Friday, December 20, 2013

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.

Friday, December 6, 2013

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.


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


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!!!

Thursday, November 21, 2013

I'm a Special Needs Parent and I have CTSD

My mom kept Julia last night so Wes and I could have a mid-week break.

Over dinner we talked about how we both feel like crazy people lately and I shared with him my theory that all special needs parents have my newly created diagnosis: CTSD (continued traumatic stress disorder).

How else do we make sense of this extremely volatile reaction we are both having to Julia starting a new medication. We've been complete basket cases this past month prepping for and starting these steroids.

Because we are traumatized.

Because this past month isn't just about one new med, it's the culmination of seven years of unresolved trauma. Seven years of stuffing grief and swallowing fear in order to keep functioning one day at a time for the girl we love.

No resolution - just the next thing.  If the next thing is bad, the trauma piles on. If the next thing is good, the trauma goes unexplored because who goes and pokes at trauma when you finally get a breather? You don't, you leave it alone. Let sleeping dogs lie - or something like that.

This one new medication is the next step in a journey of eleven different medications we've tried so far since receiving a diagnosis of epilepsy for Julia. Eleven roller coaster rides of watching her seize, being given our options, weighing the pros and cons of our options, deciding to go for one of these options, fearing the worst reaction, hoping for the best, anxiously watching her, meticulously reporting every little change to doctors, in some cases celebrating victories, but ultimately in every case being defeated by the return of a seizure. And starting again.

How can we not be traumatized?

When the present becomes hard I've noticed I start having flashbacks to the the early days.  In the last week I've been maybe 50% present because my brain is obsessed right now with going back to the beginning to relive those first traumatic moments.

The phone call from the doctor 1 hour after the 20 week ultrasound.

While we were calling friends and family to say "It's a girl!" our doctor was calling us to say "It's her brain."

The floor disappeared under my feet and the room started to spin. I couldn't catch my breath.

Not the brain, not the brain, not the brain.

You can fix a heart right, or lungs - you can fix lungs? Let it be lungs or heart or arms or legs.  Not the brain. How do you fix the brain?

The call back to my mom: "something is wrong with her brain."

And the helpless, what the hell is happening, clinging to each other for dear life embrace with Wes in our tiny living room which continued to spin out of control around us while we held each other and knew that the entire story we had made up for our lives was swirling and lifting up into the sky, never to be seen again.

How can we not be traumatized?

This diagnosis I've given to Wes and me and the entire special needs parent population may not mean much in terms of day to day life - we still keep the motions going. But for me it helps. It helps to pause for a moment and remember why the ache and the frenzy exist. Why the walls are up and fists are drawn.

It is not unreasonable. It does make sense. Yes, we are a little crazy but there is a reason. A really good reason - our love for Julia.

Swallow. Deep breath. Shoulders back. Now keep going.

Tuesday, November 12, 2013

The Legend of Bun Bun

This morning my husband sent me a throwback picture of Jules and her favorite stuffed animal and it brought back memories of one our favorite family stories: The Legend of Bun Bun.

When we brought Julia home from the hospital our then two year old bull mastiff Lua went into a depression.  Her feelings were hurt, she felt replaced (which she kind of was), so she hid in the back room and wouldn't speak to us. We thought she was just pouting, little did we know she was scheming...

I was worried about Lua, but given that I was experiencing all the craziness of being a first time mom, I didn't have a ton of energy to put towards our brooding beast. I assured myself that this is common. It is common right?  I've read that the arrival of the second born is the most traumatic event in the life of a first born - or in our case first purchased. So we re-assured ourselves by saying things like "she'll grow out of it" and "this will pass."  But apparently time was not enough for Lua - in order to heal, she would need revenge.

She achieved her revenge one day on Julia's favorite stuffed animal Bun Bun (it's impossible to describe how soft and luscious this little stuffed bunny was, but seriously, we are talking about the world's most perfect stuffed animal). And she did it in a way we would never forget.

Julia and I left the house for a short while that fateful day, probably to attend a doctor's appointment. Bun Bun was positioned in his usual spot in Julia's boppy on the couch. When we returned home, I opened the front door to our tiny house and right there in front of me, perfectly positioned so there was no way to miss him, was Bun Bun, buried under an enormous pile of steaming mastiff poop.

The precision of the poop was both impressive (she's a large dog) and effective (RIP Bun Bun)!

We had been warned.

Message received Lua, message received.

Monday, November 11, 2013

Going Off Grid

Julia starts steroid treatment on Sunday for her uncontrolled sleep seizures.

