The degree of excellence of something.
It’s a simple word. Not even a fancy one. Regardless, it’s the word I am focusing on in my life in 2020. It’s the word I want to embody the year we’re about to live. I want to look back a year from now, and I want to feel as if I’ve made that happen.
I’m going to be honest with you. I walked into 2019 excited for the new year. I’m always excited because we have always been so fortunate to have one amazing year after another. That’s certainly not to say that we haven’t had bad days or that we haven’t been through experiences that have brought us to our knees in tears begging God to change us. We have. We’ve done it a few times – namely in 2010 when we suffered miscarriage after miscarriage trying to have our second baby.
That year brought us to our knees more times than I can count – and we’ve been so fortunate that the rest of our years have been so beautiful (sprinkled with moments that weren’t pleasant, but very, very good as a whole). We’ve been so fortunate, and that is not lost on us.
2019 was a strange year. It was a year I cannot even put into words. It’s a year that is filled with so many amazing memories – I mean, we honestly had the most phenomenal year. But it’s also a year that humbled me. It’s a year that brought me so much clarity. It’s a year that hurt me more than any other year of my life.
We were only 7 weeks into the new year when our sweet son, only 4-years-old at the time, suffered a Grand Mal seizure. To this day, after four days in the hospital and every single test you can imagine, we have no answers. It was not febrile. It was not the result of head trauma. It wasn’t anything explainable, which is why it’s called an unprovoked Grand Mal seizure.
It was the worst five minutes of my life, followed by the worst half hour of my life when he stopped seizing and was completely unresponsive, followed by the worst four days of my life in the hospital watching his little body go through test after test, followed by the worst year of my life waking up in the middle of the night in a panicked sweat, tears streaming down my face, and fear in my heart as I raced across the house to his bedroom to make sure he was still breathing. Night after night after night.
I cannot even put into words the fear and terror in my heart every single time my phone rings while he’s at school and I see the name of the school scrolling across my phone. I just know that they’re calling to tell me he’s seizing again. I’m wrong – Thank God – every single time, but that fear never subsides. Every single time I hear a thud anywhere in the house or outside, my heart stops in fear as I race to the sound to make sure he didn’t fall and hit his head – because the chance of him suffering another seizure is increased exponentially after suffering from one.
It never gets easier.
I know we are fortunate that this wasn’t worse. I know we are so blessed that every single one of his tests came back negative and void of any complications or health problems or concerns. I know this. I also know that no answers suck because there’s no way to prevent or avoid what you don’t recognize or know to prevent or avoid.
I’ll never forget the moment, about a month after Carter was released from the hospital, when discussing his seizure with a woman when she commented, “I don’t know why you’re so panicked about it. It happens all the time to people, and it’s not that big a deal,” in the most callous, most disgusting display of ignorance imaginable.
It might not seem like the biggest deal in the world when a child is fine, but anyone who can say that it’s not a big deal and that it happens all the time and it’s just a thing has never stared at their child’s seizing body on the ground, foam and vomit seeping from his mouth while his body shakes uncontrollably. They’ve never seen their child go instantly still while turning bluer by the moment as his little body is struggling to take in air. They’ve never looked down at their lifeless child and thought to themselves, “Oh my God. This is the last time I will ever hold my baby,” because there was no breath and no recognizable pulse and you thought your baby was gone.
To those who don’t think that this is a big deal – keep feeling that. Keep feeling that and keep feeling the bliss that comes from having never been in a situation where your baby’s life was in question. You are the lucky ones. You are the ones who don’t know the fear that grips your heart and the instantaneous nightmare that comes to mind when your child’s lifeless body is suddenly flashing before your eyes when you lie down and close your eyes at night.
You’ve never laid awake in bed for hours on end night after night after night crying yourself to sleep while your husband holds you and worries for you and shares your fears and hopes that you’ll eventually get some sleep. You’ll never know that it’s like to go through almost an entire year living in a total fog from exhaustion and sleep deprivation and worry. You are so lucky you don’t see your son’s lifeless body every single time you close your eyes. At home. In a plane. In a hotel room. When he’s cuddled up next to you on the couch on movie night. You won’t know that terror, and you are living the very best possible life because of that.
That one moment, those 5 minutes, that half hour, that four days, defined an entire year for me. In fact, it may define my entire life. I don’t know. There are aspects of it that do get a bit easier each day, but the fear never settles or becomes more manageable when you’re not with your little boy and the phone rings and it’s the grandparents who are with him, or the school where he goes, or your husband when you’re not home. That fear consumes me. It eats me alive from the inside out, and it’s affected my entire year.
