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The Only One: A Memoir of Hope

I am so excited to invite you all to join me on my next adventure! From the time I was a young girl I have enjoyed writing, and while as of right now my career does not involve that work, this quarantine had allowed me to take steps in that direction.
With great anticipation – and a little anxiety – I am announcing the progress in my goal of becoming an author! If all goes according to plan, my memoir will be available for purchase in late summer 2020. I want to thank the large number of you who have had a pivotal role in getting me this far, and also in encouraging me to take this leap of faith. I wouldn’t be here without you.
If you would like to stay up to date, like my author page on Facebook or Instagram! There I will be releasing all the details, book excerpts, and behind-the-scenes pictures of this crazy road to becoming an author. Stay tuned!

Which Kind of Perfect

Lately it seems like wherever I turn I am hearing, reading, or watching something regarding abortion and the sanctity of life. I know these topics are in the media nearly constantly, but I have had something on my heart for a while that has made me more aware of the overall discussion. What you are about to read I’m sure will not change your mind on life or the sanctity of it, no matter which side of the fence you are on, but I’m hoping it may clarify or encourage some of you.

Because I have a genetic abnormality I have had a few meetings with genetic counselors. (I’m going to stop here to explain that I chose not to call it a defect. I hear that enough from the medical community and even though my body functions differently than most, I don’t want to go through life focusing on what is wrong with me. I don’t want to feed my mind with thoughts of imperfection, or that I was created inferior to everybody else. We all fight those thoughts enough and I chose to simply refer to this as an abnormality.) There is a 50/50 chance that I will pass on this abnormality to any children I eventually have, and during our appointment the geneticist always tells me, “We can test the fetus and if it comes back positive we would terminate the pregnancy…[big huge pause]…if you wish.” I remember the first time I heard that I was slightly taken aback but told myself, “They just have to say that. Ignore it and move on.” The second time I thought, “Why do you keep bringing this up? This is dumb.” The third time I was over it so I said, “No, I’m not going to do that. No matter what my child is diagnosed with I will not have an abortion.”

Because every time the doctors said that it felt like they were saying it about me. “We will kill your baby cause they’re not perfect, so we would say the same thing about you.” That hurt me immensely and I later got quite angry about it. Don’t tell me you want to kill my children for having the same thing I do. That hurts more than I can explain. I totally understand where the medical professionals are coming from, as I struggled immensely with my genetic abnormality. For a long time I couldn’t see my genetic abnormality as being good. And honestly whether or not they view it as good is up to them. I just wish they wouldn’t be so pushy about killing an innocent person just because they’re like me.

We as humans love to be in control, right? We want to be in charge and we want things to go our way and everything better be done right. We hate giving up control. But see, in this instance it is such a comfort that I’m not in control. Could you imagine the pressure if I had to decide whether or not my child should be born with a genetic abnormality? Me with my finite, human thinking would of course prefer a baby with no physical stains of sin. But how comforting it is that I know Someone infinite and omniscient and all-wise and full of love and holiness Who says, “Don’t worry about it. I will create your little baby just how I want them. Just as I created you perfectly according to My will, your child will be perfect too.” And it doesn’t hurt any less when the doctors say, “Hey, we can kill your baby if they’re not perfect,” but my heart is comforted in the knowledge that the only Perfect One is choosing which kind of perfect He will create my child. And if I ever have children, if the tests come back positive for MEN1, I’m so afraid of being disappointed. Because I know more than anyone the difficulties that child will face. And I wouldn’t wish it on my worst enemy.

But I am learning that it will be good and that child will be perfect.

I urge you all, no matter where you stand on this issue, to be very careful what you say to somebody battling a genetic or chromosomal abnormality. Most people would never guess how personal or painful this subject is for me. We fight enough negative thoughts about ourselves that we don’t need other people feeding them to us. We need people to remind us that we are perfect just the way we are.

And every child, no matter what tests show, is perfect as well.

Always, Only

It’s been a really long time since I’ve written a blog post, and for that I apologize. I’ve procrastinated on this for months, partly because the writers’ block has been real. I don’t consider my self a real “writer” at all, but my thoughts aren’t forming into words very well.

I’ve also made an observation that is hard to admit. I noticed that every time I put up a post, I got irritable. I have been baring my soul to the whole world, and it made me uncomfortable. I became snarky with those I love the most and distanced myself from a lot of people. This attitude change is entirely my fault, and for a few months I considered deleting my blog. Then I remembered what my blog was created for.

