Yay/Boo

Let's start with the YAY news, KayTar graduated from physical therapy today! :) Two weeks ago, her therapist did a re-evaluation of her abilities and she was either at age level (upper body gross motor) or within a year of her chronological age (strength, agility) for most categories...balance was just a bit shy of that range, but almost to the 5 year level, I think. Balance is her biggest struggle. She has been in PT since about 19 months of age, when she was functioning at a 10 month old level, only lapsing when we briefly lost our insurance coverage, but for the next 6 months she is going to be PT-free, because of the excellent progress she has made! She was last tested a little less than 6 months ago, and she has gained over a YEAR'S worth of physical development in that time! We have exercises to do at home in the meantime, but being down to one therapy appointment each week is going to be nice for us. I won't have to pull her out of school twice a week in the fall. I also mentioned that we are looking into getting a medical stroller/wheelchair for KayTar because she just can't walk on her own for long periods of time when we are out and about, and she will outgrow her stroller soon, and the PT said she'll still be able to help with that. She's going to talk to KayTar's old OT, who runs the wheelchair clinic, and we'll try to get it worked out. The computers were down today, so she won't get her certificate until next week at OT, but I'll be sure to post a picture of her with it...maybe standing on one foot, which she is now able to do for about 5 seconds! :)

Now for the BOO news. Both kids had a dentist appointment today. BubTar's went excellently, no cavities, no worries. KayTar's started on a good note, no cavities and she actually let them get 2 x-rays, which is a HUGE success...but once it got to the cleaning part, things rapidly declined. KayTar quickly accumulates build-up on her teeth, the dentist thinks it has to do with the consistency/mineral content of her saliva, but BubTar does not have the same issues. On the plus side, she said it will make her less likely to get cavities, but because of the build-up, they need to use The Cavitron to scrape her teeth. It is like a dental hook that vibrates and shoots water out the tip. It made KayTar lose her freakin' mind today. She tried to let them, but it panicked her too much, she got so upset and frantic it was like she was a feral animal...kicking, pushing, SCREAMING. It pushed her past the point of rational behavior and made me have  flashbacks of the early days of testing with her, when she didn't understand what was happening and was panicked all of the time. It sure freaked BubTar out to see her like that. After, he said, "Whoa, that's the ONE thing I'm braver than KayTar about." The dentist tried very hard to clean her front bottom teeth, but we just had to to throw in the towel. I was shaking when we left, just because seeing KayTar like that again made my adrenaline skyrocket. Whew. It was difficult. We're going to have to find a dentist to do sedated cleanings if we ever want to get them really clean. She is so compliant now, even when she doesn't like something, that I know that this ISN'T a kid being difficult...this is a kid literally scared out of her mind. She has major sensory issues and what might feel like a little tickle to us, kind of feels like you are trying to kill her from her perspective. I have to respect her limits, so we'll have to try to find a dentist who can work around them, too. After, she told me she would rather: have surgery, have labs drawn, or have shots, than have her teeth cleaned again. I don't know if there is anything on the planet she would chose a dental cleaning over. At the end of the appointment, when she was in her right mind again, she said, "I'll come back and let you finish my cleaning when I am 16." Oooh boy...let's hope we find a solution before then!

Wordless Wednesday: Self-Modifications

At the beginning of the year, I asked KayTar's PE teachers how she was doing in class. They told me she always enjoyed participating and if she couldn't do what the other kids were doing, she would modify it for herself. This photo was in the book her teacher made for her at the end of the year and is a perfect example of one her self-modifications. Can she hang upside-down like her peers? Nope! No problem, she'll just find her own way to hang with them.

Swimming!

KayTar is now swimming all on her own (as of May 30th)!

Bye bye, Tooth #6!

KayTar lost her 6th tooth while we were on vacation this weekend. You can already see the new one peeking out! It was quite the production...but more on that later. She has lost four on bottom and two on top already!

Look who is riding a bike!

Yup. This handsome guy.





And one of KayTar for good measure.

Disclosure.

