So we've been having some.. 'issues' with Ella lately. I don't even know exactly how to describe her behavior. Other than frustrating, exhausting, annoying, tiresome, irritating, ridiculous..
Okay I guess it turns out I do know how to describe it better than I thought.
There's a lot of different little things she does that have been wearing on us. For example, she gets SO upset when someone else falls down or gets hurt (which happens with frequency with 4 rambunctious brothers..) she herself will make herself fall down or get hurt and run to us wanting affection. Except then she won't accept it. When we try to give her a hug she'll just turn the other way and scream "NO!!" then just be unconsolable and work herself into a tizzy. Or maybe a brother wants a toy she's playing with. She feels obligated to share it with them, gives them the toy, then starts screaming that she doesn't have the toy. When she gets it back though, she just screeches more and throws it, again yelling "NO NO NO!". She is terrible at making decisions. If I ask her, "Do you want juice or milk?" she might ask for juice. Then when I show up with the juice she screams "NO! Water!" so I dump out the juice and put water in the cup and again, "NOOOOO! Juice!" Or if we're swinging she'll say "All done." so I'll get her off the swing, then she'll start crying, "NO! More, more!" So I'll buckle her back up, then it's the sobbing and flailing and yelling "NOOOO All done!!!!" This goes on and on. With everything. And with everything she just becomes hysterical, unconsolable, unable to reason with even a little bit. She has this thing where she always wants her feet rubbed. She's always liked them rubbed (who doesn't?!?) and I think it's definitely a comfort thing for her. But there have been times where she would not go to bed at night and would just grab her feet screaming bloody murder while we sat by her bed and held them tight, doing our best to console her. She's also been having a lot of potty accidents lately. I feel like she's getting anxious about going and all my efforts to
bribe beg grovel at her feet reward her are only making it worse.
So here are the thoughts running through my brain during these times..
What is wrong with her feet? Does she have restless leg syndrome? I'll make a homemade sleep cream using essential oils to help soothe her. Or maybe she's magnesium deficient. I've heard that's what causes RLS. Let me order some magnesium lotion online and see if that helps. Or what if it's something else? Maybe it's that Raynaud's disease I've heard of some kids with CdLS having where your blood circulation is limited. That can cause numbness to the hands and feet. *makes mental note to mention this to doctor.* Or maybe that's not it at all either.. Is it some kind of neuropathy thing? What kind of doctor do I need to contact about that? Are her feet tinging? I have no idea. She's just screaming. Sometimes she does it after she's been in her car seat for awhile. Maybe her feet are falling asleep because she doesn't fit in her carseat right? She's not big enough to move to a booster, but what else is out there? Why is she freaking out so bad? Is she in pain? When was the last time she went to the bathroom? Could she have a bowel obstruction? Or what about malrotation? Should we rush to the ER and get an x-ray? Or maybe.. MAYBE it's a GI thing. Could she be silently refluxing? I bet she is. She's probably been refluxing for years and we just didn't know it. I knew I shouldn't have put off our last GI appointment. It's probably gotten so bad that she has esophagitis now, or maybe even Barrett's Esophagus. No wonder she's screaming. Or wait.. no, maybe it's a communication thing. Does she need to tell me something but can't find the words and it's frustrating to her? I really need to do better at practicing with her new communication device and Proloquo2Go app. I know I don't have enough choices on there for her to tell me what she wants. Except for her to be able to tell me what she wants I would have to program it in there, which means I would of course need to know what she wants in the first place...
A few weeks ago we were talking with some friends about this and they were commiserating with me and saying how actually a lot of these things sound exactly like their daughters.
Their very, quite typically developing daughters.
Is it possible.. that all these behaviors and tantrums and fit throwing and llama llama red pajama mad at mama so much nonsense too much drama are not at all due to the fact that she has special needs and developmental delays and Cornelia de Lange Sndrome, but purely attributed to the fact that she is... Just a Girl??
I have no idea.
But if it is.. hats off to you mamas of girls.
All my noisy, wrestling, loud, obnoxious, farting, stinky, sweaty, mud throwing, paint splattering, fighting, belching, filthy dirty, wild and crazy boys are by far so much easier to handle than this one.
Is it possible that sometimes I get caught up in the syndrome and making sure I don't miss some important detail of what could possibly happen that I fail to notice that she really is.. just a little girl? When she does things different from her brothers do I just think 'Oh.. it's because of CdLS?' But maybe it's not. I know absolutely zero about raising girls (except of course for that fact that I am one..) and this thought slightly brings me joy and slightly terrifies me.
Is it possible that I am just now realizing that I do, in fact, have a little girl?
A girl who adores looking at herself in the mirror. Who LOVES having her hair put up. Who at least 20 times a day comes to me and points to her hair saying "Up, up!" (Girlfriend should have been born in the 80's.. She would have rocked the big bangs era. I cannot get her pigtails high enough to appease her, even when they are quite literally on the very tip top of her head.) She will smile and giggle and turn her head, adoring her own reflection. (It doesn't have to be a mirror either.. Could be the window, a stainless steel bowl on the counter, the rims of wheels on cars we're walking by..) I have a little girl who loves to dance and spin in circles and giggle. A girl who adores her 'babies' and rocking and feeding them. A girl who loves to crawl up into our bed, pull the covers up to her chin, and snuggle in with us all cozy and warm. A girl who has her mama's chocoholic sweet tooth and shares my love of iced coffee. I can't wait to go on coffee dates with her. A girl who chomps her gum and holds my hand and melts my heart. A girl who for the very first time the other day wore the most adorable strappy sandals and let me put her hair in french braids. I died.
So is it possible that these 'behaviors' are due, at least in part, to her being a girl and all the drama and out of control emotions that sometimes goes along with it?
The jury's still out on this one.
For now what I do know is I have a little girl. A little girl who needs me to be the best mama I can be. Who needs me to be there for her to love and comfort and hug and hold, to be firm and strong, and to be her very best advocate. A little girl who needs my patience and guidance even on days I feel like I have nothing left to give. Because she's not just a girl..
She's my little girl.