Sometimes it only takes an instant for you to lose your breath and get off course. Sometimes those instances are grand and beautiful. And sometimes they are just pure heartbreak.
While driving in the car today we were singing Riley's favorite song "If you're happy and you know it." The girl loves to clap away, stomp those feet and shout appropriately. In the midst of her joy, in my rear view mirror, I saw a flash of frustration spread across her face. In that instant my heart broke into a million tiny pieces.
She was trying to shout "horray!" Just like the rest of us. Because she can sometimes give a valiant "aaaahh!" at this part of her favorite tune. Her right hand was up, her mouth open for the sound, and her eyes engaged. But nothing came out. It's an extremely common thing for my non verbal little girl. But this time it took her away from the joy of her favorite song and her frustration was evident all over her face.
That look of hers spread through my body and rested itself in my heart with its weight dragging it down to the pit of my stomach, where it has sat all day. It's just too dang hard to watch your baby struggle! And frankly I don't want to do it! There are so many incredible things about being a Special Needs mom! But today plain old regular, the old fashioned boring, and just downright typical mom sounds fantastic!
Now I am not naive enough to really think all the typical moms don't have to watch their kids struggle. I have my Keags who is generally typical, short of an extra scoop of sassyness and cuteness. And I don't want to have to watch her struggle either! But there was just something about my Riley's face today that is usually plastered with the most incredible smile, that just makes me want to stomp my feet, throw up my arms and scream "no more!!" like a toddler. That's right, I feel like having a full on tantrum that my baby has to face WAY to many challenges in her sweet little life!
My usual self would process that instant of heartbreak by somehow looking for the positive. I would usually mentally think of her great strides this week or define the moment as a metaphor to something bigger, somehow. I would replace my mulling over that look with prayers for my sweet girl. But today I have a pit in my stomach that I just can not swallow away. And to be honest, if I truly let myself go, I'm dangerously close to a full on hissy fit!
I don't want to do this! I don't want my baby to not be able to sing her favorite song! I don't want to worry about her getting so heavy that we aren't going to be able to carry her around anymore and what will we do! I don't want to constantly monitor how her medicine changes are effecting her! I don't want to worry about her blood pressure today and if she is outputting enough urine! I don't want her to sit on the sidelines at VBS and watch the other kids run around! I don't want to take her to way more therapy appointments then play dates this summer! I don't want her to have so many doctors visits next month! I don't want to have to continually try to guess what she wants because she just can't tell me! I don't want her to be frustrated that her body doesn't work like her sisters! I don't want so much more! I DON'T WANT HER TO HAVE TO STRUGGLE!!!
So there it is. My ugly little rant with no eternal perspective and no positive spin. Today it's just heartbreak. Amidst an otherwise great day and night I'm just going to let that heartbreak marinate. I'm hoping tonight that my prayers and my dreams will work hard enough on it to transform into something much different by the morning.
The irony of it all is Riley herself just quickly moved on from her instant with none of the pain and frustration that I now pour out into this blog post. She enjoyed her dinner and relished in the laughter of playing with her cousins and sister tonight as if no care in the world! Her kiss goodnight and beaming smile should have been enough to extinguish my little tantrum. So hopefully by the dawn I will have learned from her courageous example!
Goodnight my sweet girl! We will sing "If your happy and you know it" again tomorrow. And I'll promise no tantrums this time! Because tantrums aren't cute when your 4, let alone 34! Yikes!
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I feel your pain. It was all too real to me as I read your post. Just last night I had a similar experience with Shelby. I don't have an answer for you. I think that the occasional hissy fit is probably just the right thing. I believe that Heavenly Father is actually pleased a little when we do this. Like he might say, "that's it little one, get it out, let it all out so I can fill it with something better."
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Kevin
Oh. My. Gosh. I so validate your feelings, and tell you that you are entitled to every last one of them...fear, joy, anger, love, patience, impatience, faith, doubt....every last one. Her struggle is YOUR struggle, and probably emotionally much more of a struggle for you than it even is for her. VENT, Em, VENT. Nothing harder than watching our little ones struggle...and the magnitude with which you deal with....I can't even imagine. But I have a theory. Your joy, whether here or in the hereafter, or probably both, will be that much BIGGER, because of your never-ending, incredibly righteous struggle here. A little vent here and there, is not going to change that. Love you so much.
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