BubTar is my shy guy. He is such a smart kid, but he doesn't fit in easily at school. He makes straight A's (and many of the kids in his class are in second grade for the second time), he always has his nose in a book (he is the only kid in his class reading chapter books...and his are on a 5th grade level on average), and our family is quite strict compared to the other children in his class (he watches Disney and Nick while his peers are talking about movies like Orphan and TV shows like Family Guy). He is awesome...funny, intelligent, and sensitive...but he feels like he's on the outside at school. He has one best friend from his previous school, they've been friends since Pre-K, but hasn't made any good friends at school this year. He is friends with the boys he is in scouts with, but hasn't made any close connections. Although he has had a good year, it has been a sore spot for him.

At the district Pinewood Derby meet, he met another wolf cub from a local pack, C. It was so easy and they were instant friends. Turns out, C lives on our very street! They are so similar, both shy, intelligent, funny, bibliophiles who read well above grade level. They play the same games, read the same books, have the same temperament. The second time they saw each other, C said, "BubTar, I'm so glad you are my friend. I don't have many." It was SUCH a BubTar thing to say. Not only are the boys VERY similar, C has a little sister, E, who is FIVE. E is outgoing, bubbly, hilarious, and JUST LIKE KAYTAR. The night before BubTar's birthday party we took the kids to movie night at C and E's church, and KayTar and E were instant friends. It was quite amazing...like someone took our kids, made a copy, tweaked one or two details, and TA DA! C and E were created. Every time we see them, we discover a new similarity. It was exactly what BubTar needed.

A couple of weekends ago, we invited C and E over for the evening. We had dinner and the kids played, the boys played Wii with Josh and the girls played dress up and threw a ball upstairs. The next day, BubTar and KayTar were invited to C and E's house. This is a huge deal, because KayTar has never, NEVER been anywhere without a family member or a trained medical professional (she goes to school and camp in the summer, but both those places have her medical history and are trained to handle her emergencies). To be honest, I didn't want to let her go. I was nervous, but she wanted to go so much and I couldn't tell her no. BubTar was going to be with her and he knows how to take care of her, so we decided she could go. We tube fed her, checked her glucose and ketones, gave her Albuterol, and dropped her off. The only instructions I gave were to make sure that IF she ate (and she probably wouldn't) the label needed to be checked to be sure that it did not contain tree nuts, and of course to call us if they needed anything. That was it. No mention of episodes. No mention of asthma or feeding disorders or tube feedings or unilateral hearing loss or light sensitivity or gross motor delays or sensory issues. I didn't give her whole history, all the worries, all the things that could possibly go wrong. I could have said all of that...maybe I should have...but I didn't. KayTar has really grown into her own this year and many days, MOST days, none of that is a major issue. I decided that for one day, for 3 hours, she could be a normal kid. KayTar knows her own limits, if she needs help doing something because of her motor delays, she will ask. If she doesn't want to eat something, she won't. If something triggers her sensory problems, she will withdraw from it. If she starts to feel sick, she will tell an adult. If she can't hear you, she will tell you to talk into the ear that works. If the sun hurts her eyes, she will ask to go inside. So I stepped back and let her take the lead. And it worked. She went, she played, she had a great time without a single issue.

It is difficult to know what to do in these situations, do you share too much and risk setting of alarm bells that don't need to ring? Do you stay quiet and not provide information that might be pertinent? Where is the line drawn? For us, in this situation, this worked. It was only a couple of hours. We were down the block and if anything out of the ordinary had occurred, we'd have been there in seconds. BubTar was there and he knows all about KayTar. She had been medicated and tube fed before going, the odds of anything happening were incredibly slim. I still worried, my baby was in a new environment without me, but I think we made the right call. As KayTar continues to grow, it will be a situation we find ourselves in more and more. How much do we share? When is appropriate to explain everything, when should we hold back? When do we let her take the lead, when do we step in? When is sharing everything a necessity and when is it a disservice to her? I don't know that we'll ever have the right answers to these questions, but I think it will be something we're having to ask ourselves more and more as KayTar enters her grade school years.

