About 4 years ago, Eric and I built a massive 400 square foot deck off the back of our house. It spans the entire thing and is even big enough that it wraps around a tree. It's huge. We love it. We have so many family dinners around the table out there that our dining room table has collected a fine sheen of dust. Eric and I sit, so often, on the love seat, that the middle is starting to sag. Our deck makes our lives like a vacation. Constantly watching the kids play on it, enjoying the outdoors, being in the sunshine. It has also been the venue for many late-night conversations that Eric and I have had regarding Catherine. Last night was one of the most heart-wrenching.
Before last night, we had toed a line. Before last night, we had known there was something going on with Catherine and had acknowledged that it was going to take a lot of work to catch her up. Before last night, we were blissfully unaware of what we were truly dealing with.
Until Eric said, "Drew is quickly catching up to Catherine."
You probably don't think that it's that important of a phrase, but when he uttered it, neither of us said anything. He got up and paced the deck, and I sat and cried. He sat back down about 5 minutes later, and said, "Wow, that didn't hit me just how serious this was until I said that out loud."
And that's it. There are the things we have never said out loud. But last night, we said them.
Drew is already surpassing Catherine in several areas, but they are too subtle to notice. One in particular is articulation. Again, very subtle, but the fact that Drew can pronounce the word "Car" like "car" and Catherine says "cack" makes you wonder.
The fact that Drew understands to throw something away, and sometimes, Catherine doesn't understand that. She won't throw the piece of garbage in the trash, she will go put it on the stairs. But that's where the dirty laundry goes (like when Drew eats oranges and we have to take his shirt off directly after eating - it goes on the stairs until we go upstairs for the night and drop it in the laundry).
The fact that Drew understands the word diaper and when we ask him to get one, he does. Catherine never gets a diaper, she gets the wipes. And then she lays down. It's like she doesn't understand the word diaper.
Drew has almost as many words as Catherine, which seems remarkable as he is only 17 months old, but at the same time, he also has two older siblings that he watches day in and day out. I am sure he is at least a little ahead of the game. Not only that, but Drew can articulate them so clearly. We know exactly what Drew is saying. When Catherine asks if she is going on a walk in the stroller, she ays, "Me cack tee trow-wuh?" Yes, you are going on a walk in the stroller. It amazes me how much we can actually understand. When we ask her to repeat a word, she tries to repeat it, which is so much better than it was, but at the same time, it's sometimes nowhere near what we are actually saying. I asked her to say something today and what came out of her mouth didn't even have the same letters. It was bizarre.
So as Eric and I discovered what that phrase truly meant to us last night on the deck, we started writing things down. And we wrote things down for an hour and a half. For the psychiatrist who will hopefully help us through this at our first appointment next week. For our naturopath, who will hopefully help us through this at our first appointment, also next week. For our PANDAS doctor, who doesn't want to see us for another 3 months. For ourselves, so we can remember everything that we need to bring up at every appointment to try and enable a normal life for Catherine.
So here they are:
1) We feel like the processing is not there. She knows that the granola bars are in the cupboard with all the other snacks. So to let me know that she wants a snack, she says "bar?" When I take her to the cupboard, she doesn't want a bar, she wants another snack that's in there. However, she should be able to say "snack." She has the "ck" sound and she has the "sh" sound - so why can't she put it togehter?
2) Could the hitting actually be a tic? Sounds weird, but we talked extensively about how when she hits, it's like she disappears. Like the light goes out of her eyes. And that's what scares us the most. That's not normal. And as much as PANDAS is not normal, that is even more abnormal. It's like she leaves. And is this brought on by agitation? Very similar to split personality disorder in that whens he becomes overwhelmed, she checks out and someone else takes her place? Could that be why she doesn't seem to understand time-out?
3) Hugging: she will ask us for a hug at bedtime, but when either of us bends down and wraps our arms around her, her natural inclination is not to reciprocate. Instead, she just lays there. Which lead to our next discussion:
4) Mimicry. She mimics a lot. Most of her actions are not her actions, they are someone elses. When she talks on the phone, she mimics what she sees at daycare and at home. She mimics what she hears and how people communicate on the phone. Interestingly enough, the only time that I hear a different inflection and see a different part of her personality is when she is on the phone. Is the phone some sort of defense mechanism? On bad days, she seems to talk to whomever on the phone so much more than on good days. When she is agitated, is that her escape? But she doesn't always do it when she is agitated, she does it when she is in a good mood too, just not as much.
5) The cognitive piece just isn't there. I remember saying to her SLP last summer that it seems like she has really lost a lot of big pieces of learning. Some things are right where they need to be (throwing a ball, kicking a ball, dressing herself etc), but some things are not. At all. She does so many things inconsistently. Like she cannot access the knowledge that she has all the time. It's only some of the time. For example, she can tell me for a week straight what the color purple is, things that are purple, grabbing the purple cup etc. But the next week, she looks at me as if I have grown a second head. It's almost like she cannot understand what I am asking her to do ("grab the purple cup"). It's like she's a totally different person.
6) She is very inconsistently particular about things. There is no one thing that consistently sets Catherine off. One week, it can be that she has to have her puppy to sleep. This week, she could give two shits about the puppy and I hope that doesn't change because I have no idea where the damn thing went. She demands things that cause meltdowns that can last for hours one week, and the next week, she really could care less.
