Can I just start by saying, “Wow, what a year we’ve had.” I started going to church in October and even though I felt uncomfortable and out of place, I kept going. By my second month there, I broke down and cried. Being raised without a “traditional” family in a “traditional” home, I’ve always had a sense of loss. I know that it sounds like I am asking you to pity me, but I’m not. My troubles only made me stronger and put me on the path I’m on today. Even still, the fact that I grew up with two parents living in two homes in two towns is no surprise. How many parents in America are divorced before their children start Kindergarten? Honestly, that’s just a sad fact of life for many. The fact that my mother remarried and then once more did nothing to help the situation. I can understand her side of things more so now that I’m an adult. She was just a woman who wanted to find love. I envy the fact that she never gave up looking for true love, even after her relationships failed. Unfortunately, having no strong male role model growing up has left me awkward around men and unable to effectively communicate. This means that when I want to talk to my Pastor or any male inside my church, I do so without even making eye contact, because it feels incredibly uncomfortable and personal to me.
Growing up, the only other person I had in the house was my brother. You would think that as the “man of the house” more often than not, we would have developed a close bond. Oh how I wish that were true. We are two different people and we lead two very different lives. There are shows that I see coming on the tv late at night where brothers and sisters get together for dinners, for parties, for heart to hearts and I feel a twinge of jealousy that I will never have that. We have never been close and I feel that is something we will never be. I love him with all of my heart, but the feeling just doesn’t seem mutual. His views of the world and the way we were raised are strong and he can’t understand how it is that I want to live my life in a different way. You see, growing up in a certain way means you end up turning out in a certain way if you aren’t careful to avoid it. Either you let the pattern repeat, or you do your best to break the cycle. We each went the opposite direction from one another. He lives in the way that my parents lived. He does what he feels needs to be done, regardless of consequence. He isn’t afraid to call you out if you disagree with him and call you names. He can’t get through a day without beer in his hand, just like the majority of the family I was raised by.
So why did I weep my second month of church? Why did I collapse to the floor while cooking lunch one day because the pain in my chest was so overwhelming? I will tell you why. For the first time in my life, and I’ve said this before, I feel like there are people I can turn to. I feel like I can ask people to pray for my children and they will listen. I feel like I can voice my opinions and they will be heard. I struggle daily to talk to these people that I barely know who aren’t familiar with my story, and I can attest that making friends as an adult is no easy task, but I try. I have people that I feel a connection with in a way that I have never felt with anyone else. These are people I feel I can turn to and tell anything. They feel like my sisters without actually being my sisters.
This past year, we have struggled more than I have ever struggled in my life. Isn’t it funny how this is the same year I felt the need for Jesus in my life? Our daughter has been in and out of the hospital since last July. Between her Cyclic Vomiting Syndrome and the unknown issues she has right now, we are spending the majority of our free time driving her from Specialist to Specialist and Hospital to Hospital. The miles on the car are rising fast. As of right now, my poor six year old has a Pediatric Gastroenterologist, a Pediatric Nephrologist, and a Pediatric Urologist. She also has daily medications to prevent her from vomiting and that allow her to gain weight, but you can read about all that in a previous blog post or two.
This past week, she had yet another appointment. In fact, it was her second in one week. She had to have a procedure done called a Vcug. We were assured it wouldn’t hurt, but I knew it would. The hospital was great and the nurses were as well. Unfortunately, it did hurt, and I was left once again fighting back tears as my baby screamed and tensed up in pain on that table. I keep asking myself why she has to go through all of this. I keep asking myself why we can’t just get answers already. The incredibly guilt I feel every time she has a test done that comes back normal is almost unexplainable. You don’t often hear parents say that they wish their childrens test results would come back with an issue, but in her case, it would mean answers… it would mean medication, control, treatment, or a cure. In her case, abnormalities would mean answers, which is all we’ve wanted this year.
So why do we continue to put her through this? Why do we force her to see specialist after specialist in town after town? Why has she had nurses and doctors looking at parts of her body for the past six months that I never thought would need to be seen until puberty? Why have we had to have in depth conversations about who is allowed to check her over and look at her in certain ways? Why are we allowing this difficult and heartbreaking process to go on? The answer: We have no choice.