Bringing hope in the midst of the hopeless.

And if we’re honest, there’s a lot to be hopeless about. I don’t need to name anything because everybody’s “hopeless” is different. And the past few months have brought a lot of “hopeless” in my life. But there’s one thing I’ve learned.

God is always, only good.

Always, only.

The very nature of God means that He can be nothing except good. And when we are looking back at the past or looking in other people’s lives it’s so easy to see that. But when we are in the midst of hopelessness it’s so easy to lose sight of that or doubt it. Even forget it.

But I think that we forget the goodness of God because we didn’t focus on two words.

Always, only.

We can say “God is good” in almost every situation, and we do. But we leave out the “always, only”. And this is such a difficult, painful lesson to learn. Because we don’t like to think about “always, only”. “Always, only” means situations that are painful, uncomfortable, hurtful. But even then, God is always, only good.

This took a long time to learn, and honestly I’ve barely begun to understand it. And that’s okay. There has been a huge amount of help from friends along the way. In those moments when I was questioning truths I always knew and doubting lessons I had learned, people stepped up, took my hand, and gently and lovingly pointed me to what I needed to hear but didn’t want to think about. God is always, only good.

Even when the hopeless comes, and the “even if” becomes reality.

Always, only.

And that brings hope.

10 Reasons I’m Thankful for My Trials

Half an hour ago I was just sitting here browsing Pinterest, looking for cute bulletin board ideas, when I came across one that said “We’re thankful”. “What am I thankful for?” I thought to myself. Then before I even realized what I was thinking, I realized I was thankful for the past 10 years of my life. It’s been ten years since my health adventure began, and this is the first time I can truthfully say that I am thankful for it. Would I choose to do it all over again? No. But I can look back and see ways that I have grown mentally and spiritually that I wouldn’t have in other situations. Right now, in this moment, I am thankful for my past. Here’s why.

1. I was still a child when it happened.

Sometimes I’m tempted to be angry that I was so sick as a child, that I got my childhood taken away. But because I was a child, I still had childlike faith that it was going to be okay. Sure, I was different, and sure, my story ended up being very unique, but it was going to be okay. It’s easier to get 20 vials of blood taken, lay down for an hour-long MRI, and be wheeled into surgery when you’re 10. It’s just easier. I am thankful that I was young when it happened.

2. I am thankful that I learned to pray.

The first time I said a prayer that didn’t start with “Dear Jesus” or “Dear God” was in August of 2009 as I was being wheeled into an OR for a procedure called an IPSS. As I was laying there on the operating table, the mask on my mouth, drifting into unconsciousness, two words were spoken from my heart. “Please, God.” That was it. Please, God, give us answers. Please, God, don’t let me have complications. Please, God, let it be okay. I learned that sometimes the most sincere prayers can be just a few words. Do longer prayers have their place? Absolutely! But I am thankful that I understand that you don’t have to begin with a “Dear Jesus” and end with an “Amen” for the prayer to work.

3. I am thankful that I got to see the faith of others tested.

This was a hard one to put on my list. Am I thankful for the hurt on my mom’s face, the financial burden my appointments and surgeries added to my dad’s shoulders, and the strain put on my family? No! But am I thankful that I was able to see multiple people, under extreme stress, against insurmountable odds, showing me what it means to live by faith? Yes! I don’t have to wonder what it means to put your faith and trust in Jesus because I saw it many times in many people.

4. I am thankful that I learned it’s okay to be different.

I struggled for a long time with how I looked. I was shorter than most kids my age and heavier than most kids my age. My cheeks were always flushed. My hair was thick and coarse. I felt ugly. But then I learned that God made me how he wanted me. And that doesn’t just make me okay with how I look. It makes me confident in my body. If my God made me a certain way on purpose, who cares what others think? And now I don’t care if I’m short. I don’t care that my skin is dark. I really don’t care, the people who love me don’t care, and the people I love don’t care.

5. I am thankful that I learned what it means to reach the end of my rope. It has taken a lot to get to this point of thankfulness. I don’t want to reach the end of my rope. I don’t want to get to that point where I don’t know what to do and I have to put my complete trust in somebody else. When I was addicted to pain pills at the age of 12 I had reached the end of my rope. But what happens when you reach the end of your rope and let go? You fall into the arms of your Heavenly Father.

6. I am thankful that God gave me more than I could handle.

This kind of ties into the last one. But it’s different. When I’m holding onto my rope I’m trusting in myself. But sometimes God is giving you burdens, and you’re truly trying to live by faith, but the burdens become too much. Then you let them all fall because you just can’t handle it anymore, and you realize what God was trying to teach you. The whole point was that we can’t handle it. When I let go of myself and said, “Fine, God! I give up! It’s too much!” my circumstances didn’t change, my God didn’t change, but I did. That day I learned what it meant to give your burdens to the Lord. And I’m thankful for that.

7. I am thankful that showed me His love over and over again.

I could talk for weeks about this subject but at the same time I’m almost speechless. It’s like I could sing every song ever written about God’s love and still not cover half of it. I could write every definition of love and still not explain it. Even today when I just sit and remember that God loves I am overcome. He knows my past. He knew it even when I tried to deny it, hide from it, and run away from it. And yet, still He loves me. He loves me with an all-consuming, all-encompassing love.

8. I am thankful that I have a family that forgives.

One of the biggest reasons that I never shared my story was that I knew I would be letting not only myself, but everybody I loved, down. Nobody could ever imagine that I could have done what I did. I was embarrassed and horrified at myself still and how could my family and friends react any differently? But I had not one negative comment from anybody when I shared my story publicly for the first time. It still shocks me. I just can’t believe the grace and forgiveness extended to me when I could barely forgive myself. I am so thankful!

9. I am thankful that I have been able to share my story.

Sharing my story with even one person is something I never wanted to do. Never in my wildest dreams would I imagine sharing it with 150+ people over three months, then sharing it and having hundreds more people, even strangers, read my very deepest thoughts and struggles. But there has been immense healing in that short time, and I have come to know God’s grace and love even more through it.

10. I am thankful that I know what peace is.

To have gone through all that, physical and mental, and be able to approach God’s throne in prayer and have complete and utter peace is nothing short of a miracle. But then, isn’t all of my life? The good, the bad, the ugly, all forgiven by the all-loving God and my being able to experience complete peace. I’m so thankful!

Will you let me be sad?

I have learned many things on this journey called life. Through all of my health problems, both physical and mental, I have gained so much. Wisdom. Love. Peace. Thankfulness. Joy. And because I have gained so much, it is hard to allow myself to remember the things I lost along the way.

Why was I the one who had to go to the doctor? Why was I the one to miss the family get-together that will be remembered as the best one yet? Why was I the one stuck in the hospital for seventeen days? Why was I the one who got her heart ripped out then trampled on? Why was I the one who missed my childhood for this stupid thing called cancer? Why? Why? Why?

It is a common question among cancer patients: am I allowed to be sad? Will you let me? We know that it’s hard for you to see us sad. We know that it’s scary for you too. We know that being happy helps us fight better. Trust me, we know.

But will you let me be sad?

Sometimes I can look back with peace and remember that I have come out stronger.

Sometimes I look back with rage for all that I lost. I’m upset that nobody understands. I’m upset that I actually had to live through it. Cancer was, and is, my reality. It hurts.

Sometimes, I look back with a heavy heart. I lost a part of myself in the battle. I’m never going to be the same. I’m sad because I had four major surgeries before I was fifteen. I’m sad because I have had a surgeon operate on me twice. I’m sad because there were years of heartbreak. I’m sad because I will never know what I may have looked like. I’m sad because I changed. Cancer changed me.

I try to be thankful. After all, I did survive.

But in order for someone to use the word survive, there is an implied battle. Something that is survived. You don’t survive the best day of your life. You don’t survive good news. You survive death and destruction and heartbreak.

I survived.

Sometimes I have to take a day and wallow. I remember what I lost. I look over notes from my worst days. I read books that make me cry and movies that make me sob.

And I remember. I remember what I lost. I remember what was stripped away. I remember what was taken from me.

And I grieve.

Then I get up, wipe my tears, and thank the Lord that I survived. Do I have battle scars? Plenty. But I’m alive.

I was reminded recently that I was chosen, by God Himself, so be a part of His sovereign plans. And I am lucky just for that.

An I allowed to be sad? Yes.

Because without sadness, the joy is not as real.