The steroids lower her immune system, thus we will be going "off grid."  Not that our grid was that big to begin with, we don't do a ton, but still - what we do do (other than posting things online) is being put on pause. This realization hit me last night during my second bowl of "I"m feeling depressed so I can justify this" ice cream (delicious!).

We did this 5 years ago when we used steroids (ACTH) for the seizures Jules was having back then (Infantile Spasms) - we quarantined ourselves for two weeks. It was cozy, we had a thanksgiving dinner with just our tiny family of three, we kept her safe, the steroids worked, she got better.

This time it is for six months.

Six months of no Sunday school, no music class, no therapy, no outings, no visiting friends. Six months of semi-quarantine in the hopes that this time a different steroid (Predinsolone)will work for a different kind of seizure (ESES) and our girl will get better.

In the course of six months a lot will happen.  Holiday visitors will come and go, babies will be born, shows will be starred in, vacations taken...

And we will be here, in as safe and cozy of a bubble as we can possibly create, praying that 93% drops to 90%, then 85%, down to 80%, maybe even 70%, do we dare hope for 65%?  Yes, we do dare hope, we always hope.

Friday, November 1, 2013

Since I HAVE to be aware...

November is Epilepsy Awareness Month.  We've been acutely aware of epilepsy for almost six years now since our daughter was diagnosed with Infantile Spasms at 7 months old.

In all honesty I would give nearly anything to NOT be aware of epilepsy.

To not be aware of epilepsy would mean that I never have to give Julia another dose of meds, and I could stop carrying emergency rectal valium for unending seizures everywhere we go. I would never again watch an EEG screen record spikes and events every ten seconds, and I would never, ever, ever again helplessly watch and plead to God while my daughter convulses on the floor for minutes that feel like years.

But since I HAVE to be aware of it, since there is a month devoted to awareness of my nemesis, I might as well write about it.

Epilepsy is a terrible, devastating and relentless condition. It robs children of their development, and adults of their freedom. Being blissfully ignorant of this monster sounds like a dream. 

But like so many things in life, out of the worst situation there can be inspiration.  I have to admit that as much as I hate epilepsy I've been incredible blessed by the people I've encountered as a result. Those living in an ongoing battle with epilepsy are the inspiration.

They are amazing. They are brave. They are heroic. If we have to be aware, let's be aware of them.

Day after day these warriors overcome enormous challenges and find ways to learn and grow and develop and connect with the world even as Epilepsy is doing it's best to own their brain. They smile and laugh and take risks never knowing when the next seizure will temporarily claim their body. They are phenomenal and watching their fight is humbling to say the least.

I hate epilepsy. I want it gone. I want my sweet daughter, her precious little friends, and every person in this battle to be victorious for good. But because it is here for now, I will do my best to spread awareness of the brave warriors heroically fighting a battle they don't deserve to be in.

Let our awareness be in their honor!

Monday, October 21, 2013

It really is the little things

This morning Julia did something amazing. She linked two signs together to form a request.

Six years, three months, 30 days of life leading up to two signs:

More + glasses = I'd like my glasses please mom!

My cup overflows, my heart is bursting with pride. Hugs and tears were shared,  texts were sent, a Facebook status was updated and a blog was written. This was big. Two little signs rocked our world.

You get a diagnosis of "special needs" and you have two choices - to measure everything by what she won't do, or to celebrate every single little tiny and yet humongous thing she does do. By the grace of God we were funneled into the latter option right from the beginning and as a result have basically been celebrating every single day since.

I've often felt really grateful that Julia's diagnosis is "unique," meaning no other cases like hers. It has allowed us to write our own story, follow her lead, and drop every single expectation for what she will or will not be able to do. (I wish this for all of my parent friends, it's so freeing.)

Will she walk? Well, we aren't sure, guess we will see! But have you seen how fast she scoots?
Will she talk? I don't know, but she sure does find ways to communicate!
Will she be okay? Oh friend, she is already there.

Our parenting approach may have been different had there been 900 articles to read about what kids like her can or can't do - we may have felt the pressure or responsibility to "help" her achieve a certain standard. We may have been sucked in to agreeing to set goals for her to walk by 2 and talk by 3 and feed herself by 4 - but these would have been artificially set for our comfort.  In reality we don't know if God has made her to do any of these things or not - so we refuse to make unfair goals in the first place.  

Instead we feel we've been given a gift as parents, the most amazing gift - to sit back and cheer our daughter on, all the while saying "who knows what she will be able to achieve, but lets watch and see!"

