Tuesday, July 24, 2012

Your Hands


I love this song. I go to it over and over when the world is weighing heavily on me, and my heart feels like it's nothing but a thousand little pieces. The words of this song have been my comfort through some of my darkest storms, and I find myself clinging to it and it's promises again.

A few months ago, I wrote this post which talks about my mother's heart condition and the trip we took in April to Johns Hopkins Hospital in Baltimore, MD. It was an emotional trip for me, and while I found it to be very educational regarding my mom's condition and ARVD, it took a lot out of me physically and emotionally. But, despite everything, we left with hope. Hope that after several tests and meetings with the doctor and his team that my mom did NOT have ARVD. It was frustrating, because we still weren't sure what was wrong with her, but we were relieved to know that if the genetics test came back negative, then ARVD was one more thing we could check off our list.

Well, we were wrong. Last night, along with my others sisters, my mom told us that her genetics test came back positive. Positive. The word looks so foreign to me as I type it, but it's the truth-a cold reality that has shaken my world to the core, yet again.

What does this mean? Well, this means that my sisters and I all have to be tested for the disease. Sadly, my sister, Randi, has already began to show similar signs and symptoms that my mother had in her 20's. We believe she is the carrier, but we won't know for certain until we do the genetics testing followed by another trip to Johns Hopkins in October. What does that mean for Randi? It means that if she or any of us test as positive carriers for the gene, then we will have to have our children tested, and we will begin a lifelong process of heart monitoring and medication.

 Just like with any genetic disorder, some people carry the gene their whole lives and never show any symptoms. But, sometimes the disease rears it's head in many ugly forms, but the most common form is severe heart arrhythmia. The only treatment is a pacemaker/defibrillator, which is not a cure, but can definitely prolong the individuals life as it has for my mom the past 20 years. If any of us test positive, a pacemaker/defibrillator may be in our future, as well as a lifetime of fear plagued by the possibility of sudden cardiac arrest. It's a big pill to swallow, one that we certainly won't be taking without a little bit of kicking and screaming. But, in the end, we will accept this a move forward. God gave us this, because He knew, that even though we don't act like it sometimes, we are strong enough to handle it, because we have Him and each other to see us through.

My mother made the comment last night, "If I could change it, I would. If I would of know 27 years ago that I had a rare genetic heart disorder, would that have changed the fact that I had four daughters? Maybe. I doubt it, but maybe." As devastating and scary as this news is, there are only a few things in my life that I would never change and one of them is my sisters. I cannot imagine this life without them. As crazy and mad as we make each other 92% of the time, they are my best friends. I cannot imagine this journey without them there to hold my hand. They are my built-in support system. The ones I couldn't get rid of even if I tried. They are hope. They are promise. They are the beauty inside of this mess. And together, we will get through this, and come out even stronger.

I am thankful everyday that God gave me three sisters. He knew we would need each other. That we would need someone to lean on, to listen to our hopes and fears, to wipe away our tears, to make us laugh when no one else can, and to love us in spite of our crazy selves. We understand each other like no one else ever will, and most of the time we're okay with that. We always accept each other despite our wide array of colorful flaws, and with them is the only place I rarely feel judgement. We tell each other how it is. We are always, always honest with one another, even when we don't want to be. And together we have braved some pretty dark and scary storms-this one will not be any different.

So, if you think of us today, pray for peace. Pray for my mom's heart to understand that this is not her fault, and pray that she will have the strength to guide us through this process. Pray for my sister, Randi. This is a blindingly scary time for all of us, but especially her. Please pray that God will quiet her heart, and fill her with His peace that passes all understanding. Pray for wisdom. That God will show us how to love and help each other through this time. Pray that He will give us the words to say, and that our doubts and fears will not get the best of us. And last, but not least, pray for a miracle. Pray that next week when we all go to take our genetics tests that those tests will come back negative. Pray that God will cause this disease to go dead in the water and stop with my mom.

We are so thankful for the support system that we have besides each other. God has blessed us with a huge extended family, and some of the most amazing friends a couple girls could ask for. We know we are not alone in this, and that is a beautiful thing. So, for now, we move forward. We dig deep, we find our big girl panties and that tough as nails attitude our momma gave us, and we trust that even though we may never understand it, the Lord has a plan for our lives-a beautiful one.

Tuesday, July 3, 2012

I Found My Heart In Dewey

They all said I was crazy-they were right. They all said that running from my problems wouldn't fix anything-they were right. They all said a week with my crazy sister wasn't the answer-they were wrong. Because despite the fact that yes, I am certifiably crazy and yes, all my problems were still here Monday evening when my plane touched down in St. Louis: a week with my sister WAS just what I needed.

I flew into Philadelphia, PA last Monday night where I was met with open arms by my little sister, Kasie, who took me to Dewey Beach, DE where I began the week that would change everything.

