Wednesday, February 25, 2015

She Doesn't Need Healing

We stopped going to church when Julia was a baby.

Not because we had lost faith, in fact, for me at least, this was a time of intense faith and closeness with God, but just not in a church building, and not surrounded by a lot of Christians.

It was the Christians we stopped going to church because of. Specifically the Christians who kept offering to pray for Julia to be healed.

We seemed to make them uncomfortable with this baby of ours who was different, this baby who wasn't perfectly healthy, wasn't just "fine."  They didn't seem to know what to do with us. Our presence was causing them to have to think about their God and their faith in a way they were not comfortable with - so instead they did the one thing they knew how to do, they offered to pray for healing.

"We are praying for her to be healed."
"We are praying God heals her."
"We have faith God will heal her."
 On and on and on, heal, heal, heal.

You would think these offers of healing prayer would have brought us comfort, but they did not. They brought pain and confusion - because it felt like rejection - like we were unacceptable "as is" - we needed to change, or she needed to be changed, before we could be embraced.

These offers also made me uncomfortable because somewhere deep inside my reeling, confused and sleep deprived newborn-mom brain, I knew Julia's healing was not what we needed.

You pray for healing when the diagnosis is a disease.

But Julia was not diagnosed with a disease.

Basically Julia was diagnosed with "this is just how she was made."

I didn't know exactly what you pray for when the diagnosis is "God made her this way," but  "healing" didn't feel right.

What would we be asking she be healed from?  The very blueprints God used to create her? Would we go before God and ask that he change her very being to make it easier on us? I cringe even now at the thought.  I didn't know much in those early days, but I knew I did not want her changed.

I also knew I needed more from my God then a "fix."

I needed a god who does more than just take away hard things, more than a "genie" god randomly granting wishes. I needed a god who would help me IN this hard thing and WITH this hard thing, not just out of it. If all you believe your god can do is take away pain then that isn't enough for me, that isn't my god. Because I found myself experiencing for the first time a pain I didn't want taken away. So how does that work? God has to be more than a fixer of pain or nothing makes sense - because I see a lot of pain in this world that hasn't been taken away. So what does that say then about God if your faith in him and his goodness depend solely on the removal of what we think is hard or wrong?

That's just too simple for this beautiful heartbreaking life.

I'm not a biblical scholar, but I KNOW my God did not promise us a cake walk in this life (John 16:33). So why is a cake walk exactly what we beg Him for the moment hard things appear for ourselves or others? It doesn't add up.

When Julia was about three years old we cautiously started going to church again thanks to the recommendation of friends and family who loved us and knew what we were wrestling with in regards to other Christians. We found a church where the motto is "Me too" - basically a general statement of acceptance for everyone - come as you are - you don't need to get better to be here - we are all the same - we all need grace.  It felt like the kind of place where they might say "Hey, Julia is pretty awesome!"  Rather than "Hey, Julia needs to be healed."  It's been a good home for us.

I remember one Sunday morning in particular, our pastor referenced a verse from Romans chapter 8 where Paul writes about being more than conquerors through Christ. That phrase "more than" - why did Paul write that? Why not just conquerors? Conquering seems pretty good to me. Because, our pastor explained, you are a conqueror when your challenges are gone, but you are MORE THAN a conqueror when you live victoriously with your challenges still present.

There it is!!!!!!!!
That is my verse!! (Romans 8:37)
And that is my God!!!!!!

That Sunday morning our pastor gave words to what I had been trying to figure out all of these years about how I understood God. That was why I was so uncomfortable with the "healing" stuff: I don't need (nor want) these challenges removed, I have a God who makes me victorious with my challenges, while I am still very much in the hard stuff.

So, this is what I have come to understand about Julia and healing over the past seven years:
It isn't Julia who needs healing. It is the rest of us.  Julia is a precious catalyst for God to heal some of our deep brokenness. The brokenness that causes us to fear and reject what is different and weak and vulnerable.

Please know that I am not against prayers for healing. I do it all the time. I've just learned that often we are too specific in what we are asking God to heal, too specific and usually off base.

Don't pray for her to change, pray for us to embrace her as she is.
Don't pray for her to change, pray for the community to shift how they view her.
Don't pray for her to change, pray for yourselves to change how you understand hard things.

Don't pray for her to be healed, pray for my healing and pray for your own:

Heal me from my selfishness.
Heal me from my insecurities.
Heal me from my need to control.
Heal me from my fear of hard things.
Heal me so that when hard things come I will stand firm, I will move towards, 
and I will be MORE THAN.

"In all these things we are MORE THAN CONQUERORS through him who loved us." - Romans 8:37

Tuesday, February 17, 2015

Is It Working?

Two weeks ago Julia went green and started medical marijuana (Haleigh's Hope to be exact) to treat her seizures.

First and foremost, we've received TONS of support - mountains, mountain ranges of support for this decision - and for that we are incredibly humbled and grateful and super boosted up! Thank you support!

In the past couple of days many of our mountains-of-support have been asking us the million dollar question: So, is it working????

And my answer, which, because I am a pleaser, I so desperately want to provide is... Ummm, I think so?

I hate being vague, but this is a tough question to answer at this point.

