Perspective and Letting Go

I started writing this at the end of the November, and had to stop. I'm now going to finish it and publish, and leave it behind in 2012.

This has been a hard month. We are now - hopefully - seeing the light at the end of the tunnel. Yesterday, I breathed easier for the first time in weeks. I felt relaxed and happy, and it had been too long since I had felt this way for a whole day, instead of five minute increments.

A few weeks ago, Kaitlyn suddenly became very clingy. By the end of the first day of this, I couldn't walk across the kitchen without her holding onto my pant leg and whimpering. This was very unlike her, and it worried me.

Bedtime became a nightmare -- she didn't want us to leave her alone in her room after our usual bedtime routine. We have gone through phases of this, but not at this level. Something seemed "off."

A couple of days of this, and when I came home from subbing on a Thursday (Jeff stayed home with her), I noticed that she seemed restless and figity. I watched her standing by the couch, and every 10 seconds or so, one leg would jerk up, then the other. I quickly noticed that she was also making other movements, such as hitting herself in the stomach a few times, and sometimes in the head. She was pacing a bit.

Something did not feel right to me. Mama instinct was telling me that something was very wrong. She had been going potty more frequently for the past few days, so we thought maybe she had a UTI. We hopped in the car to go to the walk-in clinic -- not my favorite as far as care for our kids, but it was 6:00  and the pediatrician was closed.

Upon arriving at the main building, we were informed that there was a Seattle Children's Urgent Care office down the hall -- new in the last year, much to our surprise. Relief. We checked Kaitlyn in, as she whimpered and cried and didn't want to eat her snack -- add that to the list of "off" behavior.

In a nutshell, they did a quick UTI test and said that, since there were "suspicious" findings in her urine, it was most likely that. Both Jeff and I were SO relieved to hear an explanation for this scary behavior. It made sense at the time -- she was uncomfortable from a UTI, and was restless because of it. We took home some antibiotics, remarking all the way home about how much better she'd feel in the morning and how awesome it was that the urgent care was there.

3:00 in the morning: Kaitlyn wakes up screaming and crying. I run in and get her out of bed to have her walk to the potty. She begins rapidly pacing back and forth in our bedroom, kicking her legs repeatedly, hitting herself in the face, head, and stomach, and looking right past us. We couldn't get her to talk to us. Thus began the scariest week of my life.

The next morning, Jeff stayed home with us, and we decided we'd hit the Seattle Aquarium, since Kaitlyn seemed "better" when she was distracted and able to move around. We had a great morning. She seemed to be more herself, and again, we kept repeating what a relief it was that the meds were kicking in and she was feeling better.

I tutored that evening, and had a voicemail when I got back into the car. It was the clinic, letting me know that it was not a UTI as they had thought. The labs came back normal.

My legs went numb, I started shaking, and I called Jeff. "She doesn't have a UTI; something is seriously wrong and we need to take her back to urgent care." Meanwhile, Kaitlyn was inconsolable in the background, wanting Mommy.

I got home, and she was worse. Walking in circles, walking on bent toes, hitting herself, crying, not eating. At one point she looked at me and whimpered, "I just want to be happy again." We headed back to urgent care. We were there for over an hour, talking to the doctor (me, while Jeff and K walked around), getting blood drawn (Jeff and were both holding back tears, but all our big, brave four year old did was turn to the nurse and say "Hey!" when she poked her), and a nose swab (awful) to test for viruses. I had a doctor telling me that this was something that could work its way out of her system on its own, or this could be something that we are going to have to deal with long-term. I could not imagine this, as she was barely able to function in this state. The urgent care doctor was writing words like "neurologist," "psyciatrist," and "psychologist" for me to take back to our pediatrician. There was nothing else they could do at that point.

 I have never been so scared in my whole life. I have bad anxiety, and I have diagnosed myself and my kids with pretty much every disease imaginable. I'm used to being able to look to Jeff, or others, for reassurance. This time, everywhere I looked, I saw worry and tears that matched mine.

I kept thinking about her birthday party, just a week before, when she was SO excited...greeting her guests at the door with a squeal, running around in her pink tutu and leotard that she had deemed her "birthday outfit," and beside herself because it was HER birthday. She was FOUR. I wanted that little girl back. For some reason, I couldn't stop looking at her art easel, from Grammie and Papa, that she had spent days standing so patiently at, painting and drawing. She was obsessed. Now, there was no way she could stand still long enough to enjoy it. I would have given anything at that point to have her ask me to take out the paint -- the paint that makes such a mess, but made her so happy just days before. I couldn't get that out of my mind. I want to see her excited again. I want to see her at that easel again. I'd even welcome one of her epic tantrums or her smacking me when she didn't get what she wanted. I would give anything, I would feel every ounce of her discomfort and pain and more, to take it away from her.

I don't ever want to feel that way again. More improtantly, I don't want one of my kids to ever feel that way again. I couldn't do anything for her. I couldn't take it away. I was so, so scared. Jeff was scared, our parents were scared. The doctor at urgent care told me that she hoped to hear that this had gone away. Worrying about your child is awful -- there is nothing else like it in the whole world. It takes your breath away. Nothing else matters. Nothing. You start to think of all the silly things you thought mattered before. Things you stressed about. And you realize that nothing in the whole world matters other than your baby getting better.