Now, let me back up a minute. When I say we have no choice, I don’t mean that we actually have no choice. Of course we do, we are her parents. We could pull her out of these offices and just say, “No more. We’re done. She is too tired to carry on!” However, we would never do that. She deserves answers. She deserves a normal childhood, a medication free morning, to experience the joy of eating without being forced into it, the sensation of wanting to eat, the ability to buy clothes in her own size and not need to wear clothing that would fit her soon-to-be 2 year old sister around the waist. She deserves to be able to rough house without worrying about bones breaking due to how thin she is. She deserves to be able to wake up without her eyes looking black and sunken every morning due to one thing or another. Doesn’t she deserve all of these things? She is only in kindergarten and she knows more about female anatomy than I did by fifteen. How is that fair? How is that okay for a small child?
We put our daughter through these things because we want to find the problem and have it solved. We put her through these painful procedures, in the hopes that one day, the right test will reveal what we’ve been missing all along. This is the real world. There is no Dr. House out there who can look at her case file and cure her ailments in thirty minutes while telling us how overwhelmingly stupid we are for not putting the pieces together. There is no magical thirty minute solution that would allow us to determine what has been going on with her tiny little body all this time, because if there were, we would have found it by now. Instead, she continues to struggle. Tonight, she struggled to eat, to use the bathroom, to fall asleep, to follow directions…struggles. Her struggles are my struggles. They become family struggles. We all feel the pain when she is hurting, exhausted, or emotionally drained. We see the annoyance in her eyes when we tell her she has yet another appointment that she has to miss school for. When she hurts, we hurt. When she doesn’t hurt, we still hurt. We hurt because we are her parents and it’s our job to hold her, hug her, love her, and promise her it will all turn out okay, but as her parents…that is not something we can do right now. So instead, we turn to Christ.
In Christ, I tell her, things will work out. In Christ, I tell her, the answers will be found. God wants us on this journey with her in this moment and we can’t understand why just yet, but one day we will. She smiles as I tell her these things and her eyes sparkle as she tells me that God loves everyone. She enjoys telling me stories that she hears at church and asks me if I knew there was such a place as Jerusalem. A year ago, on a night when she was suffering from her sickness, she cried and her eyes had sunken further back into her head than usual. “I wish this had never happened to me.” She whispered. “I wish this would never happen again.” “Me too,” I would tell her as I stroked her hair away from her face and looked down at her swollen and cracked lips while fighting back tears, “Me too.” It was in these moments that I was always demanding to know why.
“WHY GOD? WHY WOULD YOU DO THIS TO HER? SHE IS SO SMALL, SO FRAGILE, SO WEAK!” I would think.
“WHY GOD? WHY CAN’T YOU HEAL HER? CAN’T YOU SEE HER BODY IS ABOUT TO GIVE IN?” I angrily shouted towards him in my mind.
I thought that in those moments, my anger would be powerful enough for him to hear me, answer me. I thought in those moments that my silent screams were prayers. I couldn’t accept that our Lord would allow a child to suffer in the way she had been suffering. I resigned myself to the fact that if there was a God, he surely mustn’t care about us. I was convinced we were being punished.
A year has passed since that trying moment where I shouted those angry accusational prayers. A year has passed and we are no closer to answers. The months have gone by slowly and with each month that passes, we have yet another test or appointment for Emma. I wish I could tell you the exact moment things changed for us. I wish I could tell you the exact moment I stopped feeling angry with God for hurting my child and started asking for his help navigating these dark waters instead, but I can’t.
What I can tell you is that through it all, we have not remained strong. Our faith has not been solid like a rock. Our foundation has not held steadfast. Our family has quaked and quivered under the stress of it all and we’ve nearly been broken by it a time or two. We can’t honestly say that we turned our eyes to Jesus and kept them there in the most trying times. We can’t honestly tell you that we don’t still feel angry at the world for not giving us the answers that we need.
BUT, What I can honestly tell you is this:
In the midst of all this chaos, I felt an intense need for Christ in my life. I had questions that needed answers. I had a hole in my heart that was never patched, regardless of what It was I used to fix it. I had talked to God before through the tears. I had shouted angrily at him into the skies. I had even cursed his name for allowing my child to feel pain, But never had I gotten to know him. Never had I learned of his life or death on the cross. Never had I heard the stories of the bible. I once told a friend that there was no reason to get to know God, because he had already written me off as a sinner. How could I have known that the reason Christ still loves me today even WITH my sin is because he died on the cross so that my sins could be washed away? How could I have known?