I can’t just get over it. I can’t just accept it because it happens to people all the time. I’ve had so many beautiful men and women reach out to me to share their stories so similar to ours. My heart hurts so much for each of them, while simultaneously feeling so much appreciation and love and respect for those who do this all the time, for those who live this every single day of their lives. For those who have it so much worse than we did or do. Those people are the real heroes.
That one moment, though. That one moment shaped an entire year. It took so much of the joy from my life in so many small ways while also providing me with the opportunity to learn new ways to feel joy. For example, I feel just a little less joy and excitement and pleasure when I’m away from my kids. I know I need the time away to recharge, even for a few hours on date night, but I feel a little less joy in that time because of my fear. On the same note, I feel so much more joy in the simplest of things. The moments I hear the twins bursting through the master bedroom door and running to my husband’s side of the bed at some ungodly hour where the sun isn’t even up yet on a Saturday morning asking for pancakes and bacon in their ‘inside’ voices (their inside voices are the same as their outside voices, in case you were wondering).
The joy I feel in those moments is indescribable. They’re alive. They’re well. They’re so normal and so unaffected, and they’re so sweet. I find so much joy in those moments.
It’s amazing to me that a year filled with so many beautiful trips, so many moments that bring laughter and joy, and so many days spent with the people who fill our hearts to the top with so much love and enjoyment, and so many hilarious memories, and fun adventures, and amazing things can be a year I look back on and feel relief when I realize it’s almost over.
I know, realistically, that January 1 is nothing more than a brand-new day just like today was, and tomorrow will be, and the day before yesterday was; but it holds so much more for me this year. It holds so much promise for a better year. A year of healing and of quality.
Our lives in 2019 were filled with quality. We weren’t lacking in it at all, but it was also busting at the seams with quantity. Approximately 30 weekends in hotels. Almost 100 nights in beds that don’t belong to us. More activities and nights spent with half our family here and half there and so very few opportunities to spend just a simple evening together at home.
None of our travel is work related, at all. The only time it’s even remotely close to work related is the weekend my husband and I spend in Tampa every December for his work Christmas party – and it’s not like that’s mandatory. We just love it. I say that because I’m sure it’s easy to wish for more time at home and less time in hotels and less time in the airport when you’re not really given a choice in the matter because it’s work-related. But, ours is not work related, which alternately makes me feel fortunate and sad at the same time. There’s a certain irony in feeling annoyed and overwhelmed and irritated about packing and traveling and being away from home when all the trips are your choice.
I don’t want to feel like that in 2020. I don’t want so much of everything in the new year. I want more quality, less quantity, and more time to focus on what is good in life. I want more lazy mornings in my own home. I want more weekends spent making spontaneous plans. I want more, but I don’t want more for the sake of more. I want more quality.
I want 2020 to be a year that I can look back on one year from today and know that quality was abundant in our lives and that we derived so much pleasure from each moment rather than simply living the motions. I want this year to be the year that moments of fear and terror are fewer and further between. Our pediatric neurologist told us that if Carter can go a full year without a secondary seizure, his chances of having another one decrease significantly.
I want February 17, 2020 to be a day of celebration because he made it a year without a second seizure. I want it to be a day of happiness. I am putting a lot of pressure on that one day because I have this feeling in my mind that making it to that day without incident means that I will finally relax a bit, breathe a little bit easier, and maybe even sleep through the night without waking in a panicked sweat. I hope it’s the first night in a year that I don’t get up in the middle of the night and sneak across the house to put my hand on his chest and feel him breathing and still wake up the following morning with a happy, healthy, beautiful little boy to love.
2020 – I have big plans for you.
2019 – I let you own me, and I will never let that happen again.
I’m actually speechless here but I will try… the people who say that don’t worry etc… they don’t even know a bit about the anxiety, stress and the worries when it comes to having a sick child.
You have a beautiful family and I’m really sorry that you all had to go trough all this.
I don’t know what to tell you and I won’t try to say it will all be better. Only thing I can and will say is love is the answer❤️ we can’t control it all, but love can fix so much and from your post I can feel it. Lean on your spouse and cherish every small moment and don’t try to push away your feelings💕
How are you all doing right now? And merry Christmas and a happy new year to all of you🎉❤️
Thank you so much for your kind words! We definitely have a lot of love In our household, and it holds a lot together when things aren’t picture perfect. We are all doing really well right now! Enjoying the slowness of the post-holiday madness and really focusing on the good. I hope you are well, and that you are enjoying this season!
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