2009, the year that rocked.

I thought about doing one of my annual wrap up posts this year, I started writing it even, but then I got sidetracked reading my first post of 2009. It was such a hopeful and happy post, full of the joy at the emergence of the child we've gotten to know so well this year. In it, I said this:

I have spent years worrying over her cognitive development. When she was still silent, I wondered if she would ever speak. When she began to speak, I wondered if it would ever be natural for her, or if she would simply parrot and label forever. When her vocabulary began to grow, I worried about her comprehension and cognition. Over the course of the past year, those worries have fallen away, one by one, and what has been left in their wake is an intelligent, well-spoken, beautiful little girl.

According to the post, last New Year's Eve, my friend L looked at me and said, "She's going to be brilliant, you know." And this year, we do know. Everyone who knows her knows. This year she IS brilliant. She has blown our hearts and minds more times than we can count throughout her life and especially over the past year. It is hard to believe, looking at her now, that she was ever that closed-off, lumpy, silent 18 month old, or the 2 year old not yet walking or talking at her party, or the 3 year old who only used scripting. It doesn't seem possible that she was ever anything other than this intelligent, hilarious, joyful, bubbly, amazing kid who is filling every corner of our lives with goodness and light.

2009 was the year we stepped out of the dark cloud cover of the frightening unknown and into a well-lit world that mostly makes sense again. Her developmental gaps have closed, the episodes have tapered off, she hasn't been to the pediatrician in over a semester, most of her specialist appointments are now only an annual event. We don't have a whole lot of answers still, but the questions seem to matter much less now. 2009 gave us back a sense of normal-people normalcy, and though we might never have a life without specialists and tube feeds and a laundry list of medications, this new stage of life with KayTar was well worth the wait. I can hardly wait to see what 2010 holds for us all.

2006, the year this blog began.
2009, the year that rocked.

She's wearing underwear today.

If you've been reading this blog for any amount of time, you probably know that I have a 4.5 year old who previously had global developmental delays but now only seems to have ONE major delay, POTTY TRAINING. We have tried and stopped, tried and stopped, tried and stopped. KayTar has chronic constipation (and a level of intelligence that makes bribes and other motivators a little bit beneath her) and every time we have tried, she has ended up badly constipated and we've had to quit. Honestly, though, she has never been too terribly motivated to use a toilet. She has even been known to say that it would be too much work to use the toilet all of the time, why stop and potty when you can keep playing?

You can imagine my (delighted) surprise when she walked into my room yesterday and said, "I'd like to wear underwear. This diaper feels like PAPER! Ugh!" I said, "Okay, sure." And she said, "I mean TONIGHT." in a tone that suggested that I get up NOW and put her in some underwear, STAT! She used the toilet and then she put on undies. She stayed dry and clean until bed. We then put her in a diaper for overnight, but she woke up dry this morning and used the toilet. She insisted on underwear at school today, too. We will see how it goes!

We always said it would have to happen this way, one day SHE would have to decide it was time, we just never really believed she would get there! I was shocked when she came in and demanded some underpants yesterday. I'm sure it will take some work on all of our parts, but I've got my fingers crossed that it is important enough to her to stick with it this time and we will be able to work through the other issues, as long as she is motivated to keep trying. This might be it!

Wish her luck!

You tell me...

This time last year, KayTar was approximately 29 pounds and 37 inches tall. She was wearing a size 3T and could still fit into many of her 2T clothes.



This time last year, we were in quarantine, preparing for a feeding tube placement.



Today, KayTar is approximately 35.4 pounds and 41.5 inches tall. She wears a size 5. In one year, she has gained almost 6.5 pounds and grown 4.5 inches. She went up two clothing sizes.





What do you think made the difference?

In KayTar news...

