I haven't written in a long time - weeks, in fact. My husband keeps telling me I would feel better if I would write about what's been going on. My kids even tell me that they know that writing would help me. I know that I've been putting off writing because committing it to paper ( or computer) makes it real, and I'd rather all of this not be real. I think it's time, though.
Over the last month, we have found out that our oldest daughter has a rare heart condition known as Long QT syndrome. It is uncurable, but completely treatable, which is the great news. The terrifying news is that Long QT, or LQTS, can cause fatal arrythmia, leading to cardiac arrest. Going back again to the good news- it is treatable. Kiley has started beta blockers, which will hopefully prevent any symptoms.
We'll find out at the end of the week if two of our other children, Laurel and Liam, also have this condition.
I keep having this feeling that I have woken up in an alternate universe where everything is scary. I went to bed one night, my biggest worry was whether I was pushing Kiley hard enough in homeschool, how to get Spencer to wash his hands, how to help my defiant 13 year old not be so defiant, and making sure that Liam knew his colors. The next day, my sweet girl's 15th birthday, we were told that she may have a condition that could lead to cardiac arrest, then sent home and told to avoid caffeine, exercise, and a few thousand medications that could make the condition worse.
My three year old had to wear a heart monitor for 24 hours - he gets to take it off in a few hours, in fact. He has done phenomenally well with it. I think he likes it. He says he's a super hero with all the leads stuck to him, and the monitor clipped on his belt. Laurel goes for a stress test on Friday. There's been echocardiagrams, ekg parties, and more trips to the cardiologist than I would have though possible. We'll be doing genetic testing this week to find out what type of LQTS this is. We have to get a defibrillator, an AED, to keep at home, and travel with us. This is all happening. For real.
I know that it could all be so much worse. This is a condition that they can live healthy, active lives with. This is a condition that, when detected, can be controlled. Beta blockers work for many people, and in some cases an ICD, an implanted defibrillator, is the best option. We are blessed that the kids are asymptomatic. Many people find out they or their children have LQTS when they have a cardiac arrest. We are the fortunate ones because we found out before tragedy struck.
So, why don't I feel grateful? Why don't I feel relieved? I guess I'm getting there, to the place where I am thankful to know, thankful for treatment options. Really, though, I keep waiting for the doctor to call and say that there's been a terrible mistake. I'm thankful for friends who have gotten us through with words of encouragement, with reminders that God is with us, but it also feels very lonely in this place we're at. That's no one's fault, I think it's just part of the process. It's learning to deal with the new normal, as cliche as that is.
I have to say that this process has taught me compassion in a new way. I feel so much compassion for people who have anxiety, or who are waiting on a diagnosis, who have lost or are losing someone, or who just are feeling uncertain about life. Really, I have renewed compassion for God's people. We're all so broken, in one way or another, and we're all trying to figure out how to get through this life. We all have heavy things we're facing, and we all feel overwhelmed from time to time.
This is a new world that I have woken up to, but my fear is dissipating. My weepiness is drying up, a little anyway. My backbone is a little straighter, my shoulders less slouched. I still feel heavy, weighed down not just by our stuff, but by the stuff of the world. During those times when it all threatens to overwhelm me, I remind myself that God, who created the universe, loves my children even more than Lee and I do. In his compassion and love for them, he chose us as their parents knowing that we could handle this. That gives me courage to keep moving forward, hour by hour, day by day, into this new world.
So be strong and courageous! Do not be afraid and do not panic before them. For the L ord your God will personally go ahead of you. He will neither fail you nor abandon you."