Its been nearly a month since I posted last.... I'm having trouble putting together words. It's incredibly kind of you guys to come here anyway checking up on us, even as I am not writing. For those who don't know, I do post nearly daily on our facebook page, www.facebook.com/chasingzebrasblog. You are more than welcome to add us there if you would like to keep up with our latest developments.
There is a pattern, a cycle, I have gone through on this journey. It started with panic when I realized Addison couldn't poop at all. Everywhere we went, doctors acted like it was no big deal. When 15 days passed, she was vomiting every meal, not gaining weight, and growing tinier and sicker in front of my eyes. That was the first time I felt my mommy heart reach a boiling point. There was a whirlwind of multiple ER visits that ended in tears every time they tried to us she was fine. I knew despite whatever the doctors said, that there was something very wrong. I never ever could have imagined how wrong. Constipation is just not something people take seriously- even in very very extreme cases. I'll never forget January 2011, the surgeon walking out to me after her first procedure and saying: I'm sorry, your daughter has Hirschsprung's Disease, she's likely going to need major surgery this week. I cried like a baby.... surgery in my tiny baby was the worst case scenario.
I learned quickly both were untrue - Addison did not have HD, and a single surgery was far from the worse case scenario. I had been blessed up until this point to have no firsthand knowledge of sick children. I knew it happened out there somewhere, but not to me.. I thoroughly enjoyed my cozy little bubble. Next they told us they were sure it was cystic fibrosis. The first time of many many many times I would hear that my daughter was likely victim to a deadly disease. I cried on Adam's shoulder as soon as they left the room during a 12 day inpatient workup. One word crept into my mind.... why? Like uninvited ants to a picnic, the thoughts began to press forward despite my meager attempts to tune them out. First I bargained with God. "Just fix her!" I cried out one night to no one in particular. But perhaps I was the one who needed fixed instead.
After a few heartbreaking days, we learned CF was not our battle either. Nor was the next thing or the next thing or the 10 other things after that they tested for. As we made little fixes, she began to progress and thrive again - athough only slightly - we rejoiced and were finally able to relax a little, finally convinced that maybe she would outgrow all of this and we could have a 'normal' life. Then one day, everything fell apart again. This time I was angry at God. "How could you let me think it was going to be okay!?" I felt duped. Looking back, perhaps He was offering me a few extra days of peace to restore my strength for what was to come. Once again, I angrily thought it couldn't possibly get any worse. That was as stressful as life had ever been - as it set in that I had a chronically ill child. It makes me smile now, I was so blissfully unaware. So sweet that my little not-pooping baby was the most terrible thing that had ever happened to me. She smiled through it all and kept a smile on my face as well.
Then, on a warm beautiful September morning, my tiny 9 month old superhero began to fall apart, quickly. She had a procedure schedule and when they brought her out to me after, she seemed to not even be there in her body. Ill never forget that panic in my heart at seeing her staring blankly through me like she had no idea who I was. They reassured me it was just the side effects of anesthesia and she would quickly be herself again. It never happened. It took a few days for me to realize something was truly not right. Then it took another two weeks for me to get the courage to go to our pediatrician and say "you have to listen, something is very, very wrong with her". Addison's regression was painful in and of itself, but everywhere we went, doctors, friends, and well-meaning family said things like, "I'm sure she will snap out of it soon!". There would be no snapping. Or clapping. Or waving. Or walking. Not for a very long time... and not without a Herculean effort by Addison and her therapy team. This time I wasn't angry. I grieved. I cried in my pillow for the giggling clapping baby who had been in my arms just a few days prior. Its still painfully difficult to look at the pictures and videos I had taken of her. My little miss, so determined to do everything on time despite her rough start. For ages, my life was mentally divided into before and after her regression. I guess in my mind it was the turning point of the whole thing. I was incredible sad and it was hard to fight, because I didn't know what we were supposed to be fighting.
I continued on this path, through Audrina's tumultuous entry into the world, and up until that point I had never felt so much elation and joy during a terrifying moment. Laying eyes on that little 3-lb lump of baby was like winning the lottery. The first time Audrina was rushed to the hospital, it never occurred to me it would be the same path starting over. It was simply a 'preemie-thing' we were going to work out. I kept thinking, let me get through these next few days, then it will be okay. Except those 3 days milestones I was setting just kept coming. And going. Then one day it began to feel like deja-vu.... as much as I denied it and made excuses for the similarities, I knew something was once again, not right with my child. Then we slid wayyy back to the anger. The anger that had been burning quietly behind the scenes while I smiled and told everyone we were fine, had become an inferno. How dare God do this to us AGAIN?
In the months that ensued from that point, I began to accept once again, that this is our life now. I let it go, I prayed for peace and understanding. And I felt I made leaps and bounds. And then one day, Audrina started twitching. And once again, it became something terrifying that threatened to take over our lives. And once again, we get no answers. We have no course to steer our ship. We have God as a compass but we don't know where we are going so it doesn't feel all that comforting right now. My anger is under the surface again, looking for a place to escape, waiting to catch me alone at the most vulnerable moment. I try not to be angry at God. I tell myself He knows how this is going to end. (Must be nice!) I tell myself He knows I am growing through this... although I don't know any farmers that think a hurricane does a better job reaping a harvest than a little sprinkle and sunshine. Its so raw and so unfair and right now, all I can do is be human and let these emotions burn out so that peace may come once again. This cycle is exhausting, its maddening. Every time I think I am more 'together' something else threatens to leave me unglued. It beats you down after a while.
Ephesians 6:16 says that the shield of faith can extinguish all the fiery darts of the wicked. ALL. Everytime. Faith will be enough to save me, every single time I walk this path. No matter how angry, no matter how much I question the journey. As long as I put one foot in front of the other, I can be angry. I can be impatient. I am loved in spite of and because of my flaws. With each step I grow more faith, and with each extra bit of faith, I get stronger. A lot of people think faith is just believing.. that there is no tangible part of faith. Substance, evidence, reality. Faith is God's words in ACTION in our lives.
“Now faith is the substance of things hoped for, the evidence of things unseen.” Hebrews 11:1