We went through three solid days of this hell. She hardly ate for three days (she would try, then spit it out halfway through a bite because her "mouth wouldn't let her eat it") and had intense anxiety. Our one silver lining through all of this was that Kaitlyn was still talking to us, and was still as smart as ever. She still wanted to do everything from before, but would start to try, then give up because she couldn't stay still to do it. It was hearbreaking. I slept with her for four nights, and I would lay awake staring at her when she was finally asleep, because that was the only time she looked like the little girl I knew. Relaxed and peaceful, instead of a pacing ball of anxiety.

Then, we started seeing slow, but steady improvement. Each day, she would get a little better. 

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It is now January 14th, and our Kaitlyn is back, for the most part. She still has heightened anxiety, and some days are better than others. I believe that she has some post traumatic stress -- this event was, without a doubt, very traumatic for her. She's always been sensitive and a bit anxious anyway, so it makes sense to us that it is taking a while for her to let go of this. I wouldn't be surprised if this stayed with her for up to year, or maybe even more. She seems to be having little panic or anxiety attacks, and we can tell this because her response is to ask us to take her "pretemperature." She must connect taking her temperature to being sick. And, if she doesn't have one, she's okay. Little things can set this off, and some days it doesn't happen at all. She's also still just..."wiggly." Again, some days this is more pronounced than others. She moves her legs and seems figity, but it's nothing at all like it was, and it does not affect daily activities or doing what she wants to do. She also still has a heightened sense of smell.

We have been to a pediatric neurologist at Seattle Children's Hospital (can I just give a quick shout-out to them for being absolutely awesome?!), and after talking to us at length and checking Kaitlyn out, he concluded that as long as she's still improving, we just keep watching. He did not see a reason to put her through the MRI process at this time, which was a relief.

That was in December, and now I feel that we have hit a plateau. This isn't necessarily a bad thing; it just means that I think we are in more of a place to evaluate her current state. We now have a refferal to an OT (Occupational Therapist). I am suspicious that she may have some sensory integration issues. I think she's always been sensitive, and I believe in my mama heart that the vaccines she received three days before all of this started, triggered something in her system that was already there, and made it a lot worse for a few days. This may all be something to go into more detail about later -- or not, depending on what happens from here.

The most important thing is that we are moving forward. We have to. We are continuing to pursue answers to a certain extent, but we could not stay in the state we were in before. I was a complete wreck for over a month, and was barely functioning myself. I hate to admit this, but I would see pictures and comments on Facebook, etc., and just get angry. I didn't want to see  or hear about everyone else's "normal" kids. It's crazy what events like this will do to your thinking...I actually had moments when I felt like people were rubbing it in. I obviously know now (well, shortly after) that this couldn't be further from the truth, but I was in a different state of mind then. After listening to many, caring voices telling me to take care of myself as well, I visited my doctor and got some help with feeling normal again. I honestly couldn't remember how to calm down and relax -- I needed someone to remind me. After that, I finally felt human again.

Through all of this, I (we) have gained valuable perspective. We are some of the lucky ones. We aren't sitting next to our child in a hospital bed, waiting for her next surgery or round of chemo; our smart girl hasn't lost anything cognitive and is back to doing everything she did before; and she is with us. We get to snuggle her. We get to laugh with her. We get to deal with her tantrums and undying stubborness. We get to watch her play with and love her little sister. We get to tuck her into bed every night at home. Bedtime is getting better again, and on the harder nights I repeat to myself, "It could be worse, it could be worse. Two months ago, I would have given anything to have her climb out of bed 50 times and not want to go to  bed just like so many other four year olds. I've got this."

Sure, those silly worries and cares make their way in, but I'm not trying to change human nature; I'm just trying to keep the perspective that this whole thing has given us. When I catch myself complaining, I try to stop as soon as possible. Enjoy little moments as much as you possibly can, because they really and truly could be taken from you at any moment. We will forever be counting our blessings that Kaitlyn came back to us.

I am not going back to edit or revise this. I wanted to get it out and be done with it. I'm sure I've left things out, and some of it probably doesn't make sense. I couldn't decide if I wanted this experience in our 2012 book or not, but at the end of the day, it was all part of it. I'm letting go of it and looking forward. We don't know what the future holds, but we do know that it's unpredictable and therefore, we should cherish the moment.

K brought her camera (from Mama and Daddy for her bday). It was pretty cute, watching her take pictures of the sights.

Sassypants

They got to feed the sea anemone in the touch pool. They hold the seaweed up to them and they grab it. A highlight for all of us. :)

 Kaitlyn was "calling to the seals," as she put it -- made my heart burst this day...

Makya's mom, Cammie, dropped her off on a day shortly after K had started improving. It was SO good for her to have a friend over and I could tell that it made her feel more "normal." They played all day long. It was an incredibly encouraging day for us.
 

Here's to a new year. :)