Had you told me roughly six years, three months, and 30 days ago that I would have a six year old who doesn't walk, doesn't talk, and only knows 3 signs I might have been devastated. I would have fixated on these BIG things she won't be able do and I wouldn't have been able to imagine the little things that would make our hearts soar or dream of celebrations that would ensue over something like: "More glasses."

You can miss the little things if your sights are set above them - but every ounce of joy in my life comes from these subtle, tiny, easy to miss if you aren't patient yet amazingly huge, and life changing little things.

Saturday, October 12, 2013

Hey Fellow Moms: Good Job!!!

It’s Saturday morning and I’m up early with our daughter trying to let my husband sleep in. I made the mistake (because now I’m all worked up) of checking Facebook and reading a blog that’s been circulating all week written by a husband defending his wife who “just stays home.” (youre-a-stay-at-home-mom-what-do-you-do-all-day?)  After reading it I am fighting the urge to run upstairs, wake my husband up and demand he write a blog about me, a “working mom.”  (gasp!)

I hate that my reaction to this man’s blog is to want to defend myself – he was just trying to defend his wife which is cool of him - except that he is perpetuating what he is writing agains - judging others - and polarizing women.  Commentary on this topic (stay at home vs. work outside the home) always seems to do this – polarize us.  Put one side on the defensive.  In this particular blog the author was very clear: one side (staying home) is better, one side (staying home) is preferable – the other side (having an outside job) is tolerable BUT ONLY if it is out of pure necessity for survival, otherwise it is petty, selfish, and damaging to both our children and society as a whole.  Really? All that?  Shoot, if that is the case maybe I should be locked up.

I don’t understand why it has to be this way? Why these “mom” topics have to be so black and white. Aren’t we all moms? Aren’t we all trying? Aren’t the majority of us madly in love with our kids and doing the best we can for them?  Aren’t we burdened with massive amounts of guilt already just as a function of being a mom?  Why aggravate further these insecurities that already cause us to constantly compare and then feel the need to defend?

Why have sides? Let’s be on each other’s side!  It takes a village right?

How about instead of my side vs. your side, we do this:
You stay home with the kids? Wow, that’s admirable and I’m sure really challenging! 
You work outside the home?  Wow, that’s admirable and I’m sure really challenging!

I have many friends who stay home with their kids. I KNOW they work hard! Friends who stay home, you work HARD! I admire them and at times am jealous of them.

And while admiring them, I'm also proud of the job I have.

In my job I think I help people in some small way. I don't define myself by my job,  I don’t think I’m irreplaceable at my job – I know I am replaceable, but that doesn’t make my work meaningless.  I have many friends who work outside the home and are really good moms. Friends who have jobs outside the home, you are GOOD moms! 

For my job, I work from partly from home and partly in an office.  My daughter stays with my mom while I work. Sometimes I hate it because I want to be with her more and sometimes I think it’s a pretty fabulous gig to get to drop her off with someone who adores her and go use my brain for work I enjoy.  This is pretty similar to my friends who stay home with their kids full time and sometimes love it and sometimes admit to fantasizing about getting an outside job.  We aren’t that different – whatever we choose there are days it works and days we want something else. That's called being human!  Why make it a fight?  Why make the two sides such opposites to be defended?  When we do this we just make it that much harder for mom's to be open and honest with each other about our struggles.  It doesn't help any of us be our best if we have to hold back about our challenges out of fear of being judged for our job or lack of job.  

I want to be able to say to my friend who stays at home with her kids that at times I really want that too and that my job is kicking my butt. I want her to be able to tell me that she sometimes wants to go back to work or that there are moments she might pull all her hair out if she doesn’t get away from her kids.  I don’t need her response to be “Well maybe you shouldn’t have a job!”  And she doesn’t need my response to be “Well maybe you should get a job!”  We both need to hear, “You are amazing, you are doing SO great, and I will bring you chocolate immediately.”  That’s what we need from each other – honestly being able to share that motherhood in all forms is hard and we need each other.

So, this is my bottom line in this debate: whether I work outside the home or stay home full time, my kid is loved. If that is the case in your family too
then we are both doing a pretty flippin’ fabulous job at this mom stuff.  The logistics of our daily schedule may look different but when we put our kids to bed at night they know that in this crazy messed up world they are fiercely loved. That's what matters.

Judgment from either side of the stay at home vs. work outside the home debate (especially from those NOT EVEN ON ONE OF THE SIDES) is not helpful in our quest to survive and thrive in  motherhood, which I think we can all agree is the toughest and most incredible job on the planet.