proving to you my daughter has potential, she does, I know it, anyone who spends 5 seconds with her knows it - this is about me asking you to reconsider the way you talk about a human life: to eliminate the option of ever answering no to the question of potential for any human being. You have potential, who are you to say someone else does not?

Yours,

Laurie Arnold
A blessed mother to Julia Anne, age 6, bursting with potential!

I wanna see you be BRAVE!

I'm not a fan of the current Microsoft ad campaign for their new tablet:  Play games, touch the screen, surf the web, blah, blah, blah and then they end their commercial with these song lyrics:

"Honestly, I wanna see you be BRAVE."

What the heck does being brave have to do with buying a tablet?

Do they mean you have to be BRAVE to buy their products - if so, that's a really odd marketing strategy.
Do they mean you are BRAVE when you use technology to play video games and peruse social media? God help us if that's the new standard.

I can not come up with a justifiable reason to use this word BRAVE in conjunction with any use of technology. It's such a meaningful word to be used for such a puny act. And today I have no patience for it.

Today my friends from our support group are taking their precious daughter home from the hospital, and not because she is better. They are leaving the hospital so that their sweet June Bug can spend her last moments here on earth surrounded by the people who love her in the comfort of her home.

So yeah, that might be a better use for the word BRAVE.

Choosing to unhook. Choosing to let her rest. Choosing to stop the fight because you are placing her needs are above the selfish part of the soul desperate to keep her physically here at any cost...

That's BRAVE.

Facing death, facing the end of this part of the journey. Facing the rest of your days without a part of your heart...

That's BRAVE.

Continuing to live and continuing to love after your greatest fear has been realized...

That's BRAVE.

In the last six years my life has collided with BRAVE.

Yes of course in the kids. The precious kids. The inspiring kids facing huge obstacles while still smiling - not even knowing the fight they are in.

But more so in the parents. The precious parents who DO know the fight they are in. Who DO know the stakes. And they don't run. They face the fight head on without holding anything back. Offering everything they have up to God or the universe just for their kid to have a chance. These parents who learn to give shots, and suction throats, and feed through tubes, and place catheters. Who hold through seizures, restrain for IV's, challenge the medical field for non-approved treatments, advocate for therapy, demand acknowledgement and refuse second best. These parents who love, hold, hope, cry, fight, fight, fight, and accept when the fight is over.

That's BRAVE.

I don't know what Microsoft was aiming for, but honestly, if they really wanna see BRAVE I have some names for them.

I AM *bleeping* Hanging In There!

If you would like to see me punch you with my eyes, tell me to hang in there.

Of all the button pushing phrases I can think of (and there are many), this one for me is the worst.
I have an actual physical reaction to this phrase. My body recoils like I've just been shoved, hard.

Maybe my reaction is a little much? A little sensitive are we?
I mean what's wrong with this little phrase? It's always said with good intention right?
Yeah, I know. But I still hate it.

I've spent some time examining my extreme hatred of this phrase and here's what I've come up with:
Maybe it is because I am immature.
Maybe it is because I am insecure.
Maybe it is because I am an oldest child and I don't like to be told what to do.
(I have problems, pray for me!)

But probably I hate this phrase most of all because... I AM *bleeping* HANGING IN THERE!!!!!!

What else am I possibly doing other than hanging in there?
I haven't offed myself.
I haven't abandoned my family and hopped a plane to Fiji.
I am right here, very much hanging in there.
In fact, I am as 100% hanging in there as humanly possible.

What have I done or said to indicate I may no longer continue to hang in there? Why the need for this type of feedback? The implication of "hang in there" is that I am considering possibly no longer hanging in there - and that is insulting.

I think it comes down to this:
Sometimes life feels hard. And I know in general we prefer to hear just the good stuff from each other. We prefer an optimistic, sunny response when we ask each other "how are you?"
Make it easy on me and say you are fine.
But sometimes life is legitimately hard and sometimes it goes on for a while, and IF an honest answer to this question of "how are you?" is given, or IF an attempt to be vulnerable by sharing the hard stuff is made, please do not do the verbal equivalent of palm to the face by telling that person to "hang in there." It instantly shuts the conversation down.

Instead:

If don't want to hear anything difficult, then just don't ask.

OR

If you really do want to know the truth but find yourself not sure how to respond when you hear about hard things, just say that: "My friend, wow, I don't even know what to say."
Or say, "Thank you for sharing the hard stuff."
Or say, "That sounds really hard."
Or say, "I'm really sorry, that sounds hard."
Or say,  "Please say more, I want to know more about what this is like for you."

These are the responses that encourage, these are the responses that form bonds, these are the responses that keep the conversation going, these are the responses that sustain us.

Life is really hard sometimes, way to hang in there!!!