They are in the process of testing KayTar's reading and comprehension levels at school. So far, she is up to a second grade level for both. They are still testing her, little bits every day, because she is still just a four year old. Everyone at school knows her now, the little smartypants from Pre-K who can read anything you put in front of her. At morning drop off, random teachers from other grade levels shake my hand and say, "Oh! You're KayTar's mom! She's so wonderful!" I picked her up early from school last week and the office staff said, "We were just talking about her!" That kid knows how to make an impression. They don't know what to do with her! Her Pre-K teacher says she is somewhat bored in class, she isn't only advanced in reading, but across the board really. If nothing else, they plan to put her in reading group with an upper level class. The trick will be challenging her, but not placing her with kids TOO much older. She may end up in a reading group in her brother's grade level. Her teacher is using her in a presentation for the staff this week about how children with special education levels CAN be intelligent and successful in school. My little KayTar, she just flattens those boxes they so like to put children in.

She has been sick this year, almost since the start of school, but has only missed one day so far, which is a vast improvement from last year. Josh hasn't slept in our bed in at least a week, KayTar's breathing has definitely not been at its best, which is the biggest problem, and she can't be trusted to sleep on her own when she is like this. One night last week, she vomited in her bed upstairs and was just laying there, on her back with vomit on her face when I got to her. It would just be so easy for her to choke. We've been putting her to bed in her baby papasan chair (still the best money we've ever spent) and around midnight I move her into my bed. This weekend she has been getting worse, one evening I had to restrict her from everything (including her brother), in addition to her meds, to get her breathing under control. Though, today it seems to be better. (KNOCK ON WOOD) We'll see how this week goes, I hope she doesn't bring home any new little microbial friends!

Of course, THIS is the milestone she is early on.

That little tooth came out all on its own tonight! It has been wiggling something fierce lately, but we've told her to leave it alone. She's so YOUNG, she can't be losing teeth already! Tonight while brushing her teeth Josh said, "Uh oh, it's gone!" I made KayTar spit into my hand and there it was amongst the toothpaste bubbles. Her first baby tooth is out, just like that. Of course, I looked it up (because it seems so early!) and though 5 and 6 are the most common ages to lose baby teeth, as early as 4 or as late as 8 is still considered to be normal. I had no idea!

Now, if we could only get her potty trained, eh?

****

This is what the Tooth Fairy left her, along with a dollar!

(click to enlarge)

She can swim!

This is the first physical milestone KayTar has achieved on anything remotely resembling a normal developmental schedule, and I think it is even a little bit sooner than the average! We are pretty proud of her!

First Day/Last Day

This is what I planned to post last Friday, before my blogging plans were precluded by that rather nasty episode. Friday was KayTar's last day of the first year of KayTar's school life. She had such a wonderful year and when I said goodbye to her teachers I had to pretend that it wasn't the end of the year to prevent myself from crying. They've been so wonderful with her and we will really miss them all, her teachers, her aides, and all the other teachers in the PPCD department. They've all taken a shine to KayTar, and she to them. I'm looking forward to her new program next year, but I hope the staff is as wonderful as the one at her current campus.

I was so nervous when she started school, my sickly, quite delayed, partially deaf, odd-duck of a little darling going off on her own for the first time. It has been wonderful, though, we've watched our quirky little caterpillar bloom into a social butterfly. So many of her developmental gaps have closed and she met most of her IEP goals for the year.

Medically speaking, her hearing loss progressed from moderate-severe to profound, rendering the cute little purple hearing aid useless. She had surgery to have her tonsils and adenoids removed and to have a g-button placed, which markedly improved her health and overall development. She missed over half of her first semester due to illness, but post-op, her attendance really improved. She has gained both height and weight this year, since having her tube placed (you might notice how much shorter her jumper is in the second set of photos, it is about 2 inches shorter on her in spite of lengthening it a bit). Her episodes stopped...and then restarted. She acquired a scary food allergy, which we suspect to be peanuts. We did more testing and still received no answers.

Developmentally speaking, her speech has normalized. The tendency she had to speak in direct quotes and parrot questions back to us is gone. She's fully conversational now and she uses this skill nearly non-stop. She can now walk across uneven ground, such as grass or mulch at the playground most of the time. She can walk up stairs in an upright position, relying on her stronger leg to do the work, sometimes without the handrail if I am scaffolding her. She can jump with two feet off the floor. She learned to write her own name.