7) Sensory: there are a lot of sensory things that come to mind with Catherine. First off, she cannot stand being a little wet. She can immerse herself in the pool just fine (and she LOVES it!), but she cannot handle it if she spills water on herself at supper. She HAS to take off her shirt. She loves playing in the bathtub. She loves letting the water run over her hands when she is supposed to be washing them. She loves lotions and hand sanitizer and the feeling of being rubbed down by sunscreen. She rubs her blanket lightly and delicately when she is with her blanket, but furiously when she is agitated. When she is severely agitated, she puts it in her mouth.
8) She is fascinated by babies that are crying. And not in a good way. In the depths of my soul, this scares me a little. She will haul off and hit just about anyone, but it seems as though she is out to torment babies that are smaller than she is. She will hit and kick them, push them into things, yell at them. It's like she needs to have control over it. Beyond that, she loves to watch babies crying on YouTube. We have yet to switch all the tablets and old phones over to KidsTube, but I have noticed more and more that she likes watching videos of people crying. And not even sobbing. Wailing almost, like the individual is tormented. Babies crying at the sight of bubbles, or because they hate the bath. Older kids crying because their dad is coming at them while playing the Jaws theme on a tenor sax (and they are truly terrified).
9) Sometimes, it sounds like she is incredibly tormented. Especially her crying and tantrums. Like she wants to get out of her head, or get away from the body she is in. It's incredibly sad.
10) 4:00 is the witching hour. No matter how great of a morning or afternoon she has had, 4:00 starts the dilated pupils, followed by either extreme or slight ADHD, which is accompanied by little or no aggression (this is after a month of antibiotics, by the way), which is then followed by severe separation anxiety, where no matter what, she has to be WITH me. Sometimes it's very short-lived, but sometimes it can last all night and it. is. tough.
11) It's almost like she has poor muscle function. Like her muscles don't move in the way that she wants. Although she is starting to RUN, it is not fluid. It is smoother than it has been in the past, but there are still times when it seems like she just doesn't have the brain coordination to get her body to do what it needs to do. Beyond that, her hair is so thin and it seems like her bones are so brittle. Like she's frail. (We are hoping the nutritionist can help us with that)
Just these eleven things made us cross the line from where we were to where we are today. It took us awhile just to get through these four things. They were difficult to talk about, it made us sad for our daughter, and overall, it's just a super shitty situation. Here we are in the middle of a disease that manifests itself as something different in almost every single kid. Not to mention, with each subsequent illness that Catherine gets, the symptoms get worse. And then new symptoms appear as old ones go away, and it's always a guessing game.
I then posed the question, "What do we love about Catherine?"
We were silent for a long time. That was also a harsh reality. Here we were, two loving parents, talking about the child they created together in the eyes of God, and we can't even come up with what we fucking love about her?
It was nearly impossible, but Eric broke the ice, and from there, we realized that we loved her in ways we didn't know.
So here is what we came up with:
1) She is starting to be able to open up and actually RUN. Like, RUN. And it's not a weird loping like it has been in the past, it's an actual run. Her hair flying behind her, a smile on her face, RUNNING.
2) She LOVES swimming and I love that I can share that with her.
3) She LOVES dancing to music and listening to it, and I love that I can share that with her too.
4) She loves to cuddle in the mornings and I absolutely love cuddling with her. She's so small, she fits just right and it's the most amazing feeling. I will be sad when she grows out of that, but for now, I love cuddling with her.
5) She can be so concerned about other people. We definitely think that among the aggression there is a big heart.
We also came up with some random positives:
1) She is very in tune with other people. When she is not flaring, she is a GREAT helper. She loves playing dress up and doing very girly things that make her feel important.
2) She loves showing off her outfit of the day, even when she didn't help pick it out. It's hilarious. She will grab someones attention and then fluff her hair and rub her hands down her belly. HILARIOUS>
3) There is a sense of humor in there. Sometimes, she can be very funny. We think it's important to her that she be admired for things she can do well. I think the sense of humor will be that for her.
4) She likes praise, obviously.
5) She likes to have her picture taken (now that we have been on antibiotics for a month) and she is starting to take directions better. I don't have to tell her things several times.
6) She is SO motherly. She does everything I do when she gets her baby out. Puts the baby in teh stroller. Puts her purse on the handle. Walks her baby down the sidewalk. She is so independent when it comes to that. She loves playing pretend with her babies, which is totally normal (hallelujah!). She loves to put them down for a nap, complete with closing the door on them. She loves pushing the stroller and setting up food for them to eat. It's hilarious. i love it!
That hour and a half conversation last night took a lot out of us. We laughed, we cried, and we admitted that we are at the point where Catherine is not going to catch up. There. I said it. I really don't think she will. It's not a "woe is me" self-fulfilling prophecy, it's the hard reality of where we're at. Catherine operates at about an 18 month old. In most of her actions, thinking and speech. That isn't something that you cure, that's something that you manage.
And so here we are. Managing...
Last night, we acknowledged that Catherine is not easy to love, but we still love her, and there are some positives to our little girl that we have lost many nights' sleep over. But we are still forging forward. And I will continue to be the best damn mother to Catherine that I can.
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