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.