It has been a big year for our little girl and we could not be more proud of everything she has accomplished!


First Day


Last Day




Coincidentally, today is MY first day of school for the summer semester. Too much math, here I come! Today starts the craziness that is school on Monday, Tuesday, Thursday nights and volunteering on Wednesday nights, not to mention BubTar's swim team practice on Tuesday, Thursday, and Friday nights. Let's not discuss VBS and KayTar's camps or the fact that Josh is also taking summer courses. Isn't summer relaxing?

Wordless Wednesday: Name

She wrote it for the first time yesterday! I had to help her squeeze the I in, because she forgot it.

Now I just have to teach her to write her pseudonym! ;)

Happy Mother's Day

Photo and video editing at www.OneTrueMedia.com

Two years ago she was just learning to sign and now she's reading poetry to me. I can't believe how far she's come!

My kid is normal.

Okay, so that's a lie. But she is ALMOST normal, at least developmentally speaking, according to our pediatrician at her well-child check today.

She got gold stars of mastery for:

* FINE MOTOR
* COGNITIVE
* SPEECH

She is still delayed in the gross motor arena, but we didn't expect to hear anything different. She was able to do all the tasks she was asked to do, except for standing on one foot without support. She can jump with two feet! She can walk up the stairs without holding on (using one of her legs, the stronger one) if I am behind her to ensure she doesn't rock back too far! She can stand and scoot forward in her skates using a shimmying motion! She's getting there. She still can't run, she still struggles to stand or walk on uneven ground most of the time. Her balance and muscle tone just aren't quite there yet, but she is steadily improving.

She is 39.25 inches tall (50%) and weighs 33.5 pounds (45%)! The tube triumphs again!

She hasn't missed school in 3 weeks!

She hasn't had an episode in (almost) 6 months!

She has even been eating a bit more by mouth!

Basically, you know, HOORAY! Four is off to a wonderful start.

Good things come

If you were to ask KayTar what Santa Claus gave her for Christmas, she would matter of factly state, "No. [nuh-nuh-nuh] Santa didn't give me anyfing."([nuh-nuh] is her audible pause.)

I might then step in and say, "Yes KayTar, remember your dress up trunk and your Disney Princesses?"

She would say, "No. [nuh-nuh] G (my mom) and B (my dad) gave me those fings!"

You see, KayTar does not believe in Santa Claus, at least not in the way most children do. She believes he exists. How could he not with his picture plastered everywhere and his copious appearances both on television and at the local mall? She does not, however, believe he snuck into our house on Christmas Eve and left gifts for her. Her explanation is much simpler and logical. My mother and father spent the night at our house on Christmas Eve, so they must have been responsible for the appearance of gifts.

364 nights a year the four of us go to sleep at night and wake up again to utterly normal giftless mornings. 1 night per year, my parents spend the night and in the morning suddenly presents have appeared out of thin air. The only variable in that equation is the addition of my parents, so logically they must be the catalyst for this differing outcome. Brilliant, no?

****

I have spent years worrying over her cognitive development. When she was still silent, I wondered if she would ever speak. When she began to speak, I wondered if it would ever be natural for her, or if she would simply parrot and label forever. When her vocabulary began to grow, I worried about her comprehension and cognition. Over the course of the past year, those worries have fallen away, one by one, and what has been left in their wake is an intelligent, well-spoken, beautiful little girl.

I don't know that I've done that transformation justice here in this space. The worries have given way to a pleasant silence that I reveled in. For once I didn't have differences to document or a condition to explain, I simply had a child who had, in one area of her development, finally attained much of what "normal" children attain, that and so much more. Then I realized you, all of you who follow her story, may not know that about her. You may not know what a bright child she has grown into, with razor sharp reasoning skills and a mind like a steel trap.

