Since this beautiful girl was a baby, my favorite thing to whisper in her ear each night has been, "you are amazing." I've done this on our best and worst ones. Though often, I haven't had the chance to wait til nightfall if I reflect...
I can see us sitting on the stairs - our space to process life - with her rigid and almost doll-like in my arms. "You are amazing." I would whisper. And I would wait until her sweet body softened.
I can see us getting out of the car for swim lessons; fear lining her tiny two-year-old face. "You are amazing." I spoke, as I nuzzled into her neck creases.
I can see us returning home from a wonderful afternoon - meltdown free! Only to have something upset her. To hear her cry and cry. When the calamity ends, I find myself again near her ear. "Sweet girl, you are amazing."
Parenting this precious child has been beautiful. It's also been traumatic - often - if I'm honest. Even in the midst of imparting the most kind and generous words humanly possible unto her in the hardest circumstances, I'm being pulled apart. Just because I speak life into her doesn't mean it is always well with my soul. Especially in harder seasons. Lately, I am forcing well-with-my-soul, while singing "Holy Spirit you are welcome here" in my head, because I just can't feel God's presence in the midst of whichever experience we're in. Most of these experiences involve her screaming and crying; and now she's telling me I'm an awful mother.
Note: somehow these words hurt way less than watching my child writhe in pain from something I cannot possibly see. SPD. OCD. And who knows what else. We're working on it.
I haven't lost faith here though; I've seen too much. But this is hard. Thus, I've been calling this season The War Zone. It is hard to pour love in and wonder... where did it go? Even worse than that is to wonder, where did my child go? And there are moments, hours, and days I connect with both.
Why do I share this? If you look at this smiling face you would never guess her inner turmoil. Yet, she's full of it. Imagine the plethora of people - children and adults - in the exact same state who smile too. People who are great pain, and inflicting great pain (not that they want to - it's just a part of the ride).
I share this because you never, ever know what someone else is going through. But today, thousands know what I'm going through. I share because in hardness we can unite. My reality some days is spending countless hours using words of affirmation and praise to lift her up - among other tools and tactics (she has sensory integration challenges so there is extra valuable work involved in bringing out the best in our Bliss). Daytime. Nighttime. In the shower. On the way to school. But when the wildness hits, those words aren't being spoken back. In fact, most days I'm on some sort of roller coaster ride of being covered with kisses one moment, and being told that she's afraid she'll kill me the next. Though today she offered to kill pumpkins instead...
I guess that's a win? But she's five. (Cue my heart breaking and also being strengthened supernaturally at the exact same time.)
The sheer unpredictability of this child is exhausting and sometimes petrifying. And this week, I've decided to label where we're at as The War Zone to process this the best I can. Grow through what you're going through - right?
I'm calling it The War Zone because of studies like this one - that resonate so much with what I've experienced twice now. First with a medically-challenged child. And now with a special needs one. Special needs parents truly exhibit the same post-traumatic stress reactions as veterans. We are living at war. Now, I won't compare our struggles. I know vets. I love and appreciate my friends and their spouses who have served, deeply. I cannot imagine their experiences. And I don't want to. Because for several months I was plagued with my own flashbacks of having to do the Heimlich maneuver one day, and then struggling with my then-four-year-old breaking down a door to get to me in the middle of her anxiety attack the next. She has no recollection of the latter...
All of this to say, let's not focus on the trauma but the healing. That's how I'm okay. I'm not great. But I'm okay. Friend, we can live in The War Zone and find peace as special parents. I'm not sure if that's possible in real war... I just know my path.
And it's peace. It's speaking life. You see, God's gifted me with a voice that I must raise. A voice that knows limitless love - and must pour that love back out come what may. Conflict is rampant here, and it sneaks up on you when you least expect it. Yet, my response must come from a space and place where I know this isn't the end. Our life together isn't over. I can't act like it is. I can't tear down the bridges I've built to get to her just because I hurt from her hurts. I can't shut her out. I also can't pretend it's all fine. Which is why we're getting help.
Right now, we're in the midst of getting this all figured out. Right now, I'm her best friend, her therapist, and her enemy (because sometimes I can't go along with the plans she's created... and forgotten to tell me about). And right now, I continue to speak life into her.
I'm also speaking life into me too.
If you're here with me - reading this from your most challenging life space - I want to speak life into you too, today. So here goes it - I am working on doing what I need to thrive here. And I so deeply want you to do the same. It doesn't have to be just us or just them that will make it out alive - collectively, we can all make it out into the sunshine.
There is a purpose for our time in The War Zone.
And like in real war, I believe it is to be peace.
What does that look like to you?
To me it means a daily release from unnecessary lies that break hearts and homes. Lies like we are not enough. Lies like there will never be peace. Like there isn't any joy...
I have plenty of joy.
You can too.
Friend, our potential - even when we can't fully see it; even when we're in The War Zone - is limitless. Believe it. Receive it.
I hope you'll stay tuned in as I dig into our journey more. I adore sharing this all with you. You help me continue to speak life, no matter what real life looks like.
Sending you so much love.
Hey friend, you can click here if you'd like me in your inbox each week. I hope we'll do life together. P.S. I love sharing helpful resources! I may also make a small cut that keeps me fully caffeinated and my brain research-packed (because we can't serve from an empty well, and I really love collecting all the knowledge, understanding, and wisdom I can for both of us.) Always, I'll do my best to keep you on the right path, but I'm no doctor even though I play one at home - often - and mostly for myself. Life with CFS sure keeps things interesting! Life with you + CFS keeps things full of JOY, too.