Turning Point?

Today is two months and seven days since we learned of little Ayden's diagnosis.  That seems impossible to me.  How can time have flown that fast?  So much has happened, yet so little has happened.  Ten weeks and one day until our due date.  How is it even possible?

The majority of what has happened in the last two months has been processing, and celebrating.  Don't get me wrong.  There have been plenty of tears.  I had a meltdown because of cheese.  Uncontrollable sobbing...over cheese?  Probably a little more going on in my mind than cheese.  I'm sure you understand.  But after the meltdown was over, it was a little funny to look back and realize how devastating cheese, or lack thereof, or simply having the wrong kind, was in that very moment.  The tears are still quite prevalent, and they catch us off guard and come at unexpected moments, but so does the joy. 

I want to talk about a conversation Nathan and I had during my first week back at work after everything happened.  I had just received a pile of cards from coworkers, and I was at least wise enough to wait until I got home to read them.  Nathan wasn't home yet, so I sat in my car after pulling up to the house, and began reading the cards.  I was mostly procrastinating walking into an empty house, which seemed like an impossible task.  Going back to work had been rough.  Really rough.  Not because of coworkers - they had been amazing and understanding.  It was just rough because life was still really rough and the last place I wanted to be was at work, away from Nathan, feeling like I was wasting precious time I could be spending more intentionally with my baby girl.  So there I sat, in my car after a long day at work, after a really rough week and a half.  I sat there reading the cards, and the last card I read was signed by about a dozen people who work in our southern offices (Portland, Vancouver, Tualatin).  There was a theme amongst what everyone wrote.  Almost every single person who signed the card said how much Ayden was loved already, and that they were praying for a miracle for our baby girl.  This resulted in one broken hearted momma having an absolute meltdown in her car, because of how badly she wanted a miracle for her little girl.  I couldn't stop thinking about it.  All I wanted was a miracle, for my baby to magically be healed, for there to be nothing wrong, for her to grow up with her mom and dad, for us to celebrate ever single moment of her long happy life.  In that moment, I was so utterly heartbroken, I could think about nothing else.  I wanted that miracle.  But how do you hope and pray for a miracle, while also preparing for the miracle not to happen?   I texted Nathan, told him I was having a meltdown, and he was home within ten minutes.  He's so good to us.  I don't remember the rest of that night, but I remember a conversation we had about desperately wanting miracles a day or so later.

We had just come home from somewhere, and found ourselves again parked in front of our house, procrastinating going inside.  I must have brought up how desperately I just wanted a miracle for our little girl, because that was our topic of conversation.  Nathan is really wise, and smart, and sometimes it's really annoying.  Sometimes I don't want to hear the wise or smart thing, and I just want to hear what I want to hear, and nothing else.  Luckily, God gave me a man who is always going to tell me what I need to hear, not what I want to hear.  In all of his gentleness and kindness, Nathan started talking about how desperately he wanted a miracle as a child and teenager.  He was born with a very rare muscle disease, McArdle's.  It is quite complicated, but the short version of it is that he doesn't burn carbs for energy, he burns animal protein for energy (no soy for him), and his body doesn't produce lactic acid, which is kind of essential for rebuilding muscle after its broken down.  As a child, he was very prone to injuries, and grew up in more physical pain than most people can imagine.  Oh, and he also had epilepsy, which kind of made the whole muscle breakdown infinitely times worse.  I remember him telling me a story about how he told his mom he was sad, but didn't know why.  Really, he was in a ton of physical pain.  But this was before they knew of his muscle disease (he was diagnosed at 9 years old), and he actually had been in so much pain his entire life that he could not distinguish between emotional and physical pain.  He said he was sad because he was in pain, and he thought that is what sadness was.  His childhood obviously looked a lot different than a lot of children's childhoods, due to his disease.  Same went for his teenage years, and even now in his adult years.  As we sat there in the car, Nathan told me of how many times he begged and begged God to heal him from his muscle disease, fully convinced that being healed would be the best possible option for his life.  It would present so many more opportunities, he would be able to do so many more great, noble things.  His motives were pure.  And he wanted nothing more than to be healed of his disease.  But then Nathan began telling me of how his disease has changed and shaped him into who he is today.  How if he had not had his disease, his life would be completely different.  The likelihood of the two of us ever meeting would have been greatly diminished.  We probably would have never met, never gotten married.  Who knows where I would have ended up - I probably would have died because I refused to go to the hospital when my appendix burst, and luckily he was there and drove me to the hospital.  He said he probably would have joined the military, which means he could have been deployed, and never come home.  The possibilities of how his life and my life would have been different are endless, and impossible to predict.  Then he started talking about how though his disease has been so painful, physically and otherwise, he doesn't pray for a miracle anymore.  He refuses to let it define him, he refuses to let it limit his purpose in life, and he refuses to let it get him down.  He is part of a Facebook group of people all over the world who have McArdle's, and it is so, so sad reading all the posts of people who only focus on the hope that maybe someday there will be a cure, but in the meantime they have no interest in doing whatever they can to be healthy right now (treatment and management of the disease takes great discipline in diet and exercise).  They are angry, bitter, hurting, and unhealthy.  Nathan refuses to settle for that, and takes every day as an opportunity to better himself, grow, learn, and generate change.  He still prays for a miracle, but the miracle he needs, even if it isn't the miracle he wants.  He acknowledges that he knows that it is impossible for us to truly know what we need, until after we have it.  Therefore, he lives every day trying to be the best person he can be, rather than just praying for different circumstances that he thinks will help him be a better person.  He decides to make changes to his life, rather than waiting until his circumstances miraculously change.