Tough for a few reasons:

1. Julia is non-verbal. The non-verbal issue doesn't get a ton of air time from me, sometimes I even forget she is non-verbal because she is so great at finding ways to communicate her needs. But in moments like this when I would so love to pick her brain and ask her "HOW DO YOU FEEL????" I am reminded (frustratingly) that we don't have this avenue of clear communication and understanding available to us. So we do our best to decipher and interpret her behavior to determine how she might be feeling.  For example: She seemed calm today. Oh that's great! Calm is great! Wait, unless she is calm because she is sick. Do you think she is sick, did she act sick?  Or was it a good calm like calm because the marijuana is working? What kind of calm are we talking about????
And well, it's an imperfect science to say the least.

2. It's only been two weeks and she is on a tiny, tiny dose.  I think we will need more time and possible tweaking of both the amount and CBD:THC ratio to land on the optimal dosage for Jules - and well, you can't do much to rush time, trust me, I've tried. So the plan is we will call her MMJ doc (I don't know if that's what this doctor wants to be referred as, but in our house she's the MMJ doc), we will call her on Monday, give her all of our impressions and observations, and see how she wants to proceed. (Side note: a few people have asked me how this whole thing works with our other doctors - and all I can say is that both our pediatrician and neurologist work for large health care companies and are not allowed to give much feedback on our MMJ journey - so we are just keeping them informed but not getting any sort of guidance from them - I hope one day that will change.)

3. Julia doesn't have a ton of seizures (thank you Jesus!). I wrote about this before, but Julia is a little different than most of the kids currently using medical marijuana for seizures in that she doesn't have uncontrollable seizures - nor does she have daily seizures, even off of medications. Basically she is prone to having seizures because of her unique brain and she has them frequently enough to need to be on something to try to prevent them. But she does not have them frequently enough that I can tell after two weeks whether or not there has been a decrease in seizure activity.  We have chosen to use medical marijuana as a treatment option because we don't like the side effects of other pharmaceutical anti-seizure medication she has been on for the past seven years AND because it is an option for us here in Colorado. We wish this was an option for every family in every state to decide upon.  Many families have packed up their lives and moved to Colorado to give their kiddos a chance on medical marijuana - mostly because nothing else has worked.  We hope that through our pursuit of this option and in sharing our story, we can play a tiny part in making this option available for ALL families to try - no matter what state they live in!!!

So those are the reason it is hard to say for sure if it is working or not. But here is one more thing I can say for sure: It isn't making things worse!

Last month when Julia had her scary seizure that landed us in the ER and started the chain of events that led us to Haleigh's Hope, we had to temporarily re-start her on Keppra. One day on a very low dose of Keppra and she was a wreck. She could no longer walk - she lost all of her balance and couldn't take two steps without crashing. And her agitation skyrocketed. She was hitting herself and pulling out her hair, acting like it was painful to be in her own skin. It was heartbreaking to watch.

Two weeks into Haleigh's Hope (with Keppra gone again - yay!) she is walking like a champ, balanced and confident! And her agitation seems to be down. Oh and no seizures (which like I said before, doesn't tell us a ton, but no seizures is a heck of a lot better than some or many).

So that is how we are getting to our answer right now about if this is working for her... We think it is working because we aren't seeing awful side effects. We think this is working because we are maybe even seeing some positive side effects. And we think this is working because she is off all her other medications and hasn't had a seizure!

We can't know what tomorrow will bring, but for today will take that as a victory my friends! Indeed we will!

#haleighshope #marijuanaismedicine #legalizemedicalmarijuana #cureepilepsy

Friday, February 6, 2015

Why God? Why?

The other day my mom shared with me an interaction she'd had the night before with a friend at church. This friend, who knows about Julia, was telling my mom about another woman she knew who had a son with special needs and about how difficult life had been for this woman because she never was able to accept her son's challenges. She seemed sad and in a state of regret throughout her sons life, continuously asking the question "Why God? Why? What did I do to deserve this?"

I asked my mom how she responded to this story which sounded very sad and her answer surprised me, "Well," she said, "I told her, 'I understand, we ask the very same question: Why God? Why?'"

This threw me off for a second because this did not sound like my mom or the way my mom usually talks about Julia. But she went on...

"But I told her, we ask 'Why?' for a different reason. We ask 'Why God did you pick our family to receive such a blessing? Why God did you see us as worthy of your beautiful gift? Why God did you chose to change our lives in such a magnificent way through Julia?  Why God? Why? What did we ever do to deserve her?'"
"Mimi and Jules" photo by Steve Stanton

My heart nearly stopped beating.

Here was my precious mom, the woman who raised me and prepared me for this role, standing in her kitchen in front of me, speaking the most beautiful and important truths into me about who God is and how He cares for us. And reminding me, once again, that God is so good at loving us in far better ways than we could ever imagine, but we have to be willing to adjust our eyes to see it.

And I can imagine as I write this, how to some stranger's ears my sweet mom's words could sound like super religious, "church-y" jargon, or perhaps they could sound arrogant, like "look at how good we are doing with this whole thing, do it like us." But I promise that is not the case. Her words were genuine. Honest words from a humble and wise woman who feels blessed beyond her wildest imagination through the life of her little granddaughter. And she is grateful. Nothing more. Simply grateful.

Her honesty and gratitude are the result of realizing that being needed is not the burden our culture makes it out to be. And that dependency is not a curse. To be needed gives us purpose. Caring for another is when we are most alive. God gave us Julia and in doing so made all of us more fully alive.

How can that be anything but a blessing?  

Why God? Why? What did we ever do to deserve her?