Today, I go to church every Sunday. I participate in a Women’s Bible Study and I e-mail my Sunday School teacher regularly. She has been an amazing tool in my journey to Christ. She makes the stories of the Bible come to life and seem as though they could pertain to life today. She has passion and motivation, charisma and understanding, and best of all, no question is ever too stupid for me to ask her. She allowed me to speak to the class on Emma’s condition and she has included Emma in her group prayers. She has a personality that is so free and fun that it’s almost childlike. Her excitement is contagious and it doesn’t take long before our entire class is laughing as she stands up and cheers for her favorite parts in the story. Her husband, my Pastor, has also been an incredible tool in my journey. He was the first one to meet with me and answer my questions. He was the first to tell me I should take his wifes class. He was the first to teach me in a classroom what it meant to allow Jesus to be the King of my life. When I think back to the past and wonder why I had to live a hard life and why my daughter is having to do the same, I realize that we often times have to face darkness, hardships, sorrow, and mourning in order to truly be willing to turn to Christ. As someone raised with no religion and as a skeptic, I never thought that I would be able to trust Christ with my life, my problems, or my soul. It’s a sad life when you decide before you turn 21 that you will spend ETERNITY in Hell, because of who you are as a person and how you were raised. Now, at age 28, through the trials and tribulations of my life, I am finding Jesus right in the middle of this storm. I am asking him to be my guiding light when I can’t see through the torrential downpours and I am asking him to be my compass when I don’t know which way to turn. I am relying on him to get me through all that we are facing.
Ten years ago if you had asked me about Jesus, I would have given you my standard reply, “I don’t believe in God, I just believe in something.” I was afraid to say I was a Christian. I was afraid to say I believed in Jesus. I was afraid to speak those words out loud, because that would allow that truth out into the world, which I wasn’t ready for. How can you say you don’t believe in God when you mumble a silent prayer to yourself in hard times? How do you say you don’t believe in a God, when you thanked him for your children and called them his miracles? How do you say you don’t believe in a God, when you’ve seen things in your own life that wouldn’t make sense if not for his divine plan for you? Sometimes, in this life, we refuse to be the people we are, because we only want people to see who we think we should be. This is something I struggled with for many years and continue to struggle with today. I speak to people in my church, in my Sunday School class, or online and I think immediately that they don’t like me. I play the conversations back in my head a dozen times and analyze every facial motion I see. I feel almost like a hypocrite for having been raised the way I was with no religion and then claiming no religion before one day suddenly deciding that I needed Jesus in my life.
Let me tell you something right here and now. I am no Christian Scholar. I am just a few months in and learning the basics, but I feel closer to Jesus with each new page. I listen to Christian music, I talk to my daughter about the Bible and Jesus, and I add my own stories in to our bible study tales in order to make them feel like they are more relatable to my own life. I whisper prayers inside my head as I’m falling asleep or driving to the store and I have even done it in the shower a few times. I think of how patient Jesus has been with me when I am getting angry at my children and I try to calm myself, because if my Father can wait 28 years for me to believe in Him, then I can wait 15 extra minutes while my children brush their teeth and get ready for bed.
This year has been a hard one, but it would have been a lot harder without Jesus or the people he placed into my life during the past six months. As for Emma’s illness, while I still struggle with understanding a reason why she is going through what she is, I also use this opportunity to advocate for her and other children like her who suffer from a disease so rare it is thought to affect a mere 2% of the population. If there is one thing her condition is good for, it’s spreading the word about it and educating people on what she’s been through. Maybe that’s the master plan in the end? I have no way of knowing. For now, I will just turn my eyes to the light in the darkest times and pray that Jesus will help me find my way again.
At this time, I would just like to take a moment to say Thank You to those of you who have read my blog, followed Emmy’s story, as well as my own story about finally Finding Christ, e-mailed me, prayed for us, or supported us in any small way at all. Sharing these personal stories isn’t always easy and It means the world to me when strangers I don’t know and friends alike both take the time to reach out to me, ask questions, or simply tell me that they continue to pray for my family.