There was a moment in her ECI intake evaluation years ago that nearly knocked me off my feet, the therapist held up two animal flashcards and asked KayTar which was a dog. I expected her to do what she always did--nothing--but instead my silent toddler, my closed off mystery of a child lifted her clenched fist and knocked on the right card. My mind exploded into a thousand shards of light, she KNEW something. In there, under all the mystery and silence, she had learned something. Things were getting through to her, even if she wasn't getting through to us. She identified several animals that day and although her scores were well below her age level, when I called to speak with Josh, that is what I told him first. Our silent and slow baby, she knew something. There was so much more to her than what was readily observable, so much more than the doubts and fears. Every single day, we continue to be shocked and impressed by who that quiet little baby girl has grown into, her once imperceptible abilities have expanded beyond anything we ever thought would be possible.

****

On New Year's Eve, we had our friends over to play games and drink champagne. KayTar was up late, because she is always up late. We set her up in our room with Noggin, so she could calm down for the night and we could have a bit of child-free time. She tolerated it for a bit, but then decided she would much rather be a part of the action. She quietly snuck back into the living room and I called her over.

"KayTar, you have two choices. You can lie in bed quietly and watch a little bit of cartoons, or we can turn out the lights and you can go to sleep."

She replied, "No, no, no. Let me tell you something. [nuh-nuh-nuh] I can have THREE choices. One, watch TV. Two, go to sleep. Or three, play this fun game with you!" Then she widened her eyes and plastered a huge smile on her face. She knows she has to really sell the proposal.

After a few more rounds of extremely logical negotiations, tears, and an quick evaluation of the how-likely-is-she-to-vomit-vs-how-much-do-we-care scale...she won the debate and was allowed to watch the game for a little while. She wasn't awake when the ball dropped, but she still relished her brief victory.

"[nuh-nuh] Am I up right now? Am I watching you play this fun game? Did I have THREE choices?"

She does this every time she wins. It seems like disrespectful face-rubbing to an outsider, but for her, it is simply fact checking. She likes to be sure that is what actually happened. It is not maliciously motivated.

My friend L looked at me and said, "She's going to be brilliant, you know."

We reminisced about the child she was a year ago, sitting at the table with us on New Year's Eve, repeating everything we said and laughing at jokes she couldn't comprehend, mimicking both our words and emotions. Now here she is, fully herself with her very own words, logic, and emotions; our unexpected and most fervently desired gift having suddenly appeared out of thin air.

KayTar's Report Card

Tonight was my first parent teacher conference for KayTar and we reviewed the progress she has made with her IEP goals.

Goal: KayTar will master specific 25-36 month level gross motor skills addressing these identified educational needs: Ascend and Descend Four Steps

*Ascend four steps with help, alternating feet: Not Introduced

*Descend four steps, unassisted, two feet per step: Not Introduced

"Not Introduced" is a fancy way of saying "Oops! We haven't attempted this yet!"

Goal: KayTar will master specific 13-24 month level self care skills addressing these identified educational needs: Attempt to Put on Simple Garments (Pants), Remove Garments (Pants), Indicate Bathroom Needs

*Attempt to Put on Simple Garments (Pants): Limited Progress

*Remove Garments (Pants): Limited Progress

*Indicate Bathroom Needs: Limited Progress

"Limited Progress" is a fancy way of saying she needs lots of physical and verbal clues, as well as physical assistance to complete the task

Goal: KayTar will master specific 24-36 month level cognitive skills addressing these identified educational needs: Take/Bring Familiar Objects on Request, Match Textures by Touch, Sing Phrases of Songs

*Take/Bring Familiar Objects on Request: Satisfactory Progress

*Match Textures by Touch: Not Introduced

*Sing Phrases of Songs: Satisfactory Progress

Goal: KayTar will master specific 25-26 month level fine motor goals addressing these identified educational needs: Play with Playdoh, Shaving Creams, Pudding, and Other Textures

*Play with Playdoh, Shaving Creams, Pudding, and Other Textures: Limited Progress

Goal: KayTar will master specific 13-24 month level socialization skills addressing these identified educational needs: Greet Peers and Adults

*Greet Peers and Adults: Satisfactory Progress

Goal: KayTar will master specific 25-36 month level socialization skills addressing these identified educational needs: Share Materials, Wait Turn