I went to Dewey with a broken heart, a lifeless soul, and an outlook that was as bleak as they come. I didn't know what I was looking for or even if I'd find it. But, I knew two things: one, I couldn't spend another day laying in my bed drowning in my sorrow and self-pity and two, I knew I needed silence. Not peace and quiet, per say, but an escape from "the noise" which had become my life. And so I did. I bought a ticket on Wednesday and found myself surrounded by faces I didn't know in a place I never thought I'd be five days later.

Dewey Beach is a crazy place. It's like my hometown without the hometown "everybody's-in-everybody's-business" feel. The people who work and live there come from all walks of life, but once a year they convene at Dewey Beach to work, play, and love life. Other than their work schedules, the people of Dewey Beach keep NO schedule. Everything moves at a much slower pace. They eat, sleep, and play whenever they feel like it. There is no routine. Yes, Dewey Beach moves at the pace of life, and for a girl who has spent most of her life marching to beat of everyone else's drum, Dewey Beach is just what I needed.

My favorite part of my trip was the afternoons I spent alone on the beach across from my sister, Kasie's condo. I spent several afternoons laying on the beach while Kasie worked. I would write, read my book (I finished a whole book while I was there! Booyah!), people watching and thinking. Now let's get something straight: me + thinking = dangerous. I'm the queen of jumping to conclusions and over analyzing every little detail. So, I try to keep my deep thinking sessions to a minimum. But, there is just something about the sand and salt water that puts everything into a new perspective. And for the first time in a long time, I let my mind wander. I considered all the possibilities and all the options. I weighed every choice and was able to come to a conclusion. For the first time in months, I recognized myself and I knew exactly what I wanted. During those afternoons on the beach, I could feel my heart mending and my pride beginning to soothe. It was like the ocean was breathing new life into my soul, and as I cast my doubts and fears out into the receding waves I knew: I was going to be okay.

In addition to loving my afternoons alone, I met some amazing people while I was there. EVERYONE was so open and accepting. I felt no judgement there, and for the first time in a long time, no one let me dwell on my problems. No one asked nosey questions and no one probed me for answers I didn't have. For a whole week, I could just BE. I was simply Ashley: Kasie's sister from the far off land of Missouri. No one needed to know my story. No one cared about my past. They just seemed to be happy that I was there-there to make Kasie smile and to show them that yes, other people like her do exist. For the first time in months, I felt acceptance in spite of my flaws. And through those people I saw the type of person I wanted to be: A person who is open, accepting, ready to forgive, and who never judges someone based on their past. In truth we've all come a long way. We're all shaping ourselves into the people we truly want to be. And the truth is that the person we are today, isn't the person we are going to be ten years from now, so why not just enjoy life, take the punches as they come, and know that every person you meet has their own story of heart ache and defeat, and how they overcame it.

I walked away from Dewey a different girl. As I looked out into the ocean my last afternoon there, I realized that I HAD found what I was looking for-a new outlook on life. I learned how to say what I want out of life, and go for it. I learned that I am only meant to be me in this life-no one else. I learned that I have a right to be happy. I have a right to chase my dreams, and if in ten years I am not on the road towards fulfilling those dreams, the only person to blame is myself. I learned that love can be lost, but with a few tears, honesty, and whole lot of work, it can reach a place where you can find it again. And I was reminded that I am first and foremost, Emma's mother. The person she is going to be is my responsibility, and I need to set the example.

It's true: you only get one chance at this life, and if you don't like the person in the mirror, it's up to you to change it-no one else. I feel that I now know where to draw the lines and set boundaries. I know what needs work, and what needs to be let go. I know what I need right now to be happy, and I'm no longer afraid to ask for it. But, in the same sense, I am more aware of the people in my life who are the most important, and how to make them happy without sacrificing too much of the girl inside. I realize now that I can't be everything to everyone-it's too exhausting. I need to learn how to say no. And I'm realizing that my problems don't have to be everyone else's. In truth, my life will be calmer and less hectic without everyone's advice and opinions. I now know, the only way to eliminate all the voices is by not inviting their opinions in the first place. This may seem harsh, but in my world where everyone knows everything about everyone all the time, all I can say is: it's time.

I am so happy I went to Dewey-that I finally did something for myself just because I wanted too. I want to thank all the people (you know who you are) who helped me get there, and who may not of understood why I needed some time away, but accepted it. It's true, that in times of trouble, only your truest friends will shine and I have some of the brightest stars in the universe on my side.

I also want to thank Kasie, and her boyfriend, Asa for opening there arms to me. They truly showed me an amazing time while I was there, and I am beyond grateful. I only hope that sometime, somewhere I can return the favor. I love you both.

So, in case you were wondering I'm back...and it feels so good to fill this white space up with little black letters. Little black letters which become words. Words which become my heart on paper for the world to see. Hello again.

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I do not receive monetary compensation from any of the products, companies, or organizations I promote through my blog, unless otherwise specified during a giveaway or promotion. I am just your average mom trying to share products that I enjoy with other moms, as well as organizations and charities I believe in.