Stupid, dumb, wise, Nathan.

I really can't tell the full conversation well.  You would have had to be there to experience Nathan's grandiose wisdom in all it's greatness.  But I can tell you that something clicked inside me during that conversation.  It was like something went from knowledge to true understanding.  All I want is a miracle.  All I can see right now is how horrific my situation is, and the best possible alternative is a miracle.  What I can't see, is the full picture.  I can't see what ripple effect Ayden is already having on so many people.  I can't see the growth I will take as I come out of this.  I can't see so many things.  All I could see was a way to not have to experience the pain I'm experiencing.  But something clicked in my heart, and I knew, in the deepest part of my being, that if a miracle was not what God has in store for our little family, that He would find a way to redeem our situation, and use it for something far greater than I can picture or imagine right now. 

I know what some of you are thinking.  Wouldn't a full life be able to accomplish so much more than a short life?  Isn't it possible that if she lived, she could change the world?  Don't think I haven't gone down that road forty seven billion times, and explain that to God just as many times (yes, I explain things to God, as if He isn't already all-knowing.  You don't?  I think that makes you the weird one).  But here's something I've come to grasp.  Bear with me.  These concepts build on each other. 

1.  This is not "God's will" for us and Ayden.  Now, before you tell me I'm a bad Christian and I'm probably going to Hell, let me explain.  If you still think I'm going to Hell after the explanation, that's fine.  I don't really care what you think.  Anyways.  God created a perfect earth, void of death and pain.  Then humans screwed it all up, and we started doing things that hurt ourselves and hurt others.  This was not what God wanted for us.  This was not His will for us.  His will was a perfect dwelling place, where pain did not exist.  Throughout the existence of humanity, we have really messed up the world, and can't figure out how to stop hurting each other.  Horrific things result as consequences of the actions of humanity; murder, suicide, abuse, war, illness, suffering, death, etc.  The world simply isn't as it should be, and thus you get circumstances such as ours, where horrific things happen for no apparent or explainable reason.  Thus, I don't think this is His "will" for us, but it is simply a result of a world that is not as He intended it to be.

2.  God can use any circumstance for something greater than we can possibly imagine.  Romans 8:28 says "and we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them."  This doesn't mean that if we pray right, God is going to change our circumstance into what we consider to be the "good" or "best" scenario.  I wish that were the case.  This verse means that if we love God, and let God use our circumstances, no matter how horrendous the circumstances may be, He will turn it into something good.  He will give our most difficult circumstances purpose.  Will he take away the pain?  No, but He will provide joy in spite of the pain.  Will He give us whatever we ask for?  No, but He can take anything the world throws at us, and let good, and great, things come out of it.  He provides a way for a horrific circumstance to be redeemed, and turned into something great. 

3.  I still, with all my heart, want a miracle.  And I always will.  However.  Rather than focusing only on a miracle according to how I define a miracle, healing for my baby girl, I am going to focus on letting every single day be a miracle.  I won't let her short life be in vain.  I won't succumb to my grief, be defeated, and wallow in self pity.  I will live each day with a refined perspective on the value and sanctity of life.  I will accept the fact that I will lose my baby girl.  I will cherish every kick.  I will share her story.  I will love the way I would want her to be loved if she were to live a full life on this earth.  I will live with joy. I will experience pain, and choose to let that pain be used in order to love others better. 

Therefore, all things taken into consideration, after that chat in the car with Nathan, a small sense of peace began to grow in me.  Was the grief gone?  No.  Do I still desperately want a miracle, healing for my baby girl?  100%.  Is that all I focus on?  No.  But that small sense of peace, despite the times I want to ignore it, drown it, scream, and remind God of how stupid the universe is, hasn't gone away, and it has started to grow.  It's there in the darkest of moments, when there is no reason for it to be there.  It's started growing, despite the fact that the grief has not subsided.  It's the hint of purpose, of something greater than I can comprehend.  It's a reminder that even though we live in a world full of pain, suffering, injustice, and just downright unfair circumstances, there is still hope.  It's a reminder that when I don't feel like loving others, I'm reminded of how much love I've received, and how much I desperately want everyone to know how great God's love for them is.  It helps me look past the stupid things that normally frustrate me, gain a little perspective, and choose gratefulness and joy, rather than anger and frustration.  It helps me see past people's actions, and understand that really, we all just want unconditional love (we are just usually really crappy at accepting and showing it).  More specifically, when I think of Ayden, and how desperately I want her to have a full, completely, long and happy life with us here on earth, and then I'm reminded that she won't, it helps me not give up and lose hope.  There is purpose despite our circumstances, purpose despite our pain.  None of this takes away the pain from the reality of what is going on, but purpose is a powerful thing, even when we can't fully see or understand that purpose.  The bottom line, is that we are refusing to let a circumstance brought on by an unfair, unjust, stupid world define and defeat us.  We will continue to love, grow, and overcome.  We will do it despite how much it hurts.  We will do it because we believe God, though this was not part of His perfect will, will use our circumstances to accomplish something great.  We will continue to love, at all times, in all circumstances.  And I don't really know if there is anything more powerful than that.