*Share Materials: Satisfactory Progress

*Wait Turn: Satisfactory Progress

Goal: KayTar will employ developmentally appropriate oral grammar in the use of words, phrases and sentences. This will be evidenced by the mastery of:

*Define and Grammatically Use Pronouns (subjective, objective, possessive): Satisfactory Progress

*Respond to "Wh" Questions (who, what, which, where, when): Satisfactory Progress

*Use Simple Sentences with Correct Word Order: Satisfactory Progress

She has made satisfactory progress in 8 out of 12 attempted goals! We are quite pleased with that ratio, although I suspect that if the stairs and texture matching had been attempted, it might be a little closer to a 50/50 ratio.

The teacher's note said, "KayTar is a pleasure to have in my class. She is so eager to learn songs and answer all questions!" The teacher said she is quite the little character in class! She also said that EVERYONE looooves KayTar, even the kids from the general education class (where she has her inclusion time) are very fond of her and stop to say hello to her in the halls and cafeteria. All in all, it was a great meeting!

A little art show

Last night KayTar was sitting at the kitchen table with a pen and a notepad I brought
home from BlogHer. She called me over and said, "Look! I drew Spindella!" (a character from Sunny Patch, if you are unfamiliar) and I was shocked when I looked at it.



It was so accurate! Right down to the pointy nose. It only has five legs, but I think I excitedly snatched it from her before she got to the legs on the right side.

Then she drew another spider with all 8 legs.



Then she said, "I'm going to draw a car." And she did.



Initially it was just the half circle and wheels, but then she said, "I need to draw some windows."

Lastly, she drew this little submarine.



I was so surprised! Last time she drew me a picture (within the last couple weeks) it was just a roughly crafted face, and now here she is drawing these detailed little sketches that actually look like what she intends them to be. Lately it seems like everything comes to her in these short sudden bursts, one day something seems totally impossible and the next she is mastering it. It is such an amazing process to watch.

Once, she was unknowable.

This morning when I told KayTar we were heading to the doctor and she was instantly excited to see our pediatrician, babbling on about things she was going to tell her, but when I explained we were seeing her eye doctor her demeanor changed. She said, "But I don't WANT the eye drops. I don't like to lay on you and have drops in my eyes. Makes me feel SAD. No eye doctor. No drops!" Initially, I was struck by her memory. Although it has only been 3 months since her last appointment, I have never been able to accurately gauge how much she remembers because communicating those memories are a very, very new skill for her. Then, as her words washed over me, I realized that not only had she communicated a detailed memory, she had expressed her displeasure, fear, and sadness. I couldn't immediately do anything about it, because I wasn't sure what our exam would entail, but once we arrived I was able to talk to the nurse and reassure her that there would be no drops today. I was able to fix it for her, to banish her fears with just a handful of common words.

I think about the months and months of poking and prodding and testing and sobbing and fighting and fears, the silent painful merry-go-round we spent our days on for so long, and I wonder what it would have been like if she had this skill then...if she could have told us that the adhesive was making her skin burn, or that she liked to be held a certain way when having a blood draw, or that laying down to have her height taken made her feel like she was going to be strapped down and needled again. We muddled through those days somehow, but I wonder how much easier it would have been for her if she hadn't been locked away with her fears, muted with worry and wordlessly pleading for help. I remember her screams, all the screams, and I wonder what she would have said, what she was trying to tell me. It is easy to assume that if a infant or child can't communicate, tears and wailing simply signifies displeasure, and it does...but the possibilities within the realm of displeasure are vast and varied, how are you to guess which possibility it might be? How do you choose the right words to fight a fear you can't understand? I'd stroke her hair and tell her it would be over soon, tell her I was sorry, so sorry that she had to do this again and again, but I don't know if she could understand me or even recognize the emotion in my voice, if those words meant anything once they passed my lips. We muddled through it, she and I, neither of us truly able to understand the other, but I'm so relieved that today we are finally